Thread: Please help
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Old Nov 04, 2015, 09:29 PM
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BeyondtheRainbow BeyondtheRainbow is offline
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I am in a very similar situation. It looks like you haven't been through the atypical antipsychotics and those help stabilize a lot of people (except abilify but there's geodon, latuda,zyprexa, risperdal, invega, saphris, seroquel/seroquel XR, and a new drug related to abilify called Rexulti). You've also not done typical anti-psychotics. One of them, loxapine, I was on this summer and it was chosen because it metabolizes into an anti-depressant on the way out of the body so it has some double power. It worked fairly well but I had a dangerous, rare side effect and had to stop it before getting the dose high enough. You've also not mentioned a number of anti-convulsants that can help: depakote, trileptal, tegretol, sometimes neurontin, sometimes topamax. I'm probably missing some.

It is true that those meds are sedating (some much more than others; loxapine wasn't sedating at all after a few days) but sometimes a sedating med can help your symptoms enough that you have more energy. Seroquel XR (and Seroquel before it) have had that effect for me until I had to go on extremely high doses. And you can combine them with meds that help sedation and have more success that way.

I have been running out of meds for years. Seroquel was a huge life-changer about 8 years ago and when the XR version came out it made things a lot better for me. But now Seroquel isn't working well on the highest dose I can tolerate and I've been waiting and hoping for Rexulti samples. If we don't get them soon I will have to give up and go on clozaril which is considered and marketed as a last resort drug. My dr checked on ECT for me but the dr who does it doesn't think it will work well and now I'm manic.

So you really aren't as out of options as you think. They may not all be ideal options but for a lot of them you can't know until you try and see how it affects you personally. You've got 2 classes you've not tried much/really at all and that gives you lots of hope still. I hesitate so make comments about what is sedating because my body is so weird but I believe Latuda, Invega? (haven't been on it) and Geodon are less sedating (once you are used to them. Most of these will be sedating the first bit). I know I didn't find risperdal sedating but I wasn't on it very long because I'm very allergic.

If this helps I've been doing this for a long time with treatment resistant bipolar, med allergies, a tendency to get rare side effects and so I've been on 40 drugs in 68 combinations (not counting dose changes) and I STILL have 2 drugs left to try after having to eliminate nearly all the old anti-psychotics due to a history of movement disorders that happened one too many times to make having it happen again a good idea. And I've had times that things have been controlled moderately to pretty well (and pretty well was pretty well to well and lasted a long time).

So don't give up yet. You're a long way from the end of the line. It is so hard to be patient when you are failing meds but you have more to try and that's a very good thing. For me the last several years have been a matter of "can we hold out until something new comes out and works?". And now that something new is out it is "can I hold out until my pdoc can get samples b/c my insurance won't cover it or will leave me with hundreds of dollars of co-pay?". The answer is probably not (it's very hard for my pdoc to get samples due to hospital policy) so I'm probably moving on the drug that we've been keeping as an option we knew was coming if pharmacetical releases didn't keep up with me, and that would be clozaril. And it's more likely to work than other things, it just requires a lot of monitoring because it rarely can lower your white blood cell count which could lead to infections. So hopefully it works for me and I don't try that rare side effect out along with all the others.
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Bipolar 1, PTSD, GAD, OCD.
Clozapine 250 mg, Emsam 12 mg/day patch, topamax 25 mg, ,Gabapentin 1600 mg & 100-2 PRN,. 2.5 mg clonazepam., 75 mg Seroquel and 12.5 mg PRNx2 daily