hemiplegic migraine

Hi i have also been diagnosed with hemoplegic migraine and suffer the exact same symptoms as yourself and have attacks every week. Its exactly like ive had a stroke and have been hospitalized numerous times, i use to be on amitryptaline full wack but i was zombie-fied, no life just exsisting, my nuro put me on pregabalin which is hard to take at 1st but the benefits are alot better, out of my attacks in the few days before the next attack comes i have a brief window of a life not a normal life but i have other physical injuries (spinal) but like i say im me on the good days not a zombie that just lays/sits suffers, i can speak with friends and now family visits as id stopped all visitors at my worst point. I still suffer but i have glimmers of life, you should ask your neuro about pregabalin medication, wont stop the attacks but inbetween youll feel more human. Been on pregabalin for iver 10 years and still on a low dose so your not having to up your meds to continue to get the benefits which is a bonus. Hope this info is useful to you.

Kindest regards

Fellow sufferer

I'm jealous of the people that have been diagnosed because my consultant isn't diagnosing me correctly in my very humble opinion.I am certain I have hemiplegic migraine and abdominal migraine also. They were both new experiences from my usual migraines. The stroke symptoms I had really scared me. The consultant I saw is saying I don't have this based on one variable, which is that my symptoms don't go away immediately e.g. as soon as the pain stops or last a day or days etc. I have two problems with this decision.

First of all I have had aura symptoms up to 4 days before the pain in the head, neck, jaw, arm, abdomen (central section only) numbness, weakness, nausea, vision problems, inner ear changes, forgetfulness etc. I find exhaustion is often, but not always one of the first symptoms that really blindsides me. I've also noticed I am forgetting things much more often which is a bit worrying. Its really bad. So if symptoms can proceed other pain symptoms like mine do, then it doesn't mean a hemiplegic type migraine didn't take place.

I found peer reviewed research from the US that states that symptoms can last days, weeks, months and longer, some permanent. It also said that permanent changes causing brain damage in the worst cases has been seen. It specifically says that hemiplegic migraine should not be discounted based on the fact that symptoms do not go away completely and or continue for prolonged periods of time. My case fits this 100% and after having loads of tests I am relieved it wasn't a stroke. However I have little faith in the lack of diagnosis. I'm having an MRI then I have to back to hospital to see the consultant again. My notes say I have no history of migraine when I do. I've had migraine since my wisdom teeth were removed in 1994 after my son was born. I also have them in relation to the PMS. Ive had bouts of PMDD (Pre Menstrual Dysphoric Disorder) also so hormones may play a part for some of my attacks at certain times of the month. I have had 7 attacks since the first one which was the 15 April and it's May 4 now.

I'm having an MRI soon, then I see the consultant again. I'm going to mention that my medical history is incorrect and the information I found. I saved the article on my phone so I can show him. I'll do this politely and carefully as I know most Drs do not like it when we seek information, even when it's been explained that we looked at strong reputable sources and think we are getting above our station.

I was given anti platelet meds and statins. I refuse to take any of them. I workout 3 days a week CV & RT Monday, Wednesday, Friday with 2 rest days on the weekend. Before it was CV 3 days and RT 3 days, with just 1 day rest. I'm getting better results already physically and find it more manageable. I added half a tiny cup of mixed nuts (walnuts, hazelnuts, almonds, Brasil - 2-3 only) with some dried fruit (7 bits) and 1 prune and 1 dried apricot. Its a tiny amount, but has really helped. So I workout after having eaten these. More sleep is imperative for me also. I aim to have 8 hrs sleep, but fall short often. I really need to get on top of that. I studied aromatherapy and make my own face,body and foot oil using coconut, hemp and avocado oil mixed with essential oils.

My preference is ginger, lime and peppermint for my nausea. I have other oils for hormone balancing so I'm hoping that will help. I was given amitriptyline for breast pain a few years ago. I took one and couldn't breathe so I just want to steer clear from meds. I feel very positive that I can manage this, but only because I'm self employed and can do as few hours as I need.

If I was in a 9-5 job I'd be sacked. This condition and working those hours is impossible for me to do. I am so grateful for that. However if I was unable to do those hours which I was fearing when I thought I was having a stroke, I would be doomed!!

I can see myself having to go to a private specialist for a second opinion and correct diagnosis. My concern is that without a diagnosis if I get a more severe attack, no one checking my history will see this information recorded anywhere. If I get an attack in the street and I can't speak or explain myself because of confusion, which I've had very mildly, I'm very vulnerable. That worries me a bit.

I'm just doing healthy in as many areas of my life as I can, hoping this will make be better able to deal with this and remain positive. Thank God for my two dogs because when I have a bad attack I feel kind of....not scared, but...I suppose its a mixture of dreadfully nauseated, weak, grim pain and vulnerability. Holding onto them really brings that feeling under control. When I have the abdominal migraine (very painful and weird) hugging them also helps. Even the way they smell is a comfort. I sometimes get an odd metallic taste in my mouth like during pregnancy, but that could be linked to my PMS/PMDD.

The NHS doesn't seem up to date with the literature on this, so I can see myself having to save up to see a private migraine specialist.

I really hope and pray everyone dealing with this debilitating and unpredictable condition, finds a way to cope and live a productive, happy life.

Hi, I’ve recently been diagnosed too after having a bad attack while on holiday in Cornwall, spent 2 days in hospital, complete paralysis on left side, 2 x CT scans and MRI confirmed it was a hemiplegic migraine, doc started me on Amitriptaline 20mg, so far seems to be going ok, I’m just still partially paralysed 2 weeks 3 days after attack and really worried that this won’t go away, I work full time and have 2 boys 5 & 3 Years so this has really hit me hard, neurologist said it would go but it’s taking so long to get back to normal, is this usual for these types of migraine?  

Hi

I am currently waiting for an MRI appointment to come through thanks to a thunderclap headache in Feb I've had to have numerous tests and have had more and more debilitating symptoms since. Last Thursday I had numbness and tingling down one side of my face, the only reason i knew it wasn't stroke is because i could blow my cheeks out and lift both arms (although I had pins and needles in my right hand) My GP thinks its likely to be Hemiplegic Migraine, and I think my aunt has them too but I cant verify because we are estranged. I've been on amatriptalyne for years and it does nothing for this particular headache. I too get a heavy ache in my neck and back of head in the lead up to an attack but i don't always have pain after that it can just be the numbness and tingling (which is bad enough) do you also get muscle twitches elsewhere such as calf muscle and forearms?

My GP actually suggested my symptoms could be a Hemiplegic migraine, so i am hopeful after an MRI to be treated as such,

I had the initial thunderclap type onset back in February (after suffering with "normal" migraine for years) These are different in the fact light doesnt make me throw up, it just makes me aggressive. I had the worst onset on thursday last week in the middle of a math exam (Im at Uni at the age of 39 so its been stressful and Math is my least favourite subject because im just not good at it!)

I started to get a numb face which has been the norm when stressed recently but then the pins and needles started and went all the way down into my right hand, I checked myself for stroke (blew my cheeks out and lifted both arms (i wasnt in the exam at that point) and put it down to stress but called to make my GP aware, she insisted I go and see her where she did all the neuro tests push hands away, resist being pushed away etc and tested my facial numbness (it was still very numb) initially (when the first headache happened they had thought aneurysm) but now she said it could be Hemiplegic migraine and is sending me for an MRI (ive been on neurologists waiting list since early may and not heard a thing) I just hope this settles down because I have a loooong three and a half years ahead of me and i really cant face being debilitated like this on a regular basis.

I really hope you all get the help and find an effective treatment, ive been on Amitryptaline for years for the 'normal' migraine and it doesnt touch this one. even on a double dose.

Sorry to post twice my other comment didnt appear until after i posted the second time ugh!

what about pizetfen ??think thats how you spell it?

i use migrane buddy and kept a years record worth if migrane recordings. emailed it to my self and printed it off , took it to the neroligist who was so excited aboht the data. i went from 0.5 mg if pizotefen to 1mg and as a result iv gone from 11 migranes a month to maybe 1 a month and now wear gray tints to help combate the world looking to bright.

i can sleep for like 12 hours sometimes then be awake like 30 hours - if i dint sleep 10-12 hours i get migrains , as a result - i work one on one off one on so i can sleep after a day of work which helps me too

hello

i have found reading your posts so helpful thank you my heart goes out to you all you tend to feel very alone with this condition no one understands if they are not going through it!

i was diagnosed with HM a year ago.

previously i have had strokes and have paroxysmal atrial fibrillation

i am currently taking topirimate 50 mg twice day i lost 2 stone in 2 months

i get numbness in my face arm legs and have had some awful attacks which have lasted days with skin crawling

i often get numbness in just my lower leg or face or upper arm its horrible and heavy

This year i have been in hospital twice

In July i was in for 5 days but felt they didn't fully understand me and now as i write this i am in hospital again this is my third day

i can sense the neurologist frustration with me i don't conform to the one or few days today i was told your not progressing fast enough !! i can't help how my body recovers....

i still have the numbness in my face arm leg and so tired i am walking a little but slowly

i have just started a new job so am worried how my company will deal with this

i have struggled with work have tried part time full time not working but i need to work financially

i hope someone replies be so lovely to finally talk to someone who can understand

thank you

hello

i have found reading your posts so helpful thank you my heart goes out to you all you tend to feel very alone with this condition no one understands if they are not going through it!

i was diagnosed with HM a year ago.

previously i have had strokes and have paroxysmal atrial fibrillation

i am currently taking topirimate 50 mg twice day i lost 2 stone in 2 months

i get numbness in my face arm legs and have had some awful attacks which have lasted days with skin crawling

i often get numbness in just my lower leg or face or upper arm its horrible and heavy

This year i have been in hospital twice

In July i was in for 5 days but felt they didn't fully understand me and now as i write this i am in hospital again this is my third day

i can sense the neurologist frustration with me i don't conform to the one or few days today i was told your not progressing fast enough !! i can't help how my body recovers....

i still have the numbness in my face arm leg and so tired i am walking a little but slowly

i have just started a new job so am worried how my company will deal with this

i have struggled with work have tried part time full time not working but i need to work financially

i hope someone replies be so lovely to finally talk to someone who can understand

thank you