My life with Migraine

When Does It End?

2010-07-16T09:25:00.006-04:00

I have been away for too long again, I know. It just feels like every time I get ahead, I end up two steps behind.

I was scheduled for shoulder surgery on 5/28. Unfortunately it did not go as planned. I went in to the OR, had the 1st dose of drugs to just sedate me so that I would be less nervous I guess. After that, I know nothing. I woke up to find 1. my surgery was not done and 2. I know have a heart condition!

While getting ready in the OR, they hooked me up to the monitors and my heart was beating at 150 bpm (beats per minute). The normal heart beat is around 70 bpm so you can see why they were concerned! I went into Atrial Fibrillation or "A-Fib". Never a dull moment when I'm around I guess!

So the cardiologist explains what is going on and tells me what the deal is. He was going to admit me to spend the night at lovely St. Clare's Dover Campus when my heart, on it's own, returned to normal rhythm.

The next day I went into the Cardiologist office and had an Echo. The Echo showed that I have a spasm in my inner heart wall - fun for me! He seemed concerned, but not overly freaked. He showed me the spasm which, of course, caused me to freak out!

Long story short, I rescheduled my surgery for 2 weeks later and everything went fine. The doctors had to keep administering Cardizem during my procedure to keep my heart rate down. I am now on this medication daily....along with a baby aspirin.

I have seen the cardiologist since and have also done a halter heart monitor. We are waiting for the results of that before we move forward. It seems that my heart beats at around 100-120 bpms on a regular. My question is why doesn't that help me lose weight??!!??

On to other things....I go back to see Dr. Young at the Jefferson Headache Center on Monday. I really don't know of too many people who look forward to having their head jabbed with needles and numbed out, but for those with Migraine who have experienced the joys of a Nerve Block, you know what I mean! My mother is coming with me for company. This will be the first time she gets to see up close and personal what I go through with my Migraine Disease. How come now at 33 is this the first time she will see this? Well, because I was diagnosed at 24 and have not lived with her since being diagnoses. Yes, she has seen me in pain, taking triptans and staying in bed for days on end, but I don't know if it ever fully hit her how bad I really am. I guess part of me wants her to fully see what goes on at my appointments and hear me talk to a medical professional about my illnesses. I think this may give her the jolt she needs to realize how serious this really is! Throw in the Fibromyalgia and heart condition and you have one sick daughter!

Due to the shoulder surgery, I have been on disability since May - and - still waiting for my checks to come in! I have to say that my head has been much better since not working in the psycho drama that I was working in. I have had no Tension-Type Headaches since leaving my job. I am worried that going back will be detrimental to my health and I'm really scared to do so. I really feel that my current job contributed to not only my heart condition (being under constant stress) but also my daily TTH and Migraines.

Although the Migraines and Tension Headaches are not as bad, the Fibromyalgia is cranking at full speed. I have constant pain in my neck, shoulders, wrists, hands, ankles, hips, and legs. Yeah, that pretty much covers it! I find that especially with the current 90 plus temps, that the Fibro and heart issues are almost unbearable. I really don't know how I can go back to work feeling this all over pain - not to mention hardly even being able to walk 50 feet without being exhausted from my heart. I guess time will tell.

I really do hope to get to blog more often. I think I got so used to not being able to use the computer at work, that I have forgotten all the things I used to do. Hopefully that will change and I will come back here with an update after Philly.

Until then - stay cool and pain free!

So much to say....

2010-04-14T20:29:00.004-04:00

I have not posted here in such a long time! I have so much to catch up on and still don't really have the time right now. The best thing that has happened recently is that I got in to see Dr. Young at the Jefferson Headache Center in Philadelphia!!! He is amazing! I had a nerve block and trigger point injections. They worked better than I thought but are starting to wear off now.

On the down side, I was diagnosed with Fibromyalgia back in February so that is not fun, but at least now I know what the deal is and why I'm always in pain (other than just my brain).

I am going to need to have some shoulder surgery soon - that should be exciting. I also need to set up time to go back to Jefferson for the IV Therapy clinic. Dr. Young thinks it would be very beneficial.

I hope to get back on here and write more soon. I just don't have enough hours in the day with my job and my health as of late.

Hope everyone out there is doing well!!!

Lumbar Puncture - the good, the bad, and the very painful

2009-09-15T11:26:00.004-04:00

It's been a month since I had my lumbar puncture. It has taken me a while to feel "normal" again - although my normal and a healthy persons normal are two very different things.

I wanted to get my experience about my LP out there because if one other person can learn from my experience, then I feel like my experience was worth it.

Let me start by saying the lumbar puncture itself went great. I didn't feel a thing. It really was one of the easiest tests I've ever had done. I would even say it was easier than a CT, just because I didn't have to take off all my jewelery. I was having a lumbar puncture to rule out Pseudotumor Cerebri, aka, Idiopathic Intracranial Hypertension. IIH is increased spinal fluid that can trigger Migraines. I had quite a few of the symptoms: no trigger Migraines, tinnitus (ringing in the ears), headaches or Migraines upon waking, preventives that did not work, or worked for a short time, neck and shoulder pain, pain behind the eyes and nausea.

So I have the LP which, as I stated went very easy. Actually, the test itself was fantastic. I get back to my room feeling great. I'm laying down, which I was told I would have to do for at least two hours until they would release me (I did this as an outpatient in a hospital, which is where most of these tests are done).

I was feeling fine for the first hour or so.....then the pain started. The head pain was not like my typical Migraine or Tension Headache pain, this was different. It felt like the cloggy feeling you may experence when in a plane - but to the extreme. I let the nurse know and she wanted to give my Tylenol - yeah, Tylenol. I don't even take that for a TTH, much less THIS! I thought it would pass or not get worse. The nurse left and I took a Vicoprofen that I had with me.

On the way home (the hospital I went to was about 45 mins away from my house), the pain increased. I had Shawn stop for a bagel and some tea, so I could at least eat for the first time that day (it was about 1 or 2 pm by then) and also have some caffiene. My doctor had said caffiene may help with the spinal headache.

I rested the rest of the day - the Vicoprofen did nothing. The next day, Saturday, I felt a little bit better - at least for a while. By Sunday, I could not lift my head off the pillow without getting sick. The pain in the back of my neck and head upon standing was so intense, I would vomit almost immediately.

I spoke with a friend of mine who I knew had some difficulties with this test and she said go to the ER and get a blood patch. I called my doctors office and spoke with the covering doctor, who said my doctor would be doing rounds in the morning, and if I could wait, go to the ER first thing Monday.

Monday morning we were back at the hospital. I could hardly stand or walk and the only way I felt halfway comfortable was laying down flat.

The doctors took me in right away - pretty much as soon as I was checked in. I got some Zofran to start with an IV and went up to have the blood patch. For those who don't know, a blood patch is when they go back into the spine, just above where the LP was done, and inject your own fresh blood back into your spine to help stop the spinal fluid from leaking. Most of the time your body will heal quickly and close over the hole from the LP, but if not, a blood patch can fix that.

I was told to sit upright with my legs hanging over the bed. I crouched over and hugged a pillow as the doctor numbed the area with lidocane. By now, I had an IV in my right arm and the doctor was taking blood from the side of my left arm. He injected 20 CC's of my blood into my spine and said I may feel pressure when he does this. I felt the pressure, but also relief. My head was feeling better, or so I thought.

Again, I though I was "good to go". I returned to the ER - now taking 2 full bags of saline in less than an hour and a half. I was so dehydrated from getting sick all day, every day, for the last 2 days. I went home and rested thinking I would go to work on Tuesday and everything would be fine. Wishful thinking!

I went to work on Tuesday - even drove myself! I felt ok in the morning, but by about 11 a.m. I could tell I should not have attempted working. I was bent over my desk between trips to the bathroom to get sick. I called Shawn to pick me up. I stayed home on Wednesday and again thought I was o.k. to return to work on Thursday. Wrong again! I had called my doctor during all of this - and spoke with a covering physician. I did speak with my doctor on Thursday, and by that time, I was out of my mind. I was hysterical and didn't know what to do. She told me "go home, stay in bed, and don't even think of moving until at least Monday". And that is what I did.

My doctor also called in a prescription of Prednisone, to help get rid of the spinal headache. I was to be on a Prednisone taper for about 16 days, taking one less pill every four days until there were none left.

By about Wednesday that week, a week and a half after my lumbar puncture, I was finally starting to feel like I was human again.

I wanted to get my story out there to let anyone who has similar side effects know - if you feel as bad as I did after your LP, call your doctor and get a blood patch. Don't wait like I did. I wish I had known earlier, I could have saved myself a lot of pain and money by acting earlier than I did.

So I'm sure you want to know the result of my LP as well, right?

As it turns out, I don't have Pseudotumor Cerebri. My opening pressure during my LP was only 14. Even with the Diamox that I take, that is on the normal side. This was a disappointment to me at first. I thought that having IIH that it would answer so many questions about my Migraine Disease. I thought if I only had IIH, then I can finally treat my Migraines in a different way and know what some of the cause of my Migraines were.

Although I am happy that I don't have IIH, I knew I had to have this test to know for sure if I did or not. The only way to be tested for IIH is with a lumbar puncture.

I do not regret having this done. I would do it again if I had to, but maybe would be quicker and realizing my symptoms were not the norm for the test. Only about 10% of patients who have an LP get a spinal headache. It really was hell for a week and a half, but at least now I know 100% with no question, that I do not have Pseudotumor Cerebri.

30 Things About My Invisible Illness You May Not Know

2009-09-08T11:07:00.003-04:00

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know. So, here it goes:

1. The illness I live with is: Migraine disease
2. I was diagnosed with it in the year: 2002? It seems like a life time ago.
3. But I had symptoms since: I was about 13 - I'm 32 now.
4. The biggest adjustment I’ve had to make is: Not trying to push too hard because I am not super woman and it will hurt tomorrow if I push too hard today.
5. Most people assume: that Migraines are "just headaches."
6. The hardest part about mornings is: motivating myself to get moving since the pain is already there most days.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: my computer
9. The hardest part about nights is: insomnia and nausea
10. Each day I take *_9_* pills & vitamins. - that's what I have to take, if I don't feel well that number climbs quickly
11. Regarding alternative treatments I: have only tried aromatherapy
12. If I had to choose between an invisible illness or visible I would choose: visible, or one with a cure would be even better!
13. Regarding working and career: it's a challenge every day.
14. People would be surprised to know: I have some sort of pain every day.
15. The hardest thing to accept about my new reality has been: not being able to do the things I used to love like having a drink with friends, staying up late, going to a theme park and riding rides.
16. Something I never thought I could do with my illness that I did was: meet so many great friends who share my disease.
17. The commercials about my illness: annoying, stupid, and really don't help explain the disease for what it is. It's very sugar coated.
18. Something I really miss doing since I was diagnosed is: have a few drinks and stay up late
19. It was really hard to have to give up: my former life.
20. A new hobby I have taken up since my diagnosis is: blogging
21. If I could have one day of feeling normal again I would: probably be too scared to do anything since I would regret it the next day!
22. My illness has taught me: to be more compassionate and just because someone may look fine, that does not mean they are not suffering with something.
23. Want to know a secret? One thing people say that gets under my skin is: "We gotta get you a good doctor" or "oh you still have Migraines?"
24. But I love it when people: are willing to learn about the disease instead of judge me unfairly
25. My favorite motto, scripture, quote that gets me through tough times is: "The most authentic thing about us is our capacity to create, to over come, to endure, to transform, to love and to be greater then our suffering." - Ben Okri
26. When someone is diagnosed I’d like to tell them: learn all you can about this disease
27. Something that has surprised me about living with an illness is: how far we have to go
28. The nicest thing someone did for me when I wasn’t feeling well was: everything! My husband bends over backwards when I am sick. He knows if I can't do it, I must feel really crappy.
29. I’m involved with Invisible Illness Week because: We need to raise awareness and get the right information out there.
30. The fact that you read this list makes me feel: a little less alone

Things A Person With An Invisible Illness Hate To Hear

2009-07-29T19:00:00.007-04:00

This is some of the top things I can't stand to hear from people who just don't "get it". It may be geared more twards Migraine, but I really want you all to add things you can't stand hearing in a comment - no matter what ICI you are suffering from.

This one is now a really popular web site: "But you don't look sick" I HATE this! So if I had a cast on my arm or was in a wheelchair or something, that would give me more of a reason to be in pain than the fact that I have a neurological disorder?

"We gotta find you a good doctor" - I have an excellent doctor, thank you. The fact of the matter is, I have an incurable disease, so until you walk a mile in my shoes and feel what my life is like and how hard I try to be well, please, just don't.

I have not had this one said to me, but I hear it a lot from others: "You're just not praying hard enough" or "You need to believe in God". First of all, what my religious beliefs are have nothing at all to do with my illness. I wonder what these people say to a person in their congregation or if their priest or minister has an ICI.....or what about a Nun? They are married to God so they should be really healthy by this persons standards.

This one is Migraine specific: "Oh, you have Migraines? I had one.....once, so I know what you are going through." Chances are, if you've only had one Migraine, it probably was not a Migraine. Saying that you know what I'm going through because you "had one once" is not realistic. I get them and tension headaches on a DAILY BASIS.

"Go to a chiropractor" - Yes, there are some that say chiropractic has helped them. I have been to one myself. I used to go all the time. But they will not cure my Migraines and they will cost me a ton of money in co-pays. Sometimes, a trip to the chiropractor (or even an acupuncturist) can trigger a Migraine. I don't know, I'm a believer in pharmacology! As my friend Kelly says: "Better living through science."

Another Migraine specific one, but I'm sure others with chronic pain hear something similar from time to time: "Oh, you have a headache? I have some Advil." First of all, Advil won't abort a Migraine. Second of all, it won't even touch the type of pain I experience from a Migraine or even a tension type headache. I have triptans, narcotics and muscle relaxers (oh my!) for the pain I have. Your Advil is like a tic tac to me, and if you know me and know that I go to a Migraine specialist every six weeks, along with take a handful of preventive drugs and supplements every day - all this does is make me feel bad about myself and remind me of how sick I really am.

Saying something like "oh, I heard about this new drug they are using for Migraines now on the news!" Chances are, it's not new, it's just the first time you've heard of it. Trust me, if it's about Migraine, I am pretty well read on what's on the market as far as preventives and other treatments. Again, this comment just annoys me more than anything else.

"I have a Migraine" - this one annoys me for two reasons. Either you just have a headache and you are exaggerating or you really have a Migraine and are too lazy to go to the doctor and get diagnosed. This one only applies to the people who misuse the word - not the ones that are diagnosed, going to the doctor, getting help and really know what they are talking about. This one also annoys me because people use it as an excuse to take off sick from work or, even better, drug seekers who know they may be able to score narcotics in the ER using "migraine" as an excuse. Thank you, fake migraine sufferers, for making the peoples lives who have Migraine that much more difficult to get proper treatment because now they thing ALL of us are just drug seekers. It takes a lot to get what we need when we end up in the ER due to having a Migraine for 3 days - and I'll tell you - as I'm sure every other Migraineur out there will agree - if an IV drip of straight up saline would take it away - then that would be what I'd want. It's not about the narcotics - a lot of us say up front to the ER docs that we would rather NOT be treated with narcotics. This is for two reasons: 1. then they know we are for real and not faking it. and 2. narcotics only mask the pain, they won't break the Migraine.

"Why don't you want a drink?", "Why won't you stay a little longer." All of those Why don't you or "you used to" type statements / questions just remind me that I can't drink that much because it will trigger a Migraine, and I need my sleep to stay on schedule as to not trigger a Migraine. Whining and trying to guilt me into something when you already know the reason behind it - especially if I am in pain - just makes me not want to deal. Thank goodness all my close friends have learned enough about what I go through to not do this to me. Some family members, well that's another story.

My friend Heather has a great little signature on her posts over at My Migraine Connection. It says: My disabling chronic illness is more real than your imaginary medical expertise.

I love this quote. It is so very very true! If only people would think before they speak, the world would be a much better place.

I can't wait to hear what you all have to say! I'm sure this is not all of them!

Back by popular demand....well, maybe just back.

2009-07-14T18:57:00.003-04:00

Wow! I have not written in a very long time. Too long....and probably too long to catch up in one post.

On the Migraine front, I am seeing a Migraine specialist in NJ. She is wonderful. I don't think I've blogged since I started seeing her. I forget and due to head pain this moment, I don't feel like reviewing my previous ramblings.

I have been taking Diamox as a preventive. It is a medication primarily prescribed for myopia, but is also used for weather triggered Migraines, and also, Intracranial Hypertension (IIH or PTC) which I have discussed before and convinced I have. I am really going to push my doctor during this weeks visit to order a lumbar puncture for me. I mean, if I'm willing to go through with it, what harm does it cause to order it? At least then I will know once and for all if I have IIH.

The Diamox is working quite well. I do have occasional tinglies in my feet and knee caps, but primarily in my hands. I get the tingles throughout the day, but it's nothing I can't handle. I mean, it has cut my frequency and severity of Migraine down to maybe 3 a month....and that is a high number. Before seeing Dr. M, I was having about 22-25 Migraines a month. This is HUGE!!!!

Currently, we are trying to see what we can do to decrease my tension headaches. I was taking Zanaflex for them, which was working pretty well, but now that I'm on the Diamox - for some reason my tolerance for Zanaflex has decreased. I used to be able to take 2 mgs. no problem.....keep working, driving, not tired, and no pain! Now, since the Diamox, if I take a 1/2 a Zanaflex - I can't stay awake at work. So, I try not to take it while working. I only take it once I am home for the evening. I also take it every night now which has helped my Migraine frequency as well.

As far as life in general.....I recently lost a friend I had reconnected with. She was really funny and I don't remember a time I spent with her when I was not laughing. Kim, the friend that passed, and Sandy, another friend of mine, where around a lot when I was in grade school and starting high school. Sandy lived with us for a while, and she was BFF's with Kim, which is how I met her.

The three of us ended up working at the local grocery store together....ran in the same circles....I was always the youngest and the tag along, although now the age difference is nothing. They are three years older than me, so at the time, they were in high school, and I was in 7th grade. Big difference when you are that age!

I remember that during this time my father had shared visitation with my mom. I would have to go to his house every other weekend and half the summer. This sucked for someone who wanted to go to school dances on the weekends and hang out with my friends. There were no kids up at my dads. It was pretty boring. Kim and Sandy were like my sisters during this time. With Sandy living with us, there was always someone around to hang out with, and with Kim, well, being Sandy's BFF, she was always at the house.

Kim would write to me when I went to my fathers over the summer. I will always remember that. It was pretty much Kim and my friend Emily who would keep in touch those six weeks, which in kid time, felt like FOREVER!!!! When I would come home, we would have ice cream and watch scary movies. I always wanted to know what was up in their love life, because they were older and I could live through them.....since I did not have a boyfriend.....I don't even know if I really even thought about boys all the much yet. I mean I did, but not as a boyfriend I don't think. I just thought they were cute.

I was so happy when the three of us recently reconnected on Facebook. I found out that both Kim and Sandy were married and had children. Sandy now lives where I pretty much spent my childhood, right around the corner from my BFF Emily's childhood home. Kim's family lives right across the street from me practically. Kim and I both got married at Modick park, in the Gazebo. Her husband works for the fire department for our town, and I work for the town at the pound. It was like coincidence after coincidence....except for the kids part! LOL

Kim and I had been trying to get together, since we lived so close. On July 3rd, I had taken the day off because the 4th is our anniversary. I know that Kim and her family hang out at the "Mud Hole" as they call it here, which is the community lake. Shawn and I were coming back from shopping and drove past the mud hole and I said "I wonder if Kim is down there". I was thinking of walking down after we put away groceries to see if she was there. I put away the groceries and went to lay down for a bit. I kept thinking I could hear someone calling my name from the mud hole. I would have sworn it was Kim.

I got up and checked my email, facebook, and all that and saw a status comment from Sandy saying that Kim had passed away that morning. I could not believe it. How? Why? Kim had just lost her mom to cancer on Easter Sunday, and now she is gone too? No...no. this can't be happening. I really did think it was a joke at first until I read other comments and posts from people. I couldn't believe it. She was only 35. Way too young.

Kim and Sandy were very influential in getting me away from my father. He was by no means a "dad". He definitely has/had some mental issues that needed to be addressed. Plus, by this time I had a boyfriend and didn't want to have to go to my fathers every other weekend. I wanted to be with my friends. They gave me the courage to stand up to him and say that I wanted to only go up there when I wanted to go up there and that was that. That was the last time I saw my father for a weekend. I think I saw him once or twice since then - but even so, that was over 13 or more years ago. He only used me to get back at my mom anyway, so it was a destructive relationship from the get go. Probably one of the best things I ever did was get away from him.

This got me to thinking of where I was in my life....where I had come from. Thinking back to where I was then and where I am now. Also, thinking back to another huge moment in my life, when my house was struck by lightening. It was three years ago this past 4th of July.

Since that time, I ended a toxic friendship. I had been "done wrong" by this person once before....fool me once, shame on you, fool me twice, shame on me. I started hearing a lot of things that this person was saying and doing (she was my roommate at the time when the fire happened) and it was not good for either of us to stay friends at that point, even if she didn't see it yet.

I moved in with Shawn, since he was my next door neighbor, renting the apartment on the other side of the house. We started dating pretty quickly and started looking for a home after only dating about 3 weeks! We both just knew. We moved out of that house at the very end of November of the same year - yes, just 4 months after the fire.

Two years ago, Shawn and I got married on the 4th. We just had our second anniversary. We will be together for three years on August 13th.

I am one of those people who just don't want to ever regret things in my life. I don't regret anything thus far, since it has made me who I am. I feel like my life has had so much suffering that Shawn is my prize for enduring it all. I really could not imagine my life without him now. It's hard for me to think of a time before him. We knew from the start that we were going to be together. We both just knew. I don't know how else to explain it. So, if I were to regret anything I did, or take any of it back.....it would not have led me down the same path. I would not have the friends that I have, the husband I have, the life I have. I'm not saying it's perfect by a long shot, but it's mine.

For some reason, I felt the need to get this all out today. I have felt very sad today. I have been thinking a lot about Kim and what she meant to me, and also of my sister in law, Becka, who passed three years ago now.

Death sucks. Losing people you love, sucks. It is even worse when the person is young and has so much more to live for and experience in life. It is almost easier when the person is older. Maybe easier is not the best word, but when someone has lived to an older age, it does not seem as much of a shock I guess. All the deaths that have happened lately, well, the last three years, have been of people that were taken way too early. It sucks. It just sucks.

Help Your Local Shelter!

2009-02-24T10:21:00.003-05:00

As some of you may know, my husband Shawn and I work at our local animal pound on the weekends.

We have some video of some of the animals up on our You Tube Page, but there are always so many cats coming in, it is sometimes hard to keep up.

Today, via @Romeothecat on Twitter, I saw something really cool! Romeo the Cat posted a tweet: @Romeothecat Luv your local animal rescue? Submit it at www.romeothecat.com to be recipient of March donations!

So, I am signing up our local pound to receive donations! I hope we win!!!

Pleast check out the Romeo the Cat website too! Very cool!

Oh, and for those of you who don't know - the shelter we work at is the Hopatcong Animal Shelter in Hopatcong, NJ. We can always use old towels and blankets, bleach, spray bottles, scrub brushes, treats and food, among other things. Check out the cats and dogs up for adoption from the Hopatcong Pound at: http://www.petfinder.com/shelters/NJ162.html - we have a bunch of really great cats. Please check us out!

Head hurts

2009-02-10T08:49:00.002-05:00

Today I don't think will be a good day. I'm tired, my head hurts and I am very dizzy.

More to come later.

Headache on the Hill is 2 Weeks Away!!!

2009-02-07T17:06:00.003-05:00

Are you signed up for your action alerts? Teri Robert wrote a great share post over at My Migraine Connection letting you know how to sign up for Action Alert emails. We really need funding, guys!

Listen, if you are not going to sign up and help push for more funding for Migraine research, then you really can't complain about the treatment that you receive. Sorry, that's just the way it is. I don't mean to be harsh, but this is really important!!!!!

Please visit Teri's article: HERE. Sign up for Action Alerts by clicking HERE.

Thanks!

From the AHDA website:

Headache on the Hill 2009
Colleagues We’re delighted to announce that the second Headache on the Hill (HOH) advocacy event will be held in Washington, DC on Monday, February 23rd and Tuesday, February 24th 2009. We hope that you can make this event. A FAQ, tentative agenda, and application form for HOH are available. CLICK HERE for these documents.

The long-term goal of the Alliance for Headache Disorders Advocacy is to provide equitable NIH funding for research on headache disorders. You might ask, why bother going to Congress now, when the prospects for increased discretionary spending appear to be so dim? First of all, we intend to make specific programmatic requests of Congress during HOH that should have lasting benefits but that will require relatively modest short-term increases in NIH expenditures. Secondly, this spring is a unique advocacy opportunity: the “honeymoon” of a new Democratic President and a Democratic Congress promises action on a broad legislative agenda. Furthermore, a new NIH Director will be chosen next year and, even in the leanest of times, NIH initiates some new programs and adjusts its priorities. Finally, successful advocacy is often a slow iterative process requiring continuous engagement. We are building on the legislative progress that began with the first HOH in September 2007 and resulted in language in the recent US Senate Appropriations Committee Report strongly urging increased NIH attention to headache disorders. If we are to realize these necessary changes in NIH funding, we must continue to make our issue heard before Congress.

We truly hope that you will be able to be join us at HOH. Your participation can make a difference. Please apply and reserve your hotel room as soon as you can.

Thanks,

Bob Shapiro

Bill Young

Teri Robert

Brad Klein

Alliance for Headache Disorders Advocacy

http://www.allianceforheadacheadvocacy.org/

Awards and things.....

2008-11-24T18:07:00.000-05:00

My friend MJ over at Rhymes with Migraine awarded me a Lemonade award! This is for "blogging with the attitude of gratitude".

I love that we have little awards to give to other bloggers!

Since I've been somewhat out of the blogging loop - I also received a Kreative Blogger Award from Megan Oltman at Free My Brain.

I thank you both for the awards.

With the Kreative Blogger Award - we are to list six things that make us happy.

1. My husband and his support

2. My family at My Migraine Connection

3. Doctors that LISTEN!!!!!

4. My furry babies (the 5 cats that rule my house)

5. Triptans! Yes, I know - that's an obvious one, but I know a lot of you who were diagnosed and suffering before they were available. I am happy that we have them and that we will never again be without them!

6. The great group of guys and gals that blog about Migraine disease and getting the truth out there! I love you all!!

Now, I am to give these awards to others in the blogging community:

1. Sue over at Inner Dorothy

2. Nancy Bonk for her great Share Posts

3. Arabella at Migraine Truth

4. Leeloo at Journey of a Migraineur

5. Abi at Abi's Migrainous Wanderings

6. MW over at Sparkling with Crystals

Thank you all!!!!

My New Migraine Specialist!

2008-11-20T17:00:00.000-05:00

When I see a new doctor, I try very hard not to get my hopes up too high because, usually I am let down.

This was not the case with the Migriane Specialist I saw yesterday. Dr. Mascellino was wonderful! She is taking me off the Lexapro - she was excited to see that I wanted to try Zonegran, since I'd done well on Topamax for a little over a year. So, once I can get to the pharmacy, I'll be starting Zonegran! Of course - even though I had called the other neuro's office that I had been seeing for about a year like 3 times before this appointment to make sure they sent over my records - they, of course had not.

She called over and got everything faxed over while I was there so she could review what had been done previously - it took two calls because the first they only send old neruo's office notes and did not include the lab work I'd had. So the next call was for them to send the REST of my file.So - full neuro work up and here is what we are doing:

Tapering off Lexapro and starting Zonegran - which can be done at the same time. (She said tryciclics and anti depressants are not her fist line of prevention - and are a last resort.) She also said no Verapamil for me since I had a hard time with Inderal, and although they are different classes of drugs, with my BP on a normal/low - she didn't want to go that way.

We are keeping the Frova, Xanax and Zanaflex since they all work like a charm for me. She switched my rescue from Vicodin to Vicoprofen? I am not too familiar with that one, but it is the same strength as the Vicodin with a different make up. I had stressed my concern w/ MOH which I usually get from Acetaminophen.

She is adding in Parafon Forte for my TTH as needed and also ordered all new blood work with metabolic work up, check my vitamin D since I've been taking 1000 IU since June. She also ordered MRI's, MRA's with and without contrast. I will be doing that later, once they are precerted.

All in all - I really like her! She was surprised that I had tried so little as far as preventives, seeing as I've been going to a neurologist in some form or another for 10 years. She said "don't worry - there are soooo many more we can try!!" (That's when I pulled out Migraine Preventive Options: Too Many To Give Up! and said, "Yes, I know!" She loved the list! I don't know if she is familiar with My Migraine Connection, but when I see her next month I'm going to pass it along to her.

She is also the first doctor to want to COPY my Migraine and Headache diary which is wonderful because having it in my file and looking at it is a heck of a lot better then skimming it for a second like all the others did, if they even cared!

Shawn came with me and thought she was good too. I was happy he was there, because he brought up things I forgot about. Also, it was great to have her ask if during my Migraines I get weakness or tinging - she was checking to see if I had Hemiplegic Migraine which was great, since I don't think any of the other doctors I'd seen previously ever asked! They also never ordered any testing what so ever - I had to request blood work with my last neuro.I think that is about it!

She is really nice and does know her stuff! I was really impressed considering I had not heard of her before.So, she wants to see me in a month, just to touch base and see how I am doing with the Zonegran. I think that is great too!

So we will see how it goes! I will keep you posted once I get my testing all done.

E is for.....

2008-11-17T18:52:00.002-05:00

Education! Education! Education! - the more you know about Migraine as a patient, the better treatment you can get for yourself. I am going to have shirts made that say "Everything I've learned, I've learned from Teri Robert!" Seriously! Her book Living Well with Migraine Disease and Headaches changed my life! Her friendship and constant support has changed my life. Pick up her book through Amazon.com - and visit her at My Migraine Connection!

ER Treatment Forms - Teri Robert came up with these forms when dealing with uncooperative ER staff, or just the ER in general - and will also have a protocol in place as how your doctor wants the ER staff to treat you, if you need to go to the ER.

A Confession.....

2008-11-01T22:15:00.003-04:00

I think I was a little too ambitious with the ABC's thing. I will get back to it. I have had no time and quite honestly feel like a truck hit me more often then not.

I sit home again tonight, in pain, while my friends are at a Halloween party.

I am just tired of being sick. I know it will get better. It's just that the right now - sucks out loud!!

D is for....

2008-10-13T18:19:00.004-04:00

Depression - Almost half of Migraineurs experience depression. Why wouldn't we? Being in pain more days then not can get very depressing and lonely. Not to mention some of the preventive medications we can use have depression as a possible side effect. Teri Robert has written about Depression and Migraine being co morbid - meaning you can have both, but one does not need to exist for the other.

Depression Common in Headache Sufferers

Depression in Woman with Migraine Linked to Childhood Abuse

If you or someone you know suffers from depression, HealthCentral has a site for this as well. It's at My Depression Connection. Depression is not something to fool around with. I have been battling with it since I was about 8 or 9, but not diagnosed until I was 14.

Dehydration - This can be a huge Migraine trigger! It can also trigger a headache for those who do not have Migraine Disease. You would think the first sign of dehydration would be thirst, but nope! It's headache!

Diagnosis - When dealing with any new symptom or illness, it is crucial to get a proper diagnosis. Don't go guessing what you have - get to a doctor and have it checked out! You will save yourself a lot of aggravation, and maybe even your life by doing this! Trust me!

Disability - "According to a World Health Organization analysis, migraine alone is responsible for at least one percent of the total US medical disability burden, and severe migraine attacks are as disabling as quadriplegia." Migraine also makes up 9% of labor loss in the US alone.

Statistics and quotes found at the Alliance for Headache Advocacy Fact Sheet

DHE-45 - Dihydroergotamine is an injectable drug used to abort Migraine. It also comes in a spray form called Migranal. This drug can be used in an IV treatment therapy as well.

IV Treatment for Refractory Migraines

C is for:

2008-10-07T18:57:00.001-04:00

Cluster Headaches: Severe attacks in head pain, unilaterally, lasting 15-180 minutes. Cluster headaches can occur more then once a day. See Cluster Headaches: The Basics Also, for more information, visit Cluster Busters. Also, if you go to Cluster Busters, please check out the video linked on the front page.....it really puts into perspective how painful these attacks are.

Caffeine: Ah, caffeine. This one can go either way for a Migraineur. It can help or make a Migraine worse. For me, I find that I end up with a Migraine if I don't drink it! Note: Caffeine Guy don't even think about commenting here!

Coke Classic: The end all, be all of what I need when I feel like a truck hit me. I am not a soda drinker, but this is my all time fav!!!! It not only helps my belly feel better, but my head too!

Chronic Daily Headache: or CDH - is a headache more then 15 days in a month. See Chronic Daily Headache: The Basics

B is for:

2008-10-06T18:29:00.002-04:00

Basilar-type Migraine: BTM is a type of Migraine, a little more difficult to treat then some other Migraine or Migraine with aura Migraineurs. This is because most of the medications used to abort Migraines, are contradicted for BTM. Symptoms of Basilar-type Migraine may mimic other types of illnesses, so it is very important to rule out other possible illnesses by having a CT (CAT Scan) and/or an MRI, just to make sure there is nothing else going on.

Migraineurs suffering from BTM should wear an ID bracelet in case of emergency, since the symptoms of an attack can mimic other health issues.

Botox: I'm sure you all know what this is! Yes, it's not only used for cosmetic reasons anymore! It has shown great success with tension-type headache and other conditions. It is not exactly administered they way it would be if being used for cosmetic reasons. Botox for Migraine and TTH is shot not only in the forehead, but around the jaw, and also in the back of the neck.

If you are thinking of Botox for Migraine, please check out the following links:

Treating Migraines with Botox?

Intradermal Botox for Migraine, Headache, Pain Disorders

Just a fair warning though - there may be a lot of back and forth with your insurance, if you decide to go this route. So be prepared.

A is for:

2008-09-28T13:35:00.004-04:00

Aura: Only about 25% of Migraineurs experience an aura. An aura can be different things to different sufferers. Visual issues such as flashing lights, floaters, zig zag's, blurry vision or even loss of vision. My friend Rain just found a great video on aura, which you can see HERE.

Abortives: Abortives are medications that actually abort a Migraine attack. There are quite a few options in abortives right now, including Triptans (Amerge, Axert, Frova, Imitrex, Maxalt, Relpax, Treximet, and Zomig). Then there is Migranal, DHE, and newly back on the market, Ergomar which are Ergotamines. And last but not least, Midrin, which is a combination of Acetaminophen, Isometheptene, and Dichloralphenazone. Abortives can come in many forms such as pill, capsule, indictable, IV therapy, nose spray, and even wafers. Not all abortives are available in each form, click the links for more info on them.

Alice in Wonderland Syndrome: Given the name because of famous Migraineur Lewis Carroll's book, Alice and Wonderland. This is a specific type of aura that can make a person feel like they are too big or too small. Teri Robert just recently wrote a great article on this: Alice in Wonderland Syndrome: The Basics.

Aphasia: The inability to speak or trouble speaking. Also may affect comprehension of words.

Allodynia: Sensitivity to touch.

ANODYNE Headache and PainCare: This is where, IMO, the top Migraine and Headache Specialist set up shop. Dr. John Claude Krusz's office is located in Dallas, Texas. Dr. Krusz is know for IV therapy and treating the patient, not just the Migraine disease.

Alliance for Headache Disorders Advocacy (AHDA): A group of Doctors, patient advocates and patients working together to raise awareness and funds for Migraine research.

ADVOCACY!!!!!: Teri Robert, the top Migraine Advocate! Advocacy is empowering yourself, sticking up for yourself, and teaching others to do the same. It's fighting for a cause. It's busting your butt, it's having a great passion for something. This is how I view the word Advocacy.

Wow - "A" is a big one! I didn't do them all, because you would lose interest in reading them, and I also wanted to give you, the readers a chance to add your own! Please feel free to add any other "A" words you feel fit in with Migraine, and give a definition.

The ABC's of Migraine

2008-09-27T13:25:00.002-04:00

So my friend Marijke Durning, RN over at Help My Hurt, did a nice ABC's of Pain blog post over the summer. Everyday during the ABC's posting, Help My Hurt had a new letter in the alphabet and what went along with it in the "ABC's of Pain".

I thought this was a great idea! Yep, so therefore, I am shamelessly stealing it! Well, not really, I'm just taking the great idea and making it all about Migraine!

I think this will help me post more often, having to have a daily entry.....

So, kids, starting tomorrow will be the first entry in my ABC's of Migraine posting!!!!

Cymbalta and a night in the ER

2008-09-22T20:36:00.004-04:00

My neuro and I discussed a new preventive Migraine medication for me last week. We decided on Cymbalta. I thought great!, Cymbalta is weight neutral, if not that, it may help me lose a few lb's....low libido side effects, and can help me to not have Migraines! Where to I sign up??!!

So Dr.G gave me a nice supply of samples, a months worth to be exact. I thought this was great. I went to dinner at my in-laws that night....had a great night, came home and took my first dose of Cymbalta. I went to sleep with no problems at my normal early bird bed time of 10 p.m.

Then everything changed. I woke up from a dead sleep at midnight and could feel the color drain out of my body. I had the worse nausea I've ever had in my entire life!!!! I got up, ran to the bathroom to get sick and didn't leave the bathroom for four hours straight!!!

I woke up Shawn at 4:45 in the morning to have him take me to the ER. By this time, I'm in some sorry shape. I was in the "bargaining phase". I would have given up my right arm at this point just to stop vomiting.

Got to the ER (one that my doctors work for) and there was no one in registration. Being that I know my way around, I walked into the ER and just asked for help. I was stark white. Now for some of you who know me, you think "what else is new, you're pale!" But no, this was different. I had NO color. It was almost as if my freckles were gone too!!!

I get to my hospital bed and Nurse Julie comes in to take my vitals and info that I didn't get to give at registration. In goes an IV - blood work, then saline. Everything came back normal. I get 2 doses of Zofran and I'm out the door.

I get home, get a little rest.....call my boss, the insurance company and my doctor that scripted the Cymbalta. The nurse says Dr. G will call me back.

Ten minutes later, the nurse calls me back and says Dr. G says cut the pill in half and try that. Um, hello....I was just up all night violently ill from this drug and you want me to keep taking it!!!???!!! Then I say I can't cut it in half, it's a capsule with little beads or powder in it. The nurse goes to double check - yep, cut it in half.

I was shocked! The packaging says "Do NOT crush, split, open or bite. Swallow Whole". So now I don't know what to do. I have not taken the Cymbalta since, and have called the pharmacist who also says not to split it.

Since this happened, I also got curious to see if anyone else had this type of reaction. OH YES! I found a forum of sorts that all the drug reps can go and chat......the Eli Lilly reps, the company who makes Cymbalta - well the reps nicknamed the drug CymBARFa because of it's nasty little side effect.

No wonder I would lose weight on this drug - I can't keep anything down!!!!!

So Cymbarfa, oops! Cymbalta - is not the drug for me. I am scared to try it again because I don't want to end up back in the ER.

I am back with no preventive for the time being and also some wacky ear infection (well, the dr. said it's only fluid but gave me an antibiotic anyway). Since this happened I've been having odd Migraines. They are not ping ponging (switching sides each Migraine), they are all on the right and the pain goes down to my shoulder. I really hope the ear issue is the reason behind this and that it stops quickly.

Also, I should mention - there are a lot of people out there who get great relief from Cymbalta, both as a Migraine preventive and as an antidepressant. I'm just not one of those people.

Invisible Illness Week Starts TODAY!

2008-09-08T19:28:00.005-04:00

Today is the start of Invisible Illness week.

I was reminded way too much recently that I have an invisible illness. I suffer from Migraine Disease. I also suffer from Depression.

The Depression may come and go, but the last couple weeks were just awful. It was brought back on by a drug, Inderal, that I was taking as a preventive for my Migraine Disease.

Yes, sometimes the drugs we take have adverse side effects that seem to put us back a few steps. I spoke with my doctor today and I am tapering off of it and seeing him next week.

And just for those of you who may think that living healthy or breathing deep will "cure" Migraines - I already do all of that.

I tried the natural approach for almost a decade as my Migraines got progressively worse. I hated the thought of having to be on a drug for the rest of my life. I tried to just suffer though an attack - not even take Advil - and you know where it got me? In the doctors office for some preventive medication!

If those things work for you - I really am truly happy for you. But please don't preach to me how your way is the ONLY way - I've tried it. The only way I can even somewhat function in my daily life at this time is with preventive medication.

Yes, we Migraineurs get a slew of different reasons thrown at us as to why what we are doing is not the right approach. That I can think of off hand, I've been told "no more caffeine", "get pregnant", "breathe deeply and relax", "try chiropractic", "try holistic healing".

Ya wanna know something people: I've tried it all!!!!! Well, except for the getting pregnant one. That one will have to wait for a very long time.

Having an invisible illness is a sad and lonely thing to go through in life. It take so much some days for me to wake up and face the day. I take a handful of supplements every morning, on top of my preventive medication. So it's not like I'm taking just the preventive. I take 6 different pills before my preventive, and that's just vitamins and minerals.

Sometimes we all just want to scream SHUT UP to the "have you tried" and "you are attached to your pain" people.

Walk a mile in my shoes and tell me that what I'm doing is wrong. Tell that to anyone with Cancer, Fibromyalgia, Diabetes, Depression, or Chronic Fatigue Syndrome. It SUCKS!!!

But, as my favorite saying goes:

"The most authentic thing about us is our capacity to create, to over come, to endure, to transform, to love and to be greater then our suffering." Ben Okri

I will be greater then my suffering. This disease has made me want to make a difference for myself and for others.

Awareness is key. I intend to fight for a cure, to fight for better doctors, and fight for all of us out there suffering. "Safety in numbers" as they say. Together we will change the face of Invisible Illness.

Using a capital M

2008-09-04T08:35:00.003-04:00

My lovely friend over at My Migraine Connection, number one patient advocate (yes, that's right, she rocks!), Miss Teri Robert, has written an awesome Share Post about the capital M.

What is the capital M you ask? Well, it's the first letter in the word Migraine!

I've spoke to Teri about this before, and I am in total agreement. Migraine should be capitalized!!!! It should not have to do with a person's name, if it is a disease, it should be capitalized! At least this is my feeling on the subject.

If you would like to read Miss Teri's Share Post, and I know you do!!, you can check it out: Migraine with a capital M

Seems like everyone has advice....

2008-08-27T18:24:00.003-04:00

Yes, I have an invisible illness. You can't see it, and if I didn't tell you I had it, you would probably never know.

Even with Migraine Disease, I have managed to still work and have a somewhat normal lifestyle. This is not to say that I don't end up in pain at work, or have to cancel plans last minute, but I still consider myself one of the lucky ones. Migraines have not totally disabled me.

For the times people do see me in pain, I get a lot of "have you tried this?" comments thrown my way. Maybe it's because the average person does not really understand that Migraine is "not just a bad headache".

Migraine is a genetic neurological disease affecting close to 36 million Americans. Migraine affects more people the Diabetes, and is the 12th most disabling disorder in the US.

You would think with those numbers, more people would know what it is. I guess because with Diabetes, people know it's watching your diet or insulin that is used to control it.

It just seems odd to me that there are so many people out there with misconceptions or no knowledge about Migraine at all! That's probably part of why it's under diagnosed and an individual waits till their attacks are very chronic before getting treatment.

The "can't they do anything for you" comments get old. I get tired of answering them. I am doing everything I can, trust me. If you felt anything like I feel on a daily basis, you would be on the computer researching Migraine, talking to people, looking for the best specialist in the world, no matter what the cost.

Granted, I am happy when I see a news report on Migraine make the evening news, but still, the information given to the general public is information Migraineurs have had for over two years. The news acts like it's a new fangled test, drug or device, when it's been on the market for years!

I wish for the day when invisible illnesses like Migraine, Multiple Sclerosis, Fibromyalga, and many others are hitting the main stream publications and radio waves.

So many of us suffer alone, trapped inside our pain. But having support groups out there make life a little easier. Knowing that "oh she feels that way too!" is comforting. Sharing pain is a powerful bond, yet I don't wish it on anyone.

There are a lot of great organisations and support out there if you suffer from Migraine:

My Migraine Connection

The Alliance for Headache Disorders Advocacy

MAGNUM

The Migraine Research Foundation

The National Headache Foundation

Oh, and I can't pass by this little tid bit either.

If you have someone that is a "can't they help you" person or just doesn't understand, give them a copy of Teri Robert's Friends and Family Letter and help educate them!

Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network

I just wish for those who don't understand to maybe think before they make comments.

Shop for a cause!!!

2008-08-26T08:44:00.001-04:00

The Migraine Research Foundation has teamed up with Macy's shop for a cause event!!

I received an email about it today!

"Shopping Shouldn’t Be A Headache!

MRF is proud to announce its new partnership with Macy’s Shop For A Cause

MRF is selling shopping passes to Macy’s Shop For A Cause. For only $5, you get a coupon for up to 20% off (exclusions apply) at all Macy’s stores and online on Saturday, September 20. To buy a pass, send $5 to the Migraine Research Foundation, 300 E 75th Street Suite 3K, New York NY 10021 or visit http://www.migraineresearchfoundation.org/Donations.asp (put “Shop for a Cause” in the comment field). Please include the address where we should mail your pass.

All of the money raised will go directly to the Migraine Research Foundation!"

So if you need to get your shop on, why not do it for a cause that is very near and dear to us??!!

Invisible Illness Week - September 8-14

2008-08-25T21:20:00.003-04:00

Next week is Invisible Illness week. It is very important to us in the "invisible illness community" to keep getting the word out on our invisible illnesses.

In my case, it's Migraine Disease. Ya can't see it, but I know it's there!!

Please read below for the press release from Invisibleillness.com

Blogging for Awareness of Invisible Illness Week Unites Thousands
AUG 2008

Chronic illness statistics are staggering, with nearly 1 in 2 people in the USA living with a chronic condition and, according to U.S. Census Bureau, about 96% of illnesses are invisible. With hundreds of thousands of people on the Internet searching for health information and support, thousands of bloggers now post daily journals about the emotional challenges they live with while facing a daily chronic illness filled with pain.

National Invisible Chronic Illness Awareness Week, September 8-14, 2008, is inviting these blogs to have a substantial role in their awareness campaign. For example, part of their outreach includes over thirty days of guest bloggers as well as bloggers across the internet posting about invisible illness matters. For example, if you have an invisible illness-and a legal handicapped parking placard-you’ve likely faced a few stares and questions if you park in the blue spot since your invisible illness does not require the use of a wheelchair.

All over the internet, bloggers are putting their illness awareness efforts together to join in helping more people become aware of invisible illnesses. They show their support by posting about invisible illness issues, on their own blog. A downloadable badge that says, “I’m blogging for Invisible Illness Awareness Week” can spread the word about their commitment to the cause. Plus, bloggers are also thanked publicly each Friday on the Invisible Illness Week blog, which can give them lots of extra exposure for their own web site. Bloggers can post anytime, but they are also encouraged to specifically post on September 8th to kick off the week.

Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though we live with thousands of different illnesses, we have more in common than not. For example, illness impacts our families, careers, finances and daily living, to name a few. We can all learn from one another and share during this journey.” She adds, “And frankly, people are tired of hearing, ‘But you look so good!’ and they want others to know that their illness is legitimate despite how well they seem to be holding it all together.”

Laurie Edwards is the author of a recently published book called, “Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties.” She has blogged about her illness since 2006 and says, “When you are a young adult people expect you to put in long hours to establish a career, to jump into the dating world, and to build a life for yourself. But they certainly don’t expect you to be sick. There’s no such thing as ‘too young’ to be sick! That is just one of the many reasons why Invisible Illness Week is so important!”

If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillness.wordpress.com . You can also receive updates, participate in surveys, win prizes, and find out more about the telephone workshops at the Invisible Illness Week web site: www.invisibleillness.com .

CONTACT:
LISA COPEN
858.486.4865
___________________________________________

Invisible Illness Week Theme Offers Hope Despite Pain
AUG 2008

National Invisible Chronic Illness Awareness Week, September 8-14, has announced the 2008 theme: “Hope Can Grow From the Soil of Illness.”

Lisa Copen, Founder of Rest Ministries, the sponsor of this annual event says, “Illness can signify the loss of one’s plans and even dreams, but most often people who live with invisible illness find a new purpose they would not have imagined under any other set of circumstances.”

The next month will feature bloggers on the topic of illness, all of who have found a renewed sense of direction, despite the life-altering changes illness has brought into their lives.

Copen, 39, who was diagnosed with rheumatoid arthritis and fibromyalgia at the age of 24, remembers searching for what her purpose would be within her new limitations.

“I had always planned to work for a nonprofit doing something to help others, but I never felt I was efficient or empathetic enough because I had not walked in the shoes of those I served. Now, through my illness ministry and books on aspects of coping with illness, I have the chance to use what I experience each day to reach out to others. It’s my hope that they will also find hope despite their illness, as they discover that new sense of purpose in the pain.”

To find out more about the telephone seminars that will be held September 8-12, as well as the invisible illness week awareness outreach products, visit www.invisibleillness.com .

CONTACT:
LISA COPEN
858.486.4865

Drug holiday is OVER! I have a new preventive!!!

2008-08-23T19:16:00.005-04:00

I went to my neurologist on Tuesday and also started a new preventive medication. I had given up on Topamax and Amitriptyline because of the side effects...and well, I was still getting an average of about 7 Migraines a month.

My new preventive is Inderal. Inderal is a Beta Blocker commonly prescribed for high blood pressure. It's also sometimes used after a heart attack.

I've been on the Inderal at 10 mgs a day, in a split dose (5mgs a.m./5mgs p.m.). So far, so good. The first night I think I freaked myself out. Being that I have a normal low blood pressure, I was nervous to try this drug, but my doctor put me at ease saying that at the first sign of it giving a bad side effect - I back it down.

I have to say, other then the first night, I am sleeping better now then I have in a long time. I don't know if it's the Inderal, since it can take up to 6 weeks to take affect, or if it's my own "placebo effect". I think it's working, therefore, it is.

Now, I sleep like the dead. This is a welcome side effect (if that is what it really is) since I had been waking frequently and not getting sound sleep.

Also, my doctor gave me a script for Zanaflex to be taken at the onset of any Tension Type Headaches.

The story with my Tension Headaches is that the only thing that would touch them was Vicodin. Originally, if I caught the headache in time, Skelaxin would ease the pain somewhat. That is no longer the case. I tried Midrin to no avail. So now I am on Zanaflex for them.

My doctor said we will, at first, treat with Zanaflex on an as needed basis, since I just started the Inderal. The reason for not starting me on Zanaflex as a preventive with the Inderal, is to see which drug is or is not working. Once we know the Inderal is (hopefully!!) working, then we can add the Zanaflex in as a preventive as well. That is, if my Tension Headaches are still frequent on the Inderal.

I also received my first script for a rescue medication, that being Vicodin. I had so much Vicodin left over from my shoulder dislocation last year, I have not had a need to ask for a rescue.

So, that's my story.

So far, since starting the Inderal on Tuesday evening, I have not had a Migraine. I have, however been having a new aura. My aura's usually consist of floaters that look like oil spots, or sometimes, little shooting stars. The last two days I've had a more defined aura in that I'm seeing half crescent zig zags just in my peripheral vision.

For those of you unfamiliar with aura, I found a great video on YouTube featuring Dr. Silberstein from the Jefferson University Hospital.

I should also mention - I got back my blood work results, and as I suspected, I was deficient in Vitamin D! Thank you again Dr. Krusz for bringing this possibility to my attention! I am now taking 400mgs of Vitamin D, along with all my other supplements.

For more information on Vitamin D, you can check out some great articles by Diana at Somebody Heal Me. I have linked her articles directly below:

Chronic Migraineurs Lack Vitamin D

Vitamin D Eases Chronic Pain

Also, if I am not mistaken, Teri Robert is or will be working on an article about Vitamin D as well. Once that is up, I will post the link here.

Here we go again!!

2008-08-07T21:43:00.004-04:00

I've been on a little drug holiday from my preventive medications for almost a month and a half now. I should have known better. What I once thought was my worst time with migraines, the time that lead me to preventives, has now been surpassed.

Out of the last 39 days, I have had a Migraine or a Tension-Type headache all but 5 days. I've also had Tension headaches that triggered Migraine for me. It has not been an easy time!

Now yesterday, I did something I never thought I would do again. I ended up in Medication Overuse Headache. I was not thinking after two days of TTH and Midrin and yesterday I pulled out the Vicodin, which also contains acetaminophen - and BLAMO! MOH city!

The good thing is, it was not as bad as my MOH after my shoulder dislocation, which ironically was this same time last year.

I would be really grateful for some sort of a break here, so if you are listening up there, any time you want to put the Migraine Monster back in it's cage and away from my head, would be greatly appreciated!!!

This has me bringing up some things to mull around.....Is My Doctor Right for Me? I feel as if sometimes I hit a wall with my neurologist. My feeling is that, he likes that I am informed, but doesn't like that sometimes I am more informed than he is. I seem to be again struggling with the "do I stay"? or "do I go" scenario which is all to familiar to a lot of us migraineurs. It puts me in a hard position because I am a gal that likes to be an active part in my health care team.

Don't get me wrong, my neurologist is a great guy, but I tend to think he does not have that many Migraine patients, and those he does, he can appease with Topamax. Well I don't want to be on Topamax anymore.....or ever again!!!!

So we will see what happens. I go back to my neurologist on the 19th, after a nice weekend at the beach with my friends. I hope my next preventive serves me well. I can only hope at this point.

Migraine Expressions - picking it up tomorrow!!!

2008-08-07T21:27:00.004-04:00

I have been waiting for this book to come out for what feels like an eternity. Betsy Blodin, the editor of this book was nice enough to write a Share Post about the book a few months ago. This gave us over at My Migraine Connection a sneak peek of the beautiful cover.

This book is a compilation of poems, written works and art by 125 migraineurs and/or their loved ones. It's like this book is from us, by us, for us. How wonderful is that!!!!

And Teri Robert wrote the forward and has a poem published in the book. Even cooler!!!

And for the best part....are you ready? Once the cost of publishing is met, Betsy is donating the proceeds to migraine research and advocacy organisations such as the The Alliance for Headache Disorders Advocacy!!

So, my friends, please pick up this book. You can get it from migraineexpressions.com.

I will be picking up my copy tomorrow!!! I am so excited!!

Here is a copy of the press release announcing the book:

NEW MIGRAINE ART AND LITERATURE BOOK FROM WORD METRO PRESS

Groundbreaking book depicts migraine in insightful visual and written art from migraineurs worldwide

San Diego, California, July 16, 2008 – Migraine Expressions: A Creative Journey through Life with Migraine illustrates in breathtaking art, poetry, essays and photography some of the ways tens of millions of people worldwide live, work, feel and love while trying to minimize attacks and manage symptoms of this often-debilitating disease. The courage and strength that takes is illuminated in this dramatic work from 124 writers and artists in many states and countries.

No other book expresses migraine in both words and art of people who suffer the symptoms and survive the disease; most books about migraine are from experts who define, explain, and offer advice on how to manage it. This book will complement existing information, be instrumental for people with migraine to share experiences and communicate feelings, and serve as a tool for furthering understanding among non-migraineurs.

Migraine is a neurobiological disease impacting more than 30 million people in the United States and similarly 12 to 15 percent of people in most countries of the world. It is a debilitating and little-understood disorder that is finally attracting the long-overdue attention it urgently needs in medical research and treatment arenas as well as in the general media. Celebrities, athletes and well-known professionals appear more and more often to share their stories or in news items of crippling migraine attacks. They represent many millions of others around the world.

Suzanne E. Simons, Executive Director of the National Headache Foundation, commented, “Congratulations! The images and the words are compelling. Migraineurs will relate to the visual images and poems. Those who don’t suffer may be better able to empathize after reading the book.”

The book includes a foreword by leading migraine educator, advocate and author, Teri Robert, Ph.D., who says, “Projects such as Migraine Expressions are rare, priceless, and sorely needed. They offer an intimate view of the impact of migraine disease. The works of art in this book are deeply personal and revealing. They are heart-wrenching and inspiring, filled with both terror and hope.”

And Richard B. Lipton, MD, Professor of Neurology and Director, Montefiore Headache Center, Albert Einstein College of Medicine, claims, "Migraine Expressions reveals a neurobiological disease from many highly personal perspectives as contributors transform their experiences into stunning verbal and visual art. The book will help people with migraine find their individual voices even as they recognize the universality of their shared experiences.”

Book details: Hardcover, 192 pages, full color, 8.5 by 11 inches, available from publisher at www.wordmetropress.com July 18, 2008, $34.95 retail. Editor is available for interviews, appearances and book signings.

# # #
Betsy Baxter Blondin is a longtime writer and editor, a nearly 40-year migraine survivor,
and this is the first book published by Word Metro Press.
Contact Betsy at 760.458.5576 or editor@wordmetro.com for further information.

www.wordmetropress.com, www.migraineexpressions.com

Happy Birthday to MJ over at Rhymes with Migraine!!

2008-07-28T19:57:00.006-04:00

My dear friend MJ will be turning 25 in two days!

Happy Birthday!!!!

more cat pictures

Please check out her blog at Rhymes with Migraine.

News: Topamax May Cause Birth Defects

2008-07-22T21:02:00.003-04:00

Good to know I just stopped taking it! Not that it would affect me now, since I'm not planning to have a child anytime soon, but still!

Teri Robert wrote an article about this today over on My Migraine Connection. Please check it out: Topamax May Cause Birth Defects. Also, Marijke over at Help My Hurt did an article about it too: Epilepsy and Migraine Drug Topamax Investigated for Birth Defects.

Now, yes, I know with any drug, there are risks of side affects. The point is that the good should outweigh the bad. But this one really took me off guard. I mean, I know you are not supposed to take this drug while pregnant, but what about those people who are taking it for Epilepsy. Having seizures during pregnancy can harm the baby, not taking your Topamax for Epilepsy may cause seizures.

It's just sad when a medication that may be working great for you has to be changed for this reason.

So, if you are out there and on Topamax and trying to conceive - please, PLEASE talk with your doctor about other options. It's always better to be safe then sorry.

And the Doctor says.....

2008-07-15T21:09:00.004-04:00

Today was my appointment with Dr.G. He really is such a character. I really like him, but have to remember sometimes, that he is just a neurologist, not a Migraine Specialist

We went over a bunch of things. The Topamax
and Amitriptyline and the side affects that made me stop taking them.

We decided I would go a month clean with no preventive. This way, we can be sure when we start the new one, (which may be Wellbutrin) we can figure out what drug is causing what side affect. I was o.k. with this. I kinda like the idea of a drug holiday. I feel like I've been putting so much crap in my body everyday, it will probably welcome the break.

He did tell me that I will probably start to see a spike in Migraines after I've been off the Amitriptyline for about 10 days....I'm on day seven and I already feel it.

I got a script for Midrin, which I can try for my Tension Headaches. It sure beats Vicodin, that only knocks the pain down to make it bearable! So we will see how that goes.

I am having blood work done to check all my levels, such as vitamin B12, Magnesium, vitamin D (Thank you Dr. Krusz for making me aware of this!!), among other things, but I just can't read Dr.G's handwriting to see what else I am having checked....and of course I already forget.

So we will see how it goes! Wish me luck!

It's been a busy week!

2008-07-14T20:38:00.005-04:00

Last week was very busy for me. It was my husbands birthday and I put together a surprise birthday dinner for him. We had a great time!

It was also a busy week on the Migraine front. I think I was hit about two times, plus 3 Tension Type Headaches. I was lucky enough to keep the Tension Headaches as Tension Headaches, and not let them trigger yet another Migraine.

We also went to see our friends band play. Around this time of year, every town has their "day", so Insouciant played Jefferson Day.

Then, we have my husbands band, Annoying Customer, that is working their first EP. The recordings are all done, now our friend Bryan is just mixing them so they sound like the masterpiece they are!

Tomorrow I go to my neurologist. I am looking for new preventive medications as I am off the Topamax and Amitriptyline.

So tomorrow I will write about my doctor visit. I am hoping it goes well.

Happy Anniversary to Me!!!!

2008-07-04T13:34:00.005-04:00

Well it's been a year since my husband and I tied the knot. I can't believe time has gone by so fast. I feel like it was just yesterday.

Some people say the first year of marriage is the hardest. Well, if that's true, then we are going to have quite an easy ride!!!!

Shawn has had a lot thrown at him from me, with my health and seeing doctor after doctor for my Migraine disease. That's not to say he has not thrown some dandies my way as well, but we can communicate very well with each other, and that really surprised me. Coming from relationships where people just keep things bottled up - I have to say we can keep beating the horse till it's dead, as long as we are both o.k. with the situation. I am so grateful to have that in my life now, and not have to feel like I'm trapped with my feelings inside all the time.

This is extremely important to me when it comes to my health. Shawn is always more then willing to come to doctor appointments, make sure he knows what medications I'm taking in case of an emergency, get me my triptans or rescues when I feel like hell. Or, just leave me alone when I feel like I've been hit by a truck! I'm glad this wasn't something we had to work out either, this is just the way it's always been with us.

Ok, now I'm boring you all with my personal life. I hope you all have a wonderful 4th of July. You know they set off fireworks tonight in honor of my anniversary! *wink*

Have a good one!

I've got a contract with HealthCentral!!

2008-07-03T19:58:00.003-04:00

Hello my lovely readers! I have had quite an opportunity handed to me (not to say that I have not worked hard for it, I feel I have). The lovely Miss Teri Robert over at My Migraine Connection has been mentoring me now for about a year.

Well my work has paid off! The HealthCentral Network has offered me a contract to become an EXPERT on their migraine site!!

I could not be happier!! I have so enjoyed working with the lovely people over at MMC, and to now be an expert - WOW!!!! This on the heels of just coming back from an absolutely fabulous time in Boston at the American Headache Society 50th Annual Conference.

So I just thought I would share the news with all of you - My title over at My Migraine Connection is now "Community Moderator". I will be helping out Miss Teri and Miss Nancy, who is the Community Manager. So pretty much in the hierarchy - it goes:

Queen - Teri

Princess - Nancy

Princess in training - Me (sounds better then Duchess I think)

Hey I have to find a way to wear a tiara any way I can!!!

Back from Boston

2008-07-01T21:48:00.006-04:00

So yes, Boston was a great experience. I had a blast. I met so many wonderful people. Plus, I think I have even worked out what I am going to do as far as my own therapy is concerned. I won't mention names yet, since it's probably going to be a ways off. I have to get some $$ together in order to take a plane, pay for the appointment and all that stuff. Plus after discussing it with Shawn, of course he wants to come with.

We figure if I'm going to fly somewhere to see a Migraine Specialist, might as well make the best of it and turn it into a vacation!!!!

So that is about it. I am back at work and still trying to figure out all my unpacking. I did want to let my loyal 4 readers know that I was back safe and sound.

Also, I wanted to share a couple of pictures with you!!!! I figure since I am somewhat off topic, it's a nice time to share pictures of the pretty city of Boston as well as the beautiful Orchids that were all over the hotel and mall that Teri and I went to.

Ok that's about it for now. I promise to have something good to say soon. Oh, but on a side note, if any of you are not yet reading Migraine Chick, she had a really great, funny post today about Why I could survive a Zombie attack which is worth checking out if you are a migraineur or like Zombies!!!

First day of conference

2008-06-26T22:35:00.006-04:00

Today was our first day of conference stuff, seeing as we came in a day early to get adjusted. Teri and I woke with the chickens at 4:45 to make a 6 a.m. breakfast satellite symposium on Brains, Sex Hormones & Woman: Neural Mechanisms of Migraine. It was all about women and the impact menstruation has on Migraine and menstrual Migraine.

I know Teri is going to write up a share post about this within the next couple weeks over on My Migraine Connection. Once I have time to reread what I've learned, I may come on back and talk more about it here.

We also went to a lecture on how the brain processes pain signals.

This all happened between meeting so many wonderful doctors such as Dr. Fred Sheftell who is now the president of the American Headache Society, Dr. Elizabeth Loder, Dr. William Young, Dr. Krusz, Dr. Silberstein, and Dr. Lipton. These are just a few of the brilliant minds of gotten to meet so far, and it's just the first day!

I believe this is going to be about it for now since we are crazy and getting up for another satellite symposium tomorrow at the crack of dawn.

Good night for now!

Off to Boston in the morning!!!

2008-06-24T18:58:00.005-04:00

So Teri and I are off to Boston in the morning for the 50th annual American Headache Society conference. This is Teri's fifth year attending and my first. I am so excited, I cannot wait.

I am just finishing up the packing, the getting myself organized and all that stuff.

We will have a lot to report from Boston, so stay tuned!! I am not sure how much of it I will have time to report on here before I get back, but we will be Share Posting on My Migraine Connection during our trip.

So wish us luck and please check in here and on MMC for updates from the confrence!!!!!

Mourning Becka

2008-06-17T20:14:00.003-04:00

It's been two years now. Although I never got to meet you, I miss you and mourn you every day. I've never cried for someone I never knew before, not like this. We are sisters through marriage, although we won't meet on this earth.

Becka, I hope it's better for you where you are now. We miss you and love you.

Your brother misses you more then you will ever know. I wish you were here. I wish you could be here, living life with us.

I can only imagine you coming over, hanging out, chillin - just being silly. If there was anything I could do to bring you back, I would do it in a second.

I'm going to go now.

I love you!

I LOVE THIS VIDEO!!!

2008-06-05T19:29:00.002-04:00

I was able to watch some of the videos the NHF launched the other day. I love this one. I have posted it eveywhere. I have it on my myspace and everywhere else I think it will reach people. Word!

National Headache Awareness Week! June 1-7

2008-06-03T19:42:00.005-04:00

So I have been really slipping on the blogging lately. Sorry to all of my 3 readers out there! It's not for lack of wanting to, or having interesting things to say.....it's that I've been super busy.

Hopefully this week will jump start my butt to what promises to be a very busy month!!!!

To start it off: It's National Headache Awareness Week!!! Yippee!! I've celebrated by informing some co-workers more about this disease! (We should have our own mylar balloons, right? With little brains on them??) Just thinking out loud. Maybe I'll make a brain cake to celebrate....

Ok, let's get serious!

The National Headache Foundation started a new campaign, and a new YouTube Channel! The new "campaign" is called "getting a head START on your headaches". Teri Robert wrote a great article on it. This year marks the 15th annual National Headache Weeek that has been "celebrated".

And, in news to come later this month - I have the pleasure of going to the American Headache Society 50th annual confrence in a few weeks with none other than Miss Teri Robert!!!!

I am so excited I cannot wait!!! We are going to have such a great time! I will be keeping you all updated on here and also through My Migraine Connection.

With all this news in one post, I can hardly contain myself! I'm going to try really hard to get on here more often and get info out to you guys. I'm sorry I have not been more on the ball lately. I know I've missed a couple blog carnivals and things of that nature, but I'm going to try and get on here at least once a week!

That's about it for now!

One hour? You've got to be kidding!

2008-05-25T18:46:00.004-04:00

So a friend of mine picked up one of those free little magazines that you get at the pharmacy.....I'm not sure what the name of it is, I don't think it's Prevention, but it's something like that. This one has Patrick Dempsey on the cover (I love me some Grey's Anatomy!!).

Anyway - they had a two page dealy on migraine triggers. Pretty much the same 'ol, same 'ol....certain nuts, caffeine, things we "seasoned" migraineurs already know about.

One thing did strike me as odd though.

In the article, it mentioned that while doctors are going through medical school, they only get about one hour of training in Migraine and headaches, and another one hour during residency.....I found this quite appalling! Considering that Migraine strikes more people then diabetes and is so debilitating that it currently is the 4th top reason for people missing work.

I mean, I don't know what I was really expecting someone going into general practice to get as far as migraine and headache training, but I would think it would be more then 2 hours in total. I mean I had to take 2 years of Algebra in high school and I don't even use that crap anymore! You figure a GP is a migraineurs first stop when they are trying to figure out what is going on....

This just reiterates again why it is so important for us to seek out great neurologist and/or Migraine and headache specialists. I mean considering how much time I'm spending learning and reading about this disease, I'd hope my doctor(s) would have spent more time learning about it then I have!

Protect Migraineurs from compact fluorescent light bulbs

2008-05-09T10:44:00.003-04:00

Ok this is going to be super quick because I'm blogging at work, but I wanted you to know that Diana over at Somebody Heal Me put together an awesome petition against CFL's being the only choice in light bulbs. As you may or may not know, CFL light bulbs can trigger migraineurs, and if these become the only light bulbs available, this can be a huge problem for us! You can sign it by clicking Here. Please go and sign this petition. It just went up and we already have 12 signatures, but we need many more!!!

Thanks!

I'll be back later when I have more time to give more info on this. Sorry this is so short.

Special K.....

2008-05-05T18:25:00.003-04:00

Well, at least that's what the kids call it.

Ah, yes, ketamine.

I was recently reminded of this drug when I was over at the Migraine News Network which is also my friend Rain's site.

In one of her recent posts, she mentioned an article, Night club drug could ease depression, on how ketamine can actually help ease depression!

For those of you who didn't know, ketamine is also used in IV therapy for migraineurs. See this wonderful article:IV therapy for Refractory Migraines by Teri Robert about Dr. Krusz down in Huston who is know for his IV therapy and of course, his kind nature towards patients! Love ya Dr. K!!!!

I found this funny because well, back in the day I used to go to the club, and although I never personally did "K" or "Special K" I just remember all the hanging "K"s all over the place (think the Kellogg's red K).

Also, I had a friend that worked for a dentist. Well actually and oral surgeon. His drug of choice for putting children under? Ketamine! Yes, he would put these children into a K Hole because the side effects from the Ketamine are less then those of the other drugs.

The one little interesting side effect of a "K Hole" is that as you come out of it, you act as if you are a child again, like in utero. Yep, you may actually curl up in the fetal position and gurgle like a little baby. Interesting side effect isn't it?

Now, of course, the amount being used for IV therapy for Migraineurs is obviously not the same amount as what a dentist would used to actually put someone under....

But I still found the whole thing very interesting.....

And the winners are....

2008-04-28T19:18:00.004-04:00

The winners of the 2008 My Migraine Connection Poetry contest were announced today. The winners were selected by MAGNUM. Please check it out!

Oh and big kudo's to my friend MJ who took third place Congrats MJ! (you can visit her blog at Rhymes with Migraine ) and you can read her poem and the rest of the winners by checking out My Migraine connection at this link right here!

One heck of a week....

2008-04-25T21:12:00.003-04:00

Just a little update here.

Up until now, I've been pretty lucky. I have been averaging about one migraine every sixteen days. This has been my pattern since January, when Dr. Greene put me on the Amitriptyline, which was added to my Topamax.

Well - this week has just proven to me that I can still take a step backward.

"Just when you thought it was safe to go back in the water." (for those of you who don't know, this is the famous tag line from JAWS, which is one of my all time favorite "horror" movies and the reason I don't swim in the ocean)

I had three - yes three, migraines this week, including today - right now. The first two this week started out at tension headaches that I could not get rid of with my normal Skelaxin, and then went into a migraine. After I took a Frova on both of these occasions, Mr. Migraine went away.

Today was a different story.

It started out very small and quiet. I thought, "oh, no big deal, I'll throw some Skelaxin at it while it's at a 0/1 and I'll be good to go". Well that didn't help so an hour later I ended up taking a Frova.

The Frova knocked the pain down from it's then 4 to about a 2, but the throbbing in my left eye was still there and reminded me every time I moved. Along with the oh so lovely nausea. Thank God I had learned earlier in the week from my girl MJ (see her blog at Rhymes with Migraine ) had mentioned something about how Ginger Altoids help her....low and behold we had them in the kitchen at work! So I ate my weight in them today.....

I get home and Mr. Migraine is still alive and kicking. I end up resorting to my rescue drug, Vicodin. I only take half tabs because of course, the whole pill will make me nauseous. So I had a half and was good for about 3 hours, now I feel it creeping back up again. Oh what fun it is!

I really can't think of what caused this sudden spike in migraine activity, except the change in the weather. Everything here in good 'ol New Jersey is in full bloom, although I don't seem to be having any allergy symptoms.

Oh well. Ya win some, ya lose some.

If this keeps up next week, I'm definitely going to call my neuro and see if I can get in a litter sooner then my scheduled appointment in July.

I hope the rest of you out there in migraine land had a better week then I did!!!!
Enjoy the weekend!!!!

The honest to god truth....what I put in my body everyday.

2008-04-21T20:51:00.004-04:00

So I thought it would be good to let my readers know exactly what I take everyday, for those maybe not as familiar with Migraine Disease. Yes, at age 30 I have over 5 scripts and take a total of I think 10 pills a day. Here we go:

A.M.
Topamax - 25mgs
Multi Vitamin
Magnesium - 650 mgs
Calcium - 1000 mgs

P.M.
Topamax - 50mgs
Amitriptyline - 20 mgs
Melatonin - 5mgs
Jolessa - one every night

And on an as needed basis:
Frova -2.5 mgs, allowed up to 3 pills per day if needed - but not more then 3 times a week or may lead to Medication Overuse Headache
Skelaxin - 600 mgs - as needed up to 4 a day for Tension Type Headaches
Tigan - 400mgs as needed for nausea
Vicodin - 500mgs (I split them in half) as needed for Rescue

Yep, so I think that's about it, and that's not to mention the vitamin C that I take to help my TTH's go away faster.....

So although you may think by looking at me "You don't look sick" - remember to not judge a book by it's cover. I sometimes feel like a slave to the drugs that I take. If I don't take them, I get very sick. If I take to many of them, I can get very sick. It's quite the balancing act us migraneurs play.

So this was just a little peak into my world. I don't think I've actually ever broken it down before. Wow!

Blog Carnival Posts are up!

2008-04-15T19:45:00.002-04:00

Yes, I didn't put this up right away - we had some Internet issues the last few nights and finally we have things up and running! Yippee! In touch with civilization again!!!

On April 14th, Diana over at Somebody Heal Me announced her blog carnival!!

There are some wonderful entries, 14 in total!! Some names I recognize, some I need to get to know!! My friends Teri Robert and Megan Oltman both have submissions up there, along with many others, so please check them out!!!!

Ok guys I promise, that's it for tonight!!!

See you got three in one day!!

2008 Putting our Heads Together Poetry Contest!!

2008-04-15T19:18:00.004-04:00

What a great way to express yourself and raise awareness!! Brought to you by Help for Headaches and My Migraine Connection, and judged by MAGNUM: The National Migraine Association.

Lead MMC expert, Teri Robert has helped put together this great event, sponsored by her site, Help for headaches and the Health Central site, My Migraine Connection.

Entries need not be long, I was looking over past entries today and got inspired to write my own! Even if this would be your first poem or written word, feel free to enter it!!! It would be a wonderful way to express yourself and get your thoughts out there!!

The deadline for entries is April 21st, and winners will be announced on April 30th.

You can enter the poetry contest by going to MMC at this direct link Here.

Please show your support and enter!! It will be fun!!

Migraine Haiku

2008-04-15T12:06:00.003-04:00

Frova please save me

From my misery and pain

Go away migraine!

I used too.....

2008-04-12T09:10:00.011-04:00

There are certain things that this girl can no longer due because of migraine disease.

I used to be able to stay up late, get up early, live on hardly any sleep - no more! Those days are long gone! Now it's in bed by 10 - 11 at the very latest. Waking by 8 at the latest, even on weekends. Yes, even 8 is sleeping in for me, I'm usually up by 7, but try to get another hour of sleep.

I used to be able to hang out and drink red wine, or anything (except brown liquor!, that's always been a no-no!) for that matter and get a little, shall we say, "socially lubricated" to not say "drunk" LOL - now, there is no way that I can even get past a half a glass of wine, which is usually white, since red is a trigger for me. My medications make me feel intoxicated after about 5 sips, so yes, now I am the lightweight of the group.

I used to be able to cardio kickbox - and I loved it. I loved taking the classes, doing it at home with a video or something. Now, I'm afraid that the bouncing motion will jar my head and bounce my brain around too much and cause me to get a migraine. I really can't even run on a treadmill anymore because of the bouncing impact of it.

I used to be able to blast my music while driving in my car.....oh I think I have the hardest time with this one!!! I still do from time to time, but I usually have at least a low grade head pain that I really can't listen to anything loud. Oh but to remember the days of just blaring the radio and driving around....that was fun. I used to love that.

I used to not have to worry about these things and just live my life. Now, I feel like I'm on constant look out for triggers and possible pitfalls. Don't get me wrong, it's not difficult. It's just annoying to feel like I'm a prisoner in my own body. It could be worse, I know. I am not trying to cry the blues. I just miss some of the things I used to be able to do.

Fighting the good fight.

2008-04-10T18:05:00.004-04:00

The road to "recovery" or just I guess a better word would be "managing" migraines can be a very twisty, windy road, with lots of branches and speed bumps in your path.

I started on my journey to gain my life back from my head about 3 years ago now, when my migraines grew out of control. Back then, I didn't even know what a migraine really was, or even thought that I had them.

All I know is that I would be at my office every day with tears streaming down my face, not because I was crying (well, sometimes) but because the pain was so intense and the lights so bright, that my eyes would tear from the pain.

I thought this is something I just have to deal with, it's just a "bad headache". In a way I'm so glad I was wrong. At least now, I don't suffer alone.

I have found through education, which, sorry to say, really didn't start with my first doctor - all they did was throw some Zomig at me and say "try this when you feel your head start to hurt". Yeah, thanks for your time!!!!

Between doctor #1 and doctor #2 - I found the site and the woman that helped me change my life (holding back tears now). My Migraine Connection is the site, and the lovely Miss Teri Robert is the woman. This lead me to Teri's book, Living Well with Migraine Disease and Headaches. I think I read it in like 2 days! I couldn't put it down!!! It was everything I needed to know about migraines that my doctor didn't or wouldn't tell me (yeah, that's part of the title too! LOL)

So between the website, the book, and Teri - I knew that there had to be more out there for me. I saw another doctor and was scripted my first preventive.... Topamax.

Topamax became my life saver....but it didn't last long. I found myself on the MMC forum every day, asking questions, talking with people with migraine and going through the same things I was going through. I kept reading, learning and educating everyone I could on this disease, as fast as I could learn about it!

Now, I am trying to not only be my own advocate, but be one for others. I now host on MMC with Miss Teri who is the end all, be all of migraine knowledge, among other things she is one of the nicest people I've ever had the pleasure of speaking with.

So you ask me how I cope with what I know know is a neurological disorder that effects over 36 MILLION Americans?

I learn. I teach. I fight. I educate.

I go to sites everyday to see what's what with the latest on migraine - blogs, MMC, email alerts anytime Migraine is mentioned ANYWHERE on the web!!! Yes, maybe it's become a little obsessive, but this is not like any other disease, at least not that I know of.

There are hundreds of different preventive medications currently being used for migraine treatment....it can take a very long time for a migraineur to find the one - the one that works. I try as hard as I can to be my own advocate. I learn about this disease, sometimes to the point where I know more then the doctors treating me (and that's when they get fired!).

I am out there, fighting not only for myself, but for all of us migraineurs - fighting to get us more funding, by sending out emails and posting about the AHDA. I'm leaving the flyer's in my office, giving them to friends, family, my doctor, pretty much anyone who will take one and give me two seconds to explain how important this really is.

This is how I cope. I cope by fighting the good fight. I cope by knowing, we can and we will make a difference.

We are one voice united, and if we all fight together, together will succeed.

What you do when it all comes crashing down.

2008-04-05T10:02:00.012-04:00

So I had a great run this time. I went 17 days migraine free. I was not even done with my "migraine euphoria" post yesterday when I felt the beast start to dig it's claws into my head.

I have to say, it was not as bad as I thought it would be, head wise....but the nausea - oh man - all day long!

The one this I was really upset about was I actually had plans last night - yes, me - LEAVING THE HOUSE plans!!! Shawn and I still went out....my migraine had calmed down by then, but I still had the side effect of my postdrome.

Ok raise your had if your flesh aches after taking Frova!!! I swear it is the strangest side effect ever for me, I can take it considering that the Frova attacks my head and knocks out that migraine in a matter of an hour, but why does all of my flesh hurt after????

Sounds strange right?? It used to just be the back of my arms ached - now I noticed it's all over that I ache after taking it. I used to only get achy if I had to take two doses, now I notice it on one.

Please dear God don't make the Frova stop working!!! That is my biggest fear!!!! I can take the flesh pain!!! Yeah, all of my skin, and under it like the meat on my body aches when I touch it....I don't know...it's gone today and so is the migraine so I'm happy about that.

Ok, well onto some other exciting things. Yes, I'm going to plug some of my friends here so consider yourself warned!!!

We went to see our friends Insouciant Play last night - you guys please check them out - they are really good!!!! We had such a great time!!!

Also - My husbands band Annoying Customer is going to be heading into the studio to do some recording next weekend!!! Yippee!!!! I am so excited about this!!! Check them out too!!! I am especially fond of their new song "Mongoose"!!!! So please take a listen to both of them!!!

And last but certainly not least - we have Daina over at Somebody Heal Me Who announced her blog carnival yesterday!!! So for all who are interested please check out her site for details. The topic this time around is "strategies for coping with headaches and migraines". The deadline on this is midnight April 11, 2008 - so if you are interested, please go check her blog out for more info.

Ok kids, that about wraps it up for today!!!

Until next time - take care of yourself and be kind to each other.

AHDA needs letter sent TODAY!!!! ACT NOW!!!

2008-04-04T09:10:00.003-04:00

Ok - sorry this is going to be a super quick one because I'm working - but I just got my AHDA action alert email which I will paste below - please go to the site http://www.allianceforheadacheadvocacy.org/ and email your senators - RIGHT NOW - TODAY - LET'S GO!!! MOVE IT!!!

Please Email Your Senator Today!
Dear Mrs. Gray:
Our efforts last month to urge members of the US House of Representatives to support increases in NIH funding for research on headache disorders were highly successful. Twelve Representatives signed the Obey/Walsh letter. This is an outstanding result for the first mobilization of our numbers, and we are optimistic that it will be enough to have our message appended to the House appropriations bill.
It is now time to contact your US Senators for the same purpose. Unfortunately our window of opportunity is only narrowly open. The letter with Senators' signatures must be submitted by today, April 4th.
Please take just 5 minutes RIGHT NOW to go directly to http://capwiz.com/headacheadvocacy/home/ and send your message to your two US Senators
Please forward this email right away to anyone else concerned about the inadequate state of care for patients with headache disorders.
Only with increased research will new effective treatments for headache disorders become available. And only with your help will such research activities increase to levels appropriate to the huge scale of this problem. The larger our voice, the greater will be our impact.
Thanks again for your efforts.
Robert Shapiro, MD, PhDWilliam Young, MD,Teri Robert, PhDBrad Klein, MD, MBA

Migraine Euphoria - love it or hate it?

2008-04-04T07:40:00.004-04:00

Let me explain for those who don't have the pleasure of experiencing this. I think that I only know one Migraineur besides myself that gets this and that is my friend Heather, (please visit her blog The Journey of a Migraineur )

Ok so Migraine euphoria aka waiting for the other shoe to drop. It's when a couple days before a horrible migraine, I get extremely happy, euphoric, crazy, etc. I feel like jumping out of my skin, act like a freak, talk a mile a minute (ok, well that's normal), clean, clean, clean - jump around, dance and feel like my skin is buzzing.

This is both a blessing and a curse.

It reminds me of the days of "what the hell is a migraine??" Back before my life was turned inside out by this disease that I now feel I have to watch everything I do for the potential ramifications. I feel carefree and happy.

The down side is - this usually means a big mother is on the horizon. I very rarely get this way, but when I do - a big one is lurking around the corner.

So what do I do? Enjoy it? Take it for what it is? Analyze every second of it, waiting for it to stop and the pain to begin?

I used to almost force myself into a depression over it, knowing this is not a good sign. Now, this time around, I've had this feeling for 3 days. Maybe it's just that I am in a good place, I've been migraine free for I think 17 days now - (woohoo!!!). Maybe it's just that I'm finally feeling good.....am I waiting for something that won't come?

My usual prodrome protocol is nausea or heartburn, increased visual floaters, tinnitus, smells, sometimes hearing things. I have had none of this, well a little tinnitus, but that is about it. So am I over reacting? I don't know.

I've decided to just ride it out and enjoy feeling good.

At the first sight of pain though - I am popping a Frova as fast as I can get it out of it's stupid packaging!

Till then - Take care of yourself and be kind to each other.

Please sign up for the AHDA email alerts!!!

2008-04-01T17:46:00.002-04:00

This is my first shot at solo video.....it's not great, but it gets the point across. I'm putting this rough draft up now to get you all to move your butts and sign up for the AHDA email list. The second wave of emails are coming up - and we don't want you to miss it!!!! Please, sign up at The AHDA website NOW!!!!!

AHDA letter deadline - TODAY!!!!

2008-03-17T09:28:00.000-04:00

As most/some of you may know, I volunteer with Mymigraineconnection. com and have the honor of working with the lovely Miss Teri Robert.

I have a favor to ask you. We have a letter that needs to be singed. It's the Obey/Walsh letter. This letter will help us get better funding for migraine disease. We need to push our congressman to sign this letter.

Today is the last day for our congrassman to recieve OUR letter.

Please, if you could take 2 seconds, click on the link below and fill out the letter, I would really appriciate it. It's for better migraine funding.

Thank you to all of you!!!

Eileen

Time is running out to email your member of the house .
Dear AHDA Advocate ,As of this morning, AHDA records indicated that you have not yet contacted your Representative. This is just a reminder that time is very short to contact her/him regarding the Obey/Walsh Dear Colleague Letter. Monday is the very last day for your Representative to sign this important letter.

If you have already sent an email through the website and have not received a confirmation email, then it may not have been accepted. We have had a handful of reports of this happening. We are very sorry about this bug, but please send the email again.

If you haven't sent an email yet, then please find just five minutes to do so as soon as you can.

All you need to do is to directly to http://capwiz. com/headacheadvocacy/issues/alert/?alertid=11128631&PROCESS=Take+Action, add a personal paragraph if you wish, fill in your contact information that's needed to email a House member, and click the "Send Message" button.

If you click the box next to "Remember Me!" near the bottom, your personal info will be there the next time you send an email through our system. You may also want to keep a copy of what you write in case you want to use it again when the time comes for us to email your Senators.

If you have any questions, please feel free to email Teri Robert at teri@headacheadvocacy.org.

Many, many thanks,
Robert Shapiro, MD, PhD; Burlington, Vermont
William Young, MD; Philadelphia, Pennsylvania
Brad Klein, MD, MBA; Philadelphia, Pennsylvania
Teri Robert, PhD; Washington, West Virginia

Went to the neuro today and....

2008-03-11T19:48:00.000-04:00

Everything went great! My migraines are improving. I've had less this month then in the previous 6 months!!

We discussed options, and since this new Topamax/Amitriptyline combo seems to be working right now, we are not going to mess with it. We may increase the Topamax a bit, but only another 25mgs.

He gave me samples of almost everything I take! Skelaxin, Frova, and Topamax! He refilled my Skelaxin, he felt since I am not taking it as often, since I've tried to cut back, and also since I am getting less tension headaches, that since it works, don't mess with it.

That is pretty much it. It was a good visit. Nothing new though. We are keeping everything as it is.

I did discuss sleep with him. He said he didn't want to prescribe me anything right now, since my migraines are improving, let's see how I am the next visit and if it's still a problem, we will go from there.

So I have no complaints - me, not complaining - imagine that!

Neurologist appointment tomorrow

2008-03-10T18:00:00.000-04:00

I'm looking forward to it. I hope that things go as I think they will. I feel I've finally found a doctor I can work with.

My goal this appointment are to:

1. Find something I can take for if I get a migraine at work and nausea is really bad. (I have Tigan now, but I get way to sleepy to take it at work)

2. Discuss other options other then Skelaxin for my Tension Type Headaches.

3. Can I please, please! come off the Topamax now???!!!

We will see how it goes.

I will hopefully get a chance to get on here and update tomorrow.

A month in....my thoughts

2008-03-05T18:03:00.000-05:00

I've been on my new combo of Topamax and Amitriptyline for a little over a month now...and I have to say I'm undecided still.

I know it's still too soon. It can take up to six weeks - but that's next week and also my next neuro appointment. Here's my progress:

I've had a migraine about once a week on average since the Amitriptyline. I have, however, noticed less tension type headaches, which is good! So I'm taking a lot less Skelaxin. Also during this time, I hit my first placebo week with my new pill, so it was the first one in three months - ugh! That was a trip and a half. I almost ended up in status migrainous AGAIN! Four day migraine and then it was over. BUT considering all that, I think the Amitriptyline is working somewhat. I think my tension headaches are down, which means that it is hopefully taking care of the transformed migraines, which was the purpose of me going on it in the first place.

The down side:

I want to eat...all...the....time!!! I try to curb it, and yes, it has tapered off some since I've been on the same dose of Amitriptyline for over 4 weeks now...but yeah, I still have the sweets craving, which I had anyway, but the Topamax made me not hungry enough to actually indulge.

So, I go back to Dr. Neruo on March 11th. and I will have another update then. I really need to get on here more often!!!

New Neuro, New Med!

2008-01-27T09:23:00.000-05:00

So Tuesday I finally got to see my new neurologist. I was excited and also, to be honest, a little ready for let down. This was now the 6th doctor I was going to see for my migraine disease. I guess the 6th time is a charm!

Compared to the other twits I've seen, this new doctor, from now on, I'll call him Dr. G, he actually LISTENED to me. TALKED to me and TREATED me like a human, on his level and the same planet he was from. Not like those "other" doctors who talked down to me and made me feel like I knew nothing about this disease I have. I've probably done more research on migraine disease in the past 3 years then these doctors have in their lives!

Anyway, I'm getting riled up. Back on topic. So Dr. G listened to me and says he thinks I have transformed migraines. And no, that's not when your migraine turns into a robot. It's usually from over using medication....or at least in 80% of the cases. But for me, it's not since I tend to under use it.

So Dr. G and I discuss options. We talk about the Topamax that I've been taking for about a year and a half now, and how it's not working anymore. We decide it's time to get off of it. But first, we are going to add in Amitriptyline on a low dose to get the transformed migraines under control. Then back off both the Topamax and the Amitriptyline.

Amitriptyline is a Tricylic antidepressant (TCA) and used in low doses, can be a good preventive for migraines.

I'm just concerned because one of the side effects, like the second one, is "may cause increased hunger....especially for sweets" Awesome! Just what I needed, and increased appetite for sweets! Why couldn't it be like "may cause you to want to eat salads all the time" or "may cause excessive urges to work out"....nope, this is going to make me want to sit down with Ben and Jerry and just chow!

Yes, I know - all side effects are potential, but you know this one is going to happen to me, since I'm the one who went to culinary school to learn how to make all those sweets!!!!!

I guess time will tell. I'm on my second day of 10mgs. of amitriptyline. I stay on that for 2 weeks and then I go up to 20mgs.

I hope it works. I am so done with feeling like crap. I had a migraine all day yesterday. And, since I've already maxed out my abortive for the week, I was on Vicodin all day, which did squat. All it did was make me loopy. I still couldn't sleep, the pain was still there, and I was just a zombie all day with what felt like a knife going through my skull!

Well that's about it for this round.

I just wanted to take a moment to remember my cousin Joanne who passed earlier this week. She was only 55. She had a brain tumor which the doctors said was inoperable. It all happened so fast.

Joanne never married or had any children.

I will remember her for her long black hair, her sarcastic humor (I think that's where I get it from!!!!), her love of the Yankees and her love and dedication to her family.

Joanne - even though we were not that close - you were my "cool cousin" and I will miss you terribly. You were taken way to early and I'm sorry that it had to happen that way. You will be missed.

Up and coming doctor visit

2008-01-14T19:09:00.000-05:00

I had gone to see my primary doctor a month or so ago and she referred me to a new neurologist, since the last headache specialist I saw was, well, horrible (don't worry, I won't mention your name and ruin your career here).

Come to find out, he actually studied with my at the time neuro that I was leaving because she was no good. Makes sense now, right!

Anyway, so my primary referred me to this neuro and when we were having our holiday party at work, the doctor group that I work for mentioned him too! So now I am excited to see him. He seems to have a good name with the other doctors in the area which is awesome. The doctor group I work for says he is a pain in the butt, always wanting tests done yesterday.....which is great...they agreed.

My big question latley has been "Do I have IIH?" Which is Intercranial Hypertension, formerly called Psudotumor Cerebri. IIH is increased spinal fluid in the brain that the body cannot absorb. It causes pressure in the brain, which can lead to no trigger migraines. I have a lot of these! The only way to test for IIH is by a lumbar puncture. Supposidly this new neuro has no problems with that and orders them frequently. Other doctors, including "Mr. Headache Specialist" stated to me that if I didn't have papilladema, that I could not have IIH - FALSE! And he is a specialist! This is why I never went back!

So I am getting a list of questions ready for my hopefully new neurologist. I hope that he is good and that we can work well together. I feel like I've been through enough bad ones, it's time I get a good one for a change!!!!

Wish me luck! My appointment is on the 22nd!

Support for Migraineurs!!!

2008-01-02T18:53:00.000-05:00

Since becoming a host on My Migraine Connection, I've become very involved in wanting to do SOMETHING, ANYTHING, to raise awareness and support for migraine sufferers. I don't care if it's handing out flyer's on the roadside, e-mails, what have you....I just know that I have to do it. Not only for myself, but for the family I've meet on the forum.

I admire Teri Robert so much for what she does every day for all of us. If I can do half of what she does, I would be happy.

Here are some statistics as to what lights my fire....aside from being the obvious sufferer.

*According to a study published in the April 1999 issue of the Archives of Internal Medicine, migraine costs American employers $13 billion per year due to missed work and reduced productivity.

*It is estimated that 157 million workdays are lost annually because of the pain and associated symptoms of migraine. (Source: National Headache Foundation)

*Most children who get migraines, have at least one close family member who suffers from migraines too. If a child has one parent who suffers from migraines, they have a 50% chance of getting them too, if both are sufferers, this rises to 75%.

*Migraine alone is the 12th most disabling disorder in the US.

With facts like that, we need more research! We need better treatment!

Now is the time to act!

Please visit Alliance for Headache Advocacy and sign up for emails. The site was put together by my friend, the lovely Miss Teri Robert , along with one of the top headache specialists, Dr. William B. Young, of the Jefferson Headache Center.

Also, see that little badge over there to your right? You'll find that on the Alliance for Headache Advocacy page too, I encourage you to click on it, it's your friend! Donate! Donations are as little as $10.00 and are tax deductible. The American Headache Society will even send you a nice letter thanking you for your donation! Please! Donate now and donate often! We are not even to the half way point to where we need to be.....$10, it's not a lot - you can do it!

Thank you all so much! Thank you for reading! Thank you for your support.

Oh the holidays

2008-01-02T17:17:00.000-05:00

So this holiday season was rough on me, migraine wise at least. I had a bad run from the Saturday before Christmas till, well, I may still be in it!

I think I have had my worst migraine ever. It started this past Saturday. I awoke with it at 6 a.m. and it just didn't stop. It lasted all day Saturday, Sunday and finally broke on Monday, right before it would be considered Status Migrainous.

For those of you unfamiliar with Status Migrainous, its when a migraine attack lasts longer then 72 hours. This is with not counting while you are sleeping. If there is less then 4 hours pain free during that time frame, then you are in Status Migrainous. It increases your risk for stroke. You should at this point, call your doctor or seek attention at the ER or IMCC.

Most of the time, the ER can give you DHE injection, magnesium sulfate IV, Toderal, or narcotics. I personally advise against the narcotics approach and would say up front that I wish to NOT be treated with narcotics.

See, a big problem migrainuers face is that drug seekers use "migraines" and "back pain" as a way to score narcotics from the ER. So, that being said, sometimes, you may run into some resistance from the ER staff. If you say up front you'd rather not have narcotics, this may get you treatment faster and the help you need without the glaring eye.

My pain finally went away - just in the nick of time. I had to take 3 Frova over the course of 3 days, Skelaxin and I think maybe there was some advil in there too. I also took Tigan for nausea which was horrid!!!!

I hope that is as bad as it ever gets, and I never have to go through it again.

I did, however, make an appointment with a new Neurologist, which is on 1/22/08. I am also trying to get into a headache clinic and I am awaiting a call back from them.

I had a mild - I say mild because compaired to the last one, this was a walk in the park! - migraine today. I think one Frova and two Skelaxin seems to have done the trick.

Let's hope this is the last of it and I get some pain free days for a while! That would be nice!

Almost two weeks! woot! woot!

2007-12-10T17:27:00.000-05:00

So ladies and gents, I am on my 12th day of no migraines!! I have been feeling pretty good! I thought I was coming down with a cold on Sat. so I started dosing the Airborne - and it went away!

I felt a bit of pressure today - but so far, so good. I promise I will be on here soon to write something acutally worth reading. I have things in my head, I just need the time to sit down and get them here......

Wow a weekend went by and no pain!

2007-12-03T18:00:00.001-05:00

I have no idea how that happend! But, I am on my 5th day of no migraine (please, keep clapping to a minimum) I have felt pretty good the last couple days. I really don't know why!

I've been on Jolessa now for 4 weeks - so this is the week I would normally be taking a placebo - so here's to hoping that the Jolessa breaks my menstrual migraine spells!!!! That would totally rock the hizzy!

For those of you who don't know - Jolessa is the generic Seasonale. So instead of taking 3 weeks of pills and then a placebo week, I now will take 12 weeks (I think??) of pills and then a placebo week. Plus the pills are all the same stregnth, unlike the ortho, which got stronger and stronger and then dropped you off a cliff with no hormones! UGH I think that was the worst of my issues! So we will see how it goes.

No migraines and no period???!!!! Is that even possible!!!! Oh I would so love that!!!

Insurance jargin you need to know

2007-11-28T17:24:00.000-05:00

Ok - so after a stressful day at work I am putting this out there because the bottom line is - you should NOT have health insurance if you don't know this stuff! So stop calling my office and asking me why you have a balance if it went towards your deductible - here is your explanation.

In-network: This means the place you are going (hospital, doctor, etc) is contracted with your insurance company. They MUST accept the contracted rate in which your insurance pays them. This DOES NOT mean you will not have a balance.

Out of network: Providers are nonparticipating with your insurance and can balance bill you for whatever your insurance does not pay. Example: Your X-ray cost you $200. Your insurance only paid $50. That provider can bill you the balance of $150.

Contracted: This means the place you went (doctor, hospital) has a written agreement with your insurance to accept payment directly from them and accept a negotiated amount on your claim (they don't pay it in full and there is a discount).

Claim: The bill for your services

Deductible: This could be an IN or OUT of NETWORK deductible. You may have 2 - you may also have an individual and a family one to meet each year. This is an amount you have to pay each year before your insurance starts to pay claims for you.

Co Insurance: This is usually an amount left after insurance. Such as your insurance pays 90% and you are responsible for 10% of each claim.

CoPay: This is what you pay for a doctor visit, specialist, hospital. Also what you pay at the pharmacy for your prescriptions.

Invisible provider: This is providers that work within a facility that you may not know about but bill separate from the actually place you went. Example: you go for an X-Ray at the hospital. The hospital charges to do the exam (use of the room and equipment). Then there will be a professional fee for the reading of the exam from the radiologist. Sometimes this provider is a separate group from the hospital itself and will bill separate. This also happens with ER docs, lab work, etc.

Reprocessing: Your insurance is looking at a claim they already processed and looking at it again to see if it was processed correctly.

Duplicate: the claim was received more than one time by the insurance OR more then one of the same exam was done on the same day and more documentation is needed.

Coordination of benefits: Every year, some insurance companies waste time wanting you to fill out a form saying that you have other insurance or if things are the exact same as they were - I look at it as a waste of time and an excuse for them to hold up claims.

Explanation of benefits (EOB): What your insurance sends you and the provider of service telling you how they have processed your claim.

Pre-existing condition: UGH I don't like this one! This means that before you had said insurance, you had a condition that they feel they now will not cover your services. Sometimes there is a limitation on this, where after a time period they will start to cover it.

Medical Records: This comes from your doctor, or whomever treated you - NOT the billing office, we do not have this info, sorry.

Ok kids, that's your lesson for today! There will be a quiz on this later in the week.

Ugh - Monday!

2007-11-26T09:07:00.000-05:00

So, It's Monday - after a nice long weekend and I'm tired! I can already feel my head throbbing. It's up the left side of my neck and into my left eye. I was in to work about an hour and a half before anyone else. I thought if no one else showed up I would leave, but alas, they did.

My aunt is doing ok. The doctors found nothing after her turkey day fiasco. She stayed in the hospital till Friday evening. It's just so strange.

I think it is going to be a Frova day today. That and positive thinking. It's a gross, rainy NJ day out there. My migraine is probably weather triggered. That's all I can come up with at the moment. I'd much rather be here:

But for now - I'll sit here in dark glasses, try to go unnoticed and down a Frova.

Oh what an exciting Thanksgiving - how are we going to top this one next year?

2007-11-23T08:19:00.000-05:00

So I didn't end up making it to my full "6 days no migraine" like I really thought I would. I don't know who I was kidding - I was prodrome for like 2 days....I guess I just didn't want to believe it. Oh well. It wasn't bad, I got that baby the second it started so it wouldn't ruin my turkey! - gone in about 20 mins but the postdrome stayed with me all day like a narcotic hangover or a night you were out too late partying (man, have not done that in YEARS!)

So I knock out my little migraine monster and head off with my husband to my aunts house. We had a very lovely time there. Everything was wonderful. We were sitting around the table having dessert after dinner, ya know "girl talk" when all the men go lay on the couch for "turkey naps". And we're talking - and all of a sudden we notice my one aunt is unresponsive. We start calling her name, nothing. She looked as if she was looking under the table a bit, looking at the cat. Then we thought she dozed off for a second. We kept calling her name, nothing.
We started to gently shake her. - by this time - the cell phone is in my hand and I'm dialing 911. My aunt has had a history of seizures and other problems....she's 80 for crying out loud! So I call 911 - I tell the dispatch that she is 80 and unresponsive but breathing. They are sending someone.

My cousin is holding her up to not fall out of her chair - she is still not responding. Then she starts to breathe a little heavy - rub her forehead and look like she is going to cry. I can only describe this by saying if you've ever watched someone having a nightmare? Or a baby sleeping (like a 3 month old) That is how she looked, like she had the mannerisms of a baby.
She rubbed her head, we kept calling her name. She started to look around and say something, but we couldn't figure out what she was saying. My other aunt kept saying "who am I" to see if she knew who anyone was....she didn't know. Then she opened her mouth really wide and took this big gasp and was kinda "back". She was still a little out of it. But once she realised I called 911 she was ticked!!!!! I almost started yelling at her like "you have to be checked out you were not responding and something happened!"

So the paramedics, rescue, police, you know, the whole darn town show up. They checked her out and said everything seemed ok. She knew we would all be mad is she did not go to the ER so she went. They did more tests, still nothing but they kept her over night to be sure.
See the problem is my aunt has had 3 seizures that we know of. We don't think she is being completely honest to the family about her condition. And seeing as she is as stubborn as a mule, she won't let anyone go to the doctor with her.

I know she is on a lot of blood pressure medication, but what I don't know. I also know she is taking Keppra twice a day.....but I couldn't read what all was on her info and was distracted by what was going on.

We really want to get her somewhere that she has help but she is just stubborn. I'm sure they won't find anything wrong and she will be like "see I told ya" but there is something going on. Maybe it's just age? They told her before it's not TIA - she's never had a heart attack - I mean for 80 the lady is still very healthy!

So I'm sure I'll get more details of what happened today from my mother, but it was scary. I don't think she can be alone anymore, not if this is happening. I mean she didn't remember being out of it (I mean who does?) And she lives alone - what if this happens and no one is around? She needs to have some sort of an assisted living program, not saying they need to cook for her, but someone to check on her.

Here we go!

2007-11-22T12:32:00.000-05:00

So I decided to start a blog....

Here's a little about me. I am a migraine sufferer. For those of you who don't know, Migraine is a neurological disease that strikes 36 million Americans. I have had the honor of hosting at a wonderful site - My Migraine Connection which is run by the lovely Miss Teri Robert!

After reading her book, Living Well with Migraine Disease and Headaches I can honestly say it changed my life. I went from being just a sufferer to being an advocate. I am now so much more involved with my health care then I ever was before. Her book gave me my life back.
And, the forum setting she has created on that site is so comfortable - it's like talking with family - only they actually "get it"!

Since this is my first "blog" and I'm just learning my way around this thing - I'll just start with this.

If you are suffering from migraine - know there is help out there. You do not have to suffer alone. Migraine is a silent disease. It can also be very depressing. I know for me, there are many times when I feel alone and sad, depressed and like no one understands. Trust me - people do.

There are so many medications out there now to help control migraine - it's amazing. There are over 100 different preventives, in almost every drug family, Anticonvulsants, Beta Blockers, Anti-depressants, SSRI's, Muscle Relaxers, ACE inhibitors, Calcium Channel Blockers, just to name a few!

My current regimen consists of 75mgs of Topamax (anti seizure) which I take in a split dose, 25mgs in the morning and 50mgs in the evening. I also take a multi vitamin, 250mgs of Magnesium, Frova 2.5mgs to abort, Skelaxin 800mgs as needed, and Meletonin every night at bed.

That's just a bit about me - I figure that's good for a first post right? But because of my obsessive nature, I'm sure I'll be back on here later to post again!