Migraine

A little background~
I had surgery in April... immediately after the surgery (while still under anesthesia) I began having seizures.
After coming home (and while healing from surgery) I was suffering from miserable headaches and (aura) migraines... and then unexpectedly had "muddled" thinking, garbled speech, blurred vision and paraylsis on my left side.
My Primary Care Dr. had a MRI and a MRA done.
Then, bless him, he sent me to a neurologist (& headache specialist)
who had a MRV and an EEG done.
I was told that I have a migraine variant...
That the anesthetic had depressed the pain/stress threshold leading to the nerves in my brain staying "excited".

I was immediately put on "Topamax".
We also began working on reducing things around me that were "exciting" the brain bringing on migraines (hemiplegia).
Lights, sounds, ect.

Would enjoy hearing from others who have also been diagnosed with sporadic hemiplegia.

...Marta....

Hi Marta--

I am very new here as well. I will not be much help to you, but wanted you to know that you are not alone. I have heard from others here that have been very helpful and have tons of info to share. I had never even heard of HM until a couple of months ago. Certainly life altering to say the least. I have been taking Topamax for about 3 weeks, not seen a lot of improvement yet. I am still having approx 3 episodes per week, certainly not great. I am just beginning this journey it seems. I look forward to learning from others here as I go along. Best wishes to you.

HI Marta,

Welcome to our group. I too have HM. You will find several of us here as well as great information.

Has the medicine combined with trigger elimination reduced your symptoms?

My story:
I'm an 11 year migraine sufferer. In July however, my migraines accelerated to daily, severe, and quite different with all these neurological problems. On August 20 I was hospitalized for 5 days with seizures. Since that time, I've been struggling with ataxia, confusion days, and stammering and speech problems. Once they switched my CCB from Procardia (I also have Prinzmetal Angina - cardiac vasospasms) to Verapamil, my migraine pain significantly decreased to a dull headache most of the time and my auras also decreased in severity. About half the week (every week), I'm unable to walk without my walker and my face is paralyzed. But beyond my physical problems is the loss of my intellect, which occurred in April and has not returned. I'm an electrical/software engineer who owns her own consulting firm. Currently though I don't understand numbers and I've lost all my advanced science and math.

All is not bad for me. I have not had seizures since I left the hospital (I'm on Depatoke). My number of good days went from none to 2-3 a week now. My confusion days (days where I don't even know my name or where I'm at) have decreased. The medicines must be helping.

I wish you all the best. And welcome to our group. Tonya

Hello Marta and welcome to the forum family! We're so happy to have you here. When you have a moment, please check out the Start Here Folder for information and guidelines about the forum.

A great article to help you begin here is:

Learning About Migraines - Where To Start

Since you have such a rare form of Migraines, I'm glad you are seeing a Migraine Specialist, I see one from the list I just provided and he's been able to help me greatly. Here's some information on Hemiplegic Migraine you can take a look at:

Hemiplegic Migraine - The Basics

I hope that Topamax works it's magic for you! Here's some information on that as well:

Topamax Profile

Do you keep a Migraine Diary? It's great to track triggers, the effectiveness of medications, and any patterns to your Migraines and headaches.

Again, welcome to the forum. If you have any questions, just ask away

Hello, Marta, we're glad to have you with us. Laura did all the work, so I just have the pleasure of giving you a warm welcome.

I thank you for the kind welcome~

And to think that for you to be reading my posting -you also suffer miserable migraines- oh how you have my sympathy.

And it is good to "talk" to those who have an inkling of what I am experiencing...

I have tried to be a good advocate for myself with those dear folk around me -to let them know that I am more sensitive to sound, light, smell, ect. then they may be- and that if I am not careful I end up
(even with anti-seizure/migraine medication in my system) down with severe migraines.
However, it does seem difficult to make others -especially those who have never had a headache- to understand.

This just happened last month- and is an example of others not understanding how easily those of us with "excitable" nerves in our noggins can end up with a severe migraine (or worse in my case, hemiplegia).
A dear couple of ours, that we had not seen in years, was in the area and asked us to go out to dinner and drove us to a bar/restaurant...
While ordering what to eat,a young man started the juke-box, within a very short time (with the boom boom boom of the juke box blaring)
I excused myself (my husband understood, our friends did not)as I slipped out and went to the car and lay on the backseat.
The couple apologized, but I could tell they did not understand
(even when I told them that the loud repetative noise was bringing on a headache, she asked me "don't you like that kind of music?" -like the kind of music was the problem).
This was not how I wanted an nice evening out to go...
(I did end up with a migraine later.)


Since my hemiplegic migraines were brought on by anesthetic in surgery (in April) causing the nerves to become (and stay) "excited" bringing on the seizures, (aura) migraines and hemiplegic migraines... all of this is indeed still "new" to me and it is an
on-going learning process...
I have been fortunate, as I was refered to a neurologist (headache specialist) very quickly...
I was originally put on Dilantin for seizures at the hospital.
Then when the miserable headaches &(aura)headaches began, followed by the mental confusion/garbled speech/left side paralysis.. My Primary Care Dr., being concerned that the headaches were connected to the seizures, referred me to neurologist (& headache specialist, Dr. R, in Spokane, WA.
She has been very thorough. Going over the hospital records of my surgery (& seizures) CT scan, MRI (with contrast), MRA, MRV and EEG.

Dr. R immediately placed me on "Topamax" with the hopes of reducing the migraines (and hemiplegia).
I had some side effects -the worst being that after about 3 months my teeth began aching. I thought that I perhaps I had developed some facial cavities. I made a dental appt., they did an x-ray and found that my teeth were beautiful -however upon examining my teeth, they found that the "Topamax" in causing dry mouth, was also
pulling the gumline away from the base of my teeth exposing the nerve endings there. They were able to coat the base of my teeth, reducing the exposure, which eliminated the ache (yay).I have been told this is an atypical developement.
I discussed this with my neurologist at my next visit. I was titrated to "Depakote". Which ended up not a good choice for me as it created insomnia. So after a month, I returned to "Topamax".
At my last visit, she suggested that we try me on "Zonisamide" as many have reported fewer side effects with it. So I titrated to it.
However, the "Zonisamide" caused me to have on-going dull headaches
and no appetite. So again, we changed me back to "Topamax".
At this time, since I am dealing fairly well with the "Topamax"
-some tingling in hands/lips; dry mouth, taste change; some mental
"slippage"; and drowsiness... but all things I am aware of and can tolerate... we are upping my dosage -with the hopes of further decreasing my migraines (and hemiplegia).

I do wear an ID bracelet for seizure and hemiplegic migraine.

We are now dealing with "triggers" (which became a new word in my vocabulary)~
We now have drapes on the living room windows to help darken the living room (really helps) and I wear surround sun-glasses when I go outside.
I try to avoid noisy places when possible, or at least keep my time in them to a minimum. I have found even keeping telephone conversations short helps (although getting people to respect your need to keep them short is sometime difficult).

I am still finding ways to help myself cope... and many little ways I could be making wiser choices in not setting up a headache... so any advice is most welcome...

Marta Grace

edited by Moderator: Please see the Start Here Folder for guidelines on using doctor's full names. Thank you!

Marta,

You're right, you're not alone here. You've come to the right place for support and information. We're here for each other!

I can relate with you about people not understanding what we as Migraineurs go through. Teri Robert, our Lead Expert, has written letters that we can give to those people who don't understand Migraine:

• Migraine Education for Those “Who Don’t Get It”

• Understanding Migraines and Migraineurs

I'm so glad you understand the importance of recognizing our triggers. Mine are lack of sleep, not eating, changes in the barometric pressure and strong smells like bleach or certain perfumes. Here's some information on triggers:

• Common Migraine Triggers

• Stackable triggers

And, don't worry, if Topamax isn't the preventive for you, there are over 100 medications that can be used for Migraine prevention and virtually endless combinations of them.

• Migraine preventive medications: too many options to give up!

Take care,

Hi Marta!

Welcome to the forum family!

Have you asked around to see if anyone else in your family suffers with Migraine? Migraine is a genetic neurological disorder, and usually can be traced back to someone else in the family.

Let us know if there is anything we can help you with!

Greetings Marta, I am another HM sufferer. For me HM's have been a problem since 1989. I didn't recieve my dx until this year.

Mary in NM