[BeyondtheRainbow]

(Backstory for those who don't know: I have to come off Seroquel XR b/c it is no longer working and I'm going on Clozaril. You can't be on both at the same time b/c it can cause heart problems.)

And yes, I've asked about the super high dose taper before but I keep asking because maybe the one other person who has done this will stumble along here. Sorry.

I did some reading about coming off Seroquel. And I am afraid. My pdoc honestly told me that psychiatrically I'll be a mess and that in general I won't feel well but one article I read referred to a "high dose" as 300 mg (I'm on 1200 mg) and listed that I have nearly a 100% chance of nausea/vomiting, severe insomnia (that I figured), brain zaps, restless legs/agitation that sounds like akathesia, weight loss or unexplained weight GAIN despite being sick and it sounds like not eating much, etc. Plus all the psychiatric crap.

I keep thinking I'm going into this with a severe mixed dx. What on earth is going to happen when that is turned loose?

I have to do this. Doing it this way makes more sense and will allow them to sedate me if it is really bad. But I am really scared. I didn't ask my pdoc how long I'd be IP. I'm assuming a couple of weeks more or less since it should take a few days to get off the Seroquel and a few more to get the Clozaril doing anything.

I need to make a list of final questions for my pdoc. But still interested in anything anyone experienced going off Seroquel, the more the better.
Thanks

[PumpkinPieHead]

I have no experience with Seroquel, but I wish you luck with your taper...many blessings and good juju coming your way, love x 1000000

I've gone off Seroquel but that was only about 350 mg. However I'm still tapering off Zyprexa and I was on a high dose - 25 mg (20 mg is generally considered to be the highest dose). I'm currently on 10 mg, although I've spent a couple of days on 7,5 mg but that wasn't much of a success - however, when that happened I was also concurrently tapering off an AD so that doesn't say much. I'll be going down to 7,5 mg again in 4 days.
I'm mostly worried about insomnia, I had terrible insomnia when I started Zyprexa (I took a sleep med, lay awake for a couple of hours, slept for 1-2, took a sleep med, lay awake for another couple of hours, slept for 1-2 hours) and Zyprexa cured me of that instantly. Pdoc is mostly worried about psychotic thoughts/psychosis and 'mental restlessness' (no idea what you call that in English - it's not my first language).

I hope your taper goes well.

[BeyondtheRainbow]

Thanks. Your English was perfect.

Insomnia definitely scares me. It's one reason I'm doing the taper IP; they can give me drugs I can't take at home. I can't take typical APs because I've had issues with them that make it too risky but IP I can probably be given Haldol or something if I need it.

After the taper I'm going on Clozaril which my pdoc says isn't as sedating as Seroquel. So there will probably be some hunting for something to get me to sleep that I can actually take and that works (a lot of the normal options are out b/c I'm on an MAOI).

I keep reciting "the hospital willnot let you go without sleep for days upon end, the hospital will not let you go without sleep for days on end" and eventually maybe I'll believe it. One of the things that has been most effective for sleep in the past is valium but Im already on klonopin. The pdoc who always has been on this unit has left now but he hated benzos so there was no way he'd give 2 at once. It will be interesting to see what whoever is covering when I am admitted thinks.

That's funny, as the second opinion doc at the university hospital who recommended the Clozapine told me that clozapine is more sedating than zyprexa.. which I found to be more sedating than seroquel. On the other hand, I read somewhere that seroquel is more sedating than zyprexa.. maybe I'm just the odd one out.
I hope that clozapine is sedating enough for you so that you can sleep.

[BeyondtheRainbow]

Well, zyprexa did not make me the least bit sleepy so maybe she's counting that in her description. And that she wants me on 200 mg and no more if possible which is a pretty small dose. But I'm very, very hard to sedate so she is probably referring to me and her knowledge of what it has taken to sedate me in the past. I guess I should say that remark is probably specific to me.