Comments on: Hemiplegic Migraine and A Few Words on Self-Care http://www.aspieteacher.com/2010/04/hemiplegic-migraine/ Mon, 02 Jan 2012 17:30:25 +0000 hourly 1 http://wordpress.org/?v=3.3 By: Ali http://www.aspieteacher.com/2010/04/hemiplegic-migraine/#comment-1109 Ali Thu, 05 Aug 2010 14:48:10 +0000 http://www.aspieteacher.com/?p=2325#comment-1109 Hi Joanne, I haven't had a basilar in years and only had a few. I get foggy for a brief period (up to an hour) for every 4 hours of migraine, or so, so an untreated migraine might leave me pretty fogged for a couple of hours. My main symptom (aside from migraine--these were always back of the skull centered for me) was overwhelming dizziness and reduction in hearing. I've never had a stroke, though I do have a PVWM lesion. These are bright spots of demyelenation that show up on MRI and are currently considered both ideopathic and harmless. The likelihood of having one increases with age, and having migraines increases the risk. I was 24 at the time of MRI, which made my having even one rather unusual, though apparently still meant to be harmless. Hi Joanne, I haven’t had a basilar in years and only had a few. I get foggy for a brief period (up to an hour) for every 4 hours of migraine, or so, so an untreated migraine might leave me pretty fogged for a couple of hours. My main symptom (aside from migraine–these were always back of the skull centered for me) was overwhelming dizziness and reduction in hearing. I’ve never had a stroke, though I do have a PVWM lesion. These are bright spots of demyelenation that show up on MRI and are currently considered both ideopathic and harmless. The likelihood of having one increases with age, and having migraines increases the risk. I was 24 at the time of MRI, which made my having even one rather unusual, though apparently still meant to be harmless.

]]> By: joanne http://www.aspieteacher.com/2010/04/hemiplegic-migraine/#comment-1103 joanne Thu, 05 Aug 2010 04:14:53 +0000 http://www.aspieteacher.com/?p=2325#comment-1103 Ali, after you had the basilar migraine, did you have alot of brain fog and dizziness with that afterwards? DId you have a stroke due to the basilar migraine or just migraine? My husband has just been diagnosed with basilar migraine and he had a stroke from it, that was a month ago and his head is not clear yet, some days are better than others and some are iffy with the brain fog. he has started on the topamax 25 mg, daily and increasing it gradually to 50 mg twice a day, just started all of this, so far the side effects ok, although he does seem to be a bit more tired. would love to hear from someone with basilar migraine, seeing as they say this is rare. what are your symptoms when you get one? thanks Ali, after you had the basilar migraine, did you have alot of brain fog and dizziness with that afterwards? DId you have a stroke due to the basilar migraine or just migraine? My husband has just been diagnosed with basilar migraine and he had a stroke from it, that was a month ago and his head is not clear yet, some days are better than others and some are iffy with the brain fog. he has started on the topamax 25 mg, daily and increasing it gradually to 50 mg twice a day, just started all of this, so far the side effects ok, although he does seem to be a bit more tired. would love to hear from someone with basilar migraine, seeing as they say this is rare. what are your symptoms when you get one? thanks

]]> By: Rachel Cohen-Rottenberg http://www.aspieteacher.com/2010/04/hemiplegic-migraine/#comment-789 Rachel Cohen-Rottenberg Wed, 28 Apr 2010 14:38:24 +0000 http://www.aspieteacher.com/?p=2325#comment-789 I'm so sorry to hear of other people's bad experiences with Topamax, although I'm glad you've gotten through the side effects, Sandy (including losing 40 pounds, gah!). Ali, it's very strengthening to hear that you got off the stuff, even though it was difficult. I'm down to 25 mg and I'm hoping to be off it entirely as of next Monday. I'm fortunate in that I can take Sumatriptan if I get a migraine, though if I couldn't, I'm not sure I'd trade in the migraine for the Topamax induced nausea and dizziness. As it is, the withdrawal hasn't been bad, and I'm eating like a horse--lots and lots and lots of fresh vegetables. Food has never tasted so good! I’m so sorry to hear of other people’s bad experiences with Topamax, although I’m glad you’ve gotten through the side effects, Sandy (including losing 40 pounds, gah!).

Ali, it’s very strengthening to hear that you got off the stuff, even though it was difficult. I’m down to 25 mg and I’m hoping to be off it entirely as of next Monday. I’m fortunate in that I can take Sumatriptan if I get a migraine, though if I couldn’t, I’m not sure I’d trade in the migraine for the Topamax induced nausea and dizziness. As it is, the withdrawal hasn’t been bad, and I’m eating like a horse–lots and lots and lots of fresh vegetables. Food has never tasted so good!

]]> By: Ali http://www.aspieteacher.com/2010/04/hemiplegic-migraine/#comment-784 Ali Thu, 22 Apr 2010 21:49:00 +0000 http://www.aspieteacher.com/?p=2325#comment-784 Topamax was terrible for me, too. I was willing to suffer through the side effects that I got (pseudoseizures, palinopsia [think motion blur on any light coloured objects when I move past them, including my own limbs!], nausea, loss of appetite, dizziness, even worse memory than before, terrific anomia) while it worked, but 6 months after I started it just quit on me. Coming off was uncomfortable but relieving. Good luck. .-= Ali´s last blog ..<a href="http://alternatelexicon.com/2010/04/04/white-clouds-of-comfort/" rel="nofollow">white clouds of comfort</a> =-. Topamax was terrible for me, too. I was willing to suffer through the side effects that I got (pseudoseizures, palinopsia [think motion blur on any light coloured objects when I move past them, including my own limbs!], nausea, loss of appetite, dizziness, even worse memory than before, terrific anomia) while it worked, but 6 months after I started it just quit on me. Coming off was uncomfortable but relieving. Good luck.
.-= Ali´s last blog ..white clouds of comfort =-.

]]> By: Ali http://www.aspieteacher.com/2010/04/hemiplegic-migraine/#comment-783 Ali Thu, 22 Apr 2010 21:45:39 +0000 http://www.aspieteacher.com/?p=2325#comment-783 It seems to be working. Of course, I can't know for sure, since I started the b-2 at the same time and in conjunction with a beta-blocker that's also supposed to help a lot. However, I started these at the beginning of February, with 4-5 migraines a week, as I said, plus a handful more without headache. I'm down to one with headache every 2-3 weeks, and maybe 1 a week without headache (which, since I only get scintillations during these, aren't really bothersome so much as distracting because the floaty lights are actually quite pretty when not followed by pain). That's a huge, huge jump in control for me, for very little cost, so if you don't think yours are well controlled it might be worth bringing up with whoever you talk about your migraines with. .-= Ali´s last blog ..<a href="http://alternatelexicon.com/2010/04/04/white-clouds-of-comfort/" rel="nofollow">white clouds of comfort</a> =-. It seems to be working. Of course, I can’t know for sure, since I started the b-2 at the same time and in conjunction with a beta-blocker that’s also supposed to help a lot. However, I started these at the beginning of February, with 4-5 migraines a week, as I said, plus a handful more without headache. I’m down to one with headache every 2-3 weeks, and maybe 1 a week without headache (which, since I only get scintillations during these, aren’t really bothersome so much as distracting because the floaty lights are actually quite pretty when not followed by pain). That’s a huge, huge jump in control for me, for very little cost, so if you don’t think yours are well controlled it might be worth bringing up with whoever you talk about your migraines with.
.-= Ali´s last blog ..white clouds of comfort =-.

]]> By: Sandy http://www.aspieteacher.com/2010/04/hemiplegic-migraine/#comment-782 Sandy Thu, 22 Apr 2010 21:30:22 +0000 http://www.aspieteacher.com/?p=2325#comment-782 Rachael, I'm sorry to hear you've been having such a rough time! The adjustment period is hellish for just about everyone who takes it...did I ever mention I lost 40 lbs when I first started taking it? Went from a size 6-8 to a 0. And every woman who hears this says "Wow, I want whatever you took!" but you know how miserable that was. I've wanted to cry so many times because of the disgusting need to eat - nausea - no appetite dilemma. And then everyone starts thinking you have an eating disorder. From what I've heard, the main reason people discontinue Topamax is the side effects. It's supposedly really important to get the dosage right...too high and you get the side effects, too low and it doesn't work. Is it possible that you might feel better at 50 mg? Rachael, I’m sorry to hear you’ve been having such a rough time! The adjustment period is hellish for just about everyone who takes it…did I ever mention I lost 40 lbs when I first started taking it? Went from a size 6-8 to a 0. And every woman who hears this says “Wow, I want whatever you took!” but you know how miserable that was. I’ve wanted to cry so many times because of the disgusting need to eat – nausea – no appetite dilemma. And then everyone starts thinking you have an eating disorder.

From what I’ve heard, the main reason people discontinue Topamax is the side effects. It’s supposedly really important to get the dosage right…too high and you get the side effects, too low and it doesn’t work.

Is it possible that you might feel better at 50 mg?

]]> By: Rachel Cohen-Rottenberg http://www.aspieteacher.com/2010/04/hemiplegic-migraine/#comment-781 Rachel Cohen-Rottenberg Thu, 22 Apr 2010 21:17:56 +0000 http://www.aspieteacher.com/?p=2325#comment-781 i feel it necessary to completely retract my comments about Topamax. I realize it works for you and others, Sandy, but for me, after I posted, it became a total nightmare: complete loss of appetite, nausea 24/7, falling down several times a day (and once in the shower--only my karate skills, which taught me how to roll during a fall, saved me from serious injury), falling asleep in the middle of the day, and a difficult time even getting water down. I'm tapering off it and expect to be off the medication entirely in two weeks. (I was on 75 mg/day, now down to 50 mg.) Just wanted to be responsible about providing my complete experience here, just in case anyone is considering the medication or having similar effects. i feel it necessary to completely retract my comments about Topamax. I realize it works for you and others, Sandy, but for me, after I posted, it became a total nightmare: complete loss of appetite, nausea 24/7, falling down several times a day (and once in the shower–only my karate skills, which taught me how to roll during a fall, saved me from serious injury), falling asleep in the middle of the day, and a difficult time even getting water down. I’m tapering off it and expect to be off the medication entirely in two weeks. (I was on 75 mg/day, now down to 50 mg.)

Just wanted to be responsible about providing my complete experience here, just in case anyone is considering the medication or having similar effects.

]]> By: Sandy http://www.aspieteacher.com/2010/04/hemiplegic-migraine/#comment-779 Sandy Tue, 20 Apr 2010 00:03:03 +0000 http://www.aspieteacher.com/?p=2325#comment-779 Came across this article about a woman whose hemiplegic migraines resulted in Foreign Accent Syndrome. http://www.dailymail.co.uk/health/article-1267208/Migraine-gives-English-woman-Chinese-accent.html# Came across this article about a woman whose hemiplegic migraines resulted in Foreign Accent Syndrome.

http://www.dailymail.co.uk/health/article-1267208/Migraine-gives-English-woman-Chinese-accent.html#

]]> By: Rachel Cohen-Rottenberg http://www.aspieteacher.com/2010/04/hemiplegic-migraine/#comment-778 Rachel Cohen-Rottenberg Sun, 18 Apr 2010 23:48:41 +0000 http://www.aspieteacher.com/?p=2325#comment-778 I only get the more common type of head-splitting migraine, but for most of your blog post, I was thinking 'Topamax, Topamax, Topamax..." I was so glad to see that that's what you're taking! After I'd gone through several years of knocking out migraines with Sumatriptan 3-4 times a week, the new guy who manages my meds noted that I am actually getting 3-4 migraines a week; the fact that I am noticing the symptoms early and knocking them out before wanting to replace my head with a block of cement doesn't mean that the migraines aren't there. Nice that someone finally noticed. So now he has me on Topamax as a preventive, and I haven't had a migraine in two weeks. I've also lost six pounds, since it can act as an appetite suppressant. I've got to be careful about that. Better go buy some chocolate! (Life is tough sometimes...) I only get the more common type of head-splitting migraine, but for most of your blog post, I was thinking ‘Topamax, Topamax, Topamax…” I was so glad to see that that’s what you’re taking!

After I’d gone through several years of knocking out migraines with Sumatriptan 3-4 times a week, the new guy who manages my meds noted that I am actually getting 3-4 migraines a week; the fact that I am noticing the symptoms early and knocking them out before wanting to replace my head with a block of cement doesn’t mean that the migraines aren’t there. Nice that someone finally noticed. So now he has me on Topamax as a preventive, and I haven’t had a migraine in two weeks. I’ve also lost six pounds, since it can act as an appetite suppressant. I’ve got to be careful about that. Better go buy some chocolate! (Life is tough sometimes…)

]]> By: Sandy http://www.aspieteacher.com/2010/04/hemiplegic-migraine/#comment-774 Sandy Wed, 14 Apr 2010 22:03:16 +0000 http://www.aspieteacher.com/?p=2325#comment-774 Did the magnesium really help you? I've heard that from so many migraneurs! (And isn't that such a pretty word?) I too was skeptical about vitamins and supplements until I tried B-6. Now THAT was amazing. It helped me not be allergic to fresh fruit for the first time in my life! So I'd be interested to hear what you feel magnesium has done for you. Did the magnesium really help you? I’ve heard that from so many migraneurs! (And isn’t that such a pretty word?) I too was skeptical about vitamins and supplements until I tried B-6. Now THAT was amazing. It helped me not be allergic to fresh fruit for the first time in my life! So I’d be interested to hear what you feel magnesium has done for you.

]]>