Monday, November 24, 2008

Awards and things.....




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




Thank you all!!!!

Thursday, November 20, 2008

My New Migraine Specialist!


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.

Monday, November 17, 2008

E is for.....

PhotobucketEducation! 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.

Saturday, November 1, 2008

A Confession.....

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!!

Monday, October 13, 2008

D is for....

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.






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.


Tuesday, October 7, 2008

C is for:

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

Monday, October 6, 2008

B is for:


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:






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.








Sunday, September 28, 2008

A is for:


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.

Saturday, September 27, 2008

The ABC's of Migraine

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!!!!

Monday, September 22, 2008

Cymbalta and a night in the ER




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.

Monday, September 8, 2008

Invisible Illness Week Starts TODAY!



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.

Thursday, September 4, 2008

Using a capital M

PhotobucketMy 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

Wednesday, August 27, 2008

Seems like everyone has advice....

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.

Tuesday, August 26, 2008

Shop for a cause!!!

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??!!

Monday, August 25, 2008

Invisible Illness Week - September 8-14

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

Saturday, August 23, 2008

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

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.

Thursday, August 7, 2008

Here we go again!!

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!!!


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

Monday, July 28, 2008

Happy Birthday to MJ over at Rhymes with Migraine!!

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

Happy Birthday!!!!
Humorous Pictures

more cat pictures

Please check out her blog at Rhymes with Migraine.

Tuesday, July 22, 2008

News: Topamax May Cause Birth Defects



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.

Tuesday, July 15, 2008

And the Doctor says.....

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!

Monday, July 14, 2008

It's been a busy week!

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.

Friday, July 4, 2008

Happy Anniversary to Me!!!!



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!

Thursday, July 3, 2008

I've got a contract with HealthCentral!!


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!!!

Tuesday, July 1, 2008

Back from Boston








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!!!

Thursday, June 26, 2008

First day of conference


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!

Tuesday, June 24, 2008

Off to Boston in the morning!!!

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!!!!!

Tuesday, June 17, 2008

Mourning Becka

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!

Thursday, June 5, 2008

I LOVE THIS VIDEO!!!

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!

Tuesday, June 3, 2008

National Headache Awareness Week! June 1-7

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!

Sunday, May 25, 2008

One hour? You've got to be kidding!

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!

Friday, May 9, 2008

Protect Migraineurs from compact fluorescent light bulbs

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.

Monday, May 5, 2008

Special K.....

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.....

Monday, April 28, 2008

And the winners are....

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!

Friday, April 25, 2008

One heck of a week....

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!!!!

Monday, April 21, 2008

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

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!

Tuesday, April 15, 2008

Blog Carnival Posts are up!


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!!


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

Frova please save me

From my misery and pain

Go away migraine!

Saturday, April 12, 2008

I used too.....



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.

Thursday, April 10, 2008

Fighting the good fight.

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.