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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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  • bea66
    bea66

    Posted

    Hi Sanddancer,

    just wondered how you were getting on?

    I've just found this forum, as I have been told I have 'hemiplegic type' migraine.

    I don't actually get paralysed, but bad pins and needles/fizzing/electric like pain in my limbs/face, left side, and blow you rhead off pain. It lasts days and takes days to recover, although I seem to have residual symptoms most of the time. I've got almost permanent visual problems, balnce etc. Have had 4 brain mri's, vep's and a lumbar puncture etc to test for ms, I have a pineal cyst too.

    Any body else out there in similar situation? I feel like I'm going to peices!

    • sanddancer
      sanddancer bea66

      Posted

      Hi there ! I'm struggling away trying not to over do things as doing so washes me out. I find do some housework rest then do some more then rest helps . It's a day to day thing and a mental battle too . I never give up hope of getting back to work .. part time if I can
    • sanddancer
      sanddancer

      Posted

      There are injections available for mygraines but not everyone is able to have them. I find stress can be a cause of them as well. No matter what your symptoms they are to be taken seriously by all medical professionals ... but alas they quite often don't. My house Is full of aids to help me when I have a biggie. There isn't a simple aura either ... I'm finding out that it varies person to person . Some even get functional nurologist disorder which can affect limbs even more after the attack. The govt should be funding more to find a cure for them and have neurologists at every hospital properly trained to deal with them .. not a neurologist which guesses away on an adhoc basis ...
    • kimberly77372
      kimberly77372 bea66

      Posted

      I have had problems over 8 years...slurry speech and loss muscle control on right side. I feel it come on then sick to my stomach headache. 3 neurologist and a trip to St Louis and still no Dr has diagnosis. Many meds even shots and said I should do shots in my head but I said no.
    • heather51637
      heather51637 bea66

      Posted

      Hi bea66 I've suffered with migraine for many years and have treat the pain with sumatriptan. However for the past 15 to 20 years I've had this kind of numbness in o e side of my head, weakness in one side of my body, general tiredness it started it was just now and again but for past few weeks it seems to be there most of the time although sometimes not as bad as others. I also have a kind of strategy getting feeling in one side of my face and tingling. Is this your experience?

    • akincaid1984
      akincaid1984 sanddancer

      Posted

      Hi I just was diagnosed with this crap and I don't know what to do. My attacks make me paralyzed one either the left or right side of my body. Then after the attack is over I have really bad headaches. I can't speak very well as my mouth droops, I can't think I have a hard time seeing and now I'm scaryto sleep for fear waking up having an attack. I don't know what to do. I'm scared and I've never had problems like this before. Does anyone know why people suddenly start having this?

    • jo24155
      jo24155 akincaid1984

      Posted

      Hi akincaid1984

      Not sure if you read my earlier post it was 21 days ago, but there are few things you may find helpful

      HM are extremely horrible and the only things in our situation that started them was hormones and stress

      Doctors have often asked if my daughter had a bad head or neck injury as an infant too.

    • OhBother
      OhBother heather51637

      Posted

      I was told anyone with hemiplegic migraine could not take the triptans or ergotomines because it increases the risk of stroke. You may want to question your doctor about this! I was cautioned strongly about this, when my diagnosis changed from complicated migraine to HM. I had been on a triptan, and they took me off ASAP.
    • effie_gee
      effie_gee OhBother

      Posted

      For me, 7 doctors in and none with the same opinion or diagnosis. I might as well use Dr Google. My less than amazing experience is that we get prescribed anything and everything even when it's contraindicated. Highly recommended that everyone with access to the internet checks for themselves, it's easy enough to do! I'm so glad you posted this. Thank you.

    • krisitn20713
      krisitn20713 effie_gee

      Posted

      How are you doing? I had a similar experience but have recovered. Thanks to a few good doc's and mostly experimenting with 'dr. google' recommendations! I still have to be very careful of I will relapse.

      Sending healing thoughts your way.

    • Paula2019
      Paula2019 OhBother

      Posted

      Hi OhBother, I have been diagnosed with Hemiplegic migraines, and had constant auras including parathesia down the whole of my rightside. I was on a cocktail of meds and since coming off all( including amit) but one my symptoms and migraines have disappeared.
    • Paula2019
      Paula2019

      Posted

      spoke to soon with my last post, have ended up with cluster hemiplegic migraines. Am now off my last med for the last few days am waiting to see what symptoms I am left with.

  • Lenks80
    Lenks80

    Posted

    Hi Sanddancer and bea66,

    I'm really sorry to hear about both of your migraine attacks and how severe they are. I can empathise with you. I started getting migraines when I was 7 - it was really scary for me and I didn't know what was happening to me (facial paralysis, visual disturbance, sickness, disorientation).

    Unlike Sanddancer I was really lucky to have a doctor whose wife suffered with hemiplegic migraine and understood what was happening to me. I then began on a course of all different types of medication. Around my mid-teens I started to get cluster migraines and I had to be sedated on several occasions because I was so unwell and couldn't stop being sick. Horrible horrible horrible.

    I was then sent to a neurologist for a full investigation and was prescribed the highest dosage of beta blockers. They made me put on weight, feel tired and sluggish plus I seemed to have pins and needles constantly because of them. For me this wasn't a long-term solution because I was concerned about the impact of lots of medication on my body. Luckily the clusters subsided until I was studying at uni, but I was in my 2nd year and worried that I wouldn't be able to get my work done if the attacks kept disrupting my work. I sought out a therapist so help me get through it and to see if I could improve things without heavy medication (I'm not suggesting you should do this or advising you do the same I'm just relaying my own story).

    We did quite a bit of work around the fear of migraine that I had and she helped me to release this. I also learnt about myself and that I am prone to stress and this can trigger an attack for me. Based on this I made sure I had a good diet, plenty of exercise and rest and the result has been that my migraines have got better. The attacks are easier to deal with and far far less frequent.

    The Migraine Trust have lots of useful information and also a Travelling Migraine Diary which you can fill in to tell other migraine sufferers about your story. They help you to feel less isolated too about being a sufferer as there are 8 million of us in the UK!

    I hope you guys find ways to manage your migraine better soon. I blog about migraine and how it has affected me, which I have found to be a great outlet.

    Lenks xx

  • Sunshine123
    Sunshine123

    Posted

    Hi, I too suffer from this rare condition and have found it hard to find any information or help with it. There is so little guidance or assistance out there.

    I take tops ax in huge amounts on a daily basis to control mine, but find it leaves me tired and to start with mt body reacted badly, my beautiful long hair fell out!!

    A year and a half on from my diagnosis I can work, but I have memory loss, and like you a few days out from an attack, I have a terrible headache, I sound drunk, I become clumsy, and can't think.

    When an attack takes place, I vomit continually for 24 hours, it is so awful, but it passes, and I am left with three days of complete exhaustion.

    Reading this at least I know there are a few more bodies out there feeling the same as me!!

    Sunshine xxx

  • sanddancer
    sanddancer

    Posted

    Hi sunshine and everyone. This has been a true nightmare. No meds worked for me and they cant decide if i had a tia or not. I woke 3 weeks ago totally numb down lhs and was incoherant. I havnt been right since. Ive had two episodes of sharp needle type pain in my head and numbness which wont go away. I see my gp today . He called me in straight away after a phone appt.

    I honestly think if there is questions and no firm evidence they dont know what to do and migraine is the easiest way out for them.

    • vanitar24625
      vanitar24625 sanddancer

      Posted

      It is the first time anyone I have heard have 'sharp needle type' headaches. Mine feels like ice picks. I had my first bad attack last week and have missing words in my brain. My left side is weak and I had sensitivity to smell, light and sensation a few days before this attack. I have had 8 small episodes since. The left side feels like heavy weights on it and breathing is laboured if to try to have conversations to long. I am so happy for this forum, as I feel alone and no one gets it.

    • StevenRose
      StevenRose vanitar24625

      Posted

      Hi,

      Yes HM is quite rare even some drs havent heard of it.

      All the symptoms you describe I get too, with really bad eye pain too.  Thankfully since starting Botox and Flunarizine I havent had one since January, so imagine how happy I am for this!  I have had minor symtoms that I thought was going to develop into a ful HM but it didnt.

      Good luck, let us know how you get on, always here for support

    • vanitar24625
      vanitar24625 StevenRose

      Posted

      Thank you. I am learning a lot here even though some things here are scary
    • jo24155
      jo24155 vanitar24625

      Posted

      Hi

      I really have a lot of sympathy for the pain you are describing my 13 year old daughter gets this pain she described it as her head in a vice and knives in her ears she screams bangs her head off the floor desperate to make it stop she has had endless attacks in the last 9 months but we found small things can help

      Find you're main trigger hers is sound she has to wear ear plugs when well enough to attend school

      Symptoms log everything we noticed her jaw cracks a lot a week before so we are prepared a big one is coming

      Keep a diet record see if you have more after eating certain foods common food triggers are milk cheese and orange

      Check protein levels at the doctors

      When a painfull attack comes lie down work on breathing slow and deep bresths small sips of water

      Carry a care plan with instuctions advising people what to do and contact numbers

      Stress is a huge trigger

      I hope some of this helps

    • effie_gee
      effie_gee sanddancer

      Posted

      Agree 100% 5 years on from your post and nothing has changed, they're trying to fit we square pegs into their round holes. I thought I'd left migraines behind when I was 59, 10 years on and something else is happening. Not the migraines  I knew and 'loved' but something weird, now I see the sharp needles/ice pick descriptions, came across this by chnace today. This is what I've had for 3 days, sporadic, right eye than left eye, then both,  then yesterday 2 full blown old style migraines with aura, one after the other. My recent -ish big scare last Sept was a stroke so of course I worry, Sorry for all of us x

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