Hi to every1 in here who suffers from hemiplegic migraines. I hav been searching for a forum like this for a long time. Most wanted $$$ to join up. I appreciate each & every1 of u to write in here.
I'm an Australian woman, am 55 yo & had aura migraines since my 20's. Both my parents had slight aura migraines & my bro 2. As if the aura M weren't bad enough, at 50 I was overly stressed helping my son run a business my husband up & left (that's the short of it). Pins & needles ran up & down in a wave & weakness overcame me & my whole left side collapsed taking the rest with me to the ground. I immediately thought it was a stroke & managed 2 say 2 my eldest son that I didn't want 2 leave him & my youngest son alone. I was so frightened & weak. My son ph an ambulance & I went to the local hospital. After many Q. & a CT scan ruling out a stroke the Dr's said they believed I had a HM which I'd never heard of. I didn't want 2 go home (scared of a repeat) but they had no reason 2 keep me in. I recall the day b4 being extremely uptight & my words were garbled, I couldn't say what I wanted 2 say & I stuttered badly (feeling totally embarrassed).
I was told they r related 2 a stroke & 2 take it as a warning & not 2 overdo anything. I rested for about
3 wks b4 I got some energy back. My son never let me help with the work again. 5 yrs later, I hav suffered many since. Both aura & HM's. It's come 2 rule my life.. As if it wasn't already ruled enough with anxieties & phobias including agoraphobia. I was so upset 2 read of so many sufferers & in particular the 17yo that's not fair!!
Why am I here? It helps 2 learn of others & what they go thru & what meds they've used & some side effects. Guess what, I've never been referred to or heard of a headache or migraine specialist!! I jst take Naramig as soon as either type comes on along with 3 disprin forte, 1 panadeine forte & rest up & sleep if I can. I then take another Naramig 4 hrs later with more disprin forte & panadeine forte. I also serepax (oxazepam- since I was 18yo & temaze- temazepam since my husband left 5 yrs ago.
I've found that over exerting myself Like cleaning, walking 2 fast, gym (when I'm ever well enough 2 go) weights, or jst stressing will usually do it, tho sometimes Im surprised 1 doesn't come on after doing a lot physically. I also find that irregular sleep patterns bring them on. Broken, not enough or 2 much sleep! I currently hav a HM at the mo. I began 2 get used 2 them & different signs told me 1 had come on. Mostly everything moving so bad I cld barely tell which way was up or down. Ive dropped & had 2 crawl a few times. Sometimes they've happened whilst driving. Scary at any time. Other symptoms I notice.. Jst a little harder 2 breathe... Sometimes I feel like my eyes may bring 1 on, especially when I change to my stronger lenses. Other things I kno set them off is the sun's reflection on a car in front of me.. Flashing lights, even the reflection thereof, movies or ads that flash or even a flickering fire. Lines, stripes, a ceiling fan, geez so many darn things.
Last Friday I was standing waiting, in a health food shop. Haha! 1 came over me & it lasted a lot longer than usual. I gripped the counter so tight & all I cld think of was hope no1 sees me & they were all so busy they didn't. I've been in bed since except 2 let the dog out. I'm alone as my youngest son is overseas. I taught myself 2 push on thru them out of need.. & stupidity as another always comes back harder. When it's really bad I rest up but I get SO darn frustrated, upset & angry cos I hav so much 2 do. Tho I can't work due 2 back injuries & anxieties.. & HM I still try to move on. Each time I get knocked down I always get up again cos I dont want 2 b bed ridden as ive seen others. So much in life I want 2 achieve still I'm not giving up! I hav come 2 realise I can only do what I can do. The worst thing we can do is nothing or b 2 scared 2 go out! I wld appreciate any1's response as i did not kno so many people suffered like this & if any1 of us can help another, then we've achieved something. Not sure what ive written, typing this up on my phone. I'll be darned if I'll go 2 a specialist, I don't want 2 experience any side effects. This is bad enough.
I will look in2 getting blood tests & c what foods I cld be allergic 2. So thanks 4 that post. As most of u wld understand, it's stuffed up any social life I've had. Family & friends r tired of my excuses. I always feel I let every1 down & this makes me sad & depressed. If I get invited anywhere, my reply has become to be, "all being well" I'll be there. I'm jst scared of overdoing it bad enough 4 an actual stroke 2 finally get me & I kno I shld take it easy, but I'm a mum of 2 grown up boys who I feel I need 2 cook & clean 4 etc plus do the things I 'want' to do. I'm jst so sick of being held back each time. It gets tougher & as much as I'd love 2 hav a partner in my life, I don't think it wld be fair 2 him 2 take on all of this & so I feel even more lonely. I appreciate being able 2 get some of this out of my system.. I thank any1 who takes their time in reading my 'whinging' lol. I so try 2 hav a sense of humour. It keeps me going & I do hav a laugh at myself. Also, there's ALWAYS' people worse off than us. At least we're not on dialysis etc.. I reckon if I was rich, had a wonderful psychic talented Bowen therapist, I kno 1, jst can't afford her treatments, had a cleaner, a cook.. I'd be SO more free of these HM's. No one understands us except for us here that suffer these. So pls, let us be there 4 each other. I'm very willing 2 listen 2 any1's problems, if it helps a little & I kno it does, go 4 it. Love to all.. Try 2 b positive about
what YOU want in life. It's amazing what positive thinking can do, I also realise that when is so down, it's hard 2 look at anything with a positive attitude. Take 1 day at a time.. Does any1 else do silly things whe. They hav 1.. Like it's gone 5am & I kno k shld be sleeping!! Pls talk 2 me..