I am Hemiplegic Migraine battler in Australia looking for people in similar situations that may have tools and ways of making life easier, i have limited help and doctors willing to assist as ther are no cases i know of in Australia.
Have you tried acupuncture? Seek out a doctor of oriental medicine. My migraines are almost completely gone, or if I do get one, its much less intense. I go regularly for acupuncture treatments (every 10-14 days).
I agree! Acupuncture and also CranioSacral Therapy (both with very experienced and nonUS trained people) are helping me a great deal!
Yoga (not hot or otherwise strenuous) has been very helpful as well.
While sometimes my episodes have been linked to stress, caffeine and allergic (like) reactions to some foods (including oranges, vino and cheese), recently they also seem to be related to allergies to toxins (i.e. too much chlorine) and also molds etc. Allegra has been helpful.
Best of luck!
i 2 was just diagnosed with hemiplegic migrane but this is still so confusing & the dr's i currently have don't sem to be of much help or they just seem to not know 2 much about this. plzzzzzz... if there is any1 out there u can feel free to contact me with any help, suggestions & would love 2 hear ur stories. im so desperate that here is my # 978 400-5452. i just want help i feel lost with this
thank you
sincerely yami
I was diagnosed with hemiplegic migraines last year at 49 years of age. I am under the care of a very good doctor in San Antonio, TX. I still deal with my symptoms but the are a lot less intrusive on my life. I get nerve block shots once a month, I am on verapamil and I still get migraines but they are less intense and I am able to hold down a job though I have cut my hours to 4 days a week. This gives me a day for doctor appts and just to rest.
I suffer with hemiplegic migraines, and have done for over a year. My first experience was very scary, as I lost the proper use of my right leg and my right arm - and this lasted for well over a week.! I was actually hospitalised and after they suspected it was a stroke, and a CT scan later, I was told I had hemiplegic migraine. every attack is not hemiplegic, although my right arm does go very heavy and often painful following it. My right leg is usually always affected too - giving me a limp.
I dnt actaully have many tools or tips I dnt think. I think the main thing Is realising your limitations. During a severe attack I cant dry my hair, and have in the past needed help to wash my hair. My partenr is supportive, so Im lucky there, although having 2 special needs children brings about its own challenges - particularly during an attack. I think you have to make sure you are under the care of a migraine specialist - but you are right, not a lot of ppl have a great deal of knowledge about HM.
During attacks, I rest as much as I can - do not push myself - there are even times I have crawled around the floor, as its easier than walking - or the risk of falling!! To make life easier, I always ensure I have a phone at hand - incase I need help, I make sure everyone who knows me knows about my condition - so they dnt freak out and think Im having a stroke, like my doctor did, I take the full time needed now to recover, which is hard as Ive missed so much work, and I have simply accepted that I have this condition.
If anyone would like ot talk more my email address is gailirvine@rocketmail.com. I too, would be happy to hear about others experiences.
Gail
thank you for all of these posts, i feel more at ease that there is help out there, i had my first attack about 9 yrs ago and spent 6 weeks in rehab (after 3 weeks in hospital when they could not tell what had happened just what had not) trying to walk and talk again,
i get very severe HMs where i loose my speech and my whole left side and can be out of it for days, i have had a migraine for 4 days before i have to be put on a Lignicane drip to knock me out for a min' 24 hrs and then they wake me up to see if i have recovered, tghe pain from the HM is horrible and i have lerned alot tricks to deal with being imobile.
My saving grace of coarse is that the paralasis and weekness in non degenerative at this point but i have nerve damage in my leg and it does ache at times.
i have tried acupunture and ended up with a migraine during the proceedure, i am entering a trial at the end of the year for a shock machine to be wired to my nerves (like a pace maker) BUT i am working with them as my migraines are not regular, i can go months without having one and then i could have four in a week; thank you again it is comforting
My migraines are complicated or so I been told. All I know If that I "enjoy" a variety of them, but most of the time I have only pain on my ritgh side, my speech is afected, half my face look crooked (ritgh side) and my r. arm and r. leg are extremely painful, also I have less streng. But I told my neurologist, and my pain doctor and they told me that they never hear about something like that before so i could not happened. So I stop saying it happened because i am scared they will say is in my head as histeric in my head. REally nice to hear that they are real symtoms of migraine and that even has a name. Sorry to hear how much incapacitating can get to some of you, I hope you galls (so far no guys here) find relief, I haven't been lucky myself.
This is very frustrating and i feel that that is the part that hurts the most, to these Docs because you have a symptom that has not been recorded before "it must be in your head" I have seen many Psycologists (and still seeing one for depression) and they have all agreed that i am not making this up and that the symptoms are genuine.
I have a local doctor here who is in the same climic as my Doc that refuses to treat or see me at all as SHE does not believe in them........
Can anyone help me in what help releive the HM during an attacK?? I have anly found the heavy drugs will only give me releif at the time??,
The information in the link we provided for you talks about HM prevention, abortive and rescue medications on page two. Using triptan can be tricky because of their vascoconstrictive properties with HM. There is detailed information in that article I hope will help. A Migraine specialist is the way to go when dealing with a rare type of Migraine, although currently we don't have one listed on our patient recommended list in AU. We are working on that.
I have suffered from complicated hemiplegic migraines for 21 years. It took us forever to find out what was wrong. I can't tell you how many doctors said it was all in my head. We went to Chicago and Cleveland. No one could give us an answer. My EEG's were always abnormal, so they did think it was some kind of seizure. I always get paralyzed on my left side and my speech is impaired for a couple days. I pass out cold each time too. I used to one or three times a day, but now I go a migraine specialist and I'm down to once or twice a week. It really changes your life. I had to quit my job. I haven't driven a car in 20 years and I missed alot of my daughter's childhood. That's the really sad part.
As far as medication, he gave me Topamax which is what helped me get down to once or twice a week. They now have a generic, Topiramate, which is nice because it costs less.
One thing I did learn, if you have hemiplegic migraines, you can not take Triptans for pain relief because of what they do to your blood vessels.
Well, Mandy from Aus, I guess you know you're not alone. Now I don't feel so all alone either.
No
Hi there sorry to hear that you also have these awful debilitating migraine symptoms. I was diagnosed with this about 5 years ago along with a meningioma and have had absolutely no guidance or help with either.
Its very difficult to live with as you never know when a migraine will descend and when it does its the inablility to put thoughts into words and basically everything slows down, ability to understand whats going on around you and at worst I go into a semi- coma unable to speak or move for perhaps an hour at a time. I have ended up in Accident and Emergency several times because I go into one and cannot tell anyone what is wrong with me because I cannot speak......but understand and hear everything that is going on around me.
Life is not easy and has led to my being unable to take on more than about 10 hours work a week, I try to do a lot of research and have gone through a health and social care degree mostly worked on at home, so life is not all bad.
Perhaps I could hear someone elses view points on this awful disease that I have to live with in isolation?
Linda
hi there.... I have had hemiplegic migraines for almost five years now and take daily preventitive meds to keep myself functioning, and from further damage occuring. 100 mg 2x a day each of Lamictal and Topamax is the combo that eventually worked. That has prevented, for the most part, the severe attacks. The minor ones, that cause fuzzyier days sometimes, and not so great job performance at times, and memory lapses, are still there, but at least I can function for the most part. One of the things that my doctor has learned from medical journals, and my own experience too, is that anything headache involved, is to be avoided. Keep your sinuses dealt with, and allergies too. Any food allergies, avoid... any thing that bothers you, get rid of (haha... like that is so easy to do - dear customer please leave) so that stress is not an issue, if at all possible. But as we all know, real life trudges on. You do need to wear an medical ID bracelet, so that if you have an attack, perimedics will know what is going on vs thinking somethings else. Hang in there.... I know it is tough - I get discouraged, and it really effected my previous job and the person above me perception of my job performance.
Hi Linda Mac -and others!
Although my symptoms aren't identical to yours, there are enough similarlities to make me feel I have finally found someone who might understand what I have been going through for the last few years!!! I don't know if I have "hemiplagic" migraine (I've only just heard the name) - my diagnosis up till now has just been "atypical" migraine and I haven't had any full blown paralysis(that I know of), only weakness/numbness/pins and needles -but I've had seizures, total aphasia(lasting for up to 8 hours), complete unawarenss of my surroundings, garbled/confused speech, inability to repeat/understand numbers, memory loss -the list is endless!!! The thing I don't have is the actual headache - only a mild pain over my left eye a short while before the "episodes" begin! My neurologist is treating me with Topirimate 100mg twice daily. This has controlled the seizures and cut down on the other symptoms but it has by no means stopped it happening. I'd love to exchange news with anyone else who suffers like this and hear of any other suggestions for treatment.
Hi Margaret from Edinburgh (my mother originated in Leith funnily enough!) Sorry to hear that you are suffering the same symptoms as myself, no, I dont get a headache with it all either which to me is one of the oddest things. When you tell people you have hemiplegic migraine they immediately assume you are in a lot of pain - I do get some but as long as it take pain killers asap thats all I need.
It is one of the most difficult things to explain exactly what happens when one comes on, people look at you in disbelief and trying to explain something or understand what is being said is for me, the worst bit. It stops me from wanting to go into the work place and mix with others in case a migraine comes on and I cannot perform ordinary tasks like answering the phone or doing paperwork - I can only describe it like my batteries are running down and my functioning and thinking is slow and limited. If I'd had a career where one needs to be on the 'ball' (say a nurse) it would be impossible for me to work, I'd probably have been asked to leave, funnily enough there are no benefits for this type of illness in the UK so I live on handouts from my ex husband and struggle on. Are you able to work with hemiplegic migraine?
Its an awful situation to be in and hope that yours is a lot better than mine. I dont have a helpful neurologist and I have decided not to go for any more brain MRI's for the meningioma.
Does your medication make you feel drowsy or affect you in any way, up to now I have been offered amitriptiline, epilem and something else, all of which make me feel as though I want to sleep for hours
Hi Linda Mac - thanks for the reply. I was born in Leith!!! It's very difficult, if not impossible, to explain what happens to me during my attacks because, usually, I don't actually know they have happened until I am starting to "come out of them"!!! However, I do know, from what doctors, friends etc have told me is that it can vary from me having actual full blown seizures (like epileptic ones but not caused by that) - although they are now actually touch wood, under control with my medication(Topirimate) - and that is the drug which has been incredibly good for me - and appears to have very little in the way of side effects. Have you been given that at any point? I think it has slowed me down a bit and made me a bit sleepier than I used to be but nothing dreadful. Apart from the seizures, the other aspects which give me the biggest problems are the fact that I appear to "blank out" - become unaware of where I am, what I'm doing - or sometimes I have collapsed without having a seizure(that is less common). The common factor is that I always become aphasic - sometimes for up to 8 hours - if I am not completely aphasic then I am getting my words all jumbled up so my sentences make no sense!! As I start to come out of it, I can understand a bit what is going on but cannot respond, as it gets a bit better, I can completely understand questions but can only reply by nodding or shaking my head as I am still totally unable to speak. When it finally comes to an end, all I want to do is to sleep for up to 12 hours. The most frightening part for me is that I can "lose" up to 8 hour periods of my life - and I never get them back - I have no memory whatsoever about these periods of time. I get a warning signal sometimes of a pain over my left eye but nothing else that I know of. I have certainly had the tingling in my hands, arms, legs and feet. When I am coming round from an attack, I feel as if I am "detached" from everything that is going on around me.
I'm fortunate that my job has not been too badly affected by all of this. I have had several of my "episodes" at work - in fact my last seizure, last October, was at work -and they were the ones who called the Emergency Services etc. As I work in retail, part time, like you, my ability to do my job hasn't been affected as such but it is still very worrying; like you, I am on my own, so finances are very tight. I have been told that I can apply for a DISABLED LIVING ALLOWANCE. It has been turned down first of all but the lady from the council helping me to make the claim is taking it to appeal and says that I should qualify and when I explain to the appeal tribunal face to face and not just "on the piece of paper", she is fairly sure it will be granted. Perhaps you should investigate this allowance becuase it is NOT means tested and it is designed to help people like us remain independant.
My fear is also of going out and about on my own in case I have an attack where no one knows me and so they wouldn't know what to do or where people would just think I was drunk, for example. It is so restricting as well as frightening.
Hi Margaret
Isnt it amazing Leith!! Maybe there is something in the water up there!! No, only kidding. I believe that if it is hemiplegic migraine you have, it can be sporadic or familial HM. I never knew my mother very well as she was always ill and in hospital but when I look back she also suffered from this awful disease but her's was never diagnosed, they said she had manic depression and was put on so many different drugs. Having researched the HM myself I find that, its something to do with the influx of calcium into the cells of our bodies, it goes 'awry' and is directly linked to genes and has been inherited if it is familial.
When i here your explanation of how the disease affects you its virtually listening to myself describe it.....even the part about just wanting to sleep for hours afterwards. Its interesting that you mention memory - this is something that has been worrying me but have always put it down to hormones - I keep wondering if this HM actually affects memory as mine is extremely bad, the kids are always moaning at me!!!
Where you say 'I can completely understand questions but can only reply by nodding or shaking my head as I am still totally unable to speak' is so familiar and for me, it can be quite interesting to watch and hear everyone else flapping around you!! However, I am not able to move at all at that point and just stare in space, I cant see anything apart from figures moving but that is all.
Its incredible after all of this time to actually speak to someone who seems to have the same symptoms, I dont know of anyone else.
I did try to get Disability living Allowance. I was awarded it for 2 years and then told that they had made an incorrect decision and would not be given it after that period. The reason being that the disease is intermittent and I have to be paralised for more than 50% of the time!! I have tried twice to get this benefit since but have been unsuccessful both times and now have given up. It would be interesting to hear how you get on in your claim.
I am so glad that you have been able to keep working and your work colleagues are obviously clued up on how to help you now. I have been found in the street and taken to A&E a couple of times. This was such an embarrassing experience as it takes so long for the doctors to see you anyway by the time they do I am starting to come round, they read your records and send you home. The last time it happened I was taken to hospital by ambulance (not being able to tell the paramedics just to leave me, which they probably wouldnt do anyway) and the doctor was very sharp with me saying that I should know that the migraine is not life threatening and why am I here!!! When you cant speak how can you tell them, so I think a bracelet of some sort ought to be in order I think! The nursing staff were incredibly sharp as well and I felt so embarrassed about the whole thing. Unfortunately though if they do leave you in the street I always worry, like you, that people think you are drunk, it is frightening especially with the worry of having your handbag taken off you when you cant move or speak. There is no easy answer to this just always have your mobile with you....I have in my contacts box ICE in case of emergency.
Thankfully I havent had one as bad as you for about 2 years now and thats without taking any medication. I find that I have to keep away from any stressful situations which is not easy with the little bit of work I do. Excercise is incredibly good, keeping off the wine!!! which I love, making sure I have 8 hours sleep and rest and relax whenever I can.....which is so difficult for my type as I am always on the go so to speak. I have also found that reflexology is incredible, mind you not all are as good as the lady that I go to at the moment, she really knows her stuff.
We must keep in touch but I see we cannot give out email addresses on here as its all public
I think we both need some sort of a marker dont you, I see they sell these chains in chemists where you can get them engraved.....expensive though!
Many thanks for responding
Hello Margaret
Many thanks for replying and your email address. I read your reply last night with your email address included and with a much longer message typed up. I came back to the message this morning to reply and your email address had gone and part of the original message. I presume that someone has dubbed it out for privacy reasons.
Hope you are migraine free at the moment.
Best Wishes Linda
Hi Linda,
Yes, I see that it has been removed too. I received a message from the organisers, explaining that they would have to do that but that we could communicate privately through the actual site, by "clicking" on each others names, which would take us through a process allowing private communication. However, when I tried to do this on your name at the top of your messages it didn't work. It works on my name and on several others(I didn't actually write to myself or the others, just tried to "click" through!!!). Have you perhaps not officially "registered" yourself with the site or something like that? Perhaps you can try that, if you haven't already done so or try clicking on my name at the top of my messages and see if you can write to me?? Let me know how it goes. We'll get there somehow. Cheers. Margaret
Hello Leith Ladies
Another Brit here. Suspected of HM - it turned out to be a peculiar stroke.
Anyway, I applied for DLA on the basis of HM (BEFORE A MORE ACCURATE DX).
It was awarded no probs.
Sorry to say it , but the DLA administrators (who have no medical training or knowledge) will say anything in order to save money.
80% of first time claims are turned down. 80% of all appeals are awarded. This tells us that many, many wrong decisions are made on first time claims. It's just a filtering process to save money.
There are no rules about having to be paralysed for any %age of the time. DLA is awarded on the basis of what you can and cannot do. It's very very helpful to get letters of support from care worker and social worker type people who see you 'in your own habitat' so to speak. (Not from GPs - they never see how your life is REALLY affected and thus cannot give any opinion.)
So....go for it! Have another crack at claiming DLA, appeal, get proper support to do so. My guess is that you'll be very pleasantly surprised. ;-)
Ann Onn!
Wow thank you very much Ann Onn! I understand exactly your point about the DLA administrators it did strike me at the time that this person was not medically qualified when she started to talk about having to be 50% paralysed.
I will give it another go, third time lucky.
Thank you whoever you are for taking the time to respond with such a positive note.
Regards
Linda
Hi Linda - This is exactly what happens to me. I have had migraines since I was a teenager and about 10 years ago started experiencing hemiplegic migraines. I am now 34yrs and they are only getting worse. I am always paralyzed on my right side, loose my ability to speak, everything slows down, but I can hear what is going on around me when I come out of my semi coma. It is terribly frustrating because people seems to be moving so fast and deciding things for at lightning speed. The noise is always amplified, scents are amplifed, lights amplifed. It's horrible.
I am now having the episode get "hung up". So inside of having one and it going away at some point, it will peak and subside and peak and subside...over and over and over for weeks and weeks until I end up in the hospital.
It has been comforting to read all these other bit of information and stories.
Erica
I have just read your emails about HM migraine. My 17 year old son has been having attacks/seizures/funny turns for 2 years now. similar to your. He can't speak at all, can't see as any bit of light too painful and often can't move at all, or is very weak and off balance. He sleeps for hours afterwards too. Sometimes he has a headache afterwards, sometimes not. He has collapsed in the street when he was on his own and taken to hospital by ambulance. His attacks come in clusters of about a month at a time , once every 3 or 4 months. Low calcium was noted in his bloods so I see you mention that may be part of the cause. Never heard that before. He is going to apply for DLA as i'm always having to pick him up or accompany him when he is in a migrasine phase. Thanks for writing. Good to hear others with similar symtom.
Hello
I was sad to hear your son at 17 is getting these symptoms. Has he seen a neurologist to have a proper diagnosis. I have found that doctors like you to see a consultant with HM as it is such a rare condition.
I tried to get DLA but was rejected once again. I am self employed now and work when and if I can on my little business, I have no help from the government with benefits.
There is a lot of information on the internet and other places to learn about HM, I was not given any information on the illness when i was diagnosed.
I wish you and your son all the best, keeping stress down is a huge factor in it all as well I have found. Its just finding the triggers and keeping away from them. It can be bright lights, too much sun, strong smells so many things. I definitely think mine are also to do with hormones but I have no one to discuss this with, doctors just dont have the time.
Regards L
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I'm so glad you've found us. There are quite a few people with Hemiplegic Migraine (HM)on this site who will be happy to share their stories. This article on Hemiplegic Migraine is very imformative - you can find this HERE.
Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.
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Welcome again,
Nancy Bonk
MyMigraineConnection.com Expert
Hello, and welcome to MyMigraineConnection.com!