10 month migraine with the recently added bonus of seizure

By gypsymother Tuesday, January 08, 2008

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As you can see from my title I am having a very hard time. No medication has ever helped, I have been on all the triptans, ergots, antiepileptics, blood pressure pills, inderol, etc, etc. They can't stop it, they won't medicate it and they don't know why it will NOT go away. I had a seizure (I do not have epilepsy, nor ever had one before) on New Year's Eve, I don't know for how long. My husband came home and found me face down on the floor in the throes of it. I bit a hole in my tounge, rubbed parts of my face raw and have bruises on my body so it must have been a doozey. I was incoherent for about 20 minutes after with no memory of the day. I still do not remember the spisode. Cat scan was normal, MRI- shows I have migraine but otherwise normal. When did "I don't know" become an acceptable answer from a doctor to a patient. I don't find it acceptable. So now they have adopted the "wait and see" approach attitude towards my health crisis. I am terrified that I will be driving with my kids in the car next time I have a seizure. I am sooo sick of my head hurting all the time and being asked to number the pain. To me it doesn't matter if it is a 4 or a 9, it ALWAYS hurts. Everyday, all day, even when I sleep I feel the pain. Some days I feel like my life is spinning out of control. Everything is falling apart. My family and my job are suffering and not a single doctor can or will help. What do I do?

Comments (7) | Add comment

Nancy Harris Bonk, Health Guide

1/ 8/08 2:22pm

Hello, and welcome to MyMigraineConnection.com!

I am sorry you are struggling so. You must be very frustrated and scared. Before we talk about preventive medications, I'd like to provide you with some material on Migraine disease, ok?

Migraine is a genetic neurologic disease. Anatomy of a Migraine discusses the four phases of a Migraine, and is very informative.

It may feel like you have tried every medication available to treat Migraine, but with over 100 different drugs out there, it just isn't possible. Especially when you add up the combinations, the numbers go up dramatically. Migraine Preventive Medications - Too Many Options To Give Up!

There is a form of Migraine disease, Migraine-triggered seizure. Criteria from Internation Headache Society's International Classification of Headache Disorders can be found below:

1.5.5 Migraine-triggered seizure
Description: A seizure triggered by a migraine aura.

Diagnostic criteria:
A. Migraine fulfilling criteria for 1.2 Migraine with aura
B. Aseizure fulfilling diagnostic criteria for one type of epileptic attack occurs during or within 1 hour after a migraine aura. Please understand I am not suggesting you have this, just offering some additional information you can take to your doctor.

Speaking of which, has your doctor ordered an EEG to monitor your brain activity for any other disorders? As difficult as it may be, you may need to find another doctor who will listen to you concerns and take them seriously. You cannot walk around with head pain for 10 months. We have a list of patient recommended specialist HERE.

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information on the main page of our site, MyMigraineConnection.com

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,

Nancy Bonk
MyMigraineConnection.com Expert

PS: If you receive this message from more than one of us, please excuse the overlap. Thanks!

gypsymother

1/ 8/08 3:19pm

My husband came home and hound me face down on the floor have the episode. It must have been bad because I bit a large hole in my tounge, had parts of my face rubbed raw from the carpet and have bruises on my body. When he was able to get me on my feet I was incoherent with no memory of the day's events. It took about 20 minutes for me to come out of it. I have no mrmory of it at all. Only kind of waking up with my husband shaking my by the shoulders and saying my name. What happened to me. As I said I have had head pain for 10 months, and that day it was very bad. In fact I had went to the dr, who wrote me a script for tylenol 3. I took 2 and a nap, 5 hours later I took 2 more and went back to sleep. That is all I remember until my husband woke me. I have been on codine many times, so it was not a reaction to that. Otherwise I don't know what is was. My dr is doing the wait and see routine. And that is really freaking me out.

GWP

1/ 8/08 2:41pm

I've been through the months-long pain thing, but I've been lucky and have never had a seizure. How horrible!

If your doctors aren't answering your questions, it's probably time for a specialist. General neurologists, even the ones with a special interest in headaches/migraine disease, also have to keep up with other conditions, including stroke and Alzheimers. They just can't keep up with the latest developments in treatment.

How long have you tried your preventives? My doc says it can take three to six months to give a preventive a fair trial. It's maddening and discouraging, but the only way to tell if a med is going to work is by trial and error.

I'm interested that your docs told you that your MRI said you have migraines. It's my understanding that CTs and MRIs are almost always normal for migraine sufferers. There's no test for migraine; it's a matter of excluding other causes for the symptoms.

I'm currently taking Lamictal, an anticonvulsant, for my preventive. I'm better. I'm still having head pain much too frequently, but the intensity has backed off a bit.

Come over to the Forum. Click on "Migraine Forums" in the orange box on the left of the page. You'll find folks going through much of the same stuff you're having to endure.

Hang in there!

Gretchen in Mississippi

gypsymother

1/ 8/08 2:59pm

Well the MRI showed white spots in my brain, but they said not to worry that is normal in people with daily chronic migraine. I have had migrianes since I was 14 and have done the trial and error thing. I have no insurance so my dr choices are very limited. No specialist is affordable for a woman with 3 kids that is separted

(just this month and will be getting divorced) from her husband. He treats my health conditions like personality flaws. Topomax is the only thing that ever showed any kind of improvement, but at 369.00 per month it is just not feasable for me. I am at my wits end and scared about this whole new symptom. I don't know anything about it, if it will recurr, what can be done for it, etc. I am so scared.

Nancy Harris Bonk, Health Guide

1/ 8/08 5:19pm

I know you are scared and your situation is not good. There are a few prescription drug programs out there that might be able to assist you. Partnership for Prescription Assistance is one. Walmart has a $4 prescription plan, you could check and see if any of your medications are on their list.

In 2004 there was a study done in the Netherlands to see if Migraine was a progressive brain disease. It found some Migraineurs have more dense white matter lesions. Is Migraine a Progressive Brain Disease?

Is there a University center near you? Sometimes the bigger schools have headache or pain clinics that take people without insurance at very reduced rates because they are teaching centers.

Let me know how else I can help, ok?

gypsymother

1/ 9/08 1:25pm

Thank you for your advice, my meds are not on the walmart list. I have already checked. There is a teaching hospital near here and I will check into that.

Nancy Harris Bonk, Health Guide

1/ 9/08 7:52pm

I'm sorry to hear about your meds not being on the walmart list, that stinks. What about the prescription assistance program: www.pparx.org ?

The forums are a great place for other ideas and support. Maybe we will see you over there. Keep me posted on how you are making out, ok?

10 month migraine with the recently added bonus of seizure

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