[BeyondtheRainbow]

I almost always (last year was an exception but I'd just begun clozaril and was having a lot of sedation from it that wore off later) get hypo/manic/mixed in June. A couple of weeks ago I felt things going up a little and lowered my AD dose (I'm allowed). It stopped everything, including the hallucinations that had begun.

I've never done that before. I've never been aware of an episode when it was so faint that just a tiny change like the AD adjustment fixed the whole thing. I've never had that ability. In the past I wouldn't have been aware until I needed big med changes. But clozaril works for me and somehow I was much more aware.

My pdoc is so happy that I did this. She's been treating me 14 years so that's a long time to wait for someone to manage to do something that everyone has been trying to teach me for years.

I hope this continues. I can't imagine living with the ability to stop episodes before they ramp up. It's as good as they have always said it would be.

[still_crazy]

my former shrink (its a clinic...the doctors come and go...) brought up clozapine. i declined because i was afraid of it. now, i wonder...

what's it like? I mean, compared to the other antipsychotics you've tried. how's your concentration? your emotions? does it help your mood or flatten it?

do you get eps? akathisia?

[BeyondtheRainbow]

I was afraid of it too but it ultimately became my only remaining option. We knew for a long time that was likely and about 18 months ago it happened, there was nothing left. I went on it 14 months ago. I chose to do it the hard but fast way; I went IP and did a rapid taper of high dose (1200 mg) Seroquel while getting on Clozaril. It wasn't pleasant but they kept me really sedated and let me stay in my room in the dark for nearly 2 weeks before I was well enough to come out.

The only 2 APs that really worked for me were risperidone which I'm allergic to and Seroquel which I was on for 8 years with the dose creeping up. After 14 months no dose creeping with clozaril; in fac I may get to decrease once my high risk mania period passes.

Concentration is about the same as the years on Seroquel after I lost a lot of cognitive stuff after being given a drug in surgery that rarely causes EPS. It's not great but it's not horrible. I can read a book though and follow a tv show. I can't take on a project requiring a lot of attention to task or memory. No way could I work, even if I didn't need a TON of sleep (right now 12-14 hours but we are working on that). It's much better than the last year I was on Seroquel while we desperately tried to avoid clozaril.

Most importantly it stopped my episodes. I have severe mixed episodes and cycle constantly on anything but clozaril. Probably 9, sometimes 12 months a year, I was in bad shape. Now I've had 2 small episodes if you even count my stopping this last one cold. I'm much more in control of my illness.

Emotions are present; no more flat affect and I feel pretty normal. My mood is better than it has been in a long time.

No EPS or akathesia. I'm very, very high risk for both and because of numerous times I've had issues my pdoc doesn't want me on drugs with a higher risk of either b/c I'm at a higher risk for TD with those reactions. I think Clozaril has a pretty low risk compared to other meds. But things like haldol are just off the table for me.

The side effects sound horrible but you get used to them. I gained around 20 lbs. With metformin I lost some but my family doc is worried about too much metformin lowering my blood sugar too much. The gain did stop after a few months. There is heavy drooling in the sleep. I know I'm getting ready to sleep when I start fighting drooling. It's gross until you are used to it; then you just accept that you do extra laundry. I've had trouble with occasional incontinence, especially in my sleep on a higher dose; I just wear a pad thing at night now. No big deal. That is just part of the sedation. At first it put me to sleep easily. Now it doesn't but that's another story. I do sleep a lot on it though and can't imagine that even mania will take away sleep because once I'm out I'm done.

Labs are no big deal. Weekly for 6 months, every other week for 6 months, monthly forever. I found a place that it takes less than 5 minutes, including wait times.

I would not take it if other drugs were options. Weight gain and sedation are not pleasant. But I also really don't care about those things as long as I feel good.