My heart goes out to everyone suffering with hemiplegic migraine. I myself am not a sufferer, but am diagnoses with "atypical migraine" (a diagnosis that was forced upon me after 7 years of tests) from which I experience many of the symptoms you describe.
Since the age of 15 I have been suffering from severe head pain, visual loss/disturbance (mainly in my right eye, but sometimes both), absences like those seen in absence epilepsy, severe dizziness and loss of feeling/pins and needles down my right hand side. Obviously for the purposes of the forum I have not included masses of information but I could go on!
These symptoms have left every doctor I have seen at a loss and I was just wondering if anyone knows how well known hemiplegic migraine is by neurologists in the UK? I hate internet self diagnosis but based on The Migraine Trust's information on hemiplegic migraine I tick a lot of the boxes and at this stage - I'm sure you can - understand it'd be great to have a name to put with the symptoms.
I was discharged from hospital yesterday after an 8 day stay.
I showed all the symptoms of a stroke.
Thunderbolt pain in the left side of head, disturbed vision, tingling in right arm and weakness in right leg, feeling very dizzy and sick. Having the words I wanted to speak but could not get them out slurred speech. It was such a strange feeling.. like an out of body experience.
After 20 mins my speech returned muddled and slow. Pain behind left eye and could not bear lights.
At hospital I had blood tests and CT scan before being moved to ward. Went on to have a lumber puncture, MIR and CT scan with dyes to look at vessels. All the tests results came back negative. I was kept in for 8 days. I still have memory problems,weakness in right leg.
I have been told it was possibly hemiplegic migraine.
Had a similar episode 12 years ago.
I have been told there are meds i can have for migraines but they do not want to give me them as I have only had 2 attacks over 12 years. I need to visit my Gp for a referral back to hospital if I have any more migraines at all and then GO can prescribe migraine tablets.
Help is there anything anyone would recommend I do, avoid etc.
I am going to Keep a daily diary of food, exercise, stress levels, amount of sleep etc to look if there are any triggers.
I was discharged from hospital yesterday after an 8 day stay.
I showed all the symptoms of a stroke.
Thunderbolt pain in the left side of head, disturbed vision, tingling in right arm and weakness in right leg, feeling very dizzy and sick. Having the words I wanted to speak but could not get them out slurred speech. It was such a strange feeling.. like an out of body experience.
After 20 mins my speech returned muddled and slow. Pain behind left eye and could not bear lights.
At hospital I had blood tests and CT scan before being moved to ward. Went on to have a lumber puncture, MIR and CT scan with dyes to look at vessels. All the tests results came back negative. I was kept in for 8 days. I still have memory problems,weakness in right leg.
I have been told it was possibly hemiplegic migraine.
Had a similar episode 12 years ago.
I have been told there are meds i can have for migraines but they do not want to give me them as I have only had 2 attacks over 12 years. I need to visit my Gp for a referral back to hospital if I have any more migraines at all and then GO can prescribe migraine tablets.
Help is there anything anyone would recommend I do, avoid etc.
I am going to Keep a daily diary of food, exercise, stress levels, amount of sleep etc to look if there are any triggers.
Hi everyone! I have just recently been "diagnosed" with HM but I've been suffering from them for years! I've had migraines since I was in college but they faded away for a while but after having my first son in 2002, they came back with a vengeance and has never left! Over the past 11 years, they've gotten progressively worse. In 2008, I started passing out, having left sided numbness/ paralysis, slurred speech and vision loss, among other things. I was admitted into the Hospitals at the University of Missouri. I was there for over a week. They did blood tests, MRI's, CAT scans, lumbar punctures and constant observation. By the end of my stay, I was told by their head Neurologist that I had MS. Although nothing was affirmative with the LP, they did find 3 lesions on my brain that, they thought, were due to the disease. So for the next 2 - 3 years all of my symptoms were chalked up to MS and I was regularly going to the hospital for treatments of steroids. These treatments rarely worked but it was protocol for someone with MS, so they just continued. My, then husband, was in the military and we were transferred from MO to GA in 2011. When I starting seeing those doctors for continued care, they wanted to do their own testing. I was re-admitted into the hospital but this time the doctor's told me that they saw no affirmative reasons why I would have been diagnosed with MS and that, in fact, everything I was going through was ALL IN MY HEAD!!! I was LIVID!! All the pain and agony I had been going through and they had the nerve to tell me it was all in my head! Little did they know how right they were! Once my husband and I divorced, I moved back to my home state, NC, and started seeing a Neurologist in Raleigh. I explained to her all the things I continued to go through and she wanted to get testing done through HER facility and come up with a diagnosis based on what SHE saw; not what she read in my medical file. So, back to square one, the testing started all over again. After months of testing and hospitalizations, she told me that I did NOT have MS. She confirmed that I DO have lesions but not MS. She also stated that I was severely anemic. I had to have 2 blood transfusions within 12 months and spent several days, in and out, of the hospital due to the continued symptoms. Through my description of and her witnessing my symptoms, she stated that she thought I had a very rare type of migraines. A type that mimic stroke symptom and is often mis-diagnosed as MS. This is when I first heard of HM. I am going through different mixtures of medications to get my symptoms under control. As of right now, I still have 2-4 migraines a month. During them, I can't talk (slurred speech), my muscles in my left arm and left contract and/or go numb and I can't walk. I frequently pass out and most times, get injured in the fall. It's difficult for me to drive because my eyes are so sensitive to light. I am really tired of living this way. I'm thankful for the diagnosis but it was really disheartening to hear there was no cure. I am glad to hear there are others out there that know what it's like to feel like this. One of the lowest times in my life was when they doctor's thought this was all in my head because THEY didn't know what it was. Just because it isn't CLEARLY visible to the eye doesn't mean it's not real.
I don't usually reply to any of these forums, but I've read over several of your stories, and decided to tell you all mine:
I am NOT a doctor, my story is not a proven template on HM, I haven't even formally been diagnosed, however my symptoms fit the HM profile (left side weakness, brain fog, trouble speaking, walking, all while experiencing aura, lasting for 3 days, then pain in various part of my head, but only for a few min after the weakness leaves). I've been dealing with this for at least 25 yrs, It got progressively worse and more frequent over time. The Docs decided I was bipolar when I was 23 (am 35 now) and tried me on every bipolar med in the book it seems; this diagnosis caused the docs not to listen to any of my health complaints, and would chastise me for debating their opinion on the matter. Couldn't ho;d a job, couldn't get disability. Last year, a friend of the family asked his father, a retired pathologist to look at my case, and after seeing my long list of oddball symptoms, replied that it was likely a migraine caused by celiac disorder. It took me 4 months to come to terms that this was a possibility, tried the diet, added vitamin d, and a copious amount of spinach to my diet, and have been symptom-free for 3 months now. I won't speculate on what the full daisy chain of problems was to explain why this would work, but its worth trying the gluten free diet for 3-4 months (tell you doc first) just to see. I doubted it like crazy, as I like my pizza and sandwiches like anybody else, But the proof is in the pudding, as they say.
Just wanted to let you all know that these sorts of migraines can be prevented, but it can be hard to find the source of the problem. Just keep on digging. Sometimes the most complicated problems have the easiest, simplest solutions.
Hemiplegic Migraine is extremely rare which is why it is so hard to diagnose (.003% of the population). The symptoms mimic many other diseases - stroke, MS and if you also have basilar migraines (which it turns out most hemiplegic sufferers do) then you may present as if you have meningitis.
I've been Vegan tried many dietary and other alternative type medicines - while I found some relief with these things it didn't cure my problem and if anything it got worse as I got older. I noticed a pattern here on the thread - I'm not the only one who got worse after having a child. There is some connection with hormones and this disease. More women suffer from migraines than men. It's interesting to note that for so many women the disease got much worse after having a baby. I know for me it was a thousand times worse than before I had my child and before her it was no picnic.
Unfortunately very few doctors seem to know how to treat us. The best doctors I have found are those who listen and have been willing to work with me.
This is a debilitating disease. I don't understand how a person was diagnosed with bipolar disorder if they had this disease. The two diseases have nothing in common. You must have gotten a terrible doctor! Also celiac's is very different. My best friend has that disease. She did have debilitating headaches that were from a nerve in her head that lost it's coating but it was a separate issue from her diagnoses of celliac's unless perhaps there is some unknown connection. It might be something to check out. She had a CT scan and other scans of her head before they figured this out. It is something to really be on watch for as she is the 3rd person I have known to have serious issues of the brain that were not found. My father in law who just passed had a brain bleed which should have been caught 2 years earlier but wasn't because no one ordered an MRI. Another woman I know had a terminal brain tumor that wasn't found until it was too late to be removed. YOU HAVE TO BE PROACTIVE! So don't just let doctors walk all over you here. If you are having the symptoms of hemiplegic migraine you HAVE TO GET TREATMENT and RULE OUT EVERYTHING ELSE FIRST!
The only way I was diagnosed was because I presented while in a hospital setting. I had gone undiagnosed with that particular form for most of my life. I also have seizures under extreme conditions which can happen with this disease - it is called a "sister disease" to epilepsy, actually all migraine disease has been found to be related. The genetic mutation is very similar. In order to be properly diagnosed you also have to have an MRI to rule out MS.
If you have hemiplegic migraine you are at a risk of coma and a higher risk of stroke.
Hi I sympathize with you all I was diagnosed with hemiplegic migraine a while back I had been getting some
Headaches and collapsed this led to me being in hospital for 2half weeks I couldn't move all my right side I was blind in my right eye ! . After loads of tests from scans to lumber punctures a specialist came and diagnosed me straight away . Since then I have been extremely ill benn back in hospital twice collapsed at home regular plus I have spinabifida occulta which causes me extreme pain and discomfort . I even collapsed in the bath and had to be got out off my 15 yr old child it is awfull . I have worked all my life !! 20yrs never claimed but now I can't walk far do anything stressful I have give up driving cause what if I black out and killed someone I would never forgive myself . I have put a claim in for d l a and am worried I won't get anything and how ill I am . I have lost so much . I am on lots of meds morphine for pain gabapentin and 900asprin 3times a day
I just seem to have no help advice and the worry about money it is so upsetting .
Hello my name is Siana, I would like to share my story of how I came among migraines. A few months ago it all began when during certain times of the day I started getting attacks with painful head pains and pressure. Then it got a lot worse, when the migraines began to become continuous. During the mornings they are not so bad as during the evenings. I feel as if someone is squeezing my head together or that I am carrying a massive heavy rock on my head constantly. This has caused my to lose my balance, feel really unsteady and very weak. Especially on the right side of my body. So this worried me and my parents seeing as I am only 16 years old and it is constant and has been for the past 6 weeks. I was at the hospital where they did a CT Scan and an MRI Scan on my brain. They said that everything looked absolutely normal. I would like some ideas about what type of migraine this could be so I could find out how long it will last and how dangerous It is. I am really frightened as I have missed a whole term off college and have so much work to do but can't simply concentrate because of the constant pain. Doctors have advised me to stay stress free and eat and drink in huge amounts. I have done so but nothing is changing. My neurologist has also advised me to be very conservative with pain killers as they may worsen the migraine. I cannot bare this any longer. I need urgent help and advise. At least I need to know that there is someone out there who is suffering with a similar or the same type of condition. I have never felt so alone in this.
I also have nausea and weakness especially on my right side due to the pain. I am so frightened because this has not stopped for once during these 6 weeks. At certain times of the day it gets a lot worse but it is always there. I need to know what type of damage these migraines can cause.
Hi i had my first recorded attack of this in July 2011 and have been affected every day since. looking back there was other attacks before that but as i didnt develop head pain with my migraines until mid 2012 it didnt make much sense to me, i am lucky in that i had a year with just the hemiplegia and auras, the attacks are daily and i never really get out of predrome / aura / pain / postdrome till it all starts again. i try to keep as positive as i can and have a permanant bag packed for emergency hospital admissions as need to get physio at times and get mobilised again as sometimes both sides are affected by this. currently this condition runs my life and a lot of things are affected but im hoping for better days. im 38 now and when i was 15 i had my first confirmed "normal" type migraine it was 3 weeks long and then gp was going to refer to a neurologist but changed his mind as i was also depressed so i became involved with psych services instead grr
I have Hemiplegic Migraine as well the doctors didn't know what was wrong. After spending half Oct. of 2013 in the hospital after running a bunch of test and nothing was showing up and all my test where negative they didn't know what was wrong till they call in a Neurologists after taking 1 test and having me act like a crazy fool in the hospital room he knew right away that was Hemiplegic Migraine. He had prescribed to me a old antidepressant (amitriptyline) to help with the attacks of where I go numb on one side and travels up my face and to the other side and stops and I lose oxygen to my brain and I don't know where I am or ho nobody is. to deal with the attacks before they happen he told me to take 3 Ibuprofen and drink with a coke..i also have to carry Ibuprofen and a coke with me at all times just in case I feel one come on somehow the 3 Ibuprofen and drink it with a coke helps stop the attack and the migraine all in one. The meds im on makes me sleep a lot but id rather sleep little while longer than have those attacks!
I have totally the same infact had a attack this morn ! Luckily it wasn't bad you can read above about what happened to me it's people understanding and getting help that's the problem anyone who would like a chat contact me
Emis Moderator comment: I have removed the email address as we do not publish these. If users wish to exchange these details or chat out of the forum then please use the message facility
Hi all!! I'm 40, male, fairly fit, good BMI, family man, but with family history of migraine etc.
I'm new to this; I got taken into hospital last Thu after suffering an instant and acute pain in the rear LHS of my head and neck. 15 mins later I was trying to pull my hands out of my pocket and only the left one came out. My brain went through a very confused moment of thinking my arm had been blown off! Crazy thoughts!! Then the palsy kicked in on my cheek and i couldn't talk to explain my problems to a colleague. This only lasted about 20 secs and all seemed to return to normal.
I have now had the same pain in the back of my neck, like a muscular pain which hurts when I turn my head. Its been a few days so I was hoping that it would have gone by now.
Is this normal? I'm nowhere near as bad as some of you guys, but this pain is literally doing my head in!
I must confess I haven't read all the posts but thought I would add my story to the mix.
I am a 48year old male, realatively fit (in medical terms at least) non smoker.
I have always had headaches generally over one eye or the other. As a teen I was diagnosed with cluster
headaches but had no real treatment.
In Febuary 2013 I was working late and very stressed, at 3 am I was a passenger in a van, asleep for the
journey. when I woke up I have a very sharp pain in the back of my head and neck. I put this down to sleeping awkwardly.
The next morning I woke up with a bad headache (cant remember where) and extreme vertigo (the room was spinning like I was drunk) for the first few days I could only walk by holding the walls) I was given anti dizziness pills but they made it worse) On the Saturday ( a week after the first neck pain) I was able to walk
outside ( walking like an 80 year old) I then had a speech episode where in my mind I was trying to get the words out but in reality I was talking gibberish ( I had no idea that I was actually"speaking" whilst I waited for a car to pick me up I had my eyes closed and had the most strange pain in the left side of my head which I can only describe as pain blooming like a flower opening in a sped up film- this was visual as well (even though my eyes were closed. with a blooming of colour.
That evening I went to the emergency doctors. my eye tracking was bad, my co ordination bad so I was sent to hospital. Eventually I was told I had had a stroke or TIA. After several CT scans and MRI I was told I had not had a stroke and there was no evidence that I had had a TIA. I was discharged and told I could go back to work and drive, despite being unable to walk unaided. No follow up appointments were given.
I was put on aspirin and statins.
Jump forward a few months and still not feeling right I demanded to see the stroke consultant.
He went Mad as I had just been abandoned, so I started anti stroke drugs and had every test related to strokes.
All this times I was getting the headaches as usual.
Jump forward to June and at a concert ( I was again very stressed) I put my son on my shoulders, straight away my left arm went numb so I put him down, the numbness went. half an hour later I tried again. The numbness came back but when I got him down the pain didn't go for 2 hours. The next day the pain/numbness came back when I dropped my boys home ( no lifting but very stressed) the pain came back and 5 hours later I was in hospital again but on the cardiac ward!) More tests and more MRI (inc full head and neck and dye tests)
I was discharged saying it was probably a mimic stroke caused by migraine, I started on amitriptyline, and for the first few weeks it was heaven as I didn't have a single headache. But they came back. So the dose was upped (eventually to 70mg/day) but still the headaches came.
I was referred to a neuro consultant ( an expert in migraines) who was quite dismissive and just kept me on the amitriptyline and naproxen and codeine for pain.
On my last visit to the stroke consultant I was diagnosed with HM and put on propanalol 80mg sr twice daily with a view to changing to gabapentin or valproate and was discharged.
But on investigating HM it seems that these drugs are no longer the "in favour" drugs.
Strangely today I got another appointment to see the stroke consultant next month, I haven't got a clue why but if anyone can point me in the direction of what questions I should ask I would be grateful.
like most of you I ended up in casulty a couple of years ago after telling the doctor about numbness and weakness down the left side of my face and upper body, arm and leg - I also had difficulty swallowing. I'd suffered from migraine for years (the 3 days non-functioning - throw up & fine sort), but on this occasion I had no headache (usually I'm wishing somebody would pop out my right eyeball for some relief). I was extremely tired and had mild ache pain everywhere else - during 5 days in hospital getting CT scan, MRI scan, lumbar puncture I of course developed a cracker 3 dayer (they had to time the lumbar puncture for just as I finished a throwing up session, bungled it and then didn't let me in on that other cracking symptom known as lumbar puncture headache - from draining too much fluid out - so although discharged I was flat on my back with that for another 10 days).
Back then they diagnosed HM and Fibromyalgia (as an afterthought), when I complained about the tiredness and general pain and signed me off. So now I still get the numbness & weakness & talk rubbish & I can feel a droop at the right side of my mouth for a couple of days etc. (I don't tell anybody though...No..No..No), but the migraine headache is distinctly seperate and can not show up at all or about 3-5days after. The general pain and tiredness is now worse and pretty constant so I went to the doctor who is treating me for Fibromyalgia with an anti-epileptic drug (haven't started yet - the side effects look worse than the cure) and has booked me in to see a Neurologist with the promise that I will not under any circumstances have to have another lumbar puncture.
Anybody else had a diagnoses of Fibromyalgia running alongside HM?
I am just starting Verapamil as I have read that these are very good for Hemiplegic migraine. I have also started a diary on migraine talk so I can keep track of my progress and try and beat these attacks.
I have also had great success with Pizotifen but sadly it does not stop the hormone ones, but I am on a mission to beat them!
Hi all. Been a while since i posted. You never get rid of the monster as i am finding out .... eye down bells palsey .. numb left arm and leg. Its annoying but its a fact well never be rid of it. Yes i have been told you are at a higher risk of stroke because of it. My head feels like lead. Off to bed and relax. I find flus and colds which get in to my head affect me ....
I had managed to get from daily to two a month so I know it can be done! Must not give up. I have the same with colds etc, cutting out gluten and eating mainly veg has helped me cut it down somewhat.
I think starting a diary is a great idea wish I had done it ages ago I think it will help I've started one online.
ive had the same experience of being discharged and cleared fit to drive and work even though i couldnt walk unaided and even with aids would fall after less than 10 steps
re what questions, maybe any white spots on scans? (they can explain, i think of them as air holes to let my brain breathe), one medication choice over anohter, has anything shown in any test, are any treatments not suitable for you due to maybe other health conditions
would recommend a look at the severe headache expert website and he has a guide to self help for headaches before you see a neurologist
also this a link to help your gp with starting you on treatment as its a guideline to what need to look out for and when to refer and how
you say you've been diagnosed with fibromyalgia - I can manage the migraine ok - like you I've been having them since I was a teenager and I don't seem to have them as severe or prolonged as some other people who have posted here. Even the diagnoses of HM a couple of years ago I can handle and don't medicate differently. Fibromyalgia though - my doctor has diagnosed Gabapentin for me (an anti epileptic). I had an awful experience with a nerve pain drug after I was hospitalized and diagnosed with HM (can't remember what the drug was called - a depression or anti psychotic drug)
It has made me very wary of anything not over the counter - anything I've read on the internet about Gabapentin hasn't reassured.
I've a big overseas project launch coming up this week and have just avoided the whole medication thing in case it interferes and I'm caught out abroad. The tiredness and pain is very hard to deal with though. Any advice?
