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 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