Subscribe Via RSSHemiplegic Migraine and A Few Words on Self-Care
While this isn’t a medical blog really, many of us adults on the spectrum deal with a lot of medical and especially neurological goodness, and self-care is one of the realities of living independently.
I woke up this morning with the less desirable of my two types of migraines. Most of my migraines are the type that most people get – throbbing pain, nausea, sensitivity to light and sound. (I am really amazed at how many other autistics tell me they get migraines too.)
Some of my migraines, a rare type called hemiplegic migraine, resemble strokes and involve difficulty talking and numbness or weakness on one side. Lately I’ve started to notice things like numbness in my throat or no sense of smell on one side.
When you have hemiplegic migraines, there are all kinds of meds you’re not allowed to take for one reason or another. Triptans, which they usually prescribe for migraine relief (you may have heard of Imitrex), aren’t allowed because there’s a risk of stroke or heart attacks with this type of migraine. Hormonal birth control containing estrogen isn’t allowed either because of the increased risk of triggering more migraines or a stroke.
Although better neurologists will know all of this, many other doctors won’t, so you have to learn to pay attention and be proactive about your care. If you can’t say it, have it in writing for them.
Since the goal is to have as few of this type of migraine as possible, the neurologist will usually put you on a preventative medication. Supposedly calcium channel blockers can work well for hemiplegic migraine, but I was allergic to it. After a lot of trial and error, we found that Topamax worked for me.
Forgetting to take my meds or not getting it refilled often ends up in weeks of playing catch up with my migraines and seizures, so I find it helpful to use a day-of-the-week container and just take my medicine as soon as I wake up.
Also, my pharmacy had me sign up for an auto-refill program where they’d automatically refill my prescriptions for me and even call my doctor when they run out. That took care of so much of the hassle for me; all I have to do is show up to get it! Oh, and by the way…if you request that they use a non-safety cap on all your future orders, you get a SUPER easy-to-use flip cap instead of that thing you have to wrestle with.
It was definitely scary at first, not knowing what was going on and not knowing what to do for the pain. But I feel much more empowered and in control after taking the time to find a neurologist I can trust, doing my own research, and figuring out what I can handle on my own and what requires medical care.
More info:
SteadyHealth (in plain English)
NIH GeneReviews (The really nitty gritty stuff: On genes and what is genetically related to hemiplegic migraine)
15 Responses
I don’t know whether we are talking about the same experience or not because my migraine confines itself to aura not the headache but it is stress related I can figure, and for me hemiplegic means that it has wiped out my left side, numbness the whole way down, if I did not recognise it I would be well scared it was a stroke. And that is what I have been dealing with today.
Thats only the half of it
there has been an increase in the visual stuff too.
Laurentius Rex´s last blog ..Out of Leamington
That sounds very much like this type of migraine…you should be careful with the types of medications you take with your migraines! There’s a certain irony in the fact that the very things that can bring you relief are NOT allowed.
This is most important part of living independently:remembering meds. Remember to take for over night trips. Remember to have refills especially if the pharmacy will have to call the doctor for refill authorization. It is good to establish a relationship with your pharmacy so they know you and can help you to not forget things. Our daughter takes some OTC supplements that are very important for her stability. The pharmacy orders them in just fro her, and let her know if she forgot to pick up a bottle.
Agreed, even though so much of the process is automated, the pharmacists at my CVS are really great and have gotten to know me. I really appreciate the extra effort they’ve put into recognizing me (or at least pretending to), because routine is important to me and it’s kind of disturbing to walk in and talk to someone who doesn’t know me – and who I don’t know.
Yep, I’m a migraineur, too. I had a different unusual variant for a short while (basilar) in 2007, but they seem to have dropped off. I’ve been on beta-blockers since October 2007, and also had concurrent trials of topamax (I think it gave me isolated seizures?), imitrex (no go), and gabapentin (brain fog to end all brain fogs). I’m now on the propranolol and a high dose of magnesium and b-2. It’s weird, as I am one of the last people to be all “Vitamins and supplements yay!” but I read the studies and agreed with my neuro it was worth a shot since nothing else seemed to work. I had 4-5 a week when I started. I’m down to about one every 2-3 weeks, and am better able to isolate my triggers to prevent them further.
Ali´s last blog ..white clouds of comfort
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.
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
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
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.
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 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.
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?
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
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!
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#