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 .!