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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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  • eleanor89897
    eleanor89897 sanddancer

    Posted

    Hi message to April G - thank you so much for your message - feeling emotionally stronger today- thankfully just found out that triptans work somewhat for my daughter. 

    I have sent a big reply today that may be useful for some hm sufferers who have recently been diagnosed. That first year after finding out is so bad - I found out I could not play guitar anymore (my livlihood as a session player with a large music school ) it was very like losing a partner for me I got very depressed and it took me a long while to come to terms with the fact that my right arm was permanently becoming permanently weak. 

    It must have been so bad for you with the loss of your mum. I really feel for you. It will start to get better. Emotional shock is the worst trigger. Have you had any counselling ? Talking about it - and about the SHOCK of finding out  what hemiplegic migraine is - especially if you suffer stroke like symptoms during an episode- takes some time to get your head around. I wish I had discovered this forum much earlier! 

    There seems to be something wrong with the reply button, I could not send personal repies to you or to Constantinova and I hope you get to read my message 

    Love from Ella (Eleanor)

  • alannic1971
    alannic1971 sanddancer

    Posted

    Hi everyone, I too am new to this and wanted to share my experiences of HM. I was diagnosed with this in January 2015 and suffered around 25 episodes in a period of 3 months. As people have pointed out there are not many specialists that deal with HM's and I felt like nobody could help. A friend of my sons was staying with us when I had an attack and it scared him as he thought I was having a stroke. He contacted his Mum who works in the Medical Insurance business in the UK and she put me in touch with a specialist at the National Headache Centre in London. After visiting him in October 2015, he put a plan together for me to try different medication to what I was taking and be put forward for a sleep study.

    I recently did the sleep study and low and behold I suffer from sleep apnoea which is a common cause of migraines that can lead to HM's. It is caused by a lack of oxygen entering your brain and means that 9 times out of 10 I wake up with either a headache or migraine. I have been told that I will need to now start using a CPAP machine at night to ensure that I get the right amount of oxygen when I am sleeping. I was prescribed sleeping pills to aid my sleep to which they hoped I would wake up without headaches but they were still happening.

    I have been told that having sleep apnoea should reduce my HM's, lower my blood pressure and also stop me snoring, meaning my wife will be happy!

    As sanddancer has said, it is a debilitating condition but if you persevere and see the right person there is light at the end of the tunnel.

    I'llandow let you know how I get on with my machine when I get it.

  • claire96524
    claire96524 sanddancer

    Posted

    Hiya I know this is an old thread but hopefully seen as though there is little or no support people will still come on here

    My doctor has put me on anitriptaline only a small dose....does it make anyone else's weakness worse?

    Also a personal question but do ladies on here struggle even more before and during menstrual cycle?

    Thank you

    • eleanor89897
      eleanor89897 claire96524

      Posted

      hi there- I am just starting the menopause which seems to have increased the number of episodes, although I know this is not the same for every one , but yes, in general my HM has always been particularly strong just before a period. Within hours of the headache phase finally finishing I begin mensturation. I know it's personal, but it would be really interesting to find out how this is for others. 

      Oh, also in the summer, there will be times when I very suddenly become hemiplegic (this usually lasts a few days for me, unfortunately, but these are different) after a couple of hours, I go into a terrible migraine stage - and after another couple of hours thunder and lighntening start all around (we live in the Yorkshire Dales)  and then the rain pours down. My headache remains until the storm goes away - very odd- does any one else get this type of thing?

      love to all Eleanor

  • claire96524
    claire96524 sanddancer

    Posted

    Hiya I know this is an old thread but hopefully seen as though there is little or no support people will still come on here

    My doctor has put me on anitriptaline only a small dose....does it make anyone else's weakness worse?

    Also a personal question but do ladies on here struggle even more before and during menstrual cycle?

    Thank you

    Ps does anyone struggle with their breathing when they get really weak xx

  • krisitn20713
    krisitn20713 sanddancer

    Posted

    After sufffering from severe migraines for years I had my fist HE Migraine attack 2 yrs ago.  Had  most all of the symptoms and more that you all describe. I have fought my way back using mostly internet research ( that was REALLY difficult at first- had to reread things a milion times and even then  9 times out of ten I wouldnt remember the info...)still struggle with that.

    SO far ( knock on wood) i have not had another severe episode and have regained most of my functioning. I've written up in previous posts what I've done to recover. Had to change my life a lot...but it's been worth it. Will try to repost in case you missed it.

    ox kris

     

    • eleanor89897
      eleanor89897 krisitn20713

      Posted

      I totally understand- Kris (hope that is correct?)

      I have days when I have double vision and cannot read at all - and anything new, I have to make sure I am on the correct line by putting that line at the top of the screen and moving up each time, and/or using a magnifier. Now I have several magnifiers, one is on a big stand and has has it's own light- this helps with the reading problems although it is still very difficult - and remembering things after is really difficult. I have to take notes (I use voice software called dragon), but then sometime I have to read the notes! So it only makes the process longer- but I persevere. For general reading I am member of several audio book services, some of them are free (just look on the net and you will find them) and also audible which is around £100 for twenty odd credits. It sounds a lot, but there are many of the latest books and the quality of the recording is better usually- also you can send back a book if you don't like it (even if you've read it) and they don't charge you. Between the different services I have been able to listen to lots of books when I have been too ill to read.

      There are other things that help, but I'm really tired right now-

      Good luck- Eleanor

       

  • krisitn20713
    krisitn20713 sanddancer

    Posted

    And yes, Claire- my migraines were very connected to hormone issues- thyroid and parathyroid issues.
  • eleanor89897
    eleanor89897 sanddancer

    Posted

    HELP needed for another (new) forum user PACE 2013 - really HM ill in MICHIGAN - needs to find a doc who has experience of HM-

    or preferably a MIGRAINE SPECIALIST

    love to all Eleanorxxx

    • aprilg
      aprilg eleanor89897

      Posted

      There is a hm specialist in Michigan named Dr. Ricardo D. Borrego, MD.  I have never been to him personally. Just looked him up for you. 
    • eleanor89897
      eleanor89897 aprilg

      Posted

      Passed it on - really have to stop now- feeling v. Weird 
  • eleanor89897
    eleanor89897 sanddancer

    Posted

    I just found myself getting a little emotional - it has been a tough couple of weeks - finding out Sophia my daughter is also FHM. But I just thought I would let you all know that she did her first GCSE exam today and it went well, the next is Friday so she has a break.

    Thank you sanddancer for starting this forum- it is so supportive and useful. A real achievement. I hope you are OK - we don't seem to have heard from you for a while- 

    love to sanddancer and you all - good night 

    Eleanorxxx

    • aprilg
      aprilg eleanor89897

      Posted

      Just remember only take one minute at a time time (not one day just one minute). It makes things much easier that way. I am glad she did well. Hope she does just as well on the next one.  

      I, too, want to thank sanddancer for starting this forum and hope you are doing well.  Together we will all support each other and conquer this illness.  You are all amazing, caring, and wonderful people. 

  • debLark
    debLark sanddancer

    Posted

    Hi Sanddancer, firstly I empathise with you and all that  you suffer through. I am 35 years old and I too suffer with Hemeplegic Migraines. I usually experience paralysis on LHS, dizziness, vomitting, severe throbing headache on right, difficulty speaking and occasionally memory problems.  I had one of my worst attacks (just a few days after I had had another attack) in 2010 and was admitted to hospital and had CT and MRI scans. I too was put on Amitriptaline to try to control, which did reduce occurances of attacks but I didn't feel myself while on that medication. After a couple of months, I stopped taking the Amytriptaline and I started a new contraceptive pill called Cerazette. Since being on Cerazette, I have had maybe 1 attack a year / 1.5 years which is very manageable. I believe that hormone levels must influence my condition because one day I forgot to take my Cerazette pill and that night I woke up with a migraine. I now ensure to take the pill every single day at the very same time - I can't even remember the last time I've had an attack! The best of luck to you and all who have to deal with this horrible condition.
  • claire96524
    claire96524 sanddancer

    Posted

    Hiya I have been to Neuro today and he said iva got all the symptoms of hm but because I said all my left side will feels weak although fully useable he has said he's unsure....

    I thought It can leave a perment weakness?

    He has put me on topirmate has anyone tried this

    He thinks I also have cluster headaches too x

    • StevenRose
      StevenRose claire96524

      Posted

      Hi Claire,

      Good to get an update from you.

      If you have cluster headaches as well as HM then you join a group that is few in numbers according to my neuro.  I think you know about my HM and it comes and goes, but when it comes I am very weak and in stroke like symptoms, then with physio I gradually improve over a week.

      My experience of Topirimate was very bad I have to say and left me feeling suicidal, I hope it works better for you.  How did you get on with Flunarizine?

    • claire96524
      claire96524 StevenRose

      Posted

      Hi there I'm very nervous about trying anything as nothing has worked that have all made me I'll in some way

      I really wish I could talk to someone with out then looking at me like I'm making things up

      I took a list in today and he didnt let me read it out

      And because when I said my left side stays week for a good week or two after a big attack he just said it well that can't be right as it only lasts a max of 72 hours

      I'm very frustrated

      Hope u are well .?

    • StevenRose
      StevenRose claire96524

      Posted

      Claire I really understand what you are talking about when you say they look at you like you are making things up.  I sometimes get this when I am admitted to hospital with junior drs, then the senior one comes and knows what I am saying is true.

      Have you tried or willing to try Botox?  Its been a life saver for me, plus de stressing my life somewhat.  stress is as you probably know a major contributer to HM.

      I also cant praise the team in London enough that I see, they are all headache specialists and take me very seriously, plus I can email/phone anytime to talk about new symptoms.

      I have been free of HM since January now and its wonderful!

      Always here to listen and respond to your questions Claire.

      Good luck and take care

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