Hello everyone, I'm new here!
I was wondering if anyone has any experiences with hemiplegic migraine, prophylaxis medications, or knows someone with the condition. The last migraine I had involved paralysis of the left side of my body, resulting in a 999 call due to breathing difficulties. I've never met anyone else with this rare migraine type, it's very similar to stroke, and most doctors / pharmacists have never even heard of it!
Hi
I to suffer from this type of migraine as well as another type of migraine nobody apart from one person I've spoke to has, which is post traumatic migraines and headaches, basically the first time I had one of these migraines I was on a bus the paralysis only lasted a matter of a few minutes, the 2nd time I had one whilst I was out I got rushed to the hospital because I had all the symptoms of a stroke, slurred speech, paralysis, severe migraine, drooping of my left side of my face, Ive since been put on gabapentin as a preventative and sumatriptan if the gabapentin doesn't work which it doesn't work every now and then
Check the leaflet that comes with the sumatriptan - I've been on sumatriptan and rizatriptan (almost the exact same, faster release) due to the way it works, it might not be suitable... I'm being taken off it, and I've got an appointment with a neurologist for December :/ it's nice to meet someone that's been through it - at college they told me they had a nice dark room for me 'to lie down in'- people see the word migraine and assume it's just a headache!
Hi, I've suffered for nearly 8 years now. I woke up one morning with a migrsine and its never really gone away. Six weeks in i started suffering from reduced power and sensation down my right side. I've never had full paralysis so it took years for the neurologist to decide it was hemiplegic. They only did so because of its response to Varapamil. In that Propananol makes hemiplegic migraine worse (which it did) and Varapamil has a better response with hemiplegic migraine.
As daily preventatives they tried Pizotifen, at first. Then Epilim Chrono with Amiptrypalin. That worked for about 9 months. Then Topiramate with Nortrypalin later added 75mg of aspirin. Which worked for about 18 months. Then Propananol which I couldn't tolerate. Then Varapamil with Pizotifen, Nortypalin and aspirin. That worked for 2 yrs. Now I'm on Candesartan, with Nortypalin and aspirin. I was never at the full dosage of Candesartan so when the 18 month upset (which is the average time meds to stop for me) rolled around they increased the dosage to bring them under control again, they also told me to take ibuprofen for a short period to break the frequent cluster of migraine attacks.
Unfortunately, back in 2010 when this started I developed an allergy of sorts to the entire Triptans family of sort. In that they make my migraine aura symptoms much worse. So as pain meds I take paracetamol mostly. I have cocodamol for another chronic pain issue so if it's too bad for paparacetamol but not bad enough for bed then I use that as an infrequent one off. Or I have meptazinol as a strong non codeine based alternative. The stuff is strong and I only take it when I go back to bed. But honestly, I suggest investing some time in learning non pain killer related remedies that work for you. Such as Forehead4Migraine, or cooling strips, a menthol bath. And then you can manage the acute attacks with pain meds. Sadly, I was told there's nothing that can be done about the auras and I have to ride them. I hope for your sake there is something they can do for the full paralysis you suffer because what you experienced sounds as scary as Hell.
That's sounds nasty! I'm currently on 40mg Propranolol for anxiety, but my doctor mentioned that it would help as migraine prophylaxis. Fortunately for me, I don't have the migraines too often, but when I do I sometimes have a panic attack on top of it as soon as I see the aura. I've got the typical OTC 300mg Aspirin, but until I see the neurologist I feel like I'm a bit unprotected! Different doctors have completely different idea of what you should take, I once got told to just take migraleve (codeine based otc painkiller) and the next doctor I saw was so angry about it! I work in a pharmacy so I'm well aware of all the options, but usually the headache lasts into the next couple of days and I manage it with painkillers, but usually the paralysis kinda makes me forget about the headache for a bit! 😂
I've had 2 neurology consultants and I'm on the radar of a 3rd, who suggested the Candesartan. It's not licensed for migraine. But it's been amazing. You know, I read these boards and think 'damn, I got it easy.'
Good luck. Hopefully, when you see the neurologist they'll be able to get a good plan for you in place. For me? Candesartan has been the best. I have zero side effects that I'm aware of.
But defo try the none medication routes because you don't want whatever does work to stop because you become used to it. When the sensitivity to sound kicks off, I listen to a piece of classical piano. With my eyes I have prescription sunglasses. When it's my right side I work from home (which I appreciate might not be possible).
I wish you all the best.
Thank you! 😊 I have my A-Levels coming up this year, so I just really want to do 9 months migraine-free - the last was right before my drama exam, but fortunately I was able to get it postponed... migraine episodes are scary, but I feel lucky that I don't have to live with permanent paralysis, or continued head pain. You sound as though you're managing amazingly well, and it's so nice to talk to people experiencing the same issues!
Unfortunately I suffer with hemiplegic migraines and have been hospitalised twice . At first I was diagnosed as a stroke due to paralysis of left arm, loss of speech and swallow reflex. I had rizatriptan wafers prescribed and eventually 3 months of topiramate. Now I just take aspirin at the start of one and go to bed to sleep it off. I definitely think my migraines are linked if I haven't had enough sleep. Hope yours improve
I'm sorry to hear about that, I think hemiplegic must be the worst type of migraine out there! It also often gets misdiagnosed as TIA, because some doctors know nothing about it. I also seem to sleep straight after an attack, wake up usually with a headache and nausea but feeling better. How do you find the topiramate? That's one of the prophylaxis options I've looked into, but I'd be interested to hear about your personal experience with it! 😊
Here's a good article from MigraineAgain.com that was published yesterday: migraineagain.com/6-signs-h...
I have Hemiplegic migraines too, ive written some posts on my page around it. Take care
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