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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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  • LouF
    LouF

    Posted

    Hi all,

    My heart goes out to everyone suffering with hemiplegic migraine. I myself am not a sufferer, but am diagnoses with "atypical migraine" (a diagnosis that was forced upon me after 7 years of tests) from which I experience many of the symptoms you describe.

    Since the age of 15 I have been suffering from severe head pain, visual loss/disturbance (mainly in my right eye, but sometimes both), absences like those seen in absence epilepsy, severe dizziness and loss of feeling/pins and needles down my right hand side. Obviously for the purposes of the forum I have not included masses of information but I could go on!

    These symptoms have left every doctor I have seen at a loss and I was just wondering if anyone knows how well known hemiplegic migraine is by neurologists in the UK? I hate internet self diagnosis but based on The Migraine Trust's information on hemiplegic migraine I tick a lot of the boxes and at this stage - I'm sure you can - understand it'd be great to have a name to put with the symptoms.

    • StevenRose
      StevenRose LouF

      Posted

      Hi Lou,

      It sounds like a typical Hemaplegic Migraine to me and symtoms so similar to mine.

      I will tell you what worked for me and that is Botox, Flunarizine and destress if you have a lot in your life.

      I get admitted to hospital every time it strikes. thankfully not since January.

      You said you didnt want to go on for the purpose of this forum, but you really should, get things off your chest, have a real rant and rave, this will all help to make you feel better.

      Take care and come on any time you like, but do let is know how you get on.

    • claire96524
      claire96524 StevenRose

      Posted

      Hi can i ask in what form do you take botox

      I keep seeing that people have success on it thankyou

    • StevenRose
      StevenRose claire96524

      Posted

      They do it in London at the national neurological hospital.  They give me about 14 injections in the head neck and shoulders.

      If you can get a referal to London they are headache specialists there and they dont look at you as if you are stupid as I know some drs do.

    • stella85521
      stella85521 StevenRose

      Posted

      I also have chronic symptoms whereby I have migraines for 24/7 which are so debilitating that I cannot function and also feel like as a previous writer wanting to tear my skull apart. I have tried a number of treatments recommended by my neurologist, I.e Botox which I found to be effective until the 9th cycle. Medication such as topiramate gabapentine failed to help. In December 2016 I received a new treatment called IV DHE which incurs a 5 day hospital stay with infusions every 6 hours. Anti sickness meds are given an hour before the IV. Gabapentine was changed to Epilum and triptans also prescribed. Since then I still have a migraine everyday however the severity was decreased. This has lasted for 6 months. I am due to see my neurologist shortly to discuss whether I can have the treatment again. For me this really worked
    • karen27167
      karen27167 StevenRose

      Posted

      Hi there.

      Can I just ask . Having received communication from Dr Matharu it all seems to relate to head pain but my daughter doesn't get head pain just frequent episodes of stroke symptoms. I hope i am seeing the right man!! It is Hemiphlegic Migraine but without headaches. What do you think?

    • StevenRose
      StevenRose karen27167

      Posted

      Hi Karen,

      Its absolutely fine as I get the same issues as your daughter.  You can get HM with or without pain or aurora.

      He WILL give your daighter the best treatment I assure you,

      Him and his team are marvelous!

      How has your daughter been?

      Best wishes to you and your daughter

    • karen27167
      karen27167 LouF

      Posted

      Hi There

      I had to reply to this as my daughter has suffered terribly with HM for the last 4 years. I my self started with these symtoms about 30 years ago and was diagnosed with MS/? Positive MRI but negative lumber pucture. After all these years and still the same symptoms (similar to yourself) I had another MRI after a suspected relapse and the white patches on the brain were said to be acute migraine clusters!! I am at a loss as to why I am still suffering from leg and arm weakness, vision problems, cognative response problems and other neurological problems but as my daughter is now suffering from HM it is thought that I too have been suffering from HM. Not enough research o this illness and GPs and consultants simply do not have a clue what to do about it. Hope you find a solution.

  • sjm16
    sjm16

    Posted

    Hi all.

    I was discharged from hospital yesterday after an 8 day stay.

    I showed all the symptoms of a stroke.

    Thunderbolt pain in the left side of head, disturbed vision, tingling in right arm and weakness in right leg, feeling very dizzy and sick. Having the words I wanted to speak but could not get them out slurred speech. It was such a strange feeling.. like an out of body experience.

    After 20 mins my speech returned muddled and slow. Pain behind left eye and could not bear lights.

    At hospital I had blood tests and CT scan before being moved to ward. Went on to have a lumber puncture, MIR and CT scan with dyes to look at vessels. All the tests results came back negative. I was kept in for 8 days. I still have memory problems,weakness in right leg.

    I have been told it was possibly hemiplegic migraine.

    Had a similar episode 12 years ago.

    I have been told there are meds i can have for migraines but they do not want to give me them as I have only had 2 attacks over 12 years. I need to visit my Gp for a referral back to hospital if I have any more migraines at all and then GO can prescribe migraine tablets.

    Help is there anything anyone would recommend I do, avoid etc.

    I am going to Keep a daily diary of food, exercise, stress levels, amount of sleep etc to look if there are any triggers.

    Many Thanks in advance

    Sarah

  • sjm16
    sjm16

    Posted

    Hi all.

    I was discharged from hospital yesterday after an 8 day stay.

    I showed all the symptoms of a stroke.

    Thunderbolt pain in the left side of head, disturbed vision, tingling in right arm and weakness in right leg, feeling very dizzy and sick. Having the words I wanted to speak but could not get them out slurred speech. It was such a strange feeling.. like an out of body experience.

    After 20 mins my speech returned muddled and slow. Pain behind left eye and could not bear lights.

    At hospital I had blood tests and CT scan before being moved to ward. Went on to have a lumber puncture, MIR and CT scan with dyes to look at vessels. All the tests results came back negative. I was kept in for 8 days. I still have memory problems,weakness in right leg.

    I have been told it was possibly hemiplegic migraine.

    Had a similar episode 12 years ago.

    I have been told there are meds i can have for migraines but they do not want to give me them as I have only had 2 attacks over 12 years. I need to visit my Gp for a referral back to hospital if I have any more migraines at all and then GO can prescribe migraine tablets.

    Help is there anything anyone would recommend I do, avoid etc.

    I am going to Keep a daily diary of food, exercise, stress levels, amount of sleep etc to look if there are any triggers.

    Many Thanks in advance

    Sarah

    • Lissybabe
      Lissybabe sjm16

      Posted

      You really have to see a migraine specialist for them to have a clue. Mine is a D.O. (doctor of osteopathy), like an MD only more into alternative treatments. From what you say it sounds like there are two documented episodes that sent you for help. I have to wonder though, if perhaps you had some milder symptoms in between that you just kept pushing through. (We do those things, you know!). I would think about the times in the past...perhaps trouble seeing road signs but thought your eyes were just tired, got bad headaches, but thought well everyone gets bad headaches, seeing flashes out of the corner of your eye, and thinking you imagined it. If you remember anything, make sure to tell the Dr. so it can be documented. One more word of caution: HM sufferers are at higher risk of stroke, so it's not recommended that HMer's take triptans or ergotamines. This poses a problem. What's left is epilepsy or blood pressure meds for prevention, and narcotics or other pain killers. Also be careful with the exercise. It can also be a trigger. Best of luck to you!
  • Cat_Pagan
    Cat_Pagan

    Posted

    Hi everyone! I have just recently been "diagnosed" with HM but I've been suffering from them for years! I've had migraines since I was in college but they faded away for a while but after having my first son in 2002, they came back with a vengeance and has never left! Over the past 11 years, they've gotten progressively worse. In 2008, I started passing out, having left sided numbness/ paralysis, slurred speech and vision loss, among other things. I was admitted into the Hospitals at the University of Missouri. I was there for over a week. They did blood tests, MRI's, CAT scans, lumbar punctures and constant observation. By the end of my stay, I was told by their head Neurologist that I had MS. Although nothing was affirmative with the LP, they did find 3 lesions on my brain that, they thought, were due to the disease. So for the next 2 - 3 years all of my symptoms were chalked up to MS and I was regularly going to the hospital for treatments of steroids. These treatments rarely worked but it was protocol for someone with MS, so they just continued. My, then husband, was in the military and we were transferred from MO to GA in 2011. When I starting seeing those doctors for continued care, they wanted to do their own testing. I was re-admitted into the hospital but this time the doctor's told me that they saw no affirmative reasons why I would have been diagnosed with MS and that, in fact, everything I was going through was ALL IN MY HEAD!!! I was LIVID!! All the pain and agony I had been going through and they had the nerve to tell me it was all in my head! Little did they know how right they were! Once my husband and I divorced, I moved back to my home state, NC, and started seeing a Neurologist in Raleigh. I explained to her all the things I continued to go through and she wanted to get testing done through HER facility and come up with a diagnosis based on what SHE saw; not what she read in my medical file. So, back to square one, the testing started all over again. After months of testing and hospitalizations, she told me that I did NOT have MS. She confirmed that I DO have lesions but not MS. She also stated that I was severely anemic. I had to have 2 blood transfusions within 12 months and spent several days, in and out, of the hospital due to the continued symptoms. Through my description of and her witnessing my symptoms, she stated that she thought I had a very rare type of migraines. A type that mimic stroke symptom and is often mis-diagnosed as MS. This is when I first heard of HM. I am going through different mixtures of medications to get my symptoms under control. As of right now, I still have 2-4 migraines a month. During them, I can't talk (slurred speech), my muscles in my left arm and left contract and/or go numb and I can't walk. I frequently pass out and most times, get injured in the fall. It's difficult for me to drive because my eyes are so sensitive to light. I am really tired of living this way. I'm thankful for the diagnosis but it was really disheartening to hear there was no cure. I am glad to hear there are others out there that know what it's like to feel like this. One of the lowest times in my life was when they doctor's thought this was all in my head because THEY didn't know what it was. Just because it isn't CLEARLY visible to the eye doesn't mean it's not real.
  • ryan62313
    ryan62313

    Posted

    I don't usually reply to any of these forums, but I've read over several of your stories, and decided to tell you all mine:

    I am NOT a doctor, my story is not a proven template on HM, I haven't even formally been diagnosed, however my symptoms fit the HM profile (left side weakness, brain fog, trouble speaking, walking, all while experiencing aura, lasting for 3 days, then pain in various part of my head, but only for a few min after the weakness leaves). I've been dealing with this for at least 25 yrs, It got progressively worse and more frequent over time. The Docs decided I was bipolar when I was 23 (am 35 now) and tried me on every bipolar med in the book it seems; this diagnosis caused the docs not to listen to any of my health complaints, and would chastise me for debating their opinion on the matter. Couldn't ho;d a job, couldn't get disability. Last year, a friend of the family asked his father, a retired pathologist to look at my case, and after seeing my long list of oddball symptoms, replied that it was likely a migraine caused by celiac disorder. It took me 4 months to come to terms that this was a possibility, tried the diet, added vitamin d, and a copious amount of spinach to my diet, and have been symptom-free for 3 months now. I won't speculate on what the full daisy chain of problems was to explain why this would work, but its worth trying the gluten free diet for 3-4 months (tell you doc first) just to see. I doubted it like crazy, as I like my pizza and sandwiches like anybody else, But the proof is in the pudding, as they say.

    Just wanted to let you all know that these sorts of migraines can be prevented, but it can be hard to find the source of the problem. Just keep on digging. Sometimes the most complicated problems have the easiest, simplest solutions.

  • zoma777
    zoma777

    Posted

    Hemiplegic Migraine is extremely rare which is why it is so hard to diagnose (.003% of the population). The symptoms mimic many other diseases - stroke, MS and if you also have basilar migraines (which it turns out most hemiplegic sufferers do) then you may present as if you have meningitis.

    I've been Vegan tried many dietary and other alternative type medicines - while I found some relief with these things it didn't cure my problem and if anything it got worse as I got older. I noticed a pattern here on the thread - I'm not the only one who got worse after having a child. There is some connection with hormones and this disease. More women suffer from migraines than men. It's interesting to note that for so many women the disease got much worse after having a baby. I know for me it was a thousand times worse than before I had my child and before her it was no picnic.

    Unfortunately very few doctors seem to know how to treat us. The best doctors I have found are those who listen and have been willing to work with me.

    This is a debilitating disease. I don't understand how a person was diagnosed with bipolar disorder if they had this disease. The two diseases have nothing in common. You must have gotten a terrible doctor! Also celiac's is very different. My best friend has that disease. She did have debilitating headaches that were from a nerve in her head that lost it's coating but it was a separate issue from her diagnoses of celliac's unless perhaps there is some unknown connection. It might be something to check out. She had a CT scan and other scans of her head before they figured this out. It is something to really be on watch for as she is the 3rd person I have known to have serious issues of the brain that were not found. My father in law who just passed had a brain bleed which should have been caught 2 years earlier but wasn't because no one ordered an MRI. Another woman I know had a terminal brain tumor that wasn't found until it was too late to be removed. YOU HAVE TO BE PROACTIVE! So don't just let doctors walk all over you here. If you are having the symptoms of hemiplegic migraine you HAVE TO GET TREATMENT and RULE OUT EVERYTHING ELSE FIRST!

    The only way I was diagnosed was because I presented while in a hospital setting. I had gone undiagnosed with that particular form for most of my life. I also have seizures under extreme conditions which can happen with this disease - it is called a "sister disease" to epilepsy, actually all migraine disease has been found to be related. The genetic mutation is very similar. In order to be properly diagnosed you also have to have an MRI to rule out MS.

    If you have hemiplegic migraine you are at a risk of coma and a higher risk of stroke.

  • andrew94167
    andrew94167

    Posted

    Hi I sympathize with you all I was diagnosed with hemiplegic migraine a while back I had been getting some

    Headaches and collapsed this led to me being in hospital for 2half weeks I couldn't move all my right side I was blind in my right eye ! . After loads of tests from scans to lumber punctures a specialist came and diagnosed me straight away . Since then I have been extremely ill benn back in hospital twice collapsed at home regular plus I have spinabifida occulta which causes me extreme pain and discomfort . I even collapsed in the bath and had to be got out off my 15 yr old child it is awfull . I have worked all my life !! 20yrs never claimed but now I can't walk far do anything stressful I have give up driving cause what if I black out and killed someone I would never forgive myself . I have put a claim in for d l a and am worried I won't get anything and how ill I am . I have lost so much . I am on lots of meds morphine for pain gabapentin and 900asprin 3times a day

    I just seem to have no help advice and the worry about money it is so upsetting .

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