hey friends, i just stumbled on here somehow, im trying very very hard to find an online support group. but i am in the united states... ive been looking for years, and there just doesnt seem to be any... i was hit by a car in '86 which gave me a TBI, plus a sleep disorder similar to hypersomnia but much, much worse... its completely disabling. they think it has to do with some kind of siezure issue. luckily its easy to control with meds which ive been on for almost 30 yrs. however for some reason in '16 they took my meds without giving any reason or giving me any choice about it. i was ok a few months but all my symptoms are snowballing now. the original dr clearly told me this would not heal and i would need these meds for life. so this whole thing is a mistake and its still not fixed.
after 25 yrs stable, ive been under/not medicated 5 yrs.... 3 yrs ago i was sick enough to end up in the emergency room. id gone from 105 to 86 lbs in 6 months. couldn't control my body temp, flashing hot and cold, pouring sweat, extremely nauseated, unable to eat at all, and very delirious. i had been like this for at least a year, steadily getting worse. they kept me in the e.r. for nine hours on i.v. becuase my heart rate was extremely erratic and they thought i had meningitis. but that is what my body naturally does if left on its own, without any treatment, and it always just gets worse... so its really scary. after that, they raised my dose a little, but it still isnt enough to control the symptoms, so, they are still just getting worse.
im so sleep deprived ive started to get violent against my own will and its very scary. i cant drive or remember what im saying a lot of the time. when i was being treated i could work, and was almost normal. im absolutely desperate for some kind of help, things in the u.s. have gone very crazy with medical care, and i have lost all of my drs and literally no dr will talk to me becuase they are all so paranoid and insane about the medicine i take. i havent had stable medical treatment since '16 and im really, really getting sick. its very scary to become physically violent when im not even expecting it. im losing control over myself. im completely incapacitated.
im trying to find an online support group becuase none of my friends believe me. (as usual) even though ive seen like 5 specialists this year and had a full sleep study... every one agreed what i have and the meds i need... they all agreed and said exactly the same thing. but none will 'take the risk' to prescribe for me. (they think the DEA will take their license cause america is crazy) its absolutely insane. its been 5 years and nobody is helping me, so my friends think it must be not that bad or im making it up. but im not, i feel like im dying, i just applied for a passport because im increasingly feeling if i stay in the u.s. the drs here will kill me.
but im not sure what country i can go to as im disabled, though i have marketable skills, and can work when im medicated.
this is a nightmare that wont stop, it took me 15 years before drs listened to me the first time and believed me... i thought i wouldnt ever have to fight for my treatment again like this, but here i am. i wont last much longer and im very desperate. as soon as my passport comes, i will be able to hopefully escape.. but for now im just looking for anyone who understands.... or, if you can suggest any online support groups that are NOT on facebook... or any country i can move to and maybe get normal medical care that isnt insane. very very much need to find anybody who just understands this and believes me.... thank you so much