Tuesday, September 15, 2009

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

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.

Tuesday, September 8, 2009

30 Things About My Invisible Illness You May Not Know

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

Wednesday, July 29, 2009

Things A Person With An Invisible Illness Hate To Hear

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!

Tuesday, July 14, 2009

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

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.

Tuesday, February 24, 2009

Help Your Local Shelter!

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!

Tuesday, February 10, 2009

Head hurts

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.

Saturday, February 7, 2009

Headache on the Hill is 2 Weeks Away!!!

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.


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.


Bob Shapiro

Bill Young

Teri Robert

Brad Klein

Alliance for Headache Disorders Advocacy