Struggling with Medication Side Effects and the Desire to Work

Mama says just cold quitting one of my meds could give me a heart attack, but I'm not sure which because there's 4 of them. But I do know that when I was trying to work, if I had a night shift I couldn't take the meds till I got home so around 1-2 in the morning the withdrawal symptoms would start. I'd go on autopilot, kind of split brain from body so the body could keep working and the mind couldn't make me do stupid things... but it freaked out my coworkers to watch me zombie shuffle. After the first few times, i told them not to worry, that I didn't need to have my hand held, I was more capable than I appeared, I was pretty sure I wasn't going to trip over stuff and get hurt. But just being 4 to 5 hours late is enough to start that withdrawal, and by 8 hours late it was agony, physically and mentally. But I had a job, right? Couldn't just stop working. But it was decisions like that, or having to choose between going to work or eating. So I lost like 40 lbs, ended up septic and kidney failure, had to go to the hospital, I quit the job in like 2019 and my appetite still hasn't returned to normal. Which is what's so extremely frustrating about the fight to get back on SSI. What should be a shining example, absolute proof I can't work, is the very thing that's getting me denied. Well, we also think something in the papers my doctor filled out. The denial letter from the judge mentioned such things as the tidiness of my physical appearance but she never actually saw me, it was on the phone. The only person who saw me was my doctor and he sees me four times a year to check on the meds etc. He filled out 16 pages of info on me and sent it in, so it had to come from that, (mama said the person the denial described didn't even sound like me), but when I told my doc it had been denied, he was shocked because he was of the opinion that what he wrote was a ringing endorsement that I can't work and should be on disability. Honestly, more than anything I think it's the meds causing the problem. When I got on SSI before, at 23, I was on three of them including the seroquel but at lower dosages. They weren't quite getting the job done. I had to withdrawal medically from college, so mama took me to apply for disability to get my meds because Tricare stops covering military kids who go to college at age 23. Long story short, we didn't have to fight for it. I was a wreck. They approved it and established my mother as a representative payee. But now I'm on the higher doses and not totally asymptomatic but I can pass as normal except in extreme stress (like the job, omg I could tell you some messed up stuff about that job). The condition itself is contained enough by the meds that it isn't actually the part keeping me from working. It's the side effects. But I can't just quit the meds, slowly or cold turkey, because then the symptoms would come back and the condition itself would once again be the cause of my inability to work, only I'll be miserable, hallucinating, delusional, depressed/manic while not working. So the meds fool them into underestimating the seriousness of my condition because they've never seen me unmedicated. Hell, all of my records from before the time I was on disability, my current doctor doesn't even have because like 5 doctors ago I signed release after release to get my old records from my previous doctor but they were never able to get it. So no doctor since has access to the parts of my records dealing with my diagnosis of schizoaffective bipolar type or me unmedicatex. My mother has some paperwork from the hospital where I received the meds for the first time which at least lists the diagnosis, so we brought a copy of that to my current doctor... but that's it. He never saw me anything less than fully medicated with my symptoms largely controlled. The people making the disability determination haven't seen me less than fully medicated and the only thing they have of the records up to age 20 or so is the paperwork mama got from the hospital, so it's like all of the stuff that got me so readily approved 15 years ago. I may actually have to have my doc wean me off of them just to prove to the disability determination department that there's actually something wrong with me. But after the experience of withdrawal symptoms at work, and that one time I had to go two days taking only half dose of seroquel, the thought of weaning off terrifies me. Is a residential like a psychiatric hospital? Or is residential more like where they send people for rehab from drugs and alcohol? That seems like a place where they'd know how to deal with withdrawals.

That is an insane dose of Seroquel to be taking. I’m taking only 25mg of Seroquel at night and it seems to work well and help me get sleep so that I don’t go into mania with no side effects. If I were you I would taper down on the dosage to minimize side effects. I had to taper off Neurontin this summer,I was on 2500mg for 2 years and I got it down to 400mg, Although I did experience bad withdrawal symptoms, I can think clearer at a lower dose and it got rid of my tremors.