hemiplegic migraine

Hi I'm a 67 year old lady, and I've been suffering with Hemiplegic migraine for 17 years, and it's only just been diagnosed. I get extremely confused, I can't have a conversation any more, I stutter a lot I can't say my words quite often, I'm sure I've had 2 mini strokes, although no doctor has said so yet. I get my words mixed up, I get my number jumbled up, I'm using predictive text to write this, even though I used to be a lecturer at college years ago. The pain in my head is horrendous. I have to stay in a dark quiet room most days, There is only a few days in the month that I don't have it. I get drooping down one side of my face some of the time when I have an attack and my left arm and left leg feel like they are made of rubber, I saw a new neurosurgeon in March he has sent me for a genetics blood test to find out which type of Hemiplegic Migraine I have (hoping it's not genetic), he says if it's not genetic the brain damage should not be so severe. I hope he's right. Before I see him for the results of the blood tests I have to go for a MRI Scan and see him on June. However, my cousin in Bulgaria has asked her doctor about me ad he has said I should be getting coffergamine with the 150g of Topiramate I'm on. (take 2 at a time with your tabs when needed 6 max)  30 ml in place of the tab your taking now. Or Depakote instead of Topiramate. I've never heard of these. What do you think? I take Tramadol,

Co-Codamol, and Netedol. Nothing works. I hope you get back to me. I'm so desperate to hear from someone else suffering, I do feel so sorry for you, I can't imagine being as ill as you, good luck for the future, I do hope with all my heart you improve soon.

Hi sanddancer,

My name is Shelly and I have been suffering from Hemiplegic migraine for 9 years now. The first 3 years not one doctor I went to New what was wrong with me. Then I went to the diamond clinic in Chicago and was told I have Hemiplegic migraine and if is very rare. I have went to a different headache doctor. They have gotten my headache from every day to nine a month now. I am unable to work I tried after all this happened and can't do it. Not only do I have all the side effects as you I also have found out that any kind of smell and foods also threw me into a headache. So I am very limited on what I can do. I spend a lot of time in the hospital because of them. I hate being in public and go into one because people think I am drunk and I don't even drink. I don't know when mine come on at all I could be fine one minute and with in a minute I am down and out. I have a hard time remembering how to spell words and trouble with trying to say them as well. I also have lost some of my hearing as well. Now my husband has been over protective of me and it drives me crazy. Last year my grandson and I got on the bikes and went down to the park so he could play we got ready to go home I was fine and the next thing I woke up in the hospital with them putting stitches in my head and leg and black and blue. My grandson told me I fell and he called his papaw and the fire department. He was only 5 at the time. So my husband took my bike away. So I know how you feel. My headache are always on my left side of my head and the right side is the one I have trouble with. I was talking to my uncle and we figured that his dad my grandfather had these and back in the 60's and 70's they just thought he was having storks because my uncle can remember my grandfather always having headaches. I guess I well let you go and good luck with everything. I just thought I would let you know you are not alone in this nasty thing.

Evans6474

Rabid here from New Jersey USA .. I have been to the hospital 3. Times since February 12, I'm 46 and I'm having mini strokes? Lost some vision in one eye, numb on one side of face, numb and tingles in both hands. And here we are... complex migraines. Ugh. Tomorrow I start verapamil HCL ER 120 mg and start monitoring my blood pressure at home. Here in the states they have told me this is it. This either works or it doesn't .  I needed to join a group like this, I'm scared. The first one was the worst. I was asleep . My dog burst into the room and awoke me by striking me in the chest, she is rather large. I fell over blind as I stood or attempted to and my left side just stopped working. That took a few weeks to recover from. And the eye and the glare stuff seems to be permanent. Although the glare off things isn't as bad now. It has improved. The next two which were only two weeks apart, as with the first showed normal MRI , normal heart healthy heart I've had every test known to man and it all looks good, accept now I'm numb all over as the last two attacks occurred on my left side. The first was on the left. Oh, I quit smoking February 5 , one week before the first attack. Ha! Now there is a joke.. I take an anti seizure medication already as I am bi polar, it is called depakote. As this and the verapamil combo is supposed to work best if at all.  The neurologist here told me it was just , bad luck. I haven't really cried yet. I've been too angry. 27 years hiv positive, a really really hard life that ended with me meeting a girl 16 years ago. And now I'm a middle aged married man, tending to my wife and dogs. And this.. really? What a bunch of !!!! You know what!  I'm so scared, and angry I can't see straight. But I will take some solace in the fact that I'm not alone, and I can see here that I so far don't have a lot to complain about. Some of you have really had a tuff go of it with this thing. I've been disabled a long time from the hiv. So I'll get over being piXXed, and try to be a good support for the rest of you.. as I hope you will be for me as we march on with this strange diagnosis. But for now. I'm still pretty angry.. 

Moderator comment: I have edited this post due to the swearing. These are open forums so as per the T&Cs please do not use offensive language in posts otherwise they may be deleted.

Hi! I have had hemiplegic, basilar migraines since I was 4. I am now 41 and while I am happy, it has been a tough ride and continous to be. I have all the visual symptoms described here, the numbness down one whole side of my body, the loss of speech (I also end up mixing up words that look similar in my head, like potato and tomato). It is a very lonely existence with this type (or any type) of migraine and definitely has resulted in me leading quite a withdrawn life. I NEVER plan any event in advance as I cannot guarantee I will be well enough to attend. Even friends who suffer from 'normal' migraines do not understand at all what is going on. Anyhow, I have tried every treatment under the sun, even Botox and an occipital nerve stimulator, but I have found Epillim to be most effective. It has made my seizure-like attacks less severe and the pain is manageable, mostly. 

I agree with you, sanddancer: doctors seem to struggle with diagnosing hm and then fail to concentrate on all the symptoms like numbness etc., instead focussing on headache management. Yes, for me the other symptoms are much more disabling than the headaches. And I too often wonder why nobody has written anything much about it. I have offered doctors to help them, but to no avail yet. Frustrating and sad. I also have to say that sleep is the best prevention for migraines, but this has sadly led to me having an incredibly strict day schedule with and even tighter sleeping schedule...

Greetings and take care, Everyone... 

Hi Everyone,

I am fairly certain I have previously left a comment on here regarding my migraines but it was a while back and have since had better luck with them. I found out I had HM early last year in 2016 having started having frequent attacks in January and February. The episodes continued to get worse and in a matter of a month went from weeks apart to every other day. Like clockwork, I would go paralyzed on my left side around 7 or 8pm. I finally saw a neurologist with whom I instantly realized had never dealt with this but within the first appointment diagnosed me. He gave me verapamil 80mg and it was a great help, but over time I have not only had the same symptoms, I have gained more or it has gained in frequency when it does happen. My symptoms include paralysis of the left side(twice the right side and 3 times the whole body), drooping of the left eye and face, speaking jibberish, hearing others speak jibberish(rare), becoming extremely tired suddenly then fine minutes or hours later, blacking out(once), blurry vision, suddenly becoming frightened because I do not know who or what is going on(alzheimers effect), falling, what seems like going catatonic(cannot respond or move), problems retreiving memories, weakness on the left side which causes me to have to literally drag myself, and I am having a very hard time sleeping from constantly moving and talking all night(although I'm not sure if that's related). In any case, I am very glad that I do not tend to get too much pain with regards to the migraines but noticed that when I do that once I start having my episodes they tend to subside. I hope I find more relief than I have recently because I am starting a masters program in the fall and have to drive through canyons where there is no pull-off. I have however noticed some triggers. They include: not sleeping enough, drinking, caffeine, working out too hard, and drinking too much water. I have noticed one thing I think is helpful to know, that if you do have caffeine, alcohol, don't sleep, or anything that can be a trigger, that it will get worse as it builds up. The build up is what has made them worse for me. I have episodes almost every day from just face droops to going fully out so I have come to get used to it but for those who have lasting damage and even worse symptoms, I am sorry to hear that. I know this is hard and it feels like we have been cursed but I am glad to see I am not alone.      

An update. I went to the national mygraine centre in London. What a revelation it was. I use vitiman b2 400 mg to help.control the hm. And behold it.works. I still get symptoms but not the attack and after a few days I return to work ok. I have gone back to full time hours now as well. It's really worth a try or a visit to the nmc

Hello, ive recently been diagnosed with hemiplegic migraines, first episode was September 2017, frightened the life out of me, had ct, no sign of stroke. Had second one a week later, was admitted to hospital for 4 days for further testing and more scans and eventually in December after seeing neurologist diagnosed with hemiplegic migraines, started on 10ml of amitriptaline. Hadn't had any more episodes since October but has affected me physically since last one, continual numbness in left shoulder and chest, even though more serious episodes affected right side, also get quite lethargic after exertion, Was active before! Was wondering if anyone has had any benefits from amitriptaline at 10ml or any dosage increase?

Hi Im heartened to see this thread has helped alot of people . Hm is a nightmare ... but one that can be beaten . I have been free of this now for 2 years completely . The vitiman b2 worked 400mg daily. Another thing was to deal with any stress as that seemed to play it's part. I still get my arora but no attack.