hemiplegic migraine

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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.

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  • Posted

    Hi sand dancer

    It took months for me to get my answers, first they thought I had a stroke, but I had a fabulous doctor, who was onto the hospital for me, saying I was too young for that, then they thought brain tumour, so it was a relief when I found out what it was. Whilst day to day life is hard, it's better than what could have been,

    What meds have you tried?

    My consultant told me, if the first combination didn't work there was lots to try, so not to give up

    I guess I was lucky, the first ones did, although I did and do have lots of side effects, bur they are better than not taking them

    Sunshine

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  • Posted

    Hi. Ive been a guineapig and had all i can have. None worked or i reacted to them. Ive had yet anothet spell of it and back in hospital . So no further ahead
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    • Posted

      Hi all & Sanddancer,

      I've had great help from all on here when this started with me a year ago now plus my headaches as a teenager, I too suffer from ( Migraine attack with eye auras, paralysis of LHS body incl face & speech problems) this has been hard over the past year & finally diagnosed in November with this HM illness, I've since been put on nightly Ammatripteline, instant pain tablets (Imigran) should I experience an attack/episode & I also have started a small dose of magnesium citrate powder as this on the herbal side can help naturally to balance out your body.

      Hope I have been helpful. Also wishes to all that we are learning to cope.xx.

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    • Posted

      Hi Claire, stumbled across this after googling my symptoms. Before xmas i had excrusiating migraines for a week which ended up with my left hand and arm paraylised. Was going off and on for around ten mins a time 5 times a day. Got kept in stroke unit but no mri... ct... heart tape... heart ultrasound... artery ultrasound found any issues and i have now been discharged from the hospital doctors care. Although the paralyisis only lasted a week and i havent had it for 3 months.. no diagnosis means i now have severe anxiety and constant pins and needles hands. Only thing that has come of this is low iron... folate and b12 which im awaiting medication for. Not sure if this caused my paralysis or migraines??? Any help xxc
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    • Posted

      Hi. I had my first attack over 6 years ago and it was immediately diagnosed as a TIA. I lost use of my right arm and leg and my mouth dropped to one side. I had all the scan and nothing came up. I had another attack about 2 years later. Again I was told it was a TIA. Since then I have have had at least 10 attacks ranging from just passing out to loss of use of a limb. It got to the stage I just ignored them.

      Then this week I passed out and couldn't use my left arm. I had also been experiencing bad headaches for a number of months. I decided to go to A and E, and was straight away admitted to the stroke unit. They checked through all my record and gave me a WD MRI. I have now been diagnosed with hemiplegic migraines. All the symptoms fit. I can see why I was misdiagnosed but it had been a nightmare 6 years. I am still in the hospital now waiting for them tell me what they are going to prescribe me.

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    • Posted

      Hi byte,

      Im sorry to hear you've had some a bad time of it I hope the hospital food is better than the usual.Welcome to the HM site like you many years ago in 2006 I had a major attack , all the signs of a major stroke.I was immediately admitted to the JR at Oxford ,Initially they treat me fora stroke and then basically cast me off with a very basic diagnosis of migraine with aura.

      Since then it's been years of several severe attacks a&e admissions tests

      scans etc meds trails and now Botox.Im sorry you've had such a bad time of it and the medical profession have a wide range of knowledge and lack of understanding of hM .Some say TIAs other say HM attacks either way the brain is going walk about and loving you like a jellyfish out of water.

      There are afew neurologist consultants I would recommend at the UCL in London if you need a second opinion at any time in the future.There are other major neurologists throughout the country who share information and research developments so it's an on going process , but there are a wide range of meds that help in various degrees for Hm sufferers .Beaware of Triptans with Hm not a wis e range of drugs for  Hms. Don't leave the hospital without getting some answers to questions you want to know, write them down and stick at it till you get proper and not evasive advice.

      Good luck and keep in touch with your progress. All the best.Yvonne

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    • Posted

      Hi Claire, I was unsure what was happening with my body, no signs of any issues other than normal wear and tear, arthritis & scar tissue. I am 43, about 4 years ago i started having LHS numbness - arm, face, tongue. The last 2 years i also have continuous muscle spasms throughout my body. My Dr. had me in for full x-ray, CT, neuro tests, the works. Nothing. I have never had a headache in my life, not even a hangover after a night of parting. I have been on magnesium citrate, just by chance 4 150mg/day for the last 4 months. I believed i had Hereditary Spastic Paraplegia until last night. After supper i had a blurry spot in my right eye which happens occasionally - floaters, blurs and hundreds of these little "atomic squiggles". Then the excruciating pain on the left side of my head. Numbness in my right side, up my face and right half of my tongue, previously numbness was only on the left side. Many hours of pain later I found this forum, good to know what i'm dealing with. I will now try to find gene therapy maybe even CRISPR Cas9 if it has to come to that.

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    • Posted

      That sure helps me, Thank you, a friend ahd suggested tests for folate, ferritin and B12. I started taking magnesium malate first thing and mag glycolate before bed, along with D3 and K2 mk7 and mk4.
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  • Posted

    Hi,

    So sorry to hear that nothing is helping you, and you are having such bad reactions to all medication. There must be some combination that can at least help with your symptoms, it's such a horrible existence living in so much pain all the time!

    What has your doctor been able to do, mine is a star, as is my consultant, I have excellent care and have not had a hospital admission yet, though I take massive amounts of meds daily, life has changed completely from what it was to where I am now, it had too, you just have to keep on at everyone to try new things for you, they can't leave you with no help and no meds.

    Sunshine

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  • Posted

    Hi, I was diagnosed HM 2 weeks ago. I don't get full paralysis but do get some in my left hand side. I don't suffer with what I thought of as typical migraine headaches, I get a feeling of pressure in the back of my head and headaches on about a 5 pain level score. For me the most serious symptoms are severe dizziness, confusion, loss of balance, visual disturbances, speech problems, pins and needles(quite bad in my face/eyes and throat) and weakness in legs and arms and tinnitus. I was told by the Neuro it was Migraine Aura but not given any other explanation or details about the condition, it was my Gp who looked into my symptoms and confirmed my symptoms match HM. I agree there ssems to be no really helpful info anywhere about this,

    What I can't seem to find is, will I have this for life, is it constant or will it come and go (currently it's constant) and what are the long term effects? All I know so far is that I am more at risk from strokes.

    I have only just started Pitzofen which has been started at a very low dose of 0.5mg per day for 21 days, increasing to 1mg from then on and to be reviewed in 3 months. So far I have only notices a small improvement in that I seem less confused buy all the other symptoms are still the same. Compared to other stories on here my med seem quite minimal but I guess they starting me off conservatively.

    I feel for anyone with this condition, it is awful and I had never heard of it before. Any advice/help anyone can give with understanding this would be much appreciated, Like Sanddancer I feel a bit lost and uncertain at the moment,

    Thanks x

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    • Posted

      Hi Bunny,

        I am so sorry you are going through this. The best thing to do at the beginning is to docutment everything, your strees level, food, excercise, medications, sleep, I mean everything. Give it about a month and you should start seeing some patterns, and be able to pin point some triggers. It does get a little easier when you figure that out. 

      It is a scary thing, but finding your triggers and cutting those out are a good beginning. Hang in there.

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  • Posted

    Hi BunnytheCat

    You will probably have this condition for life, and will learn to control it with meds, you are lucky, having such a minimal dose of meds, most people have high doses of meds to control the symptoms.

    There is very little info around about this condition as it is rare, best advice is learn to control it whatever suits you, and adjust your life accordingly.

    If you look at my posts, you will see we all suffer from the same things, blinding headaches, loss of balance,speech problems, pins and needles, tiredness etc, I also have tremendous vomiting, and a constant 24 hour a day headache!!

    Take whatever help is out there, and talk to people who have HM, we are the only ones who fully understand what you are going through!!

    Sunshine xxxx

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  • Posted

    Hi again,

    I just wanted to add/update. I'm more or less the same as sunshine, but no vomiting. Never have, although \i do sometimes feel nauseous. I've tried just about every combination of drugs now too, but can't tolerate anything, although I still take triptans nasal spray, which have limited success and I HATE the way they make me feel, and am on a daily slow release beta blocker, and aspirin. I'm still seeing the neuro, and was told in January that I have 'mild' ms, but have declined treatment (more drugs) for the time being. I think there is still some question as to exactly what is causing what, and I'm feeling like a cross between a guinea pig and a pepper-pot (needle holes).

    Life goes on though, and it becomes less frightening as you begin to realise you will recover from the attacks, however sacry and horrible xx

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