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Default Dec 31, 2019 at 07:02 AM
  #1
Hello, all. I am seeing my pdoc on Friday and we will be discussing my apparently somewhat persistent mania as well as my not long-ago psychotic episode(s). I currently take 1200 of long-acting lithium, which I believe saved my life in 2008, when I started it. Also now on 30 mg of Abilify and 25 mg qHS of Seroquel--both restarted and started (respectively) this past month. I have been on Wellbutrin 300 continuously (extended release) since 2012--this time. Have been on and off Provigil since 2010, depending on whether I have had insurance coverage and also whether the generic had yet been released. It is very expensive. I also have an Rx for Zyprexa 10-15 mg for emergency sleep issues.

My current major issues are: 1) I became extremely psychotic in early December--first psychosis since I was in the hospital in 2016; 2) Along with that psychosis, I was quite manic; 3) The psychosis and the mania have both persisted despite resuming Abilify (I was not on a dedicated AP when I became psychotic--more on that below) and adding a quite low dose of Seroquel at night and also having prn Zyprexa available; 4) Sleep is basically and has been for a few months, a crisis. I cannot fall asleep unless I am virtually stumbling with exhaustion and I cannot stay asleep. I have been on the vast majority of meds used for sleep and at this point, nothing but maybe 600 mg of Seroquel would probably put me to sleep--and I will not do that for metabolic reasons. I am thin and want to stay that way, not for vanity, for cardiac health, mostly. 5) I did become manic in 2005 while on both Cymbalta and short-acting Wellbutrin. Problem here is that Wellbutrin is one of almost no antidepressants that has worked for my depression reasonably well. Were we to stop it, I literally fear for my life. But, if I have to , I guess I will. Not sure what Dr. C is going to say on that. I do have serious suicide attempts in my past while in massive depression.

So, given all this, I am looking for people to share experiences, should they wish to, about what might have worked for you for mania +/- psychosis in the past--or present, even. Also, how do you deal with your sleep situation? I purchased a pretty nice 20-lb weighted blanket. I think quite honestly that my sleep is currently so messed up that it is impossible to know how much or if the blankie will help. I am hopeful.

Now, couple last things. We have d/c'd the Provigil for a couple of weeks and the sleep did not improve. Plus, I have slept fairly well for years--close to 10--while on it, though I recognize that does not mean it might not be an issue now. But stopping it seems to indicate it may not be related to the current sleep stuff. I can't take Lamictal--bad side effect in past. Also, I stopped my own Abilify because I could not sign my name, so bad was my movement problem in my hands. It was frustrating and embarrassing. I became psychotic as a direct result of this decision, so I now know I cannot be off all antipsychotics. Lastly, I have never taken Haldol or Thorazine or Clozaril, but would be willing to do anything--including the dreaded Clozaril.

So, there you go. Sorry this is so long. Many thanks to anyone with any feedback you deem appropriate.

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Default Dec 31, 2019 at 07:35 AM
  #2
Hey @bpcyclist I have never had psychosis but I have a personal opinion about managing bipolar with meds. IME and from talking with people in my life with bipolar it seems like we do much better with an SNRI and mood stabilizer and antipsychotic rather than tricylics or SSRI's. I take cymbalata, lamictal, geodon and buspar. The buspar is for anxiety. It takes awhile to work but one day I woke up after about 4 weeks on it and didnt feel the crushing weight of anxiety. The other combo, cymbalta, lamictal and geodon saved my life. 15 years ago I went inpatient after suicidal issues and they started me on that and it was like a light switched on in a dark room. In 4 days I was like a whole new person and was discharged. I am not saying I have any science to back this up, its antecdotal but I think because SNRI's target the dopamine, seratonin and norepinephrine is the reason why they are so successful for bipolar. But its JMO.
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Originally Posted by bpcyclist View Post
Hello, all. I am seeing my pdoc on Friday and we will be discussing my apparently somewhat persistent mania as well as my not long-ago psychotic episode(s). I currently take 1200 of long-acting lithium, which I believe saved my life in 2008, when I started it. Also now on 30 mg of Abilify and 25 mg qHS of Seroquel--both restarted and started (respectively) this past month. I have been on Wellbutrin 300 continuously (extended release) since 2012--this time. Have been on and off Provigil since 2010, depending on whether I have had insurance coverage and also whether the generic had yet been released. It is very expensive. I also have an Rx for Zyprexa 10-15 mg for emergency sleep issues.

My current major issues are: 1) I became extremely psychotic in early December--first psychosis since I was in the hospital in 2016; 2) Along with that psychosis, I was quite manic; 3) The psychosis and the mania have both persisted despite resuming Abilify (I was not on a dedicated AP when I became psychotic--more on that below) and adding a quite low dose of Seroquel at night and also having prn Zyprexa available; 4) Sleep is basically and has been for a few months, a crisis. I cannot fall asleep unless I am virtually stumbling with exhaustion and I cannot stay asleep. I have been on the vast majority of meds used for sleep and at this point, nothing but maybe 600 mg of Seroquel would probably put me to sleep--and I will not do that for metabolic reasons. I am thin and want to stay that way, not for vanity, for cardiac health, mostly. 5) I did become manic in 2005 while on both Cymbalta and short-acting Wellbutrin. Problem here is that Wellbutrin is one of almost no antidepressants that has worked for my depression reasonably well. Were we to stop it, I literally fear for my life. But, if I have to , I guess I will. Not sure what Dr. C is going to say on that. I do have serious suicide attempts in my past while in massive depression.

So, given all this, I am looking for people to share experiences, should they wish to, about what might have worked for you for mania +/- psychosis in the past--or present, even. Also, how do you deal with your sleep situation? I purchased a pretty nice 20-lb weighted blanket. I think quite honestly that my sleep is currently so messed up that it is impossible to know how much or if the blankie will help. I am hopeful.

Now, couple last things. We have d/c'd the Provigil for a couple of weeks and the sleep did not improve. Plus, I have slept fairly well for years--close to 10--while on it, though I recognize that does not mean it might not be an issue now. But stopping it seems to indicate it may not be related to the current sleep stuff. I can't take Lamictal--bad side effect in past. Also, I stopped my own Abilify because I could not sign my name, so bad was my movement problem in my hands. It was frustrating and embarrassing. I became psychotic as a direct result of this decision, so I now know I cannot be off all antipsychotics. Lastly, I have never taken Haldol or Thorazine or Clozaril, but would be willing to do anything--including the dreaded Clozaril.

So, there you go. Sorry this is so long. Many thanks to anyone with any feedback you deem appropriate.

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Default Dec 31, 2019 at 07:43 AM
  #3
Thanks very much, @sarahsweets. I really appreciate your perspective. That is exactly the type of information I am looking for. Seems like I also did pretty well on Cymbalta, though that was a long time ago--almost 15 years. Still, you give me much to think about. Thanks a million!!

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Default Dec 31, 2019 at 02:44 PM
  #4
I do really well on thorazine, it's gotten rid of both my mania and psychotic symptoms in conjunction with abilify and an anticonvulsant mood stabilizer

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Default Dec 31, 2019 at 05:20 PM
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Hi bpcyclist. I will only share my experiences, which are likely not the same as many people's. As for antipsychotic recommendations, that's ditto.

The turning point for the control of my bipolar mania and mania with mixed features (and any resulting psychosis) was stopping antidepressants once and for all. I can't say with 100% certainty that I wouldn't have one suggested in the future if I had severe stubborn depression, but I am certainly hesitant to accept one. I have not had a severe long-term depression for about 9 years. Prior to that, other than severe mixed states, mostly on the manic end (many with psychosis), I hadn't had a significant pure depression since maybe 1996, when I lived in Taiwan. There, I was taken to the hospital and they surely put me on an antidepressant, or who knows what. Within a couple weeks I quit my job, losing hundreds of dollars, and started traveling around Asia by myself manic, having sexual flings with a couple men. I was 25 years old, at that time. I'm a woman.

I have had short periods of low grade depression with hypersomnia within the last 9 years. Maybe 6 and 7 years ago, especially? I was trialed on Provigil three times. The first time I couldn't' afford it beyond the trial package. The second time, I started to become manic within a week or so, and was taken off. The third time, I started to abuse the Provigil and became so manic on a vacation to Maine that my husband threatened to take me to a hospital there. That mania lingered and all kinds of crap happened.

Putting the above experiences aside, I have been activated even by other medications. Lamictal is very activating for me, but I have taken 100 mg for about 9 years now as a sort of antidepressant, but with plenty of antimanics with it. Above 100 mg and I can often become manic. Abilify was either activating or useless for me at preventing mania. What made it worse was that at one time I took 300 mg Lamictal with some dose of Abilify. That was pretty bad and sparked a series of severe manias (and mixed states) with psychosis with about 5 hospitalizations almost in a row.

When it comes to effective antimanics for me, Depakote, Seroquel, Seroquel XR, Risperdal, Invega, Zyprexa, Geodon (but not fully), Trilafon (aka perphanazine), and Navane (but not fully aka thiothixene), were all helpful. Depakote pushed me from severely manic to pure depressed, so I called it "Depressakote". I took Invega then, too. I ended up needing ECT and was the heaviest in my life at that time, and far worse blood work results than I have now. Unfortunately, none of the antpsychotics were perfect for me in terms of side effects. It's been more a matter of "the lesser of the evils", my ability to tolerate them (and I think I'm more tolerant than most people), and other factors. The truth is, I've had a choice to make. What is worse? My bipolar disorder or the side effects of the "lesser of the evils" medications? In my case, the "lesser of the evils" medications are indeed less evil than my bipolar disorder.

I also take Tegretol XR (carbamazepine ER) and Latuda in addition to Seroquel XR, and the small dose of Lamictal. I think the small dose of Latuda is more of an antidepressant-like antispsychotic than anti-manic for me, but it isn't really activating. Tegretol XR? I don't know, but I take it because it rid me of a year-long period of musical hallucinations and symptoms that resembled Simple Partial (focal) seizures. Kisses to Tegretol XR! Plus, its side effects are very minor for me (some clumsiness).

I do think that my Seroquel XR contributes to my elevated cholesterol. Sometimes, if I don't eat right for a while, I also have elevated triglycerides. I've been on doses of 450 to 600 mg of Seroquel XR for about 7 years now. I am overweight, but I almost never exercise and my diet is not perfect. I know some gain extreme amounts of weight, but I have stayed within 10 to 20 lbs of a normal BMI on these doses for these years.

For anyone interested, when I was taken off Depakote ER and Invega after my ECT, I was put on Lithium (900 mg), Lamictal (100 mg), Tegretol XR (1,400 mg), Geodon (160 mg), and soon after Navane (up to 10 mg). All together. During the 6-month period on that new behemoth mix, I was able to lose 40 lbs. As I said, I've maintained all but 10 to 20. I needed the big mix to tame my mania again, but was able to go off some of the medications (severe side effects). My current mix (see signature below) is pretty easy to live with. Yea, I have high cholesterol and break about 6 things per month from clumsiness, but that's about it. I am trimmer than my siblings and parents were at my age (or now), and of them, only my sister takes an antipsychotic (Abilify, which was weight neutral for me). Folks in my family are not Skinny Minnies. If you google "average weight of women in the US", my weight will show up. So...even Seroquel XR isn't a total evil weight gainer from hell for everyone. Plus, if I bicycled 5 miles, four times per week, and ate a bit better, my cholesterol might not be that bad. Maybe other peoples' still would be. So far my docs still say I'm low enough risk not to take a statin. My blood pressure is usually close to normal.

I do hope to go on a diet and exercise in 2020. My husband really needs to, as well. My resistance is likely no more than the average woman my age (late 40s).

I do sleep well on 600 mg of Seroquel XR. I get about 8 or 9 hours.

Last edited by Anonymous46341; Dec 31, 2019 at 05:37 PM..
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Default Dec 31, 2019 at 07:26 PM
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I want to acknowledge your post, bpcyclist. Unfortunately, I'm struggling (as usual) with my own med situation. I can say that I agree with sarahsweets about the SSRI/SSNI. SSRI's always made me manic. I'm on an SSNI (Pristiq) now and to my great surprise it pulled me out of a vicious depression last winter. It seems to have maintained all year, with no noticeable side effects.

As for the rest, I'm fed up with being told I have a disorder just because I have more passion and intensity than most other people do. I'm angry that I have to fit in, but I'm also angry because I am different from most people. It's all just Talk about an existential dilemma....

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Default Dec 31, 2019 at 11:17 PM
  #7
I've been on clozapine for 4 years. I was really afraid of it before I started and anxious about all the labs. But honestly it hasn't been bad at all and that drug works. Nothing has ever really worked for me and here I am 6 weeks out from my last IP stay.

The blood draws are annoying in the first 6 months when they are weekly but honestly I don't even remember that part. I asked my family dr where the fastest lab was and usually I'm in and out in less than 10 minutes, often less than 5 minutes.

It really, really helps me with sleep. It is great with mania because just half of a tab extra bounces me right back to where I should be, albeit drugged for a while. The last time we had to do that I just took the higher dose for 4 days and then back to normal and it was fine. Nothing has ever stopped mania that fast.

I've had only minor depression on it and that includes when my (estranged) father died.

It really, really works. I would not go off it for any reason I can thinks of aside from the low WBC that happens rarely.

The only other bad things are drooling at night which you just learn to deal with and I have some incontinence when I don't wake up fast enough at night so I wear a pad at night. Neither is a big deal.

I gained a bit of weight initially but it came right off with metformin.

Compared to other drugs that have caused all kinds of problems it is pretty much perfect; it causes the side effects it says it is going to and that's it.

I resisted trying it for as long as possible but once I did I was glad I did. It's really not that bad at all.

If you really, really want to avoid it have you tried loxapine? It's kind of neat as it metabolizes into amoditine which is tricyclic. So it gives a boost of AD action while working as an AP. I had to come off before I got a full response because of EPS sx but that's rare. It's a nice drug because it really doesn't have side effects (unless you are me). It also has a huge response range which it good for titrating the perfect dose. It's not used much anymore but I liked it until I didn't.

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Default Jan 01, 2020 at 07:52 PM
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Originally Posted by Blue_Bird View Post
I do really well on thorazine, it's gotten rid of both my mania and psychotic symptoms in conjunction with abilify and an anticonvulsant mood stabilizer
We have discussed it. Does it help with your psychotic symptoms? I am having a lot of difficulty with scary voices and paranoia again today. I calmed myself down, but I am scared. Maybe thorazine would help.

I've been on Tegretol and Depakote before and I just cannot do them--I am in an almost catatonia-type situation with those two. It's basically like mega-dose Remeron, if that measn aything to you. What about newer adapted anti-seizure meds--any opinion of them?

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Default Jan 01, 2020 at 08:29 PM
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Originally Posted by BirdDancer View Post
Hi bpcyclist. I will only share my experiences, which are likely not the same as many people's. As for antipsychotic recommendations, that's ditto.

The turning point for the control of my bipolar mania and mania with mixed features (and any resulting psychosis) was stopping antidepressants once and for all. I can't say with 100% certainty that I wouldn't have one suggested in the future if I had severe stubborn depression, but I am certainly hesitant to accept one. I have not had a severe long-term depression for about 9 years. Prior to that, other than severe mixed states, mostly on the manic end (many with psychosis), I hadn't had a significant pure depression since maybe 1996, when I lived in Taiwan. There, I was taken to the hospital and they surely put me on an antidepressant, or who knows what. Within a couple weeks I quit my job, losing hundreds of dollars, and started traveling around Asia by myself manic, having sexual flings with a couple men. I was 25 years old, at that time. I'm a woman.

I have had short periods of low grade depression with hypersomnia within the last 9 years. Maybe 6 and 7 years ago, especially? I was trialed on Provigil three times. The first time I couldn't' afford it beyond the trial package. The second time, I started to become manic within a week or so, and was taken off. The third time, I started to abuse the Provigil and became so manic on a vacation to Maine that my husband threatened to take me to a hospital there. That mania lingered and all kinds of crap happened.

Putting the above experiences aside, I have been activated even by other medications. Lamictal is very activating for me, but I have taken 100 mg for about 9 years now as a sort of antidepressant, but with plenty of antimanics with it. Above 100 mg and I can often become manic. Abilify was either activating or useless for me at preventing mania. What made it worse was that at one time I took 300 mg Lamictal with some dose of Abilify. That was pretty bad and sparked a series of severe manias (and mixed states) with psychosis with about 5 hospitalizations almost in a row.

When it comes to effective antimanics for me, Depakote, Seroquel, Seroquel XR, Risperdal, Invega, Zyprexa, Geodon (but not fully), Trilafon (aka perphanazine), and Navane (but not fully aka thiothixene), were all helpful. Depakote pushed me from severely manic to pure depressed, so I called it "Depressakote". I took Invega then, too. I ended up needing ECT and was the heaviest in my life at that time, and far worse blood work results than I have now. Unfortunately, none of the antpsychotics were perfect for me in terms of side effects. It's been more a matter of "the lesser of the evils", my ability to tolerate them (and I think I'm more tolerant than most people), and other factors. The truth is, I've had a choice to make. What is worse? My bipolar disorder or the side effects of the "lesser of the evils" medications? In my case, the "lesser of the evils" medications are indeed less evil than my bipolar disorder.

I also take Tegretol XR (carbamazepine ER) and Latuda in addition to Seroquel XR, and the small dose of Lamictal. I think the small dose of Latuda is more of an antidepressant-like antispsychotic than anti-manic for me, but it isn't really activating. Tegretol XR? I don't know, but I take it because it rid me of a year-long period of musical hallucinations and symptoms that resembled Simple Partial (focal) seizures. Kisses to Tegretol XR! Plus, its side effects are very minor for me (some clumsiness).

I do think that my Seroquel XR contributes to my elevated cholesterol. Sometimes, if I don't eat right for a while, I also have elevated triglycerides. I've been on doses of 450 to 600 mg of Seroquel XR for about 7 years now. I am overweight, but I almost never exercise and my diet is not perfect. I know some gain extreme amounts of weight, but I have stayed within 10 to 20 lbs of a normal BMI on these doses for these years.

For anyone interested, when I was taken off Depakote ER and Invega after my ECT, I was put on Lithium (900 mg), Lamictal (100 mg), Tegretol XR (1,400 mg), Geodon (160 mg), and soon after Navane (up to 10 mg). All together. During the 6-month period on that new behemoth mix, I was able to lose 40 lbs. As I said, I've maintained all but 10 to 20. I needed the big mix to tame my mania again, but was able to go off some of the medications (severe side effects). My current mix (see signature below) is pretty easy to live with. Yea, I have high cholesterol and break about 6 things per month from clumsiness, but that's about it. I am trimmer than my siblings and parents were at my age (or now), and of them, only my sister takes an antipsychotic (Abilify, which was weight neutral for me). Folks in my family are not Skinny Minnies. If you google "average weight of women in the US", my weight will show up. So...even Seroquel XR isn't a total evil weight gainer from hell for everyone. Plus, if I bicycled 5 miles, four times per week, and ate a bit better, my cholesterol might not be that bad. Maybe other peoples' still would be. So far my docs still say I'm low enough risk not to take a statin. My blood pressure is usually close to normal.

I do hope to go on a diet and exercise in 2020. My husband really needs to, as well. My resistance is likely no more than the average woman my age (late 40s).

I do sleep well on 600 mg of Seroquel XR. I get about 8 or 9 hours.
BirdDancer, I want to thank you sincerely from the bottom of my heart for taking all that time to share so much of your med story with me. That can't have been an entirely pleasant post to write and I really, really appreciate you for that time and effort to try and help me out. And you certainly did.

Yeah, you are killing me with the Depressakote. Can't ever do that or Tegretol again. Nearly killed me with zombieism and mega-SI. Lamictal, had the SJS/burn unit visit. Good times being a dermatologist in my own burn unit. Been on almost all the atypicals, and I do think the current Abilifry, little bit of Serokill, and some emergency/911/freakout Zyprexa on-hand are helping, but I am clearly having breakthrough mania + psychosis. Fascinating hearing you describe your kind of overall illness trajectory. Mine has been quite different, except for one key nearly identical fact: my mania will kill me if it is not quashed, like, instantaneously Won't bore you with what I've done/almost done, as you have already been there and done that. Bad. Really, really dangerous. I am just a madman when seriously manic.

Now, my overall trajectory has been, over the decades since childhood onset of my bp 1, shifting from depression-dominated to mania PLUS concomitant psychosis-dominated now. Weird how the same disease can change over time. So odd. Anyhow, this is why you see my post as it is. The mania will kill me. The psychosis is unlikely to, as I usually just hunker down in bed and pray and breathe and don't do anything else for days or until it lets up. So, it's misery, but it is not nearly as dangerous to my life expectancy as the mania.

Which brings us to depression. If we were to permanently or even temporarily d/c my Provigil and/or Wellbutrin again, I can pretty much guarantee a massive depression to follow quickly. That has been my pattern. I have been on so many antidepressants that I could not identify them all without all my charts to go through and help me recall. I laugh at MAO Inhibitors. They are like water. So, this is dangerous territory for me. I have multiple, extremely serious S attempts in my past. Details unimportant, except to say that the fact that I am alive and writing this is truly, truly a miracle. A gift. I don't want to lose that.

The only time I have almost for sure gotten manic while on antidepressants was in July of 2005. I was on Cymbalta, Short-acting Wellbutrin, and 60 a day of XR Adderall, so, a lot of activating stuff. I went straight to hospital for a month. Zyprexa, was doing pretty well on discharge. But my shrink at the time was so freaked by my mania, that she, of course, refused to treat my depression with antidepressants again, which led to S attempt #'s 1 and 2. See the pattern here?

So, it's push-me, pull-me with me. We don't manage my depression, it's life-threatening. We don't manage my mania, it's really, really life-threatening. We put me in a coma, it's life-threatening. On and on and on.

This is way too long and needs to end. Sorry. Just wanted you to sorta see what my particulars have me facing today. At the moment, priority number 1 is sleep and mania control, equally. Number 2 is not to induce depression/more SI by whatever moves we make. Number 3 is mitigating psychosis. But really, for any kind of quality of life, we have to do all three. Seeing the brilliant Dr. C on Friday. I know he has been thinking about this. We'll see. Not giving up yet. Thank you again so very much for your insights and your openness.

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Default Jan 01, 2020 at 08:36 PM
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I want to acknowledge your post, bpcyclist. Unfortunately, I'm struggling (as usual) with my own med situation. I can say that I agree with sarahsweets about the SSRI/SSNI. SSRI's always made me manic. I'm on an SSNI (Pristiq) now and to my great surprise it pulled me out of a vicious depression last winter. It seems to have maintained all year, with no noticeable side effects.

As for the rest, I'm fed up with being told I have a disorder just because I have more passion and intensity than most other people do. I'm angry that I have to fit in, but I'm also angry because I am different from most people. It's all just Talk about an existential dilemma....
I'm sorry, Beth. I know. I do know. People just don't get us. It's why I spend so much time on PC--you guys do get it. I will have to look into Pristiq and see if that is a maybe possibility.

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Default Jan 01, 2020 at 08:43 PM
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Originally Posted by BeyondtheRainbow View Post
I've been on clozapine for 4 years. I was really afraid of it before I started and anxious about all the labs. But honestly it hasn't been bad at all and that drug works. Nothing has ever really worked for me and here I am 6 weeks out from my last IP stay.

The blood draws are annoying in the first 6 months when they are weekly but honestly I don't even remember that part. I asked my family dr where the fastest lab was and usually I'm in and out in less than 10 minutes, often less than 5 minutes.

It really, really helps me with sleep. It is great with mania because just half of a tab extra bounces me right back to where I should be, albeit drugged for a while. The last time we had to do that I just took the higher dose for 4 days and then back to normal and it was fine. Nothing has ever stopped mania that fast.

I've had only minor depression on it and that includes when my (estranged) father died.

It really, really works. I would not go off it for any reason I can thinks of aside from the low WBC that happens rarely.

The only other bad things are drooling at night which you just learn to deal with and I have some incontinence when I don't wake up fast enough at night so I wear a pad at night. Neither is a big deal.

I gained a bit of weight initially but it came right off with metformin.

Compared to other drugs that have caused all kinds of problems it is pretty much perfect; it causes the side effects it says it is going to and that's it.

I resisted trying it for as long as possible but once I did I was glad I did. It's really not that bad at all.

If you really, really want to avoid it have you tried loxapine? It's kind of neat as it metabolizes into amoditine which is tricyclic. So it gives a boost of AD action while working as an AP. I had to come off before I got a full response because of EPS sx but that's rare. It's a nice drug because it really doesn't have side effects (unless you are me). It also has a huge response range which it good for titrating the perfect dose. It's not used much anymore but I liked it until I didn't.
Will check into Loxapine--don't hear much about it here. I am so glad you have finally seemed to have found something that is working for you, Beyond. My pdoc has been dangling Clozaril in front of me for some months, been quite suicidal at times, but I've been resisting, partly, quite frankly, because I don't know if I can afford it. I know it sounds ridiculous for a retired doc to be in this position, but I support about 7 people (including me) off my current income and I am last in line. Kids come first, etc. So, with all the frequent blood draws and stuff, I would really have to pencil it out and see if I can manage it. But if I have to do it, I have to do it and we'll figure something out. We always do. Thanks so much for sharing your successes with me!! So glad things are going well for you.

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Default Jan 01, 2020 at 08:57 PM
  #12
Are you on Medicare? Labs are free on that. I couldn't afford it otherwise. It is more expensive than most generic meds on Med D because you can't get it more than a month at a time so it has to be done through a pharmacy. Not all insurers cover it so you have to take what you can get. For me it is $20/month which sucks but it was my only option. You might have better Med D coverage for it; I did the first couple years I was on it and then the last 2 I've not had a lot of options but I have a really good plan overall (better than I had the other years) supplemented by patient assistance for a few meds I need but can't afford.

I hope you can work it out. I know how hard it is. I am on clozapine because nothing else works for me. It sounds like you are in that same position and it is not an easy one to put up with.

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Default Jan 01, 2020 at 09:16 PM
  #13
So I’ve found abilify incredibly effective as a maintenance med but I’m not sure it works for acute stabilization. I’ve only had one manic/psychotic episode....pdoc swears the meds are just that good. Anyway....I was acutely stabilized on risperdal for like four months I think. It’s not a perfect med by any means buts it’s very strong. It can cause male breast development though...so that could be a deal breaker....there are ways to reduce the prolactin effect....either pair with abilify or metformin. I guess the overall thing I wanted to say was don’t give up on abilify as a long term med...but maybe look for something stronger until you’re stable?

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Default Jan 02, 2020 at 01:46 AM
  #14
hi. abilify now at 15 does it for me. fun fact: for all the hoopla about abilify for depression, blah blah blah...the strongest evidence is for Schizophrenia (I'm guessing also Schizoaffective?) and anti-manic in Bipolar I. true story.

not a big fan of older ones. Haldol inpatient was hell. risperidone (atypical-ish, according to current shrinky shrink) was mind numbing, but OK...to top off Abilify when I was in the throes of...mental anguish, I guess.

trileptal, OK till I got depressed. but depression is where I live, its my usual zipcode. maybe the dosage was a bit too high? i dunno....

i wouldn't recommend depakote to my worst enemy. tegretol is a lot like trileptal...trileptal doesn't require nearly as much blood work, but some people do better on tegretol, trileptal has far less data backing it (mostly from foreign studies...scary to read...pumping manic people full of trileptal, comparing it to pumping them full of Haldol...eeek!), so trileptal is an 'off label' deal...

never taken it, but perphenazine (trilafon, also in a combo pill with elavil...triavil...) is in the phenothiazine class, like thorazine, but moderate potency. takes more mgs to get the job done than thorazine, fewer than prolixin or haldol or stelazine. in the CATIE study with people labeled as Schizophrenic, perphenazine did -almost- as well as zyprexa...

but that's hit or miss, on an individual basis. :-( on the plus side, it doesn't cause the metabolic hell that zyprexa does, its generic and widely available, and since its moderate potency, dosages can be adjusted to fit your needs, more or less (long term, i imagine doses would go up and down? i dunno).

amoxapine...a tricyclic antidepressant that partially metabolizes into loxapine. a former shrink mentioned it. psych fave for psychotic depression, apparently. if its ramped up high enough, its basically (according to small studies) an atypical, plus it has a more robust effect on mood and anxiety than risperidone.

vraylar? its...the new Abilify, my shrinky shrink wanted me on it, i got suspicious when i heard 'potent anti-manic effects.' you need anti-manic, maybe it'd be an option. for me...i hear that, i hear 'chemical strait jacket.' long story.

all i can come up with. hope this helps.
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Default Jan 02, 2020 at 08:35 AM
  #15
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Originally Posted by bpcyclist View Post
We have discussed it. Does it help with your psychotic symptoms? I am having a lot of difficulty with scary voices and paranoia again today. I calmed myself down, but I am scared. Maybe thorazine would help.

I've been on Tegretol and Depakote before and I just cannot do them--I am in an almost catatonia-type situation with those two. It's basically like mega-dose Remeron, if that measn aything to you. What about newer adapted anti-seizure meds--any opinion of them?
Yes the thorazine helps a lot with my psychotic symptoms, I was in a near constant state of being paranoid and delusional for a few months before I got on the thorazine. I no longer think my meds are poisoning me and am not hearing voices anymore.

The anti siezure med I take is trileptal, it's related to one of the other antiseizure meds, I think tegretol?? not sure, either way it has less side effects than the other which is why I picked it when my doctor gave me the options. it's noticeably slowed down manic symptoms for me, not sure if it would be helpful for the depression side of things though, it did make me very tired and foggy for the first couple months I was taking it but now I have no problems

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