Hemiplegic?? : Does anyone on here get... - National Migraine...

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Hemiplegic??

Does anyone on here get hemiplegic migraines?

Whenever I get a migraine one side of my body will go completely weak, my face will go numb, my vision will go blurry and I feel like I can’t talk. It’s absolutely terrifying and I always think I’m having a stroke.

If anyone knows of any medication that helps with this particular type of migraine I’d be grateful so far I’ve tried basic paracetamol/ibuprofen, propranolol, zapain, migraleve, sumatriptan and zolmitriptan but nothing seems to work, thank you

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Hi

Im sorry I haven't heard of it. I hope you start to feel better soon. Not sure whether my husband has got neuralgia or cluster headaches. Our Dr has prescribed him a nose spray for migraines and some strong co codamol, these have both helped. He's waiting to see a neurologist, hopefully soon. Please take care. Love and hugs Lynne xxxx

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Thank you for replying, I have tried those but they don’t seem to do anything but I’m glad they help your husband out I hope he sees a neurologist soon xxx

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Thank you xxxx

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Hi there! Yeah I have been diagnosed with them I am currently on propranolol but was on a different one before but can't remember the name of it when I remember I will let you know :)

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Hey thank you! Does propranolol help for you? It gave me too many side effects

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Yea it does the other meds I tried made me very sick because I am very sensitive to medications

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I've had various forms of migraine, but only one hemiplegic attack, and it was exactly as you describe. They thought I'd had a stroke, but after CT and MRI, decided it was caused by my neck - neurosurgery said it wasn't bad enough yet to warrant the risks of surgery, so I went for some Bowen and acupuncture/acupressure therapy. Sorted, hasn't happened since, but I do make sure to take a diazepam at night (usually 3 nights running) and apply Ibuprofen 10% gel to the neck and shoulder when the shoulder that side starts to get tight and affects my neck. When that happens, if I just ignore it, I also get palpitations, odd sensations/pain in the face/ear and jaw, excessive salivation that side, or mouth dryness, maybe an odd taste, numbness and tingling down the arm, even eventually weakness down the whole left side. Taking the diazepam and using the ibuprofen gel seems to nip the whole thing in the bud... no idea if that will help you though - it might, if your neck is a possible cause.

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I haven’t ever considered anything to do with my neck but it could easily be a possibility as I do get a lot of pain in it too, I have a doctors appointment soon so I will ask about it then and I think I’m hopefully seeing a neurologist. What is Bowen? I’ve looked into acupuncture and I’m considering that. I haven’t tried diazepam so I’ll ask about that too. I get all of those symptoms you described so many be it will help me too. Thanks so much for your reply!

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Bowen therapy is just another alternative therapy, like acupuncture... google it for info, there's three different types, and practitioners are thin on the ground, hard to find one, I just happened to have one in my area. But you might do better seeing a cranial osteopath - they sort your neck and head out, and I found that very helpful for years,until my neck got so bad (osteo arthritis and slipped discs) my osteopath had to stop treating me because it got too risky. It was about 2 years after I stopped seeing him that I had the hemiplegic episode... None of the therapies I mention here are available on the NHS (if you're in the UK) I'm afraid - I just went to various people down the years myself and paid. As for diazepam, they're unlikely to give it to you because its addictive - they have to know there's a reason for it, and in my case, it was following an MRI when they could see a compression at C5/C6 in the neck causing a lot pain in the neck and shoulder. At first, they gave me enough for two weeks because the shoulder was in spasm at the time - after that, they doled it out like it was gold dust, until they realised I wasn't going to overuse it and was sensible about it - that's why I only ever do three nights of it, then stop, and maybe another 3 nights a day or two later, depending. I'm lucky they allow me to order 28 tablets every two months... but they wouldn't allow me to order more. If you tell them your neck is painful, they may readily prescribe the Ibuprofen 10% gel... you get a much bigger tube on prescription than you can buy over the counter, and it does help.

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I have just googled the Bowen therapy and there is a place only 15 minutes from my house! So I’ve made an enquiry about an appointment. I will ask what other medication I can try if they do not prescribe me that as I’m willing to try anything that will help

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They won't give you diazepam for migraine - but you might be able to persuade them to give it to you for a stiff, painful neck or shoulder because its a muscle relaxant. the trouble with diazepam is, the more you take, the more you need, which is why they're reluctant to prescribe it... Hope the Bowen therapist is okay - the first one I went to see was only 10 minutes from my house, but I decided he was a nutter after an hour long 'interview' consisting of him waffling on about his life and warning me about 'possible side effects' from his treatment, and wanting me to commit to a year of treatment, with no actual treatment on that day (for which he didn't charge me) so I found another one about half an hour away instead. He did acupressure as well, which was handy... good luck.

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I have used diazepam most of my adult life and have not found that I need increased doses. The doctors in the UK will not prescribe it, nor will they prescribe sleeping drugs, both of which have been my life savers. I get them online; sad and expensive and potentially risky but on the whole better that not being able to function. One gp admitted to me that it's not that she is in principle against either, but that they, gps, get 'penalised' for prescribing those types of drugs, whatever that means. Presumably their reluctance does not apply to people with serious and severe disorders just people like me, highly strung and anxious. NB I hve tried all the other methods that are out there: herbs, stones, reiki, hypnotherapy, meditation, mindfulness, even prayer, you name it.

greetings, Gypsi

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Back in the 1950s and 1960's in the UK, there were lots of (mostly) women on diazepam or, more commonly, librium, prescribed for their tranquilising effects, not as a muscle relaxant. Often these people were also on what were known as 'purple hearts', which were heavy duty sleeping pills, also difficult to come off and often either deliberately or mistakenly used for suicide. The medical profession then realised that these 'wonder drugs' had a serious addiction downside; people on these drugs, after a few weeks of taking them regularly, were unable to come off them because of serious side effects when they tried, with major mental/emotional instablility and some very unpleasant physical effects. Therefore, those who had been taking tranquillisers for a long time were allowed to continue on low doses up until they died; but never again were those drugs prescribed as tranquillisers for people who suffered what might be described as 'nervous' ailments, and use of the drug diazepam was then restricted to muscle relaxant use only, and even then only for very short periods, usually less than a fortnight. That's the history of diazepam use...and why no gp will any longer prescribe them in that historic way. I know this because my stepmother was one of those women - I am, obviously, pretty old, but so far, there's nothing at all wrong with my memory...

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I had been on Sibelium and Topamax for hemiplegic migraines but had to discontinue these meds because the side effects were intolerable and had made the migraines worse

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Sorry you experienced such bad side effects, I’ve never heard of either of those so thank you for telling me

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Have you tried to figure out what the triggers are that start the HM episodes sometimes it can be gluten in foods or bright lights like fluorescents or LED's.

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I’ve got no clue what the trigger is, I have coeliacs disease so I eat a gluten free diet so I’m sure it’s not that. I’ll try to record what I’m doing when I next have one to see if i can find out. Thank you for the suggestion

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I have HC in between cluster headache attacks and I will actually fall to the ground through weakness. I don't have any pain with HC, just aura and weakness and the neurologist has prescribed nothing for it. I mostly get it in the summer, bright sunlight is a trigger even though I wear sunglasses and I can't walk the dog on my own just in case.

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Sometimes I just get aura and weakness too but no headache! It’s horrible. I’m sorry yours are so bad, I’m hopefully you find something that helps

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Thanks Erin, I'm always hopeful that research will come up with something, some exciting new treatments for migraine recently though nothing for us yet. I try to take part in as many clinical trials as I'm able but so many of them are conducted in the London Hospitals - and I'm in Scotland!

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I hope so also I’m sure they will eventually, that’s a long way to go

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Hi...im sorry you're suffering with these dreadful attacks... I also suffer with something very similar.. Have done for 20 years or so... But there is light at the end of the tunnel.. Here's my very shortened story in the hope that it may help... My migraines would last anything from 3 hours to a day.. Then left with a horrible mugginess for days... I could have an attack every day for days or once every month or so... But it ruined my life.. I would not do the things I loved, I was scared of letting people down.. Others could not understand how someone could be OK one minute and unable to talk 10 minutes later.. Then OK (ish) again a couple of hours later. I got blurred vision, numb hands, arms, face, tong and throat (that's horrible), dry mouth, could form words or all words in my head were jumbled... Forgot how to get home, couldn't remember the simplest things.... A nightmare.. So I tried everything... Every drug the neurologist suggested.. Even the really nasty ones... Pizotofen was a particular shitty one... I eliminated everything from my diet.. Stopped doing anything that would interfere with my vision.. I'd got to a point where I thought everything was a trigger... Now as I said short version of story 😁... I introduced things back slowly.. Through this process and just luck.. .. I found that cucumber, smoke from cigarettes, flashes of light, fast moving games on small screens, lots of stress, straining my eyes to see in darkened rooms, anything with MSG's in, dark chocolate and red wine were all my triggers, but here's the kicker.. 2 of them had to have consumed / happened with 12 or so hours of each other... It took me a long time to figure this out and avoid them... For some it's just coffee or cheese or BBQ flavouring..

But find your triggers... I still take Propanalol 20mg daily... That reduces frequency and strength and length of attacks.... But I can now go for months without one... Hey life happens and you can't always ensure no stress and a cafe with crap lighting and a car with main beam on etc... But my confidence has grown tremdously.... I hope you find your trigger... And a form of relief when it happens... If you haven't already get diagnosed and see a neurologist... Treatment is getting better and they have access to it.... Sorry this was a bit gloom and doom.. I hope it goes well for you. Simon

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Thank you for your reply, I’m very glad you’ve been able to find your triggers for them! But I’m sorry you have so many, I am going to try my best to get to the bottom of things I still haven’t properly been diagnosed or saw a neurologist but I have a doctors appointment coming up so I’m going to ask about it then many thanks

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No worries, hope it helps. When at the doctors ask to be referred, play on it and do not give them an 'out'... By that I mean say "well it could be this or that"... No.. You want to see a neurologist and be diagnosed. Mind you there is a down side to be diagnosed... You can never be a pilot.. Train driver or drive a bus I think... Being a Spy is out as well I think... But you will get some advice and treatment. By the way, also remember that he/she is a consultant and they don't look at you as a GP would. They look at treating that ailment... Not what the treatment may cost you! That's my opinion I may be wrong. Good luck

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I definitely will, it was discussed that they were considering referring me when I first started having them and that was December so hopefully they will when I ask. Ahahaha the jobs are a downside but I’m much rather have the diagnosis and treatment, many thanks

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Just a thought - I gave up all dairy a year ago for a different health reason, and since I did, I have had no visual disturbances (which were very frequent, at least daily if not twice a day) and now I think about it, no early symptoms of a hemiplegic attack either...but I also cut right down on meat (once a month at most) and eggs (hardly ever). I suspect its giving up dairy that's made the difference, an unexpected but happy side effect of changing my diet. If you eat dairy, you could cut that out for 3 months to see if it helps...

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Im glad this helped for you, i might consider it but I do have coeliacs disease so I’m deficient in vitamin D so I’m not sure if it would do more harm than good

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Well unless you're drinking gallons of fortified milk a day and eating loads of some cheeses, the Vitamin D they contain is very small. Loads of calcium, yes, no or barely any magnesum, but very little Vitamin D. I take that separately, with calcium and magnesium and Vitamin K2, always have done, even when I ate dairy. Calcium and magnesium work together, so should be taken together with magnesium at a third the amount of calcium. Anyway, most plant based milks are also fortified with vitamin D... A much better natural source of vitamin D would be fish oils, like cod liver oil.

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I have chronic migraines and hemiplegic migraines. I just passed the 1 year anniversary of my HM diagnosis, which I received after being admitted to OCU for suspected stroke. Triptans are not prescribed here in the US for HM because they can increase the risk of stroke. Topamax made both my chronic and hemiplegic migraines MUCH worse and increased the frequency. BP meds didn't work and caused lethargy and weight gain. I did an elimination diet to find food triggers and found out that too much sun and certain lighting/flash photography are also triggers for me. My success in cutting down on how many I have has come in a combo of Botox (administered by neurologist- 31 shots every 3 months) and Emgality shots, monthly. It took 2 rounds of Botox to start noticing a difference, but a couple weeks after the third was significantly different. I've gone from having one or the other (or both) pretty much daily, to having 1-2 migraines per week. When I have a hemiplegic migraine now, it doesn't seem as severe; I can still walk now (might drag a little), I don't notice the spasms and my vision isn't quite so wonky. Another thing that has helped was getting levels right- B12 and iron levels have always been a struggle for me. The more they dip, the worse my migraines are. I hear that other deficiencies can impact the # of hemiplegic migraines and severity. Best wishes in your treatment and progress!

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Thank you for replying, yeah I’ve heard that they increase the risk of stroke but I haven’t actually had a HM diagnosis so I think they just gave me them anyway. I’m trying my best to figure out what my triggers are but I’m not sure at the moment, I’ve never heard of Botox helping how interesting. I do also have b12 and iron deficiency as I have coeliacs disease so I’m on supplements for both

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