I could really use some advice here: my brother was just declared totally disabled today, and they’ll be sending the paperwork over to Medicare in about three weeks. The reason given is that his condition isn't in remission, plus he's got these bad tremors in his hands—they've been shaking pretty badly for a while now, though nobody knows why. I honestly think the "not in remission" part is what sealed the deal on him being declared unfit for work. My biggest worry is the medical side of things... what does this mean for his health coverage through Medicare now that he's officially considered disabled? Is his insurance going to be cut off? How is he supposed to get his treatment moving forward?
Dana Martin87, man, I totally feel you. I’m going through something almost identical right now.
I find myself checking this forum constantly because my brother just isn't getting any better. It’s a constant cycle—they swap his meds, change the combo, tweak the dosage, even bumped up his Moden injection from 25mg to 50mg... and honestly? It hasn't made a single bit of difference. It drives me absolutely insane... how is it even possible that none of these drug combinations actually work??????? He's been stuck in an extreme Psychotic state for two years straight now...
Thanks for all the input on Prozac... he ended up on it because even a higher dose of Seroquel wasn't doing the trick for a while. The delusions and aggression were just getting worse. Fingers crossed that Prozac finally helps him settle down!
Does anyone have the scoop on the 25mg Modiodol Depo injection? My brother just started it today because nothing from the Zypadhera we've been using for months has actually worked. He’s dealing with extreme delusions and aggression, and honestly, even though doctors rave about these "new generation" meds, nothing he's tried over the last year has helped him for more than five days a month. I know Modiodol is an "old school" drug and can come with side effects, but I'd love to hear what your experiences have been like. On top of this, he's taking 30mg of Azolar daily and a total of 250mg of Lamictal per day. Those two stay the same, but the Modiodol is the new addition to the mix.
So, this GP who handles his prescriptions tells him one day, "Hey, this antipsychotic is super pricey, so you probably shouldn't take it every day—maybe just every other day instead." Like, seriously? What kind of absolute idiot tells a patient with an F25 diagnosis that? And get this—it wasn't even the first time! She actually told another patient they were "too expensive" once, too. I wasn't there to film her or yell at her in the face, but man... what is going on with these primary care doctors lately?! If I could fire her or report her to the medical board or the IRS, I totally would, but honestly, where do you even go to file a complaint these days?
Yeah, he’s been driving for about 10 years now without any issues at all. But honestly, I don't see how he's going to pass a medical clearance when his doctor knows he's being treated for schizoafektivan disorder. It’s just one thing after another... isn't it enough that we're already worrying about his health 24/7? Now we have to deal with the system too.
Quick question about driver's license exams. What actually happens during those psychological evaluations? My brother was supposed to go this morning to get his commercial driver's license, but he totally froze up... He’s terrified the evaluator will "notice" that his mental health isn't quite 100%. He's been driving for years without a single accident or ticket, but he's also dealt with hand tremors since he was a kid, so he's just a nervous wreck right now. Anyone have experience with this or know what to expect? Please share!
Quick question: Why does a psychiatrist keep insisting someone is getting "top-tier" treatment when you're telling them the patient is basically struggling 28 out of 30 days every single month? We're talking constant agitation and psychosis from sunrise to sunset. They’ve been on this regimen for six months with zero progress. It doesn't matter how expensive or "gold standard" the meds are if they aren't actually working, right? Yet, the doctor acts totally offended whenever you suggest switching things up. Why the ego trip?
Aha, he’s using X in combination with Zypadhera injections. I’ll just focus on the last two years since that’s when we lost our dad, and honestly, his condition seems to have spiraled since then. First, he decided to quit Risperdal on his own. He’d been on it for years but absolutely hated it—complained it didn't work and made him gain weight, blah blah blah. He went off his meds for two months without us knowing, and we only found out when he told us he was terrified and needed a hospital. It was only then I realized he'd stopped everything. He tried getting back on it, but nothing has worked quite right since. At the start of this year, he ended up hospitalized because he had these episodes lasting about 3 or 4 months: intense anxiety, being verbally aggressive, overanalyzing every little thing, thinking he was getting messages through the TV, extreme paranoia... he even kicked people out of our yard because he thought they were there to spy on him. After spending two months in the hospital, they stabilized him by dropping his Seroquel to 300mg plus an injection, but just eight days later, things took a turn for the worse again. About a month ago, he was almost back to where he was before the hospital, so they bumped his Seroquel up to 600mg. Now, day-to-day, he’s still constantly restless. He mostly just stays in his room or comes downstairs to smoke and then starts, how should I put this, "venting"... yelling at people on the TV, or obsessively analyzing religious stuff (like seeing nuns at the local grocery store, which makes zero sense), plus all these other random connections I can't follow. He’s also still mildly aggressive toward my mom, calling her "crazy" or "stupid" and things like that. Then he’ll calm down for a bit, only for it to all start over the next day... though he does sleep great...
I'm honestly just so stressed out over his meds... that's why I keep asking. About ten days ago, he jumped from 300mg to 600mg of Seroquel, and while he seems a tiny bit calmer now, he's still having episodes every single day.
Honestly, I think it’s such a huge step forward that someone would actually reach out online for help or comfort, even when things are hitting rock bottom. His illness has been an absolute wrecking ball—it's torn apart him, my mom, me, our relationships... just everything.
He's a completely different person now. It’s like the brother I used to have just... died. Honestly, you guys seem so much better to deal with here, probably just because you actually write things out and communicate...
He’s really just drifting through life, you know? No interest in anything at all—no friends, nothing. We even moved to a new city where we don't know a single soul. He’s been struggling for about ten years now, and since then, he’s had zero social life, no girlfriend, no sex, no hobbies... just total isolation. 🙂
What doses of Seroquel are you guys on? And how many times have you had to switch up your meds over the last five years? My brother went from 300 up to Seroquel 600, and he was doing great for five days before things crashed again.
I posted here a little while ago, so here’s a quick update on my end: My brother ended up in the hospital back in February and stayed there for about a month. He’s slowly recovering, but his diagnosis was schizoaffective disorder with mania. When he got discharged, his meds were set at a 500mg Zypadhera injection, 300mg Seroquel XR, some Lamictal (not sure of the dose), and Normabel (dosage unknown, plus as needed). It’s been six months now, and honestly, things were okay for maybe ten days after he left, but then they got bad—worse, actually. Now he’s pretty much right back where he was before the hospital, when we couldn't even control his behavior. While he was inpatient, they had him on 600mg of Seroquel, but they lowered it when he was released? I have to ask again: Is it actually possible for him to be immune to these meds? The doctor keeps insisting that the injection is ABSOLUTELY INCREDIBLE for wiping out his symptoms, and since he’s on Seroquel too... it feels like we're just spinning our wheels!! Every single time I feel like I finally see a glimmer of hope, the next moment just crushes me for the following two months...
Yeah, I suggested he look into psychotherapy once he's out [and there's that part of me again, trying to control everything because I just want him to feel better], but he’s totally not interested. He never was. He just says, "...I'm not about to go lie on some couch and talk about all this." Now, if I start pushing or forcing him into it, isn't that just doing it for myself instead of him? It feels like everyone else I know would give anything to actually get into therapy...
Hey everyone! I noticed things have been a bit quiet lately, so I'm assuming you're all doing pretty good 🙂🙂 On my end, the situation is still basically just waiting on my brother, who’s been in the hospital for a month now. "Think" he's doing better? Well, sure, I can tell there's progress, but we won't really know for sure until he gets discharged this weekend. They wouldn't let him come home the last two weekends—the first time was because he didn't react well to things, and the second time it was just because he was finally calm enough. Anyway, he's on this specific med combo right now that includes an injection once every two weeks, then moving to every four weeks. 4. Seroquel, Lamal, Zyprexa, Xanax, and that injection.
Honestly, I've got my own stuff to deal with too; being raised by an alcoholic means I've been carrying those scars my whole life. One side effect is that I've always overextended myself worrying about everyone else instead of focusing on me. It's the same with my brother—I'm constantly spiraling, thinking about how he is, if he'll get better, what happens if he doesn't, if he'll ever marry, or if I'll be stuck taking care of him forever, or if I'll end up alone because of it... you name it. Trying to live ten years in the future is just exhausting! I don't think I ever truly accepted that he's sick, even though it's been 12 years now. So, I finally decided to start looking out for myself a little more, starting with accepting the reality: MY BROTHER IS ILL, and that's just it. He is who he is, and we're just taking it one day at a time, rather than trying to jump ten years ahead.
That's all from me, just needed to pop in and vent a little
I get what you mean. Things seem "better," but every time I check on him, I notice his chest is heaving pretty fast... like his heart is racing. Back when he was hospitalized for the psychosis, his pulse was sitting at 120-160 for weeks straight. I brought the monitor over today to check him myself, and boom—130! He swears he doesn't feel restless or even notice his breathing is shallow, except maybe when he's lying down. I keep asking if he's feeling tense or if something's bothering him, but he just says no... Anyway, I’m planning on calling the on-call doctor tonight to let her know I'm worried, since his pulse hasn't really settled down since he got here.
David Vaughn75 said:First off, antipsychotics don't just kick in overnight—it takes weeks for them to even start working, and recovering from a full-blown psychotic episode is a marathon that lasts months.
And second, there's always the chance the doctors totally missed the mark with the treatment plan, which, let's be real, happens way more often than people want to admit.