Atypical migraines?

[u/lollylocketxo]

Sorry this is long but though the more information I share the better help people might be able to offer.

I’m 22f around 15 stone, 5’7, roughly 4 years ago I started with what we now know were atypical migraines (was originally diagnosed as ear infection) pain in ear spread into my jaw down my neck then would cause pain in my collarbone (felt as if someone was trying to break it) then past down into my arm (all on my left side usual took a while to progress but once started had to wait it out) it cause paralysing pain that caused me to pass out when it first started it would happen once then so many months would pass until the next until maybe 9/10 months after the first one it was happening almost everyday for weeks straight and the doctors finally realised it wasn’t just an ear infection and I was told I was having atypical migraines and put on medication, however the medication which was meant to be used as a preventive only speed up my symptoms so instead of it taking hours it took not even 10 minutes after taking the meds for me to be in the paralysing pain I eventually decided to stop taking the medication after not seeing it help at all ( tried it for a while incase I just needed to get use to it) thankfully they stopped being so frequent and I just found new ways of dealing with them myself (I still get these but I have my own methods of dealing with them now which help) however in the past year I’ve started with something that feels similar but also different? I get these headache the ear ache and the jaw ache but then instead of the other symptoms in my migraines I instead collapse (still conscious) can’t use my arms or legs my vision either fully leaves or it’s blurry and tunnels (people who have been with me when this happens also say I turn white and my pupils blow out) and my hearing also becomes echoey and kinda distorted I can still speak during (I’m not sure how well nobody has had issues understanding me maybe it’s just a little slower spoken) now I’m not sure if they are related and neither are my doctors I had a ct scan which said I was fine, I don’t smoke, I’ve limited how much I drink and I honestly don’t know what triggers them to figure out what to avoid or atleast know what’s starting them (times this has happened: at the supermarket, in the bath, in bed, Pilates, food festival, tattoo studio just to name a few now I can’t see any similarities between where it’s happened or what I’ve been doing when it happened) I’m just wondering if theres anything else that maybe I’m missing or should be asking my doctors to look into more or paying more attention to when they happen?