Migraine
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Newbie |
My name is Jeramy, am 29 and have Familial Hemiplegic Migraines. I first started experiencing them in all their glory 3 years or so ago. Took about 6 months to find a doctor and a diagnosis (from what I hear, I was really lucky to it that quickly), and begin treatment. From that point I began the slow, steady, and painfully frustrating road of finding preventative medication that will work.
Meds tried thus far (in order): Topamax - 200 mg/day (100mg 2x) - First med, and was on for 3 months. Did reduce frequency by about 30% and severity by about 70%, but side effects were not an good enough trade off in Dr. opinion at that time. Kept on table to return to later if need be. Depakote - 1000 mg/day - One dose - Severe allergic reaction to first dose. Had to deploy EpiPen. Obvious no-go here. Had hopes for this one as it had been wonder drug for another family member and cut her FHM episodes down by 90% or so in both severity and frequency. Verapamil - Don't remember dosage - Didn't do anything good or bad. Metoprolol - Don't remember dosage - Didn't do anything good or bad. Acetazolamide - 1500 mg/day (750mg x2) - Worked great until about the 6th month when kidney stones started to form. Also lost about 40 lbs on this one (was 191 lbs at start and ended at 150 lbs even) so that would be good or bad depending on how you look at it. Dropped my potassium levels low enough that there were problems with aches and involuntary muscle contractions. Also caused sleep issues towards the end. Topamax - 100 mg/day (50mg x2 - ramping back up) Back to the Topamax after the Acetazolamide. Ramping back up, modified diet to get my potassium back up to normal. Dr. seems to think that the class of drug that Acetazolamide and Topamax both belong to is the key with my case so were going that route for now. Sorry for the long intro with the whole drug history and such, but long story short, there has been some glimmer of success and a lot of "so close yet so far away" kinda experience with this stuff for me. I'm hoping to learn from other folks with FHM and migraines in general, and I hope that I'll eventually be able to help others with my experiences as well.  |
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Guru |
Hi, Jeramy, welcome to the forum! We're glad you found us. I think you will find this forum a great place to find information and to give or receive support.
When you get a chance, please take a look at the Start Here folder at the top of the forum, so that you get the most out of your forum experience. Here's a good "jumpstart" article, too: Learning About Migraines and Headaches - Where To Start It sounds as though you've hooked up with a doctor who has been able to help you. Is he/she a migraine specialist? Here's some other info you may find helpful: Hemiplegic Migraine - The Basics Migraine Preventive Medications - Too Many Options To Give Up! We have a number of members with hemiplegic migraines, and I'm sure they will be along to share their experiences. In the meantime, don't worry about the length of your posts--ever--and keep the experiences and questions coming! Take care. |
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Master |
Hi Jeramy! Well Nutcracker was right, there are several of us with HM on the site, and would come along. LOL
I too have Hemiplegic Migraines. Mine arent FHM but SHM we think. I am unsure of anyone that has them in my family, though I didnt know my dads side at all. So I have no history of medical records. I also get Migraines W/ aura, and partial seizures from the migraines. It is a big up and down trying to find the right meds. I have been on jeez at least 10 different ones in the past. Right now I am on Depakote, 750mg. My stomach couldnt handle the 1000mg dose. The only problem is my body got used to it and wasnt helping much anymore. My neuro kept me on that and added Gabapentin. I keep having to up that med too. It seems that after awhile I get used to meds then they dont work as well. My biggest frustration is prbably not having a rescue or abort med. The only thing that I know of that I can take is Midrin. That too doesnt help much anymore, and I'm beginning to have allergic reactions to it.(rash, tight throat) I often get into prolonged mixed migraines with HM and regular migraines, and the Docs are limited on meds to break it. Often repeated trips to urgent care or Drs over a couple weeks time still doesnt help. Just know you are not alone! Anyway I am really glad you found this site! Nutcracker gave you some great links to get started with. Hope to chat with ya more!  Tawsha |
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Community Manager Supreme Guru  |
Welcome to MyMigraineConnection, Jeramy!
Familial Hemiplegic Migraine (FHM) is a rare form of Migraine disease best treated by a true Migraine specialist who is the expert in this area. Neurologists may be fine doctors, but may have a hard time focusing in any one area because they treat so many different conditions like MS, epilepsy and stroke. For more information on why it's so important to see a specialist continue reading this article: Migraine and Headache Specialists - What's So Special?. Then you may want to look for a specialist on our patient recommended directory you can find HERE. Acetazolamide and topamax are not the same type of medication and from a bit of research are best if not used together. This is due to an increased risk of kidney stones and hyperthermia. You mentioned you were on verapamil? This medication is often used by Migraine specialists in FM treatment. How long and how much were you on? It can take up to three months to see a reduction in severity and frequency of our Migraines. If we don't give medications a fair trial, we aren't doing ourselves any favors. Please keep us posted, ok? |
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Newbie |
Thanks for the warm welcome everyone!
Momsbreak, I fully agree with you about not having an rescue med to help during the blasted things. I do; however, have a family history that does help out in some cases. The nutty thing with me though is that I have recurrent idiopathic anaphylactoid reactions. Those make it really hard for the DRs to tell if I'm having a reaction to the meds or if my body is just going through one of it's nifty "I'm alergic to myself" moments. Nancy, I did have a great specialist (whom had Migraines himself). See my "seeking advice" post about being stuck with the PA after his departure. I fully agree with the importance of having a specialist, and went through a group of very fine Neuros who worked very hard on my case before realizing they were not helping me and then working as a group to get me into the clinic that I go to currently for treatment. Just to clarify my statement about Acetazolamide and Topiramate. That simply was to signify that they were both antieptileptics. You are correct in that simultaneous use of both Acetazolamide and Topiramate together are contraindicated due to both of their membership in the league of carbonic anhydrase inhibitors. Their use alone can increase the risk of renal stones (bicarbonate), and hypokalemia. Combined use further increases that risk. I am in no way am suggesting the combination. An interesting trivia tidbit about these two drugs: Topiramate was being originally developed for diabetes related issues; however, failing success at that, researchers noted the structural resembalences of the sulfamate moiety in Topiramate and the sulfonamide moiety in Acetazolamide. That similarity prompted the evaluation of Topiramate for use in Epilepsy (and subequently Migranes). So arguably without Acetazolamide's structure to compare to, Topiramate would have never been what we have come to know it as today. There's your useless bit-o-info for the day  Now back to my replies to Nancy, Yes, I was on verapamil for probably about 7 - 8 months. I do not remember the dosage information off the top of my head. I do remember that we adjusted it, and that there was little if any change in frequency nor severity. Which was really disappointing for me as verapamil was the nicest pill to take out of everything I have taken thus far. No side effects what so ever. Nothing. nada. Go figure right? Trust me, I want to give all of my meds as honest and fair a shake as I can. The only one I didn't give one was the Depakote (with the reaction on the first pill). Which in all fairness could have been anaphylactoid, but it was the doctors call to ban that drug. So yup, I'm on my Migraine journey. Stumbling along as I go, learning as much as I can. Making my way hopefully towards a place where there is at least a little relief, less stress, some better days on the horizon. And now that I've found this place, hopefully making some great new friends along the way! Have a great evening! |
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Newbie |
nutcrackerHost, Thank you for the welcome and the links to the reading material. I'm checking it out right now!
I noticed on your Migraine ticker that you've had one today... Sorry to see that.. I hope you are making it through it ok, and are soon feeling better! - Jeramy |
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Community Moderator Supreme Guru  |
Hi Jeramy!
I believe I have posted to you in your other thread, but wanted to stop in here and give you an official welcome! This is a great place to learn and get support. Let us know if there is anything we can do for you!  Eileen Gray Community Moderator eileen@helpforheadaches.com "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 Please donate!!! Click below to donate to the AHDA - THANK YOU!!! http://www.networkforgood.org/....aspx?badgeId=102755 my blog: http://fireinmybrain.blogspot.com |
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Forum Moderator Supreme Guru  |
Hello Jeramy! Add my welcome to the pile! I look forward to seeing you around the forum
Laura Forum Moderator |
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MMC Lead Expert Supreme Guru  |
-:¦:-•:*'""*:•.-:¦:-•*Hello!*•-:¦:-•:*'''''*:•-:¦:-•*Welcome to the family!*•-:¦:- •:*'""*:•.-:¦:-
Thanks!
 Teri Robert Lead Expert, MyMigraineConnection terimmc@helpforheadaches.com visit me on
 The generally long periods of time between my Migraines are the result of working with a Migraine specialist to refine my preventive regimen. You can see my current regimen HERE. |
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