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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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  • TheMightyPerez
    TheMightyPerez sanddancer

    Posted

    I haven't posted here for a while, so thought i would share my recent encounters.

    so I discovered i suffered from hp migranes when i was doing my medical for the Navy and the doctor there realised that all of the things i had suffered from in my life were because of this (great).

    anyway, i have been properly diagnosed by a neurologist of suffering from "Chronic Migranes and Hemiplegic Migranes", i'm coping without meds because ive had the constant daily head pain and pins needles parts of it my whole life and coped, and i am trying to continue (we have looked into a couple of routes incase i cant cope anymore). What really annoys me is when people try to help by offering you pain medicine, i understand they mean well but it is so frustrating because it don't work and people dont understand what you are going through!

    recently something strange happened to my mum, and they thought she had a stroke (my mum has never had a hp attack in her life and is nearly 50) and it turns out after being in hospital over a week that she had suffered from one, and now she sympathises with me more as she realised how bad they can be. I am hoping it is just a one of for her.

    recently i have had a constant chronic migrane for about 2 weeks straight, with frequent numbness (especially in my left arm and leg), pins and needles, ear ringing, speech slurred, memory loss and vision problems (lines, lights, blobbs). I have not had a day of work yet, and feel that i need to fight through it and not let it defeat me in front of my friends and colleagues, but its so hard.

    so thank you to all of you for sharing and making me remember i am not the only one, and i hope you can all fight through.

    • TheMightyPerez
      TheMightyPerez

      Posted

      I appoligse for the grammer and spelling error's, it is hard to concentrate on writing.
  • TweetyTwouble
    TweetyTwouble sanddancer

    Posted

    Hey everyone,

    I'm new on here. I guess i will start at the beginning.

    I was diagnosed at 18 with hemiplegic migraine after a bunch of tests and then they thought mini strokes and then this was flung in the air and decided upon. Most of my attacks disappeared i had the odd paralysis episode every couple of months, that was until 2 years ago next month.

    Basically I completly collapsed at work and was sent home i was physically exhauseted. When I awoke the foloowing day i thought i was blind all i could see was blackness it was like a thousand needles in my eyes and the pain was excruating. I was rushed to hospital and cutting a long story short I haven't been able to work since.

    I am in CONSTANT pain the back of my head feels like a sledgehammer is constant weighing me down with the stabbing coming and going the numbness is happening at least once a week i am constantly tingiling, no medication has had any affect what so ever I've just finished a course of botox which did nothing I am not convinced my syptoms only relate to this condition i am querying ms or me however the neurologist is totally wiping me off because i had this diagnosis years ago. 

    I dont understand how this pain hasn't even subsided after 2 years, I'm getting slower and weaker and yet they don't seem to be listening or helping me. I guess i am an unlucky patient!

     

    • TheMightyPerez
      TheMightyPerez TweetyTwouble

      Posted

      Welcome!

      I am sorry i won't be much use, as personally i have had some different experiences. However we have all gone through some similarities and hopefully some of the more senior members can give you some helpful advice!

      I understand the getting slower and weaker, if i can motivate myself i try to do some physical exercise, (just my personal experience) but it seems to kick start my mind and body. I understand you are probably in a lot of pain and dont want to be thinking about it, but it has really helped me.

      I remember when my neurologist told me about having botox, we laughed...probably shouldnt have. It relaxed the room though in an otherwise pretty serious conversation. I hope they find a way to help you cope, medication hasnt worked for me either but i have found myself able to cope with it most of the time, hopefully you can find a way to get to a similar stage.

      Just remember you aren't alone in feeling this way, and hopefully someone can give you some useful advice!

  • farm_girl
    farm_girl sanddancer

    Posted

    Hi I have very similar symptoms with mine I was diagnosed 4 years ago they thought I was having a stroke and ran every test they could thats when I was diagnosed and given Imitrex and sent home only later to find out it is contra indicated for treament of hemiplegic so if you have this type of migraine never take Imitrex it could kill you. So I never did anything after that because I did not have any other problems until this year a week before Thanksgiving I had two exactly a week apart wiped me out for three weeks and I was unable to do anything all I did was sleep.I currently am seeing a neurologist and she is really knowledgeable about them and thinks it could be combination of seizure and migraine because I am so wiped out after the episode.  I am currently taking amitriptylin 10 mg once a day seems to stop the daily headache. But I feel like I have lasting effects my vision is off, and sometimes seems like I can't quite put the pieces together with my thoughs. I have the numbness the sharp headache effects my vison and my speach my voice sounds like  I have a cold since the last episode its been a couple months now and I am still not 100% went to eye doctor today and now have a condition where my eyes are having a hard time focusing together I really think it is from the migraine. I feel helpless and crazy at the same time! thanks for your post I don't feel so alone.
    • claire22878
      claire22878 farm_girl

      Posted

      Hi,

      I was wondering if you had tried a cosmetic tint on a pair of glasses for the days I struggle with eyes too.

      Hope you can be settled soon.x

  • Tindachi73
    Tindachi73 sanddancer

    Posted

    Hi, I had my first HM attack over a year ago and it landed me in hospital for almost a week(due to the symptoms being so much like a bleed) I had an intense headache, inability to think and talk, struggled to walk, issues with light... It was VERY scary and painfulsad

    Since I have had weekly migraines with some combination of symptoms... They did say it was possible it was migraines, HM or migraines with auras.

    Last week I started with a migraine and ear ache... This was Saturday, Tuesday I saw GP... Started to feel a little better than Friday had two severe attacks and lost all feeling in LHS... In and out of consciousness... It was awful... Nausea, vertigo, pain with light, confusion, lost words, no reflexes at all in LHS, loss of peripheral vision sad

    Stayed in hospital, had CT... ??? Bleed... Was going to look at LP but due to last years full attack it was decided definite HM... It's sun/mon now and this weakness isn't going... I'm struggling when I eat with numbness and very scaredsad I've been prescribed amitriptaliene but due to back injury I'm already on a cocktail of medssad

    I empathise with all who have this... It's scary, debilitating and if someone says to me 'oh I have migraines n I sleep them off in an hour or two!' Again, I will not be held responsible for my actions!!!

    I guess I just want to know, could I be stuck with this paralysis sad xxx

  • lisa53654
    lisa53654 sanddancer

    Posted

    Hi folks,

    I have suffered migraines for about 8 years now have been through so many treatements I'm now on prescribed injections to kill the pain, over the weekend my right hand side went numb (hand and face) doctor has now told me it is HM .I already miss work due to previous migraines as they floor me for days. Been doing a lot of reading on hemiplegic migraines but really struggling to get .t head round it all.

    any hints tips anything at all? Would be really grateful

    thanks x

    • tombigirl
      tombigirl lisa53654

      Posted

      Hi Lisa, I'm sure everyone here empathises with you as we all struggle with this in one form or another.  I found the diagnosis of HM extremely overwhelming once I realised the implications of it.  I'm a very independent, "healthy" person and so the idea of this affecting my life so extremely has been hard to adjust to.  I found the most helpful information I've found so far is on the Hemiplegic Migraine Foundation website.  They also have a closed Facebook group that you can join for support that has loads of info on.  I particularly like a brochure they've had drawn up which describes what HM is and all the symptoms.  This is great for not only educating yourself, but your friends and family.  I also keep a copy in my bag so if I end up in hospital again, I can give it to the doctors who seem to know nothing about this condition.  All the very best and try to take one day at a time otherwise one becomes somewhat overwhelmed by all the possibilities.
    • sanddancer
      sanddancer tombigirl

      Posted

      Hm is a nightmare. After my tia and then this developing from that it's been in and out of work and health ever since . National mygraine centre in London was a good call and helped me a lot. I find that as my symptoms are so acute I end up on the stroke unit with a bad case incase I've had one. Best of luck to you
    • lisa53654
      lisa53654 tombigirl

      Posted

      Hi yeah my head is all over the place with it firstly trying to get all the implications and get as much Information as possible without giving myself the fear.some of the implications of it are a massive issue for me because I am very independent as well the thought of losing my job due to absence is a hard thing for me or the speech thing like mixing up my words or forgetting what I was saying mid sentence I work in a call centre ha.thank you I will have a look at Facebook any advice is really helpful. I really do appreciate it. Hope you are doing well thanks again. 
    • tombigirl
      tombigirl lisa53654

      Posted

      It's a good thing to be informed, but now I've got some good information under my belt I'm actually trying not to spend too much time reading about the HM because I found it making me depressed and fearful.  I have decided to do what I can to limit the attacks with the medication I've been put on and adjusting my diet and daily activity (I'm a Type A personality and so I tend to get stressed over things due to my perfectionist nature!!!)  Apart from that I will deal with each situation as it arises.  I don't want this to govern my life.  I realise for some people they live with it on a daily basis and so it does control their days.  But right now, for me I just want to try and get on with life as best I can smile
    • sanddancer
      sanddancer tombigirl

      Posted

      Knowedge is good it helps to resolve things . I'm amazed at how many gps and even consultants haven't a clue about it and are or the opinion it's just a headache and get over it . This last dose I've had I was walking with a stick for 3 months. I've only just 2 weeks ago got rid of it. Work are being an arse about me going back as I'm a carer in a home. Oh the joys !!! smile
    • claire22878
      claire22878 sanddancer

      Posted

      Hi, I've been off here for a while as been having my HM's all fully diagnosed & taken months to have my meds settled.

      Thx Sanddancer for ur support.

      All the help here is great.

  • margo19504
    margo19504 sanddancer

    Posted

    I am a 64 yr old Australian woman with 4 grown up children. 24 years ago I was diagnosed with a brain  tumour after having a stroke. I woke from the operation with severe photophobia and phonophobia ........ and that was the beginning of my Sporadic Hemaplegic Migraine. I was rushed to hospital many times in the first 3 years with a" stroke" but the cat scans proved negative. I was given Disprin direct  to thin my blood and had to be isolated in a dark room each time. The neurologists tested me for  "everything", but  i had "nothing" they could label except a type or rare migaine. I lived with pain in my head, especially behind the ears, until I started going to a cranial sacro therapist....incidentally a British trained physiotherapist who specialises in head trauma, whom I still see ocasionally.  I learned to manage my attacks and by trial and error, worked out the triggers.  Fluorescent lights,shopping centres, fireworks, any bright lights, glass walls,  computer screens, drumming and thumping bases, computer screens etc. I wear dark glasses and a brimmed hat even at night. I thought I was going crazy and many people, including my ex thought I was making it all up.  About 8 yrs ago I was diagnosed and knowledge is empowering.  I do everything to avoid triggers as I get all symptoms except vomiting.  I haven't had an attack for 4 years. I have recently flown to Europe and back and the jet lag of 10 hours/10 time zones has played havoc with  the "sensitivities" in my  head. I have not had aura or hemiplegia this time  but my co-ordination  and balance  have been severely affected and my head just hurts.  I will not fly East/West  intercontinentally again. Incidentally, I use an Apple computer that has a capability to  write white on black with a greyscale  called "universal Access" and I use it on the lowest  emitting light. I also have a special screen form Apple. Hope this helps someone...... it is an isolating, insidious form of migraine
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