What do you know about Hemiplegic Migraine and Topiramate/Topamax?
 

Dear All,

My computer again blocked me out for months.

I finally have been diagnosed with Hemiplegic Migraines and am on 100mg/day of Topamax.
This is a condition I was born with, a mutated gene from my father but only found since being under a good neurologist who happened to specialise in migraine.

I have collapsed regularly since I was 10 but since my injury, I have had more stroke like symptoms which were mistaken for TIA's.
Do you have this condition or know much about it, or can you refer me to anything that may help or any groups in the UK that I can contact or any online?

Many thanks.

You sound informed, perhaps from your own research, and from your Neurologist.

WebMD information.

NIH information .

The Hemiplegic Migraine Foundation .

I have listed this link about Topamax before. I take it for my Post-traumatic/Post-concussion Migraines.

I have heard of the condition, never had seen it in my practice, however. Hope some of those links are adding to information for you and others.

Best Wishes.

I don't know about the migraine condition you have, but I am also on 100 mg per day of Topamax for my post-concussive migraines. I have been taking it for slightly over a year now. I tried to taper down once last summer, but my headaches started coming back.

Good luck!

Dear Concussion,

Thank you for those links, actually here in the UK, neurologists tent to treat their patients like numbers. You are given your meds with zero info. I did all the leg work. I was not given any info what so ever on how to look after my self on these meds. Thankfully God gave me a brain.

It's reassuring to know you are on a higher dose. May I ask if you too suffered severe numbness and stabbing pains in your hand and feet. Research says it's low potassium, however high potassium exerts the same symptoms...... any ideas?

peacheysncream,

I have not had any "severe numbness and stabbing pains in your hand and feet", however, I do have a history of occasional numb/tingling in my hands/fingers which I have had since my numerous MVC's and my Subluxation of C5/6 long ago - which is more a bother than debilitating; I have not associated and increase there with the medication.

My increase in the Topamax dosing has brought the daily headache intensity down to a level of constancy of 1-2/10 at a maximum most generally 1/10. With the biggest regret I have as losing the prodrome warnings of something to let me know I may be leading into an Acute Headache - I may or not get some warning, usually not now; just WHAM, Hello, BIG Headache time, everything hits at once, the headache intensity of 15-20/10, the aura or the noise intensity hurtfulness, screeching bright light hurting, tears, turn off the lights, turn off the tv, turn off the computer, please shut up -- I keep a dark hooded sweatshirt on my computer chair to cover up, and almost crawl to my recliner and curl up after grabbing my pills and taking them. << Luckily, these seem to have decrease in occurence from a few times a week to 1, maybe twice, but last 1 or 2 days sometimes.

But, otherwise, I drink lots of water to keep the risk of kidney stones at a minmum; I have had an occasional "Alice in Wonderland" moment - but it passed rather quickly - usually occurred waking from a nap ( one of my little quick 5 min ones). I have Insomnia, even prior to using Topamax, so its not changed.

Overall, my daily headaches have seen a reduction in intensity. Thats a good thing to me........ Now I can work on my Cognition problems once the plans are decided and worked out; and they are seeming to clear somewhat as time passes, too...but not alot. And, I always am looking forward to get off all my meds one day.

When I started taking topamax, I had numbness and tingling in my fingers due to the medication. My doctor ran a blood test and found that I had mild acidosis. I find that the sensation lessens when I make sure to stay well-hydrated.

Concussion,

Wow, your life is very intense. Remain confident and keep progressing. Thank you for the information, I really appreciate it.