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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

418 Replies

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  • jared21
    jared21

    Posted

    Hi, am new to this site as I am doing research on a different subject but like to keep up on any info re hemiplegic migraines. I was diagnosed about 7 years ago with hemiplegic migraines having had 'normal' ones since I was a child. done all the regular drugs on offer from the doc with no joy and the locum thinking I'd had a stroke because of the paralysis, facial drooping and slurred speech, when finally I saw a new doc in the surgery who put me on Epilim. This has been a miracle for me as I now only have one migraine a month - down from 2 a week and out of action for 3 days!! It still lasts 3 days but that I can cope with. Can't take beta blockers cos of my asthma. Also take Maxalt melt as I vomit and this way I can take them when I feel an attack coming on and not worry about throwing up my meds!!

    Epilim may be worth looking into if nothing else works x x

  • kaz17chris
    kaz17chris

    Posted

    Hi All,

    This week I was rushed to hospital with what they thought was another stroke. I was mortified to hear it was 'only a migraine'. Having no previous experience of migraine before, I really thought they were just a bad headache....HOW WRONG WAS I?!!!!

    I've had a number of TIA's before & 1 full stroke so I thought it was another. For 2 weeks before my attack I was really irritable with my poor hubby. I felt sick all the time, tired, headaches(which I don't normally suffer from) & right sided weakness. On Wednesday I was having my lashes done & realised I couldn't close my eyes properly, I just felt so ill too. When making my next appointment, I was talking to the receptionist & my speech suddenly 'went' I knew what I wanted to say but the words wouldn't come out. Apparently, my face had dropped on one side so they rang my hubby who turned up & the ambulance was called. I couldn't believe it when they said it was a migraine!

    It's now Saturday & I feel terrible. The headaches won't go, I went shopping yesterday with my hubby but it was too much & I had to come home & lie down for the rest of the day with all the blinds closed. I keep feeling dizzy, nauseous, headaches are awful, still irritable & have the paralysis. Can you give me some advice please? I don't know if I should drive or what I should do. I should say that I take Clopidogrel & Amitriptyline

  • loopyla
    loopyla

    Posted

    Hi all.

    I am totally new to all this, never joined a forum before but im so pleased I have found this thread.

    Since august I have had 5 episodes which all seem to be hm. After the first 3 attacks I was taken to hospital where they thought I was having a tis ( mini stroke) and have had a course of tests mri and ct etc all have come back negative.

    after having my 5th attack last night where I feel very dizzy, have balance problems, slurred speech. Pins and needles all down the left side. Couldnt move my legs and even my jaw went numb. I feel totally out of it and can hear whats going on but cant interact or have a conversation as cant get any words out. Then an overwhelming nausea then just so so tired. But last night I didnt really get a headache. Today ive just been exhausted and even slept this afternoon.

    ive had 3 months off work as I was so ill with it plus id been told it was stroke related and petrified.

    today I have been to the docs and he seems to think its hm and started me on some meds.

    does anybody on here have the so called aura without headache at times.

    thank you and all your posts above have really helped.

    smile

    • angela10718
      angela10718 loopyla

      Posted

      I have been taking amytriptalene since being diagnosed at Christmas which have more or less stopped the episodes which were loss of speech and numbness down the left side of my body . I just feel tired all the time which a lot of you seem to be suffering from I go to the gym on a regular basis but have found recently when doing cardio I am again suffering with the numbness in my left arm and concerned that I am doing myself harm by continuing . I am going back to doctors for some advice . Any body out there have any advice 
    • rachel03291
      rachel03291 loopyla

      Posted

      I have the aura without the headaches all the time iv recently had 2 in 2 weeks admitted to a&e but scan came bk OK but when I get a migraine it takes me weeks to feel OK but this time it seems to be taking longer for my symptoms to go I'm just so scared of having another they are so horrible it affects my right side I can't speak I'm sick sometimes not all the time
    • kathleen90110
      kathleen90110 rachel03291

      Posted

      Hi

      I've recently started having the same symptoms. I woke up one morning and knew instantly something was wrong...my left eye and mouth were numb and I couldn't focus I said to my partner I don't feel right and my speech was slurred and I felt very confused and the pain in my head was something I've never experienced before.... I was taken to a&e and 8 hours later after various tests and scans was told it was a hemiplegic migrane and sent home with some tablets. I've had 2 more episodes since in the last month and the last one felt worse. I've not seen my doctor as all that know me know I hate fuss and am very stubborn but I have to admit I am a little scared now as the last time this happened I was actually walking my kids into school! Luckily a friend got me home. It's taken longer to recover this time even though it was 5 days ago I still don't feel totally myself. I really know very little about this condition and to be honest reading the threads on this forum have helped and I don't feel like the only one!. If anyone has any advice on what if anything I should do now ie actually see my doctor etc it would be gratefully received. Thank you xx

    • kathleen90110
      kathleen90110 aprilg

      Posted

      I have seen my doctor who gave me propanalol but still getting episodes. I've been referred to neurologist just waiting now for appointment and it can't come soon enough!...I have a headache every day now and have the episodes on a regular basis and it's affecting my Dailey life as I'm a very active usually but now having time off work and doing stuff at home is becoming a chore!....

    • tara56807
      tara56807 kathleen90110

      Posted

      Hi kathleen ,

      I know exactly how u feel i have currentky been signed of work for a month while they sort my correct tablets out ect ..i constantly have headached this is the norm for ne but last week i had a migraine everyday ..i had my forst hemiplegic 2 weeka ago lost the feeling my arm and was took to hospital. My neurologist has told me to uo my dose of propanalol from 1 - 2 tablets a day for 2 weeks the 3 theb 4 a day . i hope this helos and u feel better soon x

    • kathleen90110
      kathleen90110 tara56807

      Posted

      Hi

      The work thing is the worst too as I've had 2 "episodes" whilst actually in work and I work in a school kitchen so going dizzy isn't the best!. I've actually got doctors again this evening as really had enough. So glad to have found this thread on here as nobody I know has hm and as soon as someone asks what is wrong with you and you mention the word migrane they kind of look at you as if to say "is that it?!"

      I hope you feel better soon too and they sort out meds that work xx

  • sanddancer
    sanddancer

    Posted

    Hm is a nightmare. And the biggest problem is that no mainstream nurologist deal with this condition. The specialise in other and do migraines as a sideline. I went to National Migraine Centre in London and saw nurologists who specilise in this field. Its donation only. But since going there its been a huge help. Im now on vitiman b2 and have stopped all opiod painkillers. Im 90% better. I strongly reccomend a call and visit .....
  • zoma777
    zoma777

    Posted

    I also have hemiplegic migraines. I was diagnosed after my child was born - i had an attack in the hospital when they tried to induce me. I'd had severe migraine with aura before that but doctors had no ldea the scope of my problem even though I told them - guess they had to see it for themselves. I did some research into it because my migraine lasted pretty much straight for about 3 and a half years. I had a couple of TIAs on top of that. Doctors tried so many different medications but a regime was finally settled on and was working. Then I had to move and the new doctors here wanted to try other things. Now I'm dealing with square one again. It really sucks. I don't think people realize the level and intensity of the pain in the head and neck. It is so bad I've had fantasizes of chopping or blowing my head off. The research I did showed that people with hemiplegic migraine also have what is known as basilar migraine. This is what confused my doctors for a long time since I was diagnosed with that type while in the hospital at 18. They are actually the same from research it's just another lovely little trip you get to take when you have this disease. It causes intense pain in your neck and the back of your head. I also get the hemiplegia and ataxia on the left side. I go blind and if I don't projectile vomit then I wish I could because I'm so miserably nauseous. I've had back surgery, had my back fractured and a herniated disc, am missing 2 discs and have terrible arthritis in my back but this is all like a pin prick compared to the pain and debilitating nature of this horrible disease. I feel your pain. I had no luck with calcium channel blockers or most drugs either. I also had a grand mal seizure while in the hospital so I was put on an anti-seizure medicine. That coupled with taking fiorinal with codiene on a regular basis and during periods of blindness using the contraindicated maxsalt when desperate was working. If I got into a grove I couldn't get out of I was put on methylprednisolone. That usually breaks the cycle for a period. I live in the states. Our health care system sucks. I try to avoid going to the hospital at almost all costs mostly because I fear it will make my migraine worse and I won't be able to take the fluorescent lights and long wait time. I also have an arrhythmia which seems to go crazy while I'm having an attack Or about to have one.
  • zoma777
    zoma777

    Posted

    I also have hemiplegic migraines. I was diagnosed after my child was born - i had an attack in the hospital when they tried to induce me. I'd had severe migraine with aura before that but doctors had no ldea the scope of my problem even though I told them - guess they had to see it for themselves. I did some research into it because my migraine lasted pretty much straight for about 3 and a half years. I had a couple of TIAs on top of that. Doctors tried so many different medications but a regime was finally settled on and was working. Then I had to move and the new doctors here wanted to try other things. Now I'm dealing with square one again. It really sucks. I don't think people realize the level and intensity of the pain in the head and neck. It is so bad I've had fantasizes of chopping or blowing my head off. The research I did showed that people with hemiplegic migraine also have what is known as basilar migraine. This is what confused my doctors for a long time since I was diagnosed with that type while in the hospital at 18. They are actually the same from research it's just another lovely little trip you get to take when you have this disease. It causes intense pain in your neck and the back of your head. I also get the hemiplegia and ataxia on the left side. I go blind and if I don't projectile vomit then I wish I could because I'm so miserably nauseous. I've had back surgery, had my back fractured and a herniated disc, am missing 2 discs and have terrible arthritis in my back but this is all like a pin prick compared to the pain and debilitating nature of this horrible disease. I feel your pain. I had no luck with calcium channel blockers or most drugs either. I also had a grand mal seizure while in the hospital so I was put on an anti-seizure medicine. That coupled with taking fiorinal with codiene on a regular basis and during periods of blindness using the contraindicated maxsalt when desperate was working. If I got into a grove I couldn't get out of I was put on methylprednisolone. That usually breaks the cycle for a period. I live in the states. Our health care system sucks. I try to avoid going to the hospital at almost all costs mostly because I fear it will make my migraine worse and I won't be able to take the fluorescent lights and long wait time. I also have an arrhythmia which seems to go crazy while I'm having an attack Or about to have one.
  • zoma777
    zoma777

    Posted

    I also have hemiplegic migraines. I was diagnosed after my child was born - i had an attack in the hospital when they tried to induce me. I'd had severe migraine with aura before that but doctors had no ldea the scope of my problem even though I told them - guess they had to see it for themselves. I did some research into it because my migraine lasted pretty much straight for about 3 and a half years. I had a couple of TIAs on top of that. Doctors tried so many different medications but a regime was finally settled on and was working. Then I had to move and the new doctors here wanted to try other things. Now I'm dealing with square one again. It really sucks. I don't think people realize the level and intensity of the pain in the head and neck. It is so bad I've had fantasizes of chopping or blowing my head off. The research I did showed that people with hemiplegic migraine also have what is known as basilar migraine. This is what confused my doctors for a long time since I was diagnosed with that type while in the hospital at 18. They are actually the same from research it's just another lovely little trip you get to take when you have this disease. It causes intense pain in your neck and the back of your head. I also get the hemiplegia and ataxia on the left side. I go blind and if I don't projectile vomit then I wish I could because I'm so miserably nauseous. I've had back surgery, had my back fractured and a herniated disc, am missing 2 discs and have terrible arthritis in my back but this is all like a pin prick compared to the pain and debilitating nature of this horrible disease. I feel your pain. I had no luck with calcium channel blockers or most drugs either. I also had a grand mal seizure while in the hospital so I was put on an anti-seizure medicine. That coupled with taking fiorinal with codiene on a regular basis and during periods of blindness using the contraindicated maxsalt when desperate was working. If I got into a grove I couldn't get out of I was put on methylprednisolone. That usually breaks the cycle for a period. I live in the states. Our health care system sucks. I try to avoid going to the hospital at almost all costs mostly because I fear it will make my migraine worse and I won't be able to take the fluorescent lights and long wait time. I also have an arrhythmia which seems to go crazy while I'm having an attack Or about to have one.
  • Sunshine123
    Sunshine123

    Posted

    Evening,

    I have been having a really bad time recently, I had a terrible headache for ten days, I couldn't get rid of it no matter what meds I took, my topamax just wouldn't work, I just wanted to sleep, all the time, this illness just takes over your life if you let it!

    I think that I am lucky though, I have a great doctor and consultant, although I don't see him, I haven't needed to for over a year, I medicate myself, they are fully supportive of whatever I need, I am also lucky that on the whole my topamax works, be it that I take huge amounts on a daily basis, I have found a drug that allows me to have a type of life. I have a headache every day, 24 hours a day, feel sick daily, tired, but as long as I rest, eat, take my meds, have holidays etc, I can live a life and work, and I will take that

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