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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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  • TheMightyPerez
    TheMightyPerez sanddancer

    Posted

    Hey,

    I'm 23 and recently diagnosed with having suffered from Hemiplegic Migranes,

    I have had every possible test for every possible thing over the period of my life, from the age of 13, they thought i had a form of epilepsy, as i got older they thought it was a heart condition, but i have been lucky and the attacks come and go sparodically. The doctors always signed me of and said i was ok.

    When i hit 23, i was rushed to hospital with the symptons of a bad stroke, after being hospitalised for a couple days, the doctor came back and said it may be a "Hemicplegic Migrane" signed me off and that was it.

    During this time however i was applying for the armed forces (I am a key fitness enthusiast and this was my dream) and on my final medical (was very close to joining) the final doctor was in shock, he said you need to see your doctor, how has everyone missed you suffer from this! (as you can expect i can not join the forces)

    So i went to my GP, they were also in shock that no one had picked up on this throughout my life and they sent me away and had a full doctors meeting about me. Turns out i do suffer from them, i have my entire life! AWESOME! nice of someone to have told us, would have saved loads of tests.

    I get the severe numbness, pins and needless, slurred speech, terrible head pain,  ear ringing, bad short term memory loss, loss of words in sentences, naussea, Dizziness, ect ect (as do all of you)

    but i dont get them frequently, i am lucky. Maybe one bad attack every couple months, so i wont take any medication because i feel i can deal with it the way it is.

    its nice to know there is a community out there and i am not alone! (appologies for the spelling having a recovery day)

    • claire22878
      claire22878 TheMightyPerez

      Posted

      Hi,

      This is exactly how I have been feeling & when I was in my teens I just had horrid pains in my head.

      my eyes went all flashy now & then so I had glasses & lots of eye tests.

      Nothing really bothered me until these episodes that left me as you said.....Numb face & left side slurred speech etc etc!!!! :-( 

      After my two trips to the Stroke team I'm clear of all probs that could be nasty - brilliant. 

      But unless neurological can find the answer my doctors are just saying I need physio for probably a muscle problem!  Help what test needs to be taken to look at the diagnosis of Hemiplegic Migraines? 

      My mum suffers from them & did have auras thru her teens too.

      Kind regards Claire

    • TheMightyPerez
      TheMightyPerez claire22878

      Posted

      Hey Claire,

      i was diagnosed because the forces doctor took time to look through all my medical records, and then when i approached my doctors, i lost the niceness as i was angry that i had been diagnosed via a stranger rather than my doctors (had been at the same surgery all my life). so the doctors also went through my records and came back with the same conclusion.

      my stroke doctor was very helpful, he put down my stroke like attack down as a hemiplegic migrane and explained that it may be a one off, so as soon as i had that part on my records, and the other doctors could compare my medical history they said it all made sense and that i had been suffering most of my life. 

      as far as my doctor has said there is no definiative test, but i will seeing a neurologist soon. I have had MRI's, epilepsy scans, nights scans, heart, liver, kidney, ect scans and tests, the list goes on, and know one could ever find anything wrong?!?! I understand your pain, its really hard when you have something wrong, and you just want to know what it is and what to do about it! (I have had extensive tests via NHS and BUPA for Possible Heart issues, Possible Fits/Epilepsy, Possible Strokes, ect ect)

      when i was diagnosed, i actauly felt relieved, because i actually new what it was finally (i wish it was nothing at all but hey), No one else in my family suffers, and hopefully it wont pass on to my kids when i have them.

      My only advice is to just change your tone with the doctors, get them to send you to someone with a better understanding, its your life and its important you see the right people about it, even if it is just for advice or a proper diagnosis.

      kind regards,

      Ryan

  • cazwhitt
    cazwhitt sanddancer

    Posted

    I have the up most respect for you as i live with debillatating Migraines not yet to the point as yours however increasingly becoming that way as i am getting older . I have lived with these my entire adult life alongside Deppression i dont choose the word suffer for my own personal battle , reason . I am just on the verge of further MRI and neuro investigations as i have developed pain that causes my body to shut down ( they thought i had a Stroke or Epilpeleptic Fit ) in AnE and since which i have stange tingling and limited responses in my right side of my bodyand even at time numbness . And the migraines there coming along nicely . These things are pretty much part of me and as i said before i live with them . But for other people in the future i do hope that one day there will be a way to manage and treat pain so that you are able to get on with life as in a more acceptable pace . I always chuckle to myself what came first with me Migraine or Depression or both . Its all in the Brain x
  • jacbullock1
    jacbullock1 sanddancer

    Posted

    Hi...Im not in the UK, I hope that's Okay..I haven't been diagnosed with the Hemiplegic Migraines yet, I dont think they have got that far, I think they are still at the Complex Migraine, I have No Idea what you have stage, 4 years later.  I have had multiple episodes, all the same with the headache at the back of the head, with visual disturbance, and left side weakness, leading to temporary paralysis.  I have gotten most of it back, except a little bit of a drop foot on my left side, that...hasnt come back.  And every time I have one of these complex migraines, which at first they thought were strokes, I would have to relearn how to use my left side again, sometimes it takes weeks to regain the strength on my left side. No stroke, no TIA.  They always release me with the same thing, complex migraine with paralysis that I will regain.  Then, I have to learn how to walk again on my left side.  Does this sound like the Hemiplegic Migraine? 
    • StevenRose
      StevenRose jacbullock1

      Posted

      Hi,

      Yes I feel sure this is hemaplegic migraine.  The symptoms vary a lot from person to person, but each person will have one side that is basiaclly paralysed. 

      You need to find a good neurologost that will prescribe flunarizine as this in most cases is the best drug to prevent HM,

      Good luck

    • jacbullock1
      jacbullock1 StevenRose

      Posted

      So frustrating as I have been dealing with this for 4 years without an acurate diagnosis, with my most recent event last Friday.  I am in the Military Medical system and my current medicine is not strong enough. They are switching my doctors and because I am a NEW patient in the new doctors office, I have to wait until Sept. 8th to get in, even though I had a major event landing me in the ER.  Was told, even though I need medication change and currently have massive headache, ringing in my ears, still have mild partial paralysis in need of physical therapy to get the strength back and an increase in medication change, that I cannot get in any sooner.  If I need help, I can just go to the ER if I have another Episode.  
    • StevenRose
      StevenRose jacbullock1

      Posted

      I know what you mean about being frustrating, because I just want to get on with my life.  But I know that I should be thankful I can at least do things between episodes, some people are totally bed ridden. 

      Good luck and let us know how you get on

    • jacbullock1
      jacbullock1 StevenRose

      Posted

      Acckkk!  Bedridden?  I certainly hope not.  Ugh.. I am so busy...I dont have time to be be bedridden!  LOL.  
  • cazwhitt
    cazwhitt sanddancer

    Posted

    I would just like to say a very big Thank You to Sanddancer and all those that have contibuted to this disscussions . For myself i dint know feel quite so alone and a wee bit scared , the reason being i be honest my husband died suddnely he had headaches like myself G.P did little for him , men being men never forced the issue and at the time we were working flat out just us two on Haymaking hot hard stressfull work , anyway . After which he went away and sadly never returned , Brain Hemmoragh excuse spelling , i sat with my soul mate in a coma for 3 days in a foreign country ,with our three children .. Hence my interest and concerns for people in such discomfort and now it would seem myself . Bless you all
    • StevenRose
      StevenRose cazwhitt

      Posted

      Hi Cazwhitt,

      Well this is the place for support and to tell us how you are getting on.

      Good luck

    • jacbullock1
      jacbullock1 cazwhitt

      Posted

      I finally got in to have a primary care..not a nuero..at least adjust my meds until I can get into Nuero in 2 weeks.  I know that my meds are off, which os what set off my last episode.  I now have to tell my story yet again to another primary care physician..who has no idea what they are doing...but at least I will have my meds adjusted..I can be grateful for that.  I do Not want another episode.  I am still trying to learn how to learn how to walk again after the Last episode.  Fortuanately this one didnt knock me too far back..just about 35% in left side mobilty..but cognatively..ugh..im a mess.  
  • Crews8er
    Crews8er sanddancer

    Posted

    Hey Sanddancer,

    I too have just recently been diagnosed with SHM. My particular attacks start on my right side paralysing first my right side then my neck and voice box before moving on to paralyse my left side and eventually puting me into a comatose state. recently though a random ER doc gave me a combination of Benedryl and Phenergan which pulled me out of the coma and reversed the paralysis within a few hours. when I tested taking the phenergan on its own as an abortive, it failed and I went into a coma again but was given the combination again at the ER and was restored. I have recently taken the Phenergan with the Benedryl at the onset of another attack and it began reversing my symptoms within a half hour and within an hour I was feeling quite a bit better with the exception of a mild headache. I have not seen any other information online about taking these meds together to abort a hemiplegic migraine but I wanted to share it with others that have these debilitating migraines in case it might help someone else as well. 

  • maliawana
    maliawana sanddancer

    Posted

    Hello Sanddancer and others,

    I have had migraines since I was 16. These made me very ill with nausea, visual impairment and could not stand  noise. My GP suggested that I start taking vitamin B2. Since then I tought I was rid of the migraines as I rarely have them at all. However, then I was diagnosed with TIA for many years.facial distortion, weekness on one side, just worn out. Well, I was hospitalized this past Wed. night Sept 24, 2014 with what was stroke like symptoms. However, I did get better after a bit. But they did an MrI to the head and ultrasound of the heart. If it was a stroke they wanted to know if it was from the brain or the heart. The heart was fine and the Mri showed some signs of blockages in the neck (which I already knew) and some small amount of blockages to the brain arteries. However, a neurology specialist of strokes told me that I was suffering from hemiplegic migraines. So all this time I have felt I was rid of the migraines now I know I have been suffering these migraines instead of TIA's that most doctors have been telling me until now. The nueroligist has suggested I take Q10 and magnisiam vitamins in addition to the B2. She has also prescribed Rizatriptan for during an attack. This I need to ask my GP about because in the research I have done said that it is not a good medicine even though it is prescribed. Although, I have been getting better the side affects of this attack has taken 3 and a half days to recover.

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