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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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  • stephanie48504
    stephanie48504 sanddancer

    Posted

    I also have this type of migraine. I would like to talk with someone that understands what I experience. Mine started 3 years ago this may. Up until this week I didn't know what was wrong with me but I stumbled by accident on to this forum. It's almost word for word what happens to me. Have you been treated yet with any medications?
    • StevenRose
      StevenRose stephanie48504

      Posted

      Hi Stephanie,

      Have you been refered to a neurologist yet?  This is the first step and you have an MRI to rule out anything nasty.

      I can honestly say that Botox and Flunarizine have been a blessing for me.

      I ususally get admitted to hospital as they think its a stroke.

      How long have you suffered with it Stephanie?

    • StevenRose
      StevenRose

      Posted

      ah just read again you said 3 years ago.  Goodness and you have struggled all this time!

      trust me we all understand what you are going through on here Stephanie and we are all supportive.

      Just ask anything you like.

    • claire96524
      claire96524 stephanie48504

      Posted

      Hi there

      I have just had a half hearted diagnosis of this and I also get admitted to hospital when I suffer a bad episode.... if i can give you any advise it would be don't take topirmate

      I have tried it for a few days and it has made me feel dreadfull and unable to function....

      I'm now dreading speaking with the Neuro to tell him whatvi thought as this is the fourth drug I have rejected it's been six years now for me and I just feel like a weirdo when I try and tell what's wrong

      Can u ask when people are admitted to all their obs show as mostly normal?

      Only mine pretty much did last time and a nurse made me walk to the toilet only a few hours after my attack.......I asked for the loo and someone said to u need a chair and the nurse just butted in and very sharply said no she's fine she can walk..... It was so difficult coz I hadn't come fully round even to augure so I literally dragged myself......I just felt like well she said I'm fine so it must be in my head 😕

    • StevenRose
      StevenRose claire96524

      Posted

      Hi Claire,

      I can feel the frustration in your words and I can only agree with you!

      What you experienced in hospital was unacceptable and the nurse should have been reporrted, what was the point of being in hospital if they are just going to make you walk un aided anyway, you could have done that at home.  May I advise that when you are admitted next tiime, that you speak to your drs and let them know about that and they should speak to the nursing staff about it.

      My obs are always normal too, although because I am not doing anything in hospital my bp goes quite low and they get a bit excited about it, but apart from that they are always normal.

      I couldnt agree more about Topirimate, its so bad!.

      I always get the feeling that because we have no physical symptoms and the nursing staff dont understand what we have, they treat us like dirt because they cant be bothered with us.  I try and think of it this way, the drs admit us, so we are bad enough to take up a hospital bed, so whether the nurses like it or not I will stay there until the drs discharge me.  I have to say that not all the nurses that have helped me in hospital have not been like that, the narrow minded ones are in the minority,

      Good luck Claire and hope you get some sort of a break through soon,

       

  • Sunnysky
    Sunnysky sanddancer

    Posted

    Hi, I'm new to this website, but was hoping to get some help. I am 17 years old and was diganosed with hempligic migraine in August last year, I'll be turning 18 in June. The first time I had an attack, I was working, and it just came out of no where, I called an ambulance myself and got rushed into hospital with a suspected stroke. It started in my right calf, and I had this awful pain, then I can remember feeling this sensation come over my body, as if I could feel my blood travelling in me. I couldn't pick up the change in the till and I couldn't coordinate my arm and my hand, it spread down into my leg and I struggled to walk, then my face went all weird and I couldn't speak, and I felt like I was going to swallow my tongue. I was taken into hospital, and had another attack, with the second attack, I couldn't remember what the date was when I was asked, I remember replying "October the 9th" when really it was August. I also struggled to remember what certain words was, for example I would want to say "my foot is hurting" but instead I'd say something like "my fork is hurting" after having the second attack, I had a horrendous headache, the pain was unbearable and I kept asking the nurses to kill me because I couldn't cope with the pain. After being discharged from hospital, I had lots of other attacks, trips back into hospital, mri scans, and neurology appointments, etc etc. They put me on strong tablets, but I was hallucinating, and had awful side effects with them, so the neurologists decided to take me off the tablets and see how I would react with not having any tablets, months went by and I felt absolutely fine, I haven't had an attack since. Until 3 days ago.. I had an attack, and couldn't walk, I felt sick, and I couldn't open my eyes, it wasn't as bad as I have had in the past, but was still pretty awful, it's 4 days away till my 18th birthday, and I'm still feeling weak, slow and a bit "odd" I'm just asking for some advice, if there's anything out there what people have tried, any medication etc and it's worked for them, I'm also concerned because I recently have been taking the "progesterone only pill" and I am worried that it is causing these attacks to happen again? I'll also add the comment.. That my mother suffers with this condition, and has done for over 20 years, so the doctors said I have inherited it from her.

    ..sorry for it being so long! It would be much appreciated if someone could reply, and just give me a bit of advice.. Many thanks X

    • StevenRose
      StevenRose Sunnysky

      Posted

      Hello,

      I understand how you feel entirely, we all do on here and I will tell you exactly whats worked for me.  I go to the National neurological hospital in london and I see the headache specialist there.  I am on a Botox programme and a drug called Flunarizine and this combo has been amazing for me, others may well tell you different, but it works for me and de stressing my life as stress plays a part in agrevating HM.

      Good luck and let us know if you find something that works for you.

      Best wishes

    • StevenRose
      StevenRose

      Posted

      I mean too much stress plays a part in agrevating HM
    • ashri
      ashri Sunnysky

      Posted

      Hi sunnysky,

      I'm 29 and my first episode was 3 years ago. Of course then, I didn't know what this was. I got my second one 2 years later and again, didn't know what happened and just brushed it off. I started getting them at the beginning of this year weeks apart for a few months and then started getting them every other day. I am fortunate to say that mine only last that day unlike others, but I start getting symptoms at around 2 pm and I'll know that I'm going to have an episode later that night. I was going paralyzed when I would have my episodes but then I started having times where just my neck would go out a few times and that would be it. I wouldn't always get the headache but recently when I do, they are very bad. The last one I got from an epsisode lasted until the next episode I had 3 days later. Sleeping did not help and taking pain pills made it worse. Thats just some of it but if you have any questions for me, feel free to ask.

      To everyone,

      I was interested in finding out if anyone else loses complete energy suddenly. I've been diagnosed with HM and was getting all the symptoms everyone else gets like going paralyzed on one side, slurred or jumbled speech, sometimes get the headache, and even the cravings. But recently, I started losing all energy to the point where I can't even raise my arms up or stay awake. Then suddenly I'll be fine and have all energy back. I wouldn't say I'm paralyzed because I can barely move my fingers or toes but other than that it'll hit sometimes and I suddenly can't even move, I can't even hold my head up. I will gradually get my energy back over hours if not sooner but many times lately, it doesn't come back fully until the next day. I feel like I am niney years old suddenly when it happens. Anyway, I wanted to know if anyone else gets these. Thank you.

    • ashri
      ashri

      Posted

      oh and sunnysky,

      I take calcium channel blockers named verapamil. So far I have had only one paralyzing episode and a few times where I have lost my energy and its been two weeks. I haven't had any side effects from them and have had almost no symptoms with my episode or loss of energy. I would get very confused and was starting to lose my memory before and haven't gotten that but once either in the beginning of taking them. Hope that helps!

  • lwmichelle2d
    lwmichelle2d sanddancer

    Posted

    Hello Everyone, 

    I stumbled across this board searching for "recoverying from memory loss from an atypical migraine" and discovered that some of us here on the board have had very similar symptoms. I recently suffered from what the ER doctors state and upon reaching out to quite well known headache neurolgist in my area what they refer to as an atypical migraine, which mimics a stroke in ever way possible. I will be going to see a neurologist today for farther followup. I am currenlty take maxalt and predinisone. I also suffer from Fibromalgia and personally with my nursing background I wonder honestly If there is a direct correlation between the two? I dont honestly remember to much at this point about what happened other rescue having to be called and not being able to speak. The pain being in my head, and I remeber telling my husband my head didnt feel right and I passed out. I know this is frustrating to us all though being the guniea pig. The "brain" is like this complicated piece of equipment of so many layers. I feel mine firing trying so hard to make heads and tails of what has happened. Its like I was misplaced in this alterante dimension or something. While the world around me continues to move on. 

    • StevenRose
      StevenRose lwmichelle2d

      Posted

      hello,

      Yes the term atypical migraine must mean the same as hemiplegic migraine that we all suffer from on this particular forum.  Like you said it mimics a stroke and when it starts nothing can be done to stop it, according to my neurologist.

      I have Botox and Flunarizine and I have found it helps a lot.  Good luck with neurologist and hope you get a plan of action to prevent these migraines happening.

    • Mellor71
      Mellor71 lwmichelle2d

      Posted

      Hi I was recently diagnosed with the same and 7 weeks ago I had my first attack , since the symptoms are like a stroke I too was taken to an A&E dept and received due care and attention. I am suffering some memory loss and feel a bit of a tumble mixing up words etc .. I'm waiting to see a neurologist but at the moment I'm not on any meds , it's very frighting as I've never experienced anything like this. I have been told that two arteries at the rear of my brain have slight narrowing and further investigation is required
    • lwmichelle2d
      lwmichelle2d Mellor71

      Posted

      Hi Mellor71,

      I can understand where you're coming from. I just saw neurologist today and I'm awaiting EEG and MRI on my head to get as far as you have to search for blocked and or narrowing brain vessels. He stated however that he is not ruling out seizures or an aneurysm either not just an atypical migraine.

      As most of us know and from my research Atypical migraines can be quite strange. My thoughts and prayers are with you. I'll keep you updated with me and you do the same also. Together we are all stronger!!!

  • LindaKay53
    LindaKay53 sanddancer

    Posted

    Hello,

    I started having these same episodes about 11 years ago. They finally went away I guess, may be I had some and just didn't notice. In January 2015 it started back with a vengeance. I woke up feeling fuzzy then I started stuttering, slurring, confused, gave drooping.weak...My friend took me to hospital they did MRI, CT's, x rays all kinds of crap, said it was probably complicated migraines. I was giving topamax and sent home....Now over a year I am still having bad episodes, I've quit my job because I just can't keep going, I'm so tired, depressed, and now having, panic attacks .so right now I have no insurance so i cant even go to dr....i have filed for state insurance, and disability . I just want it to end, it's so embarrassing not being able to think, or talk, or drive sometimes. I have gotten lost going home before. Anyway I will stop my crying now just needed to unload on people I knew would understand.... ~Love and Peace ~

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