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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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  • lucy34578
    lucy34578

    Posted

    I was diagnosed with a hemiplegic migraine this week but I have never had a migraine or suffered headaches before. I didn't have head pain on the day of the attack or blurred vision I had pain in my left side first, then my right arm went completely dead and by the time I reached A&E my speech had slurred completely. All my scans were clear. Now I am home I am still suffering with slurred speech, extreme exhaustion, dizziness, sickness when will this end.

    I know in comparison to some people on here I haven't been through half as much but I'm just really scared losing my speech to some degree is really scared me sad can anyone tell me how long it will last and whether they agree with my diagnosis?

    Thank you for taking the time to read my post any comments would be greatly appreciated x

  • emily76356
    emily76356

    Posted

    I was diagnosed with HM last summer. It was my first attack but I've had normal migraines since I was about eleven. I am sixteen now and about to do my exams I am very lucky not to have had any more attacks but I'm scared I will have one during my exam month as the doctor said my mine was due to stress ( don't know what I was stressed about though to be honest haha).

    My migraine lasted about two weeks and one week of that was in hospital on a drip cause I couldn't take in anything without being sick. They thought I had a stroke cause my right side wouldn't work and they thought I had meningitis and then they thought I had a brain tumour but thankfully the CT scan showed that my brain was clear of that.

    It took about a month to fully recover but it all happened in the holidays so thankfully I didn't miss any school or anything.

    It's been seven months since that happened I get very regular headaches about three a day.

    When I had my migraine the most pain was on my right eyebrow and ever since then all of my headaches are on that exact same spot never anywhere else. I was wondering if anyone else has experienced this.

    Also after my migraine I went off certain foods like ice cream and sweet things like that. I used to be a proper sweet tooth but after my migraine I just wanted savory snacks like nuts and vegetables instead of my usual sweets and fruit. I was also wondering if anyone else had experienced that and had an explanation for it cause I'm curious how that happened or maybe if it was just a coincidence and I got more of a mature taste haha.

    Thankfully the doctors said that if I didn't want medication I didn't need it as I was having no other attacks. I have regular migraines but nothing at all like the one I had in summer.

    I have very fast metabolism and I lost two stone in that attack and I still haven't put back all the weight on so I'm also scared that that's going to also happen during my exams. I was wondering how many of your guys attacks were due to stress and how you coped with it.

    Some of the stories on here are absolutely horrific I am so lucky to have only had one attack and just hope that age doesn't cause me to have more.

    Emily xx

    • kaylee25
      kaylee25 emily76356

      Posted

      Hi Emily, My name is KayLee and I am 27. I had my first attack last spring. It was caused from stress, smells, and lighting. I have found out that even everyday stress will trigger my migraines and attacks. The first thing that helped me a little was going off all CAFFINE. But every person is different. I have also avoided floresent lighting, strobing or pulsing lights, strong odors (perfumes, lotions, sprays, etc.). I have also cut most of the stress out of my life, but there is still some (bills, broken car, no job, etc.). I have found that cigarette smoke triggers them, wood smoke triggers them, pollen / yard work triggers them, heat & sometimes cold triggers them. I would keep a journal every time that you have an attack, what you eat, smell, if there was something bright, and then look at those things and try to avoid them. Some people will have an attack after eating certain foods. I wish I could give you more hope and tell you it will all be ok, but I still haven't figured that out for myself. I do wish you the best, and I am serious about keeping a journal. Even if it doesn't help you, it may help your neurologist help in treating it.
  • PhoenixRose
    PhoenixRose

    Posted

    Hi all, I was diagnosed as Hemeplegic Migraine sufferer when I was approximatley 24 years old. I am now 33 I remember my first symptom was right sided arm paralysis when I was 19, this happened infrequently over a couple of years and then at age 24 I have vision problems where I would get the zig zag lines, speech difficulty and when I looked at something half of it seemed missing, I was admitted to hospital to rule out a stroke, I was there for 9 days as I was extremely tired and had slight problems with balance. I had an MRI scan which showed no tumours or clots etc.

    Since then I have had attacks of varying degrees, most of the time without the headache, I tend to suffer with sight loss, balance issues, numbness on either my face (including my tongue and gums) arms and hands, not always on the same side though, very rarely do I have the speech problems. about once a year I will get the headache which is horrendous.

    I was told to take 900mg of asprin as it opens the vessels in the brain, and usually within 20mins- 1hr, I am ok. I will still have residual effects depending on what 'auras' I had suffered with during that particular attack. I am in fact just getting over an attack at work. I was perfectly fine, got back into the office, looked at the screen and noticed that I couldn't see it properly, I have a very slight (well compared to the usual) headache, which I am hoping will not continue, I took the asprin and that seems to combat the sight issues fairly quickly.

    I was prescribed Beta Blockers, but I refuse to be on medication for the rest of my life, as who knows what effects taken those for decades would do.

    I just try to rest where I can after an attack (although the majority happen at work which is annoying) , If I am off I will not leave the house and just snooze on the sofa.

    There is not alot of information around on this type of migraine, and I have found when I mention Migraine I get people not realising exactly what it is I have.

    I just try and cope with it the best I can, although I have found it has affected my memory not immensly but I am having to set more alarms/write more notes.

    From my experience, I would not recommend medication apart from asprin, and I know that if I get the speech problems during an attack I will take myself straight to hospital to be on the safe side. The choice on meds is yours, i was advised to avoid triptans, and hormonal medication including the Pill as it affects the hemeplegic migraines. I am saddened to hear that so many of you suffer very severly with this condition, and that so many of us have it. Mine was not from a family member mine is Sporatic.

  • nick20336
    nick20336 sanddancer

    Posted

    Hello,   I was a test trial for most of the neuro doctort of the west coast of the US for about four years.   Genetic test finally revealed what I already knew.   I had the FHM1 mutation.

    I've settled on only two drugs - on 500mg Depekote ER in the morning and in the evening.    240 Verapamil ER in the morning and in the evening.  I had been on as many as 9 medications at one time.    I had gained 20 pounds and slept 20 hours a day.   Not a full or productive life.

    My bladder issues, head pain, confusion, etc. where horrible.   I lost almost everything except my wife and son.

    I'm slowly gaining my life back.   Im forty two.   It took me 6 years to get to this point.   99% of neuro doctors have no idea what you have.   You are in charge of your destiny.   Good luck.   I am greatful just to give you some hope.

  • kaylee25
    kaylee25 sanddancer

    Posted

    I can so identify with you. I had my first episode on July 11, 2013. The whole right side of my body went numb and I couldn't talk, it all came out gibberish. I was dragging my right leg and high stepping with my left leg. My right arm was cramped up against chest. My mom had to call an ambulance for me. They thought that I was having a stroke at first but then they realized that it wasn't. The ER doctor said that he thought it was Hemiplegic Complex Migraines. I still have numbness and speech problems off and on, but it always switches sides. Some days it is on the right and some on the left. They put me on Propranolol and then just recently added Topimax. Unfortunatley I am allergic to Topimax and had to stop taking it, but the Propranolol seems to help a little. My neurologist told me that I will always deal with the stroke like symptoms, but the Propranolol would help with the majority of my migraines. It did at first but now I am having at least 1 a week again if not more.
  • judy17130
    judy17130 sanddancer

    Posted

    Hello 

    I have just been diagnosed as suffering a HM after vomiting episodes and lose of consciousness, but no headache just an immense pressure on the left side of my head. This happened 2 weeks ago I had right side paralisys my coordination, vision and thought processes were affected. I had a ct scan and MRI and no stroke showed up. I am improving heaps everyday and mobilizing with a quad stick and movement on my right side increasing quite quickly. My foot drops but have a splint which helps, I can hold larger objects in my hand but not firmly. I still cant think of words on occassion but my speech is clear.

    I have tingling and numbness still in my foot and fingers and less feeling in my foot and tips of fingers. My balance has not returned to normal and my recall is still not normal can anyone else tell me if this is what they had afterwards and how long it lasted.  Regards Jude 

    • kaylee25
      kaylee25 judy17130

      Posted

      Hi Judy17130

      My first advice, if the doctors haven't done it yet, is to get tested for Bells Paulsey, TIA, and MS. All of these mimick migraines. I know it is scary but it is what it is. When my migraines hit and I get paralasis it only lasts up to 2 days and does goes away completely. I hope this helps you, and I wish you a speedy recovery.

  • lori54311
    lori54311 sanddancer

    Posted

    I was also just diagnosed with it but don't her the paralysis on either one of my sides. I feel weekends but not  not complete paralysis. I get confused and stumble around like I'm drunk. Does this sound like what you are getting?
  • StevenRose
    StevenRose sanddancer

    Posted

    Hi Sanddancer and to all those are suffering HM,

    I was diagnosed with this condition last year after have 3 episodes where I was admitted to hospital, with drs thinking I was having a stroke, but ct and mri scans proved I wasn't.

    So, as I was already being treated for Cluster Headache at the headcahe specialist centre at the National Neurological hospital in London, my specialist said straight away it was hemiplegic migraine.

    The best medicine to treat this is Flunarizine, which as it turned out not many hospitals can get it and my local drs cannot get it at all.

    The point is, since I have been taking this med, I have only had one attack and instead of lasting over a week, its lasted just 2 days this time and didnt even go to hospital.

    I have an additional complication that I get terrible eye pain, with photophobia and blured vision, this I treat with 900mg of Aspirin and or the Sumatriptan injections that I have for my Cluster Headaches.

    So I hope I have helped in some way, by letting you know my experiences with HM and what I am currently being treated with for it.

  • claire22878
    claire22878 sanddancer

    Posted

    Hello

    I have been new to these symptoms for the past 4weeks.

    My first episode was in a supermarket I came over all lightgheaded & faint, That dissappered after a few seconds - I was tho instantly left with a numbness on my left side of face arm & leg. I was with my Mum so she checked for drooping of face etc. Only very minor if it did & was gone quickly.

    Two days after no better so headed to Dr's - I was ent to the Stroke team, an initial assesment & they said i should be fine. (a score of 7 head pain started that afternoon)

    Its now 4wks after & only Thursday 17th July I had a episode of tight chest & struggled to breathe, I calmed & layed down on sofa with my Hubbie next to me but no better I was confused & numb even more as this had not gone away from the first time.

    My head pain was worse & an ambulamce was called - I was throughly checked & going to bwe left at home until the paramedics decided due to my unstediness & confusion I was not fit to stay at home.

    Admitted to hospital in late Eve 9pm ish "17th july 14"

    Checked over & sent to stroke team again for just breathing problems they only investigated after saying I was confused too!

    I think they are not really listerning to my symptoms :-(

    I was discharged with a viral infection they said - not know what or where but that was it.

    After coming bk home feeling awful -

    Tired,

    Numbness LHS all of including face still,

    Headpain is horrendous,

    Unsteddiness,

    Mixing up my words all the time & slirred too occasionally,

    Very sensative to light, sounds & noise

    I slept the whole of the weekend & took paracetamol.

    It's now Monday 21st july & nearly 4wks since symptons started & I am no better at all - if anything I am worse since I had my recent episode on the 17th.

    I have called my dr but don't know how to approch the subject about possably being this condition??

    As upon just looking at the symptoms of this condition, I seem to fit 12 of the 13 symptoms on this site i found (http://www.webmd.com/migraines-headaches/hemiplegic-migraine-headaches-symptoms-causes-treatments)

    Any advice or help would be so much appreciated as I am begining to feel lonely.

    My mum has suffered alot with Migraines too in her youth & quite often collapsed.

     

    • nickbone
      nickbone claire22878

      Posted

      Hi Claire, although your symptoms are prolonged , it does sound like hemaplegic migraine. I was a child when mine started and I was at my worst in my early twenties. I have grown out of the numbness side of things but still have the migraine with aura. I also still suffer immensely from slurred speach and muddling up my words also my memory is badly affected. This is made worse during an episode which now only last approx 1 hr. I'm not sure of your age but I believe it's unusual to get them when your older, although they can come back. Every now and then I feel my hands tingle and I worry a bit but then it eases up. I do believe there's a link regarding mine as I have at least 2 holes in my heart and pulmonary stenosis. I saw a neurologist about 2 yrs ago and he said there's not much they can do as the link isn't proven. I worry a lot about strokes you just can't help it. When I started with these in 1977 ish it was very unheard of and docs didn't really know what to do or how to treat them. I really hope you get more help and keep asking to see someone. I don't think paracetamol are to good either. Try ibrobruphen (Soz on my spelling). They will take any inflammation down in your head. Good luck Hun. X
    • claire22878
      claire22878 nickbone

      Posted

      Hello

      Thank you for your reply.

      Its nice to know that the symptoms I am experiencing

      are not just silly.

      I had when i was in my late teens a continuall headache worse in the morning to the extend of feeling like i'd been hit with a brick & eased off by eve not gone but calmer. I had that for a whole year then eased off & dissapered - After that it re-appered 2yrs later & again for a year with it the same but a few eye flashes i had occasionally. After that I tended to just have the occasional headache for a few days or so but that type of headache i became immune too & thought nout about it as by then I was married & had started a family so had more priorities to consider.

      I am now 31 & have these horrible issues.

      I have had a few opertions in my past & illnesses that started in 2009 but these range from

      2 C-sections, Back operation, Hysterectomy, Appendisectomy, soon to be a Gallbladder operation removed Jan time.

      But this horrid debilitating symptoms i have right now has halted my work & time with all my children, I just want it to either stop or find out what is wrong to then be able to move on & work out how to  deal with it.

      Ibroprofen i sadly am not allowed & penacillin or any Anti inflamatories

      Kind regards Claire

    • claire22878
      claire22878 nickbone

      Posted

      Hi - 

      Today I am still feeling quite numb still on LHS of body & unsteady too, My headache with the help from 2x Diazepam & 2x Tramadol has eased.

      I have to wait until the 19th August to see the neurological team. If my symptoms have gone by then I'm worried they'll say I'm fine & send me on my way. I have had two episodes in 5wks last one was worse.

      Is there a way to get seen quicker? As Dr's are always under the impression that if you are better it was just a viral infection - which is on my notes as the stroke team said all CT & MRI's were clear so there is nothing else but viral infection.  

      Thanks again. Claire. 

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