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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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  • loobyloobylou
    loobyloobylou sanddancer

    Posted

    I'm so pleased to find this thread. I've been having hemiplegic migraines for three years now and they're awful. My symptoms have been getting progressively worse with each attack: I start with visual aura where I have light speckles and then lose vision (half of people's faces just vanish and I have major blind spot spots), weakness and numbness down my lhs, numbness all around my nose, lips and tongue and I start banging into things and have a list to the left. I've also started to get very confused - I'll look at common words and they mean nothing to me even though I know they should. My words come out garbled or like spoonerisms and I get really frustrated that I'm grasping for words that I can't think of. But I don't get a headache so I know how lucky I am for that. Triggers seem to be if I get dazzled by bright light or if I've had a disturbed night.

    i now realise that I can tell when one is coming on as for a couple of days before the visual aura I'll not be able to concentrate on long documents, can't focus on tasks and just can't seem to think. I also get a bit giddy and hyper! These symptoms (and exhaustion) then follow for at least a week after an attack. It makes it hard to function at work and keep up with a young family.

    Anyway, my last attack was the worst yet and lasted with all of the symptoms for three weeks straight. My gp said the migraine had got stuck in a cycle and it was now time to move to preventative medication. I started with Pizotifen and it did kick me out of the migraine but I had to take a week off work to get used to it as the first few days were hard. I felt drunk and very drugged, I was lurching about and there was no way I could drive for four days. I was also extremely tired and pretty much fit for nothing. But then it settled down and although I got sporadic symptoms I didn't have a full attack. I'd get periodic numb fingers and feet, numbness and pins and needles around my mouth and a loss of dexterity. I keep dropping pegs and pens.

    i had a follow up with my gp yesterday after two months and i've been advised to continue for four months to see how it goes. But today I've been feeling really strange - quite numb and clumsy hands, I feel like I'm spaced out and have lost my balance. I also feel overwhelmingly tired. I haven't started with my migraine aura but it feels like it could happen.

    sorry for the ramble, but it's such a relief to find people who understand. I don't want to be on medication long term, but the Side effects  are still better than an attack. I'm just perplexed that my gp doesn't seem to think I should have further tests or find out why these have started. I had a neck injury a few years ago and I wonder if that has something to do with it.

     

    • margo19504
      margo19504 loobyloobylou

      Posted

      Hello Loobyloobylou,

      I have suffered with HM for 24 years  and wasn't diagnosed until 4 yrs ago. My sypmtoms are similar to yours except I don't get any warning before the aura  begins...... the aura is  when I know I'm going to have a full blown  attack with paralysis down my left side ,my hand  curling and going into  a claw, severe headache lasting  6 hours and I have to be in a darkened  room with no noise.. Although tested for  strokes and everything  else in the hospitals where I was rushed to  the first few times, nothing could be found  and I was sent home and told to take  massive doses of Disprin Direct  when the attacks started.  Although very frightening at first, I  soon realised the attacks were reversible and were more alarming for friends who were with me. My  young family  of 4 kids just took it in their stride and knew what to do.  HM changed my life. Most of my  triggers were  bright  and /or flashing light based: fluorescent lights, strobes, headlights,  TV commercials ,computer screens , shopping centres etc Over time these were all avoided and I always wore  a hat with a large brim and dark  glasses when out because I never knew if I would encounter a trigger. I still see a physiotherapist who specialises  in cranial problems and in the early days I saw her every week to control the headaches I lived with 24/7.

      In hindsight I think I was  a little lucky not to be diagnosed as I wasn't a guinea pig for the medical profession who it still appears know very little of this insidious condition...... I had to work out my triggers by trial and error. If I didn't listen to my body, I would have an attack. I  have lived a very active life within my boundaries  and was fortunate that I ran my own business. I woke up with this  condition after having a successful??? brain tumour operation.  To find a label 4 years ago was such a relief and recently finding this forum  has helped me knowing that I am not alone.

      My advice: listen to your body and avoid your triggers..... it's  really hard  changing your lifestyle, domestic environment and saying "no." It definitely impacted on my children but as adults they all think it made them stronger, more self reliant and  accepting of adversity. Only my family and close friends have known of my HM.... others  just think I am eccentric. 

    • yvonne19574
      yvonne19574 loobyloobylou

      Posted

      Hi Loobyloobylou,

      I used to sing that to Andy Pandys Watch with Mother Hour when I was Little what a Lovely name.Im concerned your having what sounds like continued Hms symptoms that can hang on for several days .May I suggest you ask for a referral to see a consultant neurologist as the drug your using is not working properly and you don't have to put up with such 

      side effects especially not for another few months.You have every right to ask your GP their knowledge is limited and a good doctor would admit to that .You need a proper diagnosis of what type of migraine you have and the correct drugs appropriate to it.You can apply to consultants direct but it costs not as much as you would think but worth it if it's controlling your life and impacting your daily life.Some neurologists work for the NHS only

      lOok up your nearest main hospital or teaching hospital because they normally have very qualified neurologists.Pitzotofen is a drug that for many has very limited effect and the side effects can be nasty don't put up with any med that causes you more problems , your symptoms seem to be developing not going away.Keep a diary note your symptoms note your triggers grade your pain and spasms of strange symptoms, then seek

      professional advice.Its your life and there are better meds out there mor effective but only try them when you've seen someone who really knows what the proper diagnosis is.The Migraine trust and Migraine are forums and providers of information.The UCL , queens street in London Neurology and Neurosurgery have several top neurologists .You can look these up on the website.You have the right to ask for referral or do it yourself, one opinion from one GP I would advice is not the best for knowledge or understanding of the illness.No matter how how interesting the history book is if it's information and knowledge is out of date then your reliant on insufficient knowledge.I started with migraines with aura

      when I was 15' my docs gave me Pitzotofen it didn't work I was so fed up of being palmed off with useless drugs from gps I went onto shop counter drugs.Years later things were deteriorating fast and in 2006 having tolerated blinding migraines I had the most severe attack.The Jr treat me for a stroke until a severe migraine was diagnosed .I was totally incapacitated read one of my old letters for further info, but it took me three years of searching with doctors and a neurologists help to find the specialist at the UCL who knew what it was and started me of treatments.

      I now see Dr Paul Shanahan there are other specialist around the country whose are in a forum and continually researching and collating information from each other .It is an on going process , not a fixed one off solution certainly not with Pizotofen .basically don't give up its your body your life and you have the right to get the most professional assessment and diagnosis .Dont give up at first base. Seek professional advice Gps have limited training and the mims is used like a daily thesaurus .

      Ive had really good doctors who have worked with my consultant from 2008 onward.They admit they don't have the knowledge and are very helpful and accept what the consultant advices they work with them.

      I waited until breaking point I suffered for years before having a major life changing attack .I was having Hm since the 1970's I wasn't diagnosed properly and started receiving professional care until 2008'By then my life has been totally affected , losing my job, unable to pay my mortgage, loosing a home, so called friends , but I have a marvellous family and now a good husband who support me and understand what's going on.Im not cured and now having Botox but it is helping the pain.nOt the hemeplegia which I believe you are experiencing .The best GPS admit their limited knowledge and want you helped by those who really know the subject.

      Please think again, Take your trusted friend or family member with you when you ask the doctor for a referral they can support you.

      This site is really supportive , Keep in touch and don't give up, you deserve a better daily life , you only have one on this planet! Good luck

      Yvonne

    • loobyloobylou
      loobyloobylou yvonne19574

      Posted

      Thank you so much for your reply, it's really helpful and much appreciated. I know from reading people's stories that I'm very lucky compared to them but i thought that if everyone says how their symptoms affect them it can only be helpful for all in the long run, particularly as relates to certain drugs.

      I'll definitely take your advice about the referral and the diary, thank you. I did initially feel better on pizotifen but have felt pretty rubbish the last few days with what i call 'spangly eyes' and I've struggled to think and have been getting muddled. I'll look into the neurologists and see what i can arrange.

      I was a bit concerned that my gp is still advising that i take triptans if an attack kicks in, i thought they were contra indicated for HM?

      Anyway, thanks for the support and good luck with your situation.

    • yvonne19574
      yvonne19574 loobyloobylou

      Posted

      Hi Loobyloobylou,

      Glad to be of help, yes you are right  Triptans should not be given to HM sufferers it can actually make them worse,If you are really worried ring The UCL hospital in London there are several top consultants there you can get referred to for an initial proper professional assessment by those who really know what their doing, their research is ongoing world wide studies collated together.

      Ps research the triptan your on regarding HM note down your daily experiences and side effects then you are prepared and on your way to the better and safer meds and treatment you are entitled to get.gOod Luck again.

      yVonne

       

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  • angela10718
    angela10718 sanddancer

    Posted

    Hi I just thought I would drop you a line my symptoms are very similar but no way as bad as others seem to suffer but still frightening at the time , my doctor did say if I didn't respond he would refer me but luckily for me I have since being on amitriptyline 25 mg I have very few episodes so maybe you should ask to be referred . Good luck 
  • Dubiousricardo
    Dubiousricardo sanddancer

    Posted

    Hi Sanddancer, hope you are coping OK.

    I have just seen this forum. I was diagnosed with Hemiplegic Migraine in October 2008 at the age of 44.

    I have been on Amitriptyline since diagnosis. Firstly 25mg a day then 50mg in the last couple of years. Although my occurances have been nothing compared with yours, and I have only had 2 episodes, mine have only been brought about due to trauma/shock to the body.

    Hang in there Sanddancer and keep us posted! This is a pretty exclusive club we belong to and would love to keep in touch.

  • pulkit
    pulkit sanddancer

    Posted

    hi guys i read ur all conversation i feel bad and proud to all of us who strugle for their life.

    I was diagnose with hemiplegic migrane 2 year back.Firstly i think it is just a short term problem but day by day i got stroke and my will power gonna decrese.now i feel like some stop this becuse i have 8 stroke per month and it make me very bad. i am student my academics was totaly lost i cant concentrate and i become intovert. and i dont know how to deal with it .....seriously guys if u have something like technique to make stable please suggest....... 

    • yvonne19574
      yvonne19574 pulkit

      Posted

      Hi Pulkit,

      Im so sorry your having such a rough time of it right now, when I had my first really bad attack in2006 the doctors treat me for a stroke.iT affected my balance I couldn't walk, talk properly, write anything because I couldn't remember how to spell or how to form the shapes of the letters like a b c .My memory was shot for several months , like you I had to stop studying and working .I couldn't even speak a simple sentence.Now I'm improving gradually my memory is improving slowly and I can write and remember words on good days on bad days I'm paralysed, unable to speak properly. Remember words or sentences  or be able to write.Now my short term memory is being affected but my family make a joke of it so we all smile and play guessing games.I hope you have a good neurologist and Gp if not ask to be referred to a specialist Neurologist.tHats the first important step.

      Eat healthy food, don't smoke or drink alcohol (sorry) drink plenty of water

      and keep gently exercising when you can (walking) with a stick aid just in case your took I'll.Always have a mobile and friend to contact .Have your number and your gPs or friends number in tape written on the back.

      Have a note or letter in your wallet to state your condition and meds together with contact of your doctor or consultant .I aways carry a copy of my consultants letter of diagnosis and current medication.

      i also wear a bracelet (medical sign on it) which has engraved on it my condition and my contact persons number. Men can get dog tags or men's arm bracelets .Doctors recommend them for Hm sufferers.

      Keep a short diary and note what drugs your taking every day.Put your pain score and symptoms down each time you have an attack after your recovering.There are no easy fixes but neurologist specialists can really help you.Have a friend or family member go with you when you visit the doctors or consultants. Right down a list of questions you want to ask.

      Ask for a referral to a consultant specialist if you have not got one.

      Keep in touch with this site members.Im sure others will try to help and support you.Good Luck .Remember you are not alone .We are all searching for meds and methods that help .Chat soon.Yvonne

  • liz06040
    liz06040 sanddancer

    Posted

    Hi Sanddancer and everyone following these blogs.  I think it would be a good idea if everyone kept a diary of all food intake.  I am studying some information about how different foods affect the brain and I have a doctor friend who is also interested in this as she is doing psychiatry and it is well known that some toxins cause e.g. paranoia or depression and other mental illnesses.  The document I am looking into suggests that good bacteria in the gut maintains a healthy brain.  I really dont want to go on suffering these migraines so I am looking at how this can change my life.  The other information I am looking into whioch runs alongside this, is something I found in a magazine which suggests that diabetes and other related illness can be eradicated by substantial ways in changing eating habits, e.g. not having breakfast until having taken some form of exercise which can be anything from walking/running or doing the daily housework.  It also mentions drinking a glass or two of water at a time rather than taking sips. 

    I have stopped almost all my other health medications and have actually improved in that my feet no longer swell up by the end of the day, and I no longer have regular bouts of diarrhoea. 

    Please bear with me on all this studying I am doing adn if you are interested in making changes, keep a diary of what you eat and drink and we can compare and hopefully find common ground.

    Thanks and best wishes.

     

    • margo19504
      margo19504 liz06040

      Posted

       Great ideas Liz.  I have been doing the food diary for about 10 years  but haven't  tried  changed my eating habits. The other thing that I think is super important is finding out your triggers..... and sharing with others how you have avoided attacks. I couldn't use a computer  because it would trigger an attack but now  I have an Apple computer with Universal  Access preferences. (for the handicapped). It allows my screen to print white on black and I have through trial and error found the best  screen saver. For me it is a plain very dark green.(a pink on a normal screen)  and with the  lowest light emission.  

      Hope that helps others because computers are essential tools these days. 

      I am interested to know what sort of food you now eat.

      Best wishes, Margo

    • liz06040
      liz06040 margo19504

      Posted

      Hi Margo

      Apparently cereals are not such a great idea- I have virtually cut these out. I also do not eat carbs with protein. I use lacto-free milk and dairy products. I am still in the early days of diet change and I find it difficult watching TV, listening to loud music etc and can no longer enjoy reading + have limited use of computer as this is definitely contributing to my migraines. I will look into changing my settings following your blog and let you know how I get on with this. I will also blog anything I find in relation to digestive/brain relative issues. Regards. Liz x

    • margo19504
      margo19504 liz06040

      Posted

      Hi Liz,

      Like you I eat very little cereal and corn or rye when I do.  However I eat a  large serving of whole grain rice every day. I eat largely  a "Japanese" diet: fermented foods like soya milk, tofu, miso paste and seaweeds  like wakame, nori and hijiki. I  haven't eaten meat since I was a child but eat fish daily  and eat an avocado and pickleded ginger most days. I never eat fried foods  or drink soft drinks preferring to eat  and taste my fruit whole. For a treat l eat black chocolate and I savour my one small glass of wine with dinner. Eating a large meal at night affects me but it is so hard  when dining with friends.  I have loved cheese but  sadly,  that is  no more, although I still eat yoghurt.  Fortunately, I love vegetables  Daily  exercise is very important  to me and because of light  and heat issues do it  in the  late afternoon........ it actually makes me feel better and stronger.

      I cannot take medication  except asprin as the side  effects are so horrendous  but about 6 weeks ago started taking Magnesium, B2 and CoQ10 in very high doses.. It is early days but I feel somehow "better" in my head as if my central nervous system is  stronger.... hard to describe.

      I will keep you posted on my progress. Regards, Margo x

       

    • Emmam90
      Emmam90 liz06040

      Posted

      It's so wonderful that you are seeing that food is medicine, it's crazy really that we go to the docs and all we are givin is a small chemical pill with huge side effects when what we put in our mouths in terms of food is actually our medicine and will determine how healthy our body is.

      I had been suffering HM since I can remember and once I got married I realised how bad my fatigue was, hanging out washing then needing to lay down from exhaustion, doctor found nothing but once I went and saw a naturopath they were able to tell me that I was anaemic, my cellular level was in the poor zone , b12 deficient and deficient in all my basic minerals needed for basic fuction, fatty liver and was fighting a virus, all this from one visit, they studied my blood right in front of me and were able to talk me through. ( hems view test)

      Was so upset as every doctor just threw a prescription for Orion mess at me which gave me no relief.

      I realise that our diet is by fare the means of all healing and recommend everybody go find a naturopath for a consultation, was a life changer for me. Naturopaths are not crazy new age ppl, well not all anyways so go check it out. Am on the mend from these debilitating migraines due to lifestyle changes, NOT INGESTING CHEMICALS!!! Lotsa love!! Em. Dido

  • krisitn20713
    krisitn20713 sanddancer

    Posted

    Dear Friends,

    Hang in there! I had most all of these things and more a year ago. I cured myself using lifestyle changes and detox . I realize everyone is different and nneds different treatments but I thought I'd post what worked for me. Couldn't read on the computer back then, so it was slow going. I posted on an earlier thread some of the things that I did.

    Let me know if you want me to post it here again. Had a slight rlapse yesterday, a few hours of migraine. ( after a chocolate, bread, and corn cereal binge) But over it now and none of the horrible HEMI symptoms that I had before. It is possible to recover, a lot of work, but possible. Hang in, I remember how awful it was. oxox

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