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Old Apr 25, 2015, 05:53 PM
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BeyondtheRainbow BeyondtheRainbow is offline
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Member Since: Apr 2015
Location: US
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I was slightly wrong--I'm on 1500 mg (which is pretty much just as ridiculously high). And my psychiatrist told me today that she's had people on more than that and so I don't have to worry that I need to come down right away.

I should say that my psychiatrist has a few special qualifications. One is that she is a pharmacists as well as a psychiatrist. So she understands medications in a different way. She also mostly treats difficult to treat patients. And she works for Cleveland Clinic so she has the resources and people's ongoing research to back up many things that are probably unusual (but which I no longer think about being that at all which weird to see through others' eyes). A few years ago I wasn't getting a lot better and she just set up appointments with 2 of the top drs in the world. I never actually went to them b/c I wound up in the hospital instead (I saw one in the hospital one day but not for the consult that had been planned). There is a dr in Cleveland who is one of the top if not THE top expert on bipolar in the US/world. I was able to do a clinical trial with him when I was first diagnosed and she's consulted with him a few times on med ideas for me when options were slim as well.

So she's in a position where she feels safe doing this kind of radical thing. She's always said that I was on as much as she wanted to give me but apparently (I'll have to ask this) that meant "unless an emergency comes up". I know it really helps that she knows so much about drugs and how they work and also that she has the support of a huge and excellent institution. It makes her perfect for me; a dr who wasn't willing to be creative would have run out of options for me a long time ago. If the circumstances weren't as they are I am not sure I'd feel as safe with something this extreme.

I do not want to stay on this much Seroquel for too long because I don't want to gain the weight and it is hard on my stomach and digestion. So I am going to talk to her at my next visit about gradually transitioning to being partly on Latuda and partly on Seroquel and maybe having a little less drastic dose but also having more wiggle room with both. I don't really want to be on 2 APs but I'd rather be on a lower dose of that and be able to increase it than to be reliant on Seroquel when this much of it is necessary to just barely be ok. Plus a lot of meds is a lot of meds whether it is one med that is really high or two that are more moderate. I don't know what she'll say but I'm concerned for good reasons. I am likely to get manic in June, I nearly always do. And there is a very, very painful event that is going to happen in my family anytime now that will be very hard to get through and which already tore my family in 2. So I need to have the ability to adjust meds when those things happen.

There was a long time I was on 600 mg but I had 50 mg tablets available and was allowed to adjust my dose up to 900 mg as I needed. That was nice because I could go to 900 for a week or two and then back down again and do well. I was still constantly cycling and mixed but in that period of time I was functioning really well and responding to meds better; everything was at a lower level than ever before. It was nice.

Now of course I can't just mess with the dose at will. But when I had that freedom it felt so good because it was like I was really in control to some extent.

If you ever feel like you want more freedom I think a lot of teaching hospital drs are more open, at least from what I have encountered with my dr and with both those in the clinical trial years ago and when I've been in the hospital and seen either the hospital dr or someone covering for him. Nobody has ever shown much surprise at what I take (except for the amount of stool softeners and senna I was taking the first time I was in the hospital; it WAS a lot). The hospital dr likes to get people off benzos but has kept me on mine except when I was suicidal and the

*trigger*

Possible trigger:


so I was off them for a few weeks. But mostly he's left them alone mostly because I've been on them for many years and I imagine because she's told him I do need them. I have no idea if he'd agree to my current 2 benzo mix but I like to think if I wind up there he'll agree that it's an extreme situation and that I don't take both very often except for right now and similar times.
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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