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hemiplegic migraine

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sanddancer
sanddancer

i have recently been diagnosed with hemiplegic migraines. as its such a rare condition alot of doctors dont know anything about it , or how to treat this debilitating condition. i am typing this because i hope that it may help someone out there who is going through this and the doctors dont seem to know what is going on with them.

my symptoms tend to start two days out from an attack. i usually get a nasty ache at the back of my head , its tends to be dull and very painful, a score of 7-8 is normal. my head will feel like a block of lead, and i become very tired and listless. i tend to do alot of sleeping as well. on the second day my balance starts to go and i stumble about and and i notice my speech gets slightly slirred.

the attack usually induces bells palsey to the lhs of my face, my left eye droops as does my mouth. i have swollowing difficulties and loose sensation down the lhs from face through all my limbs. i get paralysis on the lhs in my limbs. i usually cant pass urine so i have to be catheritised, and am nil by mouth. the attacks seem to get worse each time as well , the last time i was taken to hospital in a semi concious state . i usually start to come out of it typically 3 days after the attack and my left arm is the first to fully recover , while my balance and left leg can take 2-3 weeks to come right . that depends on the severity of the attack . i find that i never make a full recovery either , so i am left with short term memory loss and learning difficulties , and am on a soft food diet only. i can only work parttime now as well, my body doesnt like full time hours and i got very washed out. i find 4-5 hours is maximum for me per day any longer and i hit a wall and struggle to go on. the nurologist said that half my brain goes to sleep which causes this. its not curable and they can only try to prevent reoccurance or limit the effects.

ive tried propanalol and topomax , but they didnt help at all , so im currently on amitriptaline. the neurologist started a weekly dose 5 weeks ago after an attack beginning with 10mg and increasing it over 5 weeks to 50mg. i had an attack during this time and am now on 75mg.

with not much being known about these debilitating migraines im surprised that a nurologist or gp hasnt worked with patients who suffer these migraines and written something for the drs to read as a guide to diagnosis or help prevent them. if any doctor wants to do so them im willing to help with this , to aid anyone else who suffers this rare debilitating migraine.

15 likes, 418 replies

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  • siana85124
    siana85124

    Posted

    Hello my name is Siana, I would like to share my story of how I came among migraines. A few months ago it all began when during certain times of the day I started getting attacks with painful head pains and pressure. Then it got a lot worse, when the migraines began to become continuous. During the mornings they are not so bad as during the evenings. I feel as if someone is squeezing my head together or that I am carrying a massive heavy rock on my head constantly. This has caused my to lose my balance, feel really unsteady and very weak. Especially on the right side of my body. So this worried me and my parents seeing as I am only 16 years old and it is constant and has been for the past 6 weeks. I was at the hospital where they did a CT Scan and an MRI Scan on my brain. They said that everything looked absolutely normal. I would like some ideas about what type of migraine this could be so I could find out how long it will last and how dangerous It is. I am really frightened as I have missed a whole term off college and have so much work to do but can't simply concentrate because of the constant pain. Doctors have advised me to stay stress free and eat and drink in huge amounts. I have done so but nothing is changing. My neurologist has also advised me to be very conservative with pain killers as they may worsen the migraine. I cannot bare this any longer. I need urgent help and advise. At least I need to know that there is someone out there who is suffering with a similar or the same type of condition. I have never felt so alone in this.
  • siana85124
    siana85124

    Posted

    I also have nausea and weakness especially on my right side due to the pain. I am so frightened because this has not stopped for once during these 6 weeks. At certain times of the day it gets a lot worse but it is always there. I need to know what type of damage these migraines can cause.

    • Lissybabe
      Lissybabe siana85124

      Posted

      I'm so sorry you are having to deal with this so young! But on the positive side, you have an idea of what you are up against, and that is good. I had terrible migraines through my teens, 20's, 30's, and finally late 30's got diagnosed. It's been another 16 years, and no better. Check if your Dr. will put you on a migraine preventative. The best ones for me were Topamax (also helps you lose weight, worked well until I got allergic to it, thanks to fibromyalgia), and Depakote, which worked really very well, except that it made me gain weight. If you can get on a preventative that's working for you, you may be able to get back to your schooling, just maybe slower. The worst side effects of HM that I have are that I think slower than I used to. I can still think clearly and intelligently, but slower. I also have some residual left sided weakness in my left arm and leg. Another thing that's been helping me, is drinking ginger tea, steeping slivers of  ginger root in heated water, then sweeten and drink. Sometimes this will work when nothing else does. Also good for nausea. If you have the hemiplegic type migraines, you won't be able to take the triptans or ergotamines as rescue medications, because that type migraine has an increased risk of stroke. The preventatives, and narcotics for rescue headaches (including going to the hospital for treatments). Good luck! Don't give up on life, and don't give up on yourself. Never let anyone make you feel bad, because migraines are never in your control. God Bless, young lady, praying for some answers for you!
  • smurphy
    smurphy

    Posted

    Hi i had my first recorded attack of this in July 2011 and have been affected every day since. looking back there was other attacks before that but as i didnt develop head pain with my migraines until mid 2012 it didnt make much sense to me, i am lucky in that i had a year with just the hemiplegia and auras, the attacks are daily and i never really get out of predrome / aura / pain / postdrome till it all starts again. i try to keep as positive as i can and have a permanant bag packed for emergency hospital admissions as need to get physio at times and get mobilised again as sometimes both sides are affected by this. currently this condition runs my life and a lot of things are affected but im hoping for better days. im 38 now and when i was 15 i had my first confirmed "normal" type migraine it was 3 weeks long and then gp was going to refer to a neurologist but changed his mind as i was also depressed so i became involved with psych services instead grr
    • Lissybabe
      Lissybabe smurphy

      Posted

      Hey, saw your post. You may want to go back to that referring doctor and give him a chemistry lesson. (probably the psyc dr too!). So many people think you get depressed and that makes your illness worse. In reality, it's usually the opposite! When your illness gets worse, you get depressed. This is because of the pain. Serotonin is the "feel good" chemical in your brain that keeps us all on an even keel. Unfortunately, many dr.s don't know that Pain eats Serotonin like a 1970's hippie bus eats gas! When your serotonin level is depleted, because of the pain, then you do get depressed. To fix the serotonin problem, you have a couple of options. I do both of these things: 1. Ask to be put on a SSRI med for depression. SSRI meds gather up all the serotonin in your brain to one place so it can do it's job. 2. With your dr's permission, you may want to try a supplement called 5-HTP. 5-HTP is the precursor to triptophan in your brain (that contented feeling after drinking milk or eating lots of turkey on Thanksgiving), and the triptophan in your brain is a precursor to serotonin. You just have to be careful not to overuse them both, because it can cause Serotonin Syndrome (heartbeat and mind racing, nervousness). I buy my 5 HTP online at Puritan's Pride company (.com). Good luck, hope my experience helps you!
  • catarina36734
    catarina36734

    Posted

    I have Hemiplegic Migraine as well the doctors didn't know what was wrong. After spending half Oct. of 2013 in the hospital after running a bunch of test and nothing was showing up and all my test where negative they didn't know what was wrong till they call in a Neurologists after taking 1 test and having me act like a crazy fool in the hospital room he knew right away that was Hemiplegic Migraine. He had prescribed to me a old antidepressant (amitriptyline) to help with the attacks of where I go numb on one side and travels up my face and to the other side and stops and I lose oxygen to my brain and I don't know where I am or ho nobody is. to deal with the attacks before they happen he told me to take 3 Ibuprofen and drink with a coke..i also have to carry Ibuprofen and a coke with me at all times just in case I feel one come on somehow the 3 Ibuprofen and drink it with a coke helps stop the attack and the migraine all in one. The meds im on makes me sleep a lot but id rather sleep little while longer than have those attacks!
  • andrew94167
    andrew94167

    Posted

    Hi Catarina

    I have totally the same infact had a attack this morn ! Luckily it wasn't bad you can read above about what happened to me it's people understanding and getting help that's the problem anyone who would like a chat contact me

    Emis Moderator comment: I have removed the email address as we do not publish these. If users wish to exchange these details or chat out of the forum then please use the message facility

  • benweimy
    benweimy

    Posted

    Hi all!! I'm 40, male, fairly fit, good BMI, family man, but with family history of migraine etc.

    I'm new to this; I got taken into hospital last Thu after suffering an instant and acute pain in the rear LHS of my head and neck. 15 mins later I was trying to pull my hands out of my pocket and only the left one came out. My brain went through a very confused moment of thinking my arm had been blown off! Crazy thoughts!! Then the palsy kicked in on my cheek and i couldn't talk to explain my problems to a colleague. This only lasted about 20 secs and all seemed to return to normal.

    I have now had the same pain in the back of my neck, like a muscular pain which hurts when I turn my head. Its been a few days so I was hoping that it would have gone by now.

    Is this normal? I'm nowhere near as bad as some of you guys, but this pain is literally doing my head in!

    • Lissybabe
      Lissybabe benweimy

      Posted

      Sounds like it could be Hemiplegic type migraines. I have those, and also have the bad neck and head pain, as well as weakness on one side. Besides it being a possible aura to HM, it could also be a contributing factor to HM. In my case, I also have Occipital Neuralgia. That is a pain that starts right over my left occiput, and spreads in a "ram's horn" shape up over the back of my head and lands in my temple. Also affects my jaw as well. I have had that occipital nerve in my neck burned 4 times. The first 2 times did very well for me in preventing this pain, but the last 2 made it much worse. Worth checking into it, anyway. Good Luck, hope you feel better SOON!
  • stringman
    stringman

    Posted

    Hi all,

    I must confess I haven't read all the posts but thought I would add my story to the mix.

    I am a 48year old male, realatively fit (in medical terms at least) non smoker.

    I have always had headaches generally over one eye or the other. As a teen I was diagnosed with cluster

    headaches but had no real treatment.

    In Febuary 2013 I was working late and very stressed, at 3 am I was a passenger in a van, asleep for the

    journey. when I woke up I have a very sharp pain in the back of my head and neck. I put this down to sleeping awkwardly.

    The next morning I woke up with a bad headache (cant remember where) and extreme vertigo (the room was spinning like I was drunk) for the first few days I could only walk by holding the walls) I was given anti dizziness pills but they made it worse) On the Saturday ( a week after the first neck pain) I was able to walk

    outside ( walking like an 80 year old) I then had a speech episode where in my mind I was trying to get the words out but in reality I was talking gibberish ( I had no idea that I was actually"speaking") whilst I waited for a car to pick me up I had my eyes closed and had the most strange pain in the left side of my head which I can only describe as pain blooming like a flower opening in a sped up film- this was visual as well (even though my eyes were closed. with a blooming of colour.

    That evening I went to the emergency doctors. my eye tracking was bad, my co ordination bad so I was sent to hospital. Eventually I was told I had had a stroke or TIA. After several CT scans and MRI I was told I had not had a stroke and there was no evidence that I had had a TIA. I was discharged and told I could go back to work and drive, despite being unable to walk unaided. No follow up appointments were given.

    I was put on aspirin and statins.

    Jump forward a few months and still not feeling right I demanded to see the stroke consultant.

    He went Mad as I had just been abandoned, so I started anti stroke drugs and had every test related tostrokes.

    All this times I was getting the headaches as usual.

    Jump forward to June and at a concert ( I was again very stressed) I put my son on my shoulders, straight away my left arm went numb so I put him down, the numbness went. half an hour later I tried again. The numbness came back but when I got him down the pain didn't go for 2 hours. The next day the pain/numbness came back when I dropped my boys home ( no lifting but very stressed) the pain came back and 5 hours later I was in hospital again but on the cardiac ward!) More tests and more MRI (inc full head and neck and dye tests)

    I was discharged saying it was probably a mimic stroke caused by migraine, I started on amitriptyline, and for the first few weeks it was heaven as I didn't have a single headache. But they came back. So the dose was upped (eventually to 70mg/day) but still the headaches came.

    I was referred to a neuro consultant ( an expert in migraines) who was quite dismissive and just kept me on the amitriptyline and naproxen and codeine for pain.

    On my last visit to the stroke consultant I was diagnosed with HM and put on propanalol 80mg sr twicedaily with a view to changing to gabapentin or valproate and was discharged.

    But on investigating HM it seems that these drugs are no longer the "in favour" drugs.

    Strangely today I got another appointment to see the stroke consultant next month, I haven't got a clue why but if anyone can point me in the direction of what questions I should ask I would be grateful.

    Sorry for such a long post

    • Lissybabe
      Lissybabe stringman

      Posted

      Hey Stringman. Sorry to hear about all the HM trouble! I've dealt with it for many years, officially diagnosed in 2001. A Migraine specialist would be a great place to start, or a neurologist who knows about migraines. Yes, the meds you describe are old school, although cheap and effective for some people. Here is what I can tell you from my experience: 1. Topamax-great stuff. Now generic so it's not so expensive. Helps you lose weight too. Good choice, unless you're allergic to it, or to sulfa. 2. Depakote-Really works great, but with the side effect of weight gain. 3 Neurontin: Works for migraines, best for the aura symptoms, expecially the nerve pain in limbs and face. Has a side effect of causing a tremor in some people, but so far so good for me. 4. Lyrica: Helps some with the migraines, very good for the nerve pain. Side effect of swelling of my legs, ankles, hands, face (not allergic, just puffy) was why I went off it. That and the price. Lastly, you definitely don't want a doc who is dismissive. Keep searching til you find one you mesh with. Makes things so much better. Good Luck!
  • emma18197
    emma18197

    Posted

    Hi,

    diagnoses quandry

    like most of you I ended up in casulty a couple of years ago after telling the doctor about numbness and weakness down the left side of my face and upper body, arm and leg - I also had difficulty swallowing. I'd suffered from migraine for years (the 3 days non-functioning - throw up & fine sort), but on this occasion I had no headache (usually I'm wishing somebody would pop out my right eyeball for some relief). I was extremely tired and had mild ache pain everywhere else - during 5 days in hospital getting CT scan, MRI scan, lumbar puncture I of course developed a cracker 3 dayer (they had to time the lumbar puncture for just as I finished a throwing up session, bungled it and then didn't let me in on that other cracking symptom known as lumbar puncture headache - from draining too much fluid out - so although discharged I was flat on my back with that for another 10 days).

    Back then they diagnosed HM and Fibromyalgia (as an afterthought), when I complained about the tiredness and general pain and signed me off. So now I still get the numbness & weakness & talk rubbish & I can feel a droop at the right side of my mouth for a couple of days etc. (I don't tell anybody though...No..No..No), but the migraine headache is distinctly seperate and can not show up at all or about 3-5days after. The general pain and tiredness is now worse and pretty constant so I went to the doctor who is treating me for Fibromyalgia with an anti-epileptic drug (haven't started yet - the side effects look worse than the cure) and has booked me in to see a Neurologist with the promise that I will not under any circumstances have to have another lumbar puncture.

    Anybody else had a diagnoses of Fibromyalgia running alongside HM?

    Emma

    • Lissybabe
      Lissybabe emma18197

      Posted

      Hey Emma. Yes, I have both those diagnosis concurrently, along with Occipital Neuralgia. Loads of fun (ick). The symptoms you describe certainly sound like HM and Fibro. Sounds like you also get the "silent migraines", the ones where it's just the HM nerve pain, but no headache. I don't know which is worse, don't like either! The anti-epileptics work good. I especially found Topamax and Depakote to do well for me. Currently on Neurontin, though, to also help control the burning-tingling-numbness hemi symptoms. Because my migraines are HM and not the usual kind, I was told not to take the triptans or ergotomines due to increased risk of stroke. Instead they give me narcs, and if that don't work, I go into the treatment center for an iv "cocktail", and that usually works. Good Luck! Hope some of this info it helpful! P.S. Lyrica does good too, especially with nerve pain and fibro issues, but it made my feet, ankles, hands, and face to swell as a side effect. also very expensive.
  • purple19m
    purple19m

    Posted

    I am just starting Verapamil as I have read that these are very good for Hemiplegic migraine. I have also started a diary on migraine talk so I can keep track of my progress and try and beat these attacks.

    I have also had great success with Pizotifen but sadly it does not stop the hormone ones, but I am on a mission to beat them!

  • sanddancer
    sanddancer

    Posted

    Hi all. Been a while since i posted. You never get rid of the monster as i am finding out .... eye down bells palsey .. numb left arm and leg. Its annoying but its a fact well never be rid of it. Yes i have been told you are at a higher risk of stroke because of it. My head feels like lead. Off to bed and relax. I find flus and colds which get in to my head affect me .... sad
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