hemiplegic migraine help

I've not heard of this type of migraine before, but I have had migraine without pain. To be honest I very rarely get pain. i have severe nausea, and am very unstable, but on all occasions i have the numbness on 1 side. My migraine is caused by s narrowing of the arteries in.my brain. It seems most of us sufferers have physical ailments which seem to be triggering our symptoms?

I get ocular migraines. It lasts about 20-30 minutes. It first starts a a blind spot in my vision. Then I get crazy flashing with crescent moons travelling across my vision. They have different colours and flash moving across the eye. This is a precursor to a migraine coming. The thing is I never get a headache. Just the crazy eye stuff. I have read that you can get numbness in different parts of your body, Fortunately I do not get that.

thanks for your replies guys. No i hadn't heard of Hemiplegic migraine either, from what i can find online its fairly rare, at least i know not all migraine has pain. No real underlying health issues, had been fit and healthy so find it strange that this has started at my age. Not going to lie its freaked me out, really thought it was a stroke as couldn't move my left side or speak and lost vision in left eye. My CT, MRI and lumbar puncture all normal so doesn't seem to be a cause.

hi yes I've had this type of migraine triggered by an auto immune disorder. Is your general health otherwise ok?? No other ongoing health problems. What no one ever tells you is that these kind of migraine attacks can be caused by underlying issues.

no general health has been good, no known conditions, have had loads of tests when was in the hospital and scans and all clear so not sure why this has started up? how often do you have attacks? Are you able to manage to work etc? i know its recent for me but that's twice in a month and when it happens its awful, terrified if i go back to work it will happen at work or on way to work.

The dizzy and spaced out feeling sounds like a inner ear disorder. search for inner ear disorder to understand it more. also migraines dont tend to make you lose sight in one eye but can make you have blurry vision in both eyes..

If you want to try to get rid of them then you need to take a magnesium supplement. magnesium citrate is what i use and ive never had a migraine for over a year...i use to get them every 3 weeks.

Also the loosing sight in one eye might be a problem with blood flow to one side of your face/head. Do you get numb feeling on one side of your face? the same side as the affected eye?

look at this

https://www.bupa.co.uk/health-information/heart-blood-circulation/cervical-artery-dissection

Its hard, it sucks. The worst is when you also have risk factors for a stroke, you never know what to do and either do the neurologists. They will try preventative meds, maybe they will work, a lot don't or make you doopy, tired, or have awful side effects.

I actually had a migraine related stroke when i was 30. Retinal artery occlusion in my left eye, 80% of people do not have another smaller (sycil -spelling can't recall) but I did in that eye, so instead of loosing my central vision I lost my peripheral. I also started having patchy tingling down my right side at that time. Since then Ive had ups and downs.

Recently the migraines have changed, Slurred speech, confusion, loss of balance, emotional chaos! And yet again there is nothing I can do and no one has a cure all. I was started on Memantidine by a brilliant Neurologist (actually an Alzhiemers med) but it reduced my symptoms dramatically. Ive been on all the Triptans, Neurontin, Topramax, and the new migraine injections, CGRP. . Look for a study or ask about one if you can. Do all the usual, keep going to the ER till you end up seeing a neurologist, drink lots of water, watch what you eat, reduce stress, and learn to accept help from friends. Ive have migraines since I was a teen, I was running 10K and a vegetarian for 12 years when I had my "migraine" stroke. So there is no easy answer, But do expect them to evolve, and be hormonal, and really mess up your life at times. But you will get through it. I had years of limited bad migraines, and sprees of Hell. But there is help out there and you are not alone, you will manage, and you are not going crazy. Like you said its an invisible disease. Dr always think I'm young, healthy then read my history. Good Luck

Hi , I've suffered from Migraine since the age of 9yrs and at 16yrs i was put on Anti-Epilepsy medication to control how many i had as was doing exams , these phased out slightly but around 21yrs i started getting Hemiplegic Migraines where i looked as if id had a stroke and couldn't talk , I did find out that anything with Saccharin in could trigger one so have avoided that like the plague, then around 24yrs of age, they phased out again but then, literally just before my 50th birthday i had a MI( heart attack), 53 my first stroke , 2016 my second stroke and since then 9 or so TIAs including losing control whilst driving and destroying 2 x garages but luckily escaping with just a broken ankle .

My muscle weakness was diagnosed in 2007 as MG (Myasthenia Gravis ) but in 2019 as MS .

So as much as they say none of these are related ha ha at 63yrs of age id really like to disprove this , I've joined research groups to try and find answers , not so much for myself but my daughters and grandchildren as I can see similarities in both my daughters symptoms although not quite as extreme as mine .

I've read evidence that stress and overwork can cause all these things to happen and my life hasn't really been stress free and i often have worked 60+ hours a week ( 35-50yrs ) but i believe its much more related to Genetics than this and that Hemiplegic Migraine V Stroke/TIA's are interlinked, even possibly to MS as there is MS in my family history in 3 x generations that I'm aware of .

I've recently gone abroad to get MRIs done due to waiting lists here and had them transcribe the results and I do have damage or scarring of the myelin sheath (the layer surrounding your nerves) in your brain and spinal cord.

I find Amitriptyline helps with side effects of all these conditions , especially if i take one at the start of an attack ( aura, eyesight, taste, hearing, fizzing, pins& needles).

As a child the smell of Celery , the taste of Oregano and Saccharin were triggers , as an adult i avoid Saccharin , I dislike Celery immensely but Oregano i can have in huge quantities with no bad effects at all .

Light intensity, density , variation ie Bright white, flickering light, sunlight through trees etc can trigger a migraine still as much as it ever would .

I suffer hugely from Fatigue , confusion ( to the point of not recognising my own home or partner ) , cognitivity decreases as i get more fatigued, to the point reading looks like hieroglyphics , my Neuro physio has advised I don't read after 3pm ( my lowest point of the day ), that I rest every afternoon where I'm only allowed to meditate, have an audio book playing or music .

I try to use " alternative therapies " as much as i can as I've cut back my prescribed medication to accommodate the least side effects that I can now . I feel if trying something doesn't cause any extra side effects then " give it a go" , if after a couple of months there's no improvement " cross it off the list". Try something else , I take pure supplements but have learnt to try these in the same way as the therapies , " give it a try", no help and after coming off them I don't see any positives from being on them " come off ".

My health team told us to " Take control of our own health " and not be pushed around by professional's to take something " just because", not to go with what's suggested unless it works and to not be bullied into rushing , make them listen , even if it means emailing them or sending a list of what the problem is , we all realise the terrible strain the medical profession is under but we deserve to be heard .

I don't ask for an appointment to see a GP, anymore, I'll ask for a call back , they cant hang up or feign "you've only got 3-5 mins per appointment ".

Use the professional's who actually want to help you , for me its the Neuro Physio , she listens I have a let me know if you need me , stance with her , I drop her an email with "what's going on" and she either recommends something or says " come and see me on".

I'm not saying we are all the same but i hope this gives you an idea that you need to be heard and we need to talk to each other or well all think we're going mad and its in just in our minds .!