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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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  • tara56807
    tara56807 sanddancer

    Posted

    Hi im 28 and have just been diagnosed . i was admited to hospital on friday as i lost the use of my left arm. I have been suffering with migraines for months which always occurred on my right side of my head . i then began to get alot of sharp stabbing pains.. The doctors gave me loads of tablets to try also which never worked.

    Im now booked tomorrow to see a neurologist and tp have a mri svan on mu brain ..im not going to lie im petrified.

    The use of my arm has returned but aches alot at the top and still feels weak compared to my right ..is this normal ?

    I just hope they can help im fed up of having constant headaches and migraines

    • LindaKay53
      LindaKay53 tara56807

      Posted

      Tara,

      I hope you get some answers from neurologist. I know how scary it is to not really know what's going on and praying someone will help.

      Love and Peace

      Linda smile

  • annmarie913
    annmarie913 sanddancer

    Posted

    HI all. Well, I think I had one of these migraines today. I do suffer from aural migraines where I get the prism/zigzag lights in one eye but usually no pain with those. Today was different. I got the prism, so I took some aspirin and went on about my business. About 5 mins later I got up and went into my moms room and as soon as I walked through the door my head started splitting on the right side temple. I had to sit down, then both hands went numb. I was having trouble seeing. Then I just burst into tears because of the pain. I went and laid down and couldn't lay still so I got back up. My lips started going numb and also my whole body just started feeling very heavy and weighed down. I also have burning sensations in my fingertips and my toes and rapid heartbeat. I put my symptoms into google and found this website and started reading and wow. If this is what I have, hemiplegic migraines, then I don't know what I will do. I'm just sitting here now, hoping my symptoms go away so I don't have to go to the ER. I'm feeling extremely tired and confused and my head is killing me.

    • StevenRose
      StevenRose annmarie913

      Posted

      Hi Annmarie,

      sorry you are feeling like this and you do have many of the symptoms asscociated with Hemiplegic Migraine.  Of course you feel scared and its natural as you havent had this before and believe me please, we have all felt scared at some time during these attacks.

      So, if you are still suffering then you do need to go to the ER for sure to get checked out to rule out anything that is sinister.  They will do all necessary checks.  Next if the ER team dont do it, get yourself a referal to a Neurologist, to have an MRI scan.  Dont worry though please, this is standard procedure and we have all had them on here.

      So good luck and hope everything settles down and you get the right meds to control things.

      Do let us know how you get on and come on here anytime to talk, we will listen to you and someone will get back to.  We do understand as we are all in the same boat.

      Take care

  • tammy97355
    tammy97355 sanddancer

    Posted

    Hi Sanddancer, 

    i know exactally what you are going through.  I go through the same thing.  I started having miagraines atb3 yrs. old and they quit and than came back off and on at times and when Inreached my late 40's Instarted getting them bad and started having stroke like symptoms. As a matter of fact it put me on a breathing machine for 3 days.  They thought I was going to die.  I started having the aevere headaches than the numbness in my right arm than the facial droop on the left side and and  my blood pressure shot up to 220 over 180 which by this time I quit breathing so the had to put me on a machine. I have a history of bleeding ulcers so they can't give me the shot they give stroke patients because if so I would die for sure. This has happened to me two other times.   I have these spells so much that the doctors at one of the hospitals think Inam faking this! Why would someone want to fake such a serious condition! I have been at the point to where Incould not respond to them but could hear every word they said and they hit, pinched, beat everything they could do to get me to respond and still not able to and not able to even talk for over 12 hrs. At one point and they tried saying this was all in my head! I told them what I thought when I finally came out of it. This is so unfair to us with this problem. The doctor that diagnosed me with the hemopaligic miagraines said the are a form of Mini strokes and what it does is shut down the side of the brain that makes you breath and makes you move just as if you are having a stroke! Also I have learned that when you have a minimstroke or TIA that it does not necessarily show up on a Cat Scan or an MRI. So it is Wrong for a doctor that does not know or understand this problem to judge us! How dare they! They do not know how we feel or what we are going through.  I have them so often that when I go in to the hospital they treat me like I'm crazy and Im in tears.  I have even checked myself out before knowing what my results were.  I refuse to be treated like this because they are not up to date on this issue.  So now my doctor gets mad when my blood pressure gets high and I get these symptoms and refuse to call an ambulance or go to the ER. I guess if the time comes and these mini strokes or the hemopaligic miagraines cause me to have a full blown stroke than I'll just have it. I refuse to go to our hospital again and be treated like it's all in my head! I'll just know it's meant to be and my time to be with the Good Lord! I hope you are having better luck and yours don't get S bad as what I've been dealing with and if so just know you are in my prayers and your not alone.

     

  • rebecca_22760
    rebecca_22760 sanddancer

    Posted

    Hi,

    I am waiting for an appointment to see whether I've had a tia or hm. I had lack of coordination, weakness, difficulty getting my words out, and worryingly difficulty in swallowing has anyone had this last symptom. The episode didn't really last long and I spent the day on the sofa resting and sleeping. I felt OK that evening albeit exhausted and freaked out. However the doctor says I can't drive until I've been seen to rule out a tia. I have a history of migraine with aura but nothing on this scale it's pretty frightening stuff and the symptoms of a tia and hm are so similar.

    • StevenRose
      StevenRose rebecca_22760

      Posted

      Hi Rebecca,

      Like your GP said he doesnt know if its HM or TIA and the problem is nobody knows because the symptoms are so similar.  You have to have several tests to determine what it is.  I am surprised you didnt go to hospital and kept in until the Neuro team had assesed you.  Each time I get HM I am admitted in an emergency case, because as I said the symptoms are very similar.

      I would urge and nag your drs to get a Neuro appointment asap.

      Good luck Rebecca and let us know how you get on.

      Take care

    • rebecca_22760
      rebecca_22760 StevenRose

      Posted

      Thank you,

      I have an appointment on Monday to determine what it is, so I have the weekend to rest and worry a bit more. The gp says even if is is a tia they recommend to take full dose aspirin for two weeks following the event which I am. I called the team about the appointment to try an bring it forward but apparently I'm a category 2 and category 4 is seen faster. However the gp says if it happens again to call an ambulance and get straight to hospital.

      Did anyone else experience difficulties swallowing with a hm?

    • StevenRose
      StevenRose rebecca_22760

      Posted

      Rebecca,

      I can say yes I had difficulties swallowing, and talking.  Its natural you are worrying because of what you are going through.  be careful with full dose aspirin though as it can agrevate your stomach, be sure to take it with food.  Actually if it was a bleed then taking aspirin will make it worse, so take care!

      You need an MRI or CT scan to determine what it was.  MRI is better though

    • rebecca_22760
      rebecca_22760 StevenRose

      Posted

      Thanks again,

      Can't wait til Monday. Will taxi to work tomorrow and try to carry on as normal but alot of my work involves driving so will have to wait until I know what's happened before I can get back to normal, if I can that is!

      Reading some ppls stories about hm is quite disturbing, I can't believe how debilitating these types of migraines can be. Not sure what's worse. A tia or hm

    • StevenRose
      StevenRose rebecca_22760

      Posted

      Oh trust me as bad as they are HM is better that tia.  yes I get admitted to hospital everytime as it affects all my left side, but I dont want tia or strokes at all.  I am controling the HM now with botox, this has been amazing.  Consider it Rebecca. 

      You WILL get back to normal once you hit on something to help you.

      Good luck for Monday and let us know how you get on.

      Take care

    • Temple
      Temple rebecca_22760

      Posted

      You asked if anyone had dffculties swallowing and my daughter who is 25 did. About 3 months ago I drove her to the ER because she had a drooping mouth on the right side, She was given aspirin and admitted for observation. In the morning, she developed left side paralizes from her face to her toes with difficulties talking and inabilitiy to swallow. They have not diagnosed her with HM yet but can not find any reason for the problems. It took her a couple of weeks to be able to eat a normal diet.
  • Olivia2010
    Olivia2010 sanddancer

    Posted

    I got diagnosis with Aura migrains 2 weeks ago.

    I thought I might of had MS with all my symptoms.

    I have had 4 bad attacks my leg and right hand has been left weak with paryalis. My face droops a lot sad

    All 4 mri clear spinal tap clear and other test out ruled the worst.

    I could not believe all these symptoms came from migraines.

    They have me on beetablock and a sleeping tablet.

    Yes l don't love these medications.

    I am seriously considering natural things.

    A friend keeps telling me to try plexus.

    • StevenRose
      StevenRose Olivia2010

      Posted

      Botox and Flunarizine have helped me as too have destressing my life
    • StevenRose
      StevenRose Olivia2010

      Posted

      they inject on the forhead. back of the head and neck and shoulders,  the only thing I get is minor tightness on the forhead, but no facial paralysis.  Its a recognised treatment for migraine
    • Olivia2010
      Olivia2010 StevenRose

      Posted

      Is Aura migraines what they diagnosed you or is it called something different in uk?
    • StevenRose
      StevenRose Olivia2010

      Posted

      they called it Hemiplegic migraine.  Weakness down my left side, facial drooping, slurred speach, painfull eye, ear feels like it will explode and it looks like a stroke.  So they always take me to hospital
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