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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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  • Sunnysky
    Sunnysky sanddancer

    Posted

    Hello,

    I was just wondering, does anyone experience sleep paralysis? As I have had a few episodes of this in my sleep, and was wondering if it was related to hempligic migraine? I used to think I was just dreaming, until someone told me about it and it wasn't until I read into it, that I realised that was what I was experiencing. As that is some form of paralysis I didn't know if it was related to hempligic migraine at all?

    Many thanks, to anyone that replies

    Sunnysky X

  • lyndsey16581
    lyndsey16581 sanddancer

    Posted

    Hi all!

    I am so glad I read through this thread! I actually thought I was alone with this type of migraine, after seeing several neurologists I have only ever been given amitriptyline which I cant take as they just knock me out!

    What other medication have people been given? And has anyone ever had any problems with holding a driving licence? I only ask as my dad suffers the same and the DVLA took his licence for a while, therefore I am terrified of going back to a doctor in case they take mine sad

    • StevenRose
      StevenRose lyndsey16581

      Posted

      Hi Lyndsey,

      The meds I take for HM is Flunarizine and I have Botox.  This combo for me has been amazing and life changing, but also destressing my life too, as this is a contributary factor in HM.  I get admitted to hosp every time as they think its a stroke, because I barely talk when I get it, but thankfully since Jan I have not had an attack.  I still have my driving licence at the moment.

      Good luck Lyndsey, let us know how you get on.

      Take care and best wishes

  • Temple
    Temple sanddancer

    Posted

    Thanks for the information in er now with daughter trying to figure out what is going on with her. She has had 4 attacks in the past 2 months and can not find an answer. I will run this by them.
  • lmac15
    lmac15 sanddancer

    Posted

    Hi everyone xx

    I sit here typing this whilst not being able to talk or move my right arm and leg. I've suffered with hemiplegic migraine for about 8 years now. I was diagnosed aged 18 after months of investigations and tests. Having ruled out ms, strokes and a brain tumor (that was a fun weekend! Not) a neurologist finally put a name to what I had. I've had 13 lumbar punctures, which has left me with structural damage in my spine. I have been taking amiltryptiline for the last few years and it was quite successful in keeping them at bay, however I have had 2 attacks in the last week and I'm looking to research other forms of treatment. I'm going to look into botox injections and speak to my Dr. This bloody awful condition is so debilitating but I refuse to let it beat me. I have to believe things will get better xx nice to hear from everyone xx

    • StevenRose
      StevenRose lmac15

      Posted

      Hi,

      Well I can only agree with you as I suffer from HM too and it always puts me in hospital, mainly because the symptoms are so simialr to a stroke, my GP always says, you dont know if it is or not, so always call for an ambualnce.

      I take Flunarizine and I have Botox too, which have been amazing for me and certainly reduced the frequency a lot.  I havent had an attack since January.

      Good luck and trust me, always best to go to hospital when you get these attacks,

      Best wishes and take care

  • ADAMH
    ADAMH sanddancer

    Posted

    I first had my first HM when I was 17. I was playing High School baseball. My hand went numb. I had no clue what was happening. I then had Aura. This had never happened. I told my parents what happened and they said well you probably just got a migraine and you will be fine. Well I wasn’t. They continued. Every month. My friends would always joke and say you always have headaches. Fast forward to about 6 years later when I went to a Neurologist who did MRI's, CT scans and could find nothing wrong. He had no clue what my symptoms were. He said well I’m going to give you Imitrex. Which is one of the worst things for HM. That didn’t do anything. I was prescribed 3 other medications. All Beta blockers, nothing helped. Well I moved from Arizona to Idaho 6 years ago. I met with my Family Dr. I explained my symptoms and he said that is HM. I said are you sure. Because I had looked this up on internet and self-diagnosed myself.  He said yes. I am going to put you on Topamax. (Dopamax) HAHA. Well I was on that for about 2 years. I started to get really foggy. I was starting to forget things. I was starting to fail at work. I wasn’t sure what was really going on until I researched what Topamax can do. So I came off of them. Side effects never went away. That was 4 years ago. Last June I was introduced to a Medical device from my father. Being a skeptic I never paid much attention to it. Fast forward to February of 2016. When I thought nothing could get worse it did. I was put in the hospital due to having 4 HM same day back to back. I have had 2 in one day multiple times before. But this was different. I had 4 all in the same day. Consecutive, I thought I was not going to make it. I was terrified. 33 years old wife and kid and I was going to be gone. So the Hospital gave me medication to go to sleep and when I awoke I had the worst headache ever. I stayed in bed for 2 days. I spoke with my father and I will never forget his words. " Son will you please let me help you?" So I had this device now and started to use it. Twice daily 8 minutes at a time. in the first 2 months I experienced 2 HM. However, symptoms had decreased by 50%. Since then I have had 2 more HM. Symptoms now are down 75%. To the point where I can actually still function. I can still work and still have everyday stuff happening. I know longer need to go to sleep and let them pass. So here I am, a sufferer of 14 years and going from at least 16-24 HM per year to 4 that have decreased symptoms in almost 8 months. I am just trying to introduce a device to the community that may be able to help our Community.

    • shanna69166
      shanna69166 ADAMH

      Posted

      What device is that? My husband is 42 and his HM are getting worse as well. We have 2 small children and I need my husband back. He just got Botox injections last week and he did good for 5 days (he was having them everyday) and then he had them for 2 days. We are going to the Mayo Clinic but I will take any information I can get.
    • StevenRose
      StevenRose shanna69166

      Posted

      Hi Shanna,

      Botox is good if you can press on with it.  But I would strongly suggest if you can get along to see my Dr, privately again if you can, he is at the national neurological hospital London and he is the country's leading consultant for headaches.

      If you want more info on that, just private message me and I will give you all the details.  I was having them every other week, now I didnt have one since January!

  • Bella72
    Bella72 sanddancer

    Posted

    Hi

    I had my first HM while out the other week i thought i had been suffering from an alergic reaction as it felt as if my tongue was swelling sore throat pressure around my ears. So i went to AE as normal tablets werent helping but the AE sent me to the Hospital GP saying my tongue wasnt swollen. After waiting for 2hrs the poor GP was shocked as he did checks realising i had symptoms of a stroke. I hadnt realised myself just how much i couldnt speak or move my face and became upset. I was sent back to AE and finally monitored for a stroke and sent for a C T scan. I was distressed at not being able to think clearly or speak realising my face had dropped on one side. Its so very hard when your shifted about from bed to bed and look reasonably normal but cant respond when a member of staff do finally speak to you. I was moved to a different hospital an left in another corner till given an ECG and finally a MIR what a scary experience for someone who hates inclosed spaces.

    Finally a AE nures came and told me i was being moved to the stroke ward! I was horrified as i couldnt communicate clearly and was wheeled away.

    There was some dispute with staff about where i was to be and i was treated unpleasently. The AE nurese came back and asked me if i was ok and i broke down hysterically. Makes me tearful just to write about this. I was placed in a small darkened ward with people unable to do anything for themselves solely dependant on these unpleasent people.

    The AE nures took me out into the day room and tried to reassure me and stayed till the head nures came to inform me a consultant would speak to me soon with my results.

    I was discharged HM! Over a few days the numbness lifted and i could speak smile and think for myself.

    My GP has been supportive and is sure its stress related. I didnt realise i had constant chest pain until i took the beater blockers. I dont feel myself yet as suffering symptoms of anxierty racing heart constantly hot and emotional.

    I know in comparison what ive experienced is mild to what i read here, but i didnt even believe them until i read about others experiences because it was just like a mild stroke.

    Im not sure if 80mg a day is helping me or not as i often still get the anxierty symptoms but not another HM but some numbness dizzyness pain down my arms as the blood races and my skin burns.

    I have to get this under control or i will not beable to work.

  • ruby62720
    ruby62720 sanddancer

    Posted

    Hi. As someone very recently diagnosed it would be great if you would give an update on how things treatment etc went for you after this post?
  • natalie80889
    natalie80889 sanddancer

    Posted

    Thank you for your post.

    I have been suffering with my symptoms for about a year had multiple mri test hospital visit. Doctors thought could been ms looked like l was having a stroke. My scan and tests where all clear.

    They have put it down to Aura migraines but l felt after research l am feeling my symptoms are more hemiplegic migraine.

    I get pressure in my head my face droops my hand clawing my right side has lost strength got memory loss and l notice my speech and eye pressure bad.

    They have me on propranolol 20mg.

    My symptoms are still happening

    • StevenRose
      StevenRose natalie80889

      Posted

      Hi Natalie,

      Some people, me included get relief from having Botox and taking Flunarizine.  I was having HM last year every other week, but this year, since having Botox, nothing since January.

      Your symptoms are very similar to mine and they admit me everytime because as you say, its like a stroke,

      Good luck Natalie, hope things improve for you soon.

      Take care and best wishes

    • natalie80889
      natalie80889 StevenRose

      Posted

      The neurologist diagnosed me with Aura migrains l was wondering if l had to get diagnosed with hemiplegic after researching my symptoms my regular doctor said she said it looks more hemiplegic.

      I just feel like am taking medicine and it's not working.

    • StevenRose
      StevenRose natalie80889

      Posted

      It certainly sounds like it to me.  But to have Botox its for all migranes so ask for it and if you can get Flunarizine also I am confident this will help you.  Good luck and let us know how you get on.

      Take care and best wishes

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