Hemiplegic Migraine, that wont go away

Hi all, Well im new to all this. Im Steve im 45 and 6 weeks ago i was fine, never had head pains, then BANG my life decided to change. From fit and well on the Monday morning, to loosing the feeling in my left arm and face with very bad head pains, dizzyness, and sick feeling. WOW what head pains !!!

The next Morning i felt fine but within 30 mins i had two stabbing pains under my left arm pit, and then my left arm and face went numb. My thoughts were hard to process and to put into words, i was very confused, and very dizzy, but i had no head pains.

I have got "Long QT syndrome", so i thought my heart was playing game's lets get to A&E fast. When i got to A&E my speach was bad and i was shown a seat, then i was shown room, then i was shown a bed, all in 10mins, yes i was admitted.

I was admitted to the stroke unit for four days as it was not known if i had had a stroke or a migraine, i was told its 50/50. I had a CT Scan, chest Xrays, throat scan, and a M.I.R. scan which concluded that it was a Hemiplegic Migraine that i had been hit with.

I found it had to understand how i could have a migraine and no headache. I was given some literature to read on Hemiplegic Migraine's and discharged. I did ask if i could be seen by a neurologist, but i was told that i would have to be refered by my own GP for this, and sent on my way with my symptoms with me. Thank you !!

My Symptoms were, L/H/S numb face, numb arm, pins needles in hand, dizzyness, but no head pains

Well its now my 6th week with this Hemiplegic Migraine still no neurologist, i have been on Topiramate 25mg for 3 weeks.

Week 1, was three pills a day no change, symptoms the same.

Week 2, was four pills a day, hand,arm,face,bit better, but i now get constant head pains, but new is i now have a very sharp temper, very volatile i explode !!

Week 3 back to only three pills a day, all symptoms have come back in arm, face, hand,dizzyness, headpains still there, but sharp temper has gone.

I have finally got my appointment to see my neurologist but thats not until October !!!

The pills Topiramate dont seem to work, im getting fed up with the Doctors not knowing what to do, and im at a stand still which has drawn me to the internet and found this site. To fine you people who may be able to help me get back to normal.

kind regards.

Last edited by

16 Replies

  • Hi, a good start with Hemplegic Migraine, however you may well have Hughes Syndrome, otherwise known as Sticky Blood or indeed Antiphopholipid Syndrome. There is a forum on this platform for Hughes Syndrome, however also do stay on this forum, many members are on several! The blood tests for Hughes Syndrome are simple to do and cheap.... but unfortunately many doctors especially Neurologists over look it.


    Although it does affect woman an awful lot a percentage of men also have this!


  • Hi Mary, yes its a very good site, i have been reading allot thanks for your help

  • Sorry to hear about this. You may need to keep pestering the GPs at your practice and ask if you can get into see the neurologist sooner. Or ring the hospital and ask to speak to the neuro's secretary and see if they can give you a cancellation appointment which might bring things forward a bit.

    If your pills aren't working you need to keep going back to the doctors.

    Hope you feel better soon.

  • good news, my work are going to pay for private for me to see the neurologist, thanks for your help

  • Sorry you have felt so poorly.

    I too have been diagnosed with hemiplegic migraines, and like you I had felt healthy previously. I had similar symptoms to you including heart pain, whole body weakness and massive mood swings. I was referred to see a neurologist but like you the appointment was a long time away which was no use as my migraine was lasting weeks and I was off work. I was eventually put on 25mg of amitriptyline which did not work at first. It eventually reduced some of my symptoms and now I have moderate to mild symptoms so I have been able to return to work. Sadly it has not stopped it all together as I'd just like to go back to the way I was - healthy. There are other places you can look for help such as the national migraine centre. I also read the book called "the migraine brain" which I felt was useful.

    Tea drinker is right, you need to return to the Dr's if your medication isn't the right one for you. It's a bit if trial error :(

    I hope you get some relief soon. Take care.

  • Well its the biggest fight i have ever had but thanks

  • Hi you probably have but wanted to check you had tried cutting all the usual migraine triggers out chocolate, caffeine, citrus, cheese etc. According to most neuros your meds won't work unless you make basic life style changes. Also avoiding processed foods with msg and trying not to take any otc pain relief as it can cause rebound. Regular sleep & plenty of fluids too. I find acupuncture really cuts down migraine frequency & pain. Good luck with neuro appt.

  • Thanks mauledtodeath, I have not been informed about this by my Doctors, this is a new one. I was told by the Hospital that i must not drink Grapefruit juice only because they put me on Statins to play safe. It looks like i best look this up on the internet so thanks. I would have thought i would have been informed of this by the hospital or my Doctors yet when i was in hospital my menu was not restricted in any way, cheese and biscuits, fruit juice, coffee, whatever i wanted from the on screen menu i could have, so thank you, it just shows how vital this site is in helping every one out

  • Do do some food-allergy exploration. Not everyone has the same triggers; I've read articles by UCLA headache specialists that hold that sometimes the foods one thinks are triggers are actually part of the aura (it's complicated; check out Dr. Andrew Charles, UCLA).

  • Hi I would google walton centre chronic migraine. Nick Silver has a info sheet. There is also a very gd book called Heal Your Headache which advises on all potential dietary migraine triggers. It is very trial and error though but well worth doing if you do find a culprit. Good luck.

  • It's amazing how often we are told we have migraine but are then left to it. I was diagnosed by an ENT consultant and told to cut out cheese, chocolate and red wine. It turned out that none of those were triggers for me. No other advice was given so I bought a book and worked it out for myself.

    There are triggers other than food as well. I find OTC pain killers OK provided I don't take them for more than a couple of doses just to get over the worst of the headache.

    Steve, it's very good that your work are sorting you out with a neurologist.

  • Hi Steve . I've had Hemaplegic migraine for 22yrs now I was 35 when my life changed like you at the blink of a eye. I'm no doctor but I've been on Topiamate max dose and I was so volatile and moody , bad tempered. . I'm under a top neurologist in London he took me off them slight away they can. Make you paranoid that can give you a bigger problems . Have they tried you on lamotrigine I'm on it and that helps my H/M attacks . Do you get a aura like some kind of warning . Keep a diary of dates , how long the attacks lasts symptoms . The Nurolagist will want as much info as you can give him . So if you can ask your gp for a letter of treatment hospital reports or print out so you can take it with you it will save time .

    It's going to be hard Steve and you will learn to put yourself somewhere safe and you must get a medi alert bracelet or watch or something like that , so if you have a bad attack people will know there a problem .

    I hope this has helped a little . If you need to talk or want anything else just ask . Hope all goes well but don't forget you not on your own .

  • Well the Topiamate 6 a day done me in. Went to see my normal gp he took one look at me and said its time to come off those your a mess. So over the last two weeks i have reduced my Topiamate from 6 a day to zero, and i have been taken of the statins also, as he said my body needs a good clearing out. I had many many problems on the Topiamate, and now i am off them i feel human again thank God.

    The private medical treatment from work did not happen !!!!!!

    It has now been confirmed that i did not have a stroke in any form, so thats some good news, but i have still not had it confirmed by a specialist Neurologist if it is a Hemaplegic migraine yet.

    My left arm / hand still has aching / stabbing problems, and i still get Dizzy Spells when i go for a walk. As i have the dreaded Long QT Syndrom also they are doing a MOT on my heart to make sure all is ok, who knows it could be conected ?

    On Tuesday i have my first Neurologist appointment so hopefully i might get some answers to what happened back in May.

    I will keep you good people posted

    If possible Stay well :-)

  • Well I had my appointment to see my neurologist and it was very interesting. I was lucky because the 9am appointment didn’t turn up, so as I was early my appointment it was a good long one and not a rush.

    The neurologist had all my many test results Inc my MIR scan on the computer, so all the information he needed was there. He did a physical test on me that lasted about 15mins this consisted of reflexes, eyes, movement, balance, and body weakness.

    He explained in great detail about the MIR scan, blood flow results, and other thing he needed to know and was looking for. He looked back at my life file that the hospital have on us. Any surgery I have had, he discussed all medication I have been on over the last few years, and treatment I have had.

    Then I was hit with it, the in-depth chat about my MIR scan and Hemiplegic Migraine. I was informed that if I had had a Hemiplegic Migraine then the MIR scans would be showing different results, and he explained. My face was of shock, as he informed me that I have not and do not suffer from Hemiplegic Migraine’s.

    He believes that I did have a migraine that day, but it is possibly all linked and connected to my Long QT Syndrome, the pumping station. What was a shock was he was well up to date on the Long QT Syndrome possible links with Migraine’s. He knew all about the electrical signals, channel genes, and when I informed him that I am having genetic testing to find out what gene type I have, he requested that he would like to see the results, and then started to explain the different channel genes and what they are.

    He wants me to have a MIR scan on my neck to make sure all is ok there, he has written to my cardiologist explaining his findings, and requesting he is kept up to date with the results, and wants to see me in December for all the results and make sure I’m ok.

    So there we are what a shock. I have had a copy of his report sent to me in the post and it is very interesting. I still get partial dizziness on exertion and my left arm still gives discomfort. I will give another update after I have seen my cardiologist.

    Hope this can be of help to others

    Take care

  • Do read MaryF's posts (her photo is Dame Edna, I think). She has really good nutrition wisdom and the low-down on Hughes Syndrome (I don't know if that's added in to your problems). Since age 8, I've had the scintillating scotomae with crushing fatigue but no headache until last year; now I'm 64 and getting them every day.

You may also like...