Looking for your experiences with AP's (long)

I'm debating if I should change my AP from Rexulti to something else, but I don't know if I should maybe ask for a second AP (a heavy hitter) to go along with my Rexulti. I want your (non-professional) experiences.

Rexulti has been great for depression. It's the only thing that's ever helped my depression. However, agitation or hallucinations? Not so much.

I get lots of hallucinations outside of episodes. It's a known thing. The official Dx written in my file is "bipolar 1 disorder with mood incongruent psychotic features." Fortunately, I can usually tell when I am hallucinating because I use grounding skills. I also try not to worry about odd sounds and odd visual stuff unless they're bothersome or dangerous. My therapist told me to try to ignore them by watching YouTube videos or listen to music. Though if things get real bad, then I won't drive anywhere.

The hallucinations are pretty mild in nature, though. For example, last night I heard some voice mumbling words into my right ear that I could really make out. I realized it was a hallucination because it came in only one ear, as if someone was whispering in that ear. I also remember a while back where I had two voices talking to me in each ear. One man telling me I was



Then another lady was laughing with him and encouraging him. "Hahahaha! Again, again!" But I realized that was fake. I just don't know about delusions, because I live by myself and no one here is able to tell me if I'm delusional. So that's the part about my psychosis that concerns me.

ANYWAY, the great thing about Rexulti, though, is that it hasn't caused weight gain or any other negative side effects. Literally, nothing else that I can think of, besides perhaps some low blood pressure (but all AP's do this to me). I know Abilify is similar to Rexulti, but I've already tried that one. Helps immensely with depression, but doesn't stop mania, so it kind of defeats the purpose of an AP...

I'm deathly afraid of Seroquel, and Latuda just doesn't do anything for me except sedate the s*** out of me. I am never, EVER going back on Seroquel. That stuff literally gave me the worst depressive episode I've ever experienced in my entire life, and gave me suicidal thoughts. I don't care if it stopped my mania. I'm not touching that again. Ever.

I think I need a heavy hitter like Clozapine or Olanzapine, but the weight gain from those two scare the living s*** out of me. And stuff like Saphris just seem too sedating. Plus, I saw my grandma on Geodon when she was alive. It was not good for her, and I don't know if it'd be good to me since we're obviously related.

My pdoc won't prescribe 1st gen AP's because that's against his office's policy. So no Haldol etc for me. But my grandma was doing great on Haldol while she had it. But she got Haldol from an IP stay outside the continental U.S., where the Rx policy is different. So when she came up here, she went to a geriatric place that said, "We don't like Haldol because it's a 1st gen antipsychotic. We're talking her off it." That's the only reason she went off it. They put her on Seroquel, but then she went to IP again and was put on Olanzapine and Geodon at the same time.

I took Abilify, but it didn’t help.

Seroquel has helped me tremendously, but I responded differently to delayed release versus the regular release, so if you tried one form, and it didn’t help, it doesn’t mean the other won’t work for you. Regular release works great for me. The pdoc tried me on the time released version, and I felt sedated and sleepy all day, no energy at all. I have seen others post having the opposite effect for them, so it could be worth it to try the other version if you have not.

I took geodon a long time ago (prescribed during a psych hospital stay). I don’t think I took it long though once out of the hospital. The pdoc took me off it, and that was when I was using the state county sliding scale/free mental health system. The one I went to in the Houston area could and did prescribe everything under the sun. I am not exactly sure why I was taken off the geodon except that I was diagnosed with major depressive disorder at the time and not bipolar.

Some mental health workers (both pdocs and therapists have vastly different opinions on meds). When I was trying to find a T just recently, I talked to one on the phone. The instant I told her I was on Seroquel, she told me to go back to the pdoc, get my meds adjusted and then call her again; needless to say, I did not take her advice or call her again. And of course lots of pdocs don’t want to prescribe benzos because of the tightening laws.

Unfortunately, I've tried both Seroquel and Seroquel XR. Seroquel XR was the one that gave me the severe depression and suicidal thoughts. I was so put off by it that I didn't want to go back on regular Seroquel. It sucked, too, because there's a coupon to get Seroquel and Seroquel XR for $3.

As for Geodon: My grandma slept all day on it. The IP doctors put her on an ultra high dose of it. Seroquel and Seroquel XR didn't work for my grandma AT ALL because it pooped out on her quickly. She was hyperactive, had that rapid speech, hallucinated, etc on Seroquel and Seroquel XR. She actually took Seroquel 3x a day and it didn't work. So Geodon and Zyprexa it was. She started the Zyprexa before the Geodon, so we know that Zyprexa wasn't the sedating one.

Anyway, that T of yours is so strange. I don't see any reason for people to NOT take seroquel unless they get negative side effects like I did. Usually pdocs have a problem with 1st gen AP's, never with 2nd gen. I don't blame you for not calling her again. Talk about ignorant! My first T was ignorant like that, but in a slightly different way. She really did have a warped thought process.

I'm happy to share my experiences with antipsychotics, but I really urge you to try new ones regardless of others' experiences. For example, you say you hate Seroquel, but my Seroquel XR has been my best antipsychotic yet. It has been effective at curbing and extinguishing many of my past depressions, manias, mixed states, and even anxiety, not to mention helping me sleep. It is the only antipsychotic that has yet to give me an EPS or hyperprolactinemia, besides Trilafon. The extended release Seroquel was fairly weight neutral for me up to 450 mg, but not as friendly at 600 mg plus, though not nearly as weight unfriendly as others. In the beginning of my Seroquel XR treatment, I had morning "hangovers", but that eased over time and by practicing certain strategies. Here are some of my other experiences:

* Seroquel regular - Less weight friendly than the XR. More sedating taking it twice per day vs. XR's evening only. Otherwise very helpful and no other side effects.

* Risperdal (risperidone) - Very effective for mania, agitation, and mixed. Gave me hyperprolactinemia. Some weight gain.

*Zyprexa - Very effective overall, but akathisia and rapid weight gain.

*Abilify - Weight friendly, but caused akathisia early on. On this combined with Lamictal, I felt marvelous for a few months, then the marvelous got way way out of hand! It turned full blown manic with psychosis, turning mixed with psychosis, resulting in one hospitalization followed by some serious out of hand behavior leading to another hospitalization for mania switching back and forth from euphoric to mixed with psychosis. It brought on the kindling effect leading to yet another hospitalization soon after.

*Invega - Only effective for mania, and very effective for that, but left me severely depressed. I gained a huge amount of weight on this med combined with Depakote. My cholesterol and triglycerides became very high, and became pre-diabetic. Like Risperdal, it gave me hyperprolactinemia. I also developed a pituitary microadenoma that this medication might have caused. Horrible!

*Geodon - Helpful for mania in the beginning, but the largest dose stopped being effective enough over time, so I needed a second antipsychotic added to curb breakthrough mania. I had at times been hypomanic for months straight before an adjunct was added. Then the full blowns started, necessitating one. Though helpful for sleep in the beginning, it stopped being helpful over time and I was up most of the night for a while. After 5 years, it started to cause terrible akathisia. When taken off this med (even slowly), I had rough withdrawals. This med was weight friendly for me. On it I had lost 40 lbs on a diet and maintained the weight loss for years until I was also taking higher doses of Seroquel XR.

*Navane (thiothixene) - A first generation AP. Helpful as an adjunct to Geodon and moodstabilizers. Was weight friendly. At 10 mg, I eventually developed a dystonia and had to go off.

*Trilafon (perphanazine) - Another 1st generation. Even more helpful than Navane as an adjunct to Geodon and moodstabilizers, but caused rapid weight gain at 12 mg.

The above are the only antipsychotics I've tried. I always took at least one moodstabilizer along with them (Lithium or an anticonvulsant).

I have only been on three anti psychotics and so far I haven't had a good experience with any of them.

Zyprexa; I gained 20 pounds in the matter of two weeks; and couldn't go five minutes without feeling hungry. It worked okay for the hypo feelings, but still felt massively depressed on it.

Seroquel: This is about the only anti psychotic I haven't hated. I'm having horrible indigestion on 200mg. The lower dosages I never had a problem with, 100mg totally killed my depression granted I did have a few hypo episodes on that dosage. I can also sleep with Seroquel as opposed to some other medications.

Latuda: I can't even say I liked this medication. It it by far the worst medication I have ever been on. It didn't do anything for my depression, if anything I felt more depressed. It could not put me to sleep. I was even on Ambien and I still couldn't sleep with this medication. The whole counting calories was a giant pain. I got like massive brain fog three hours after taking it. I also had horrible muscle spasms and aches on this medication.

I honestly have not had a good experience on any of the anti psychotics.

It is also helpful seeing other peoples experiences on the other anti psychotics.

was on geodon for a couple of years somewhere in the 80mg range ... not sure ... finally got off it ... taper very slowly ...

took me over a year to be able to sleep after stopping it ... slept like a baby while on it though ...

i never could tell it did anything for me ... but pdoc swears by it ... started in hospital ...

Today ?

They all suck, trust me I have been on most everything literally.

I really want off the stuff, will be the discussion of my next T session.

I only was on Abilify for a short while... My pdoc has suggested that maybe I should try a low dose of zyprexa. He suggests that because my father has been on that for many years, and does very well with it. He has schizoaffective.
I just really don't want to take any antipsychotics. My dad has had much more severe illness than I have.

You should try a med, especially if you think you need it to help with your symptoms. There are sites that talk about bipolar diet, or maybe it's called the serotonin diet? Staying active and eating well can prevent weight problems.

My father doesn't have a weight issue after taking zyprexa for many years now. He is very obsessed with health though, so that could be a great help.

So olanzapine and clozapine both cause huge weight gain, have you ever considered different coping mechanisms since you describe the hallucinations as mild? In some places you can get cbt for psychosis, in others you might have hearing voices groups etc.

My understanding is only 25% of people respond completely to APs with another 25% partial and another 25% a complete failure, the remaining 25% have a worse outcome....now those numbers are for schizophrenia so the number for bipolar may be different but I’ve never seen them as there is just less research in bipolar.

For me I quit increasing my AP dose due to side effects and still had a handful of voices, but eventually those went away....but my bipolar is also under control, I just haven’t had more mood episodes past the first. But I mention this because I was willing to settle for a few voices for example over the lactation side effect of risperdal.

I don't have hallucinations or psychosis, but I just want you to tell you that I don't think it's a good idea asking other people about side effects they've experienced. Meds affect different people very differently. I talked to someone who had a bad experience on Abilify, so I was afraid to take it for months. When I finally started taking it, it helped with depression with no negative side effects. So you can't really know until you try how it will affect you.

I think you should give Geodon a try. I don't think you have a hugely increased risk of side effects because your grandma did; the elderly are much more at risk of all kinds of problems and sensitives to meds that don't show up in younger people. Geodon is usually pretty easy to deal with for most people and if I had a choice between it and zyprexa I'd go for the Geodon (well, I wouldn't as I had a bad reaction but that was really rare for that drug).

Regarding zyprexa I only took it a few weeks and it did nothing for me but it's worth trying since it works for most people. I've controlled my weight on clozapine by watching what I'm eating and snacking on veggies and fruits more than anything else. I've even lost 25 lbs. So while the weight gain with it (or clozapine) is a real risk it isn't a certainty and can be avoided sometimes at least.

Generally you have to have failed on pretty much everything before they consider clozapine because it has killed people (agranulocytosis). I started to list what I'd tried before going on it but I can't remember the whole list right now. I can say that the only things I haven't tried are saphris, rexulti, vraylar (have you tried that one?) which weren't out when I went on clozapine and invega which I am considered allergic to because I'm allergic to risperdal. I've also tried at least one typical and a whole lot of mood stabilizers (all of those typically used except tegretol). I'd been on well over 40 meds in 70 combinations before clozaril became the only remaining choice.

I don't know what else you haven't tried but would suggest not giving up on something for a side effect you aren't sure you'd have. Another one to look at is called loxapine. It is older but not exactly an atypical and not exactly a typical so it may be ok with your pdoc's rules. It is weight neutral, not that sedating and I found it helpful.

Finding meds that work is so hard. I hope you and your pdoc work something out.

I've tried abilify, risperidone and zyprexa. Abilify made me pack on weight. Risperidone was good, but had physical side effects. I'm not currently on an AP and honestly hope it stays that way. For me the side effects outweighed the benefits.

I take Abilify (and propranolol to help with the accompanying shakes and Lamictal) and it has evened me out. since starting it over 5 years ago, I've had one relatively minor hypomanic episode and the beginnings of a manic episode with hallucinations, that increasing the dose did away with.

I hate Seroquel. I need a ridiculous amount of sleep on it, it gives me a hangover, and makes me crave all food and especially sweets, all the time. BUT, I think it's a great med for pulling one out of a full-blown manic episode. It did that for me, years ago, successfully. But then my pdoc at the time, kept me on it and it was just awful. Personally, I think it's best to take Seroquel on an as-needed basis (titrate off it, once the manic episode has subsided, and then replace it with another AP that doesn't have such awful side effects).

As far as Abilify side effects, when I first starting taking it, actually, for the first year or so, it made me very dizzy when getting up. What didn't go away was the shaking hands (I forget what it's called). But taking propranolol twice a day has largely done away with that. At first I took it once a day and it helped somewhat, but then when I started taking it twice a day, it's almost gotten rid of it entirely.

Interesting experiences, BirdDancer.

Seroquel just gave me a bad hangover, and the XR just made me feel "blah"/flat until the dose was increased and it gave me depression. No weight gain here, either, although I only went up to 250mg of the XR before calling it quits because of the depression. Plus, it made my already-high cholesterol skyrocket.

I had the same experience on Abilify, minus the akathisia and severe mania. I had mania on it, but it doesn't sound as bad as yours. It also stopped helping my depression at some point. I'm just not sure if I hallucinated because of the mania or because I hallucinate all the time anyways. It's possible I was delusional, but I don't know and therefore don't remember, since it was so long ago.

Did you get heart problems on Geodon/Risperdal? I've heard of QT interval issues from a lot of people. A friend had rapid heartbeat on it and had to stop it.

Invega sounds interesting if it helps with mania. I don't think mania is my biggest issue, but psychosis is of course. I just hope it won't end up like Seroquel for me.

Now that I think of it, Zyprexa is olanzapine and Seroquel is quetiapine... I wonder if the "pine"s will have a negative affect on me...

Do you think you were situationally depressed on Zyprexa (e.g., depressed because of weight gain and other side effects), or do you think depression was a side effect?

And yep Latuda didn't help me either. It seems to be a "love it" or "hate it" med. I've never heard of anyone being indifferent about it.

How sedated on Geodon were you? I'm very prone to bad sedation.

Yeah, I wish I didn't have to take an AP either.

I hope your T session goes well. I don't blame you for wanting off.

Yeah, I try not to eat a ton while on AP's. I'm pretty sedentary nowadays since I'm no longer living in downtown Boston (and therefore not walking a few mile's worth everyday). I'm just afraid of having my metabolism killed, because sometimes it's more than just diet, but also metabolism! (Obviously it depends on the person, but I'm just expressing my concerns about possibilities.) I'm also scared as f*** with the bear sightings here, so I don't want to walk outside anymore. Maybe the winter will be different because of animal hibernation. lol.

Glad that your dad doesn't have weight gain, though.

I'm deathly afraid of going to group therapy. I'm in the closet about the BP stuff because I'm afraid of losing my job if/when people find out. My job is nice because I get to work from home anytime I want. Hell, I can work from home for an entire year without ever stepping in the office, if that's what I really wanted. But of course, it looks bad on you if you don't go into the office.

I don't blame you on the Risperdal, though. I wouldn't want lactation either!

I wish my voices and stuff went away. Sometimes I get hallucinations where things start moving around and warping. Like, things will spin in spirals and I will see things change shape. It's really weird.

Fair enough. I primarily want to know about side effects that a lot of people experience, because if there's a trend, that's good to know. It's also interesting to see if, for example, someone doesn't do well on any of the "pine" meds (e.g., quetiapine, olanzapine, clozapine, etc.). That suggests to me that perhaps there is some linkage in symptoms between "pine" meds, and that scares me because of my horrible Seroquel XR experience.. IDK if that makes sense.

for me, i couldn't take the zyprexa side effect of constant hunger and weight gain.

the only other AP that i've had a strong reaction to was geodon - could not get through a day without a nap, even if i was out. i fell asleep on trains, sitting on benches.... i was probably overmedicated, but it made me feel drugged, and eventually got those side effects of stiffening leg muscles and my tongue twitching/moving all the time. on the positive side, since being on it i have not experienced anxiety with such physical pain again. that's cool, but also freaky to feel like it has permanently changed something in my brain.

blue, every one is different and will respond to meds differently.
I have taken geodon for many many years.
I with in the last 6 months have taken a small dose of zyprexa too at night to help with sleep. so at night I take 80mg of geodon, 200mg of lamictal, .5mg of klonipin and 5mg of zyprexa and 3mg of prolonged melatonin.
This cocktail works for me. Am able to sleep and continue to work my job.
These are pretty much weight neutral, except for the small dose of zyprexa.

I thought that you were under weight????
bizi

I don’t think the depression was a side effect; it was certianly situational depression. I know for a fact it was the weight gain in such a short amount of time. I went from 160 to 180 in what felt like a matter of days and felt horrible about it.

Latuda was just miserable.

Hi bluebicycle. I do have high cholesterol on my mix. After posting in this thread, I realized that maybe I should have mentioned that, but it was too late. I'm not 100% sure Seroquel XR is a culprit, but I wouldn't bet against it. The last time I had blood tests done, my triglycerides and glucose levels were normal, but the cholesterol was still high. My glucose levels have been normal for about 8.5 years since losing weight after going off Depakote and Invega. I've mostly also struggled with the triglycerides, other than the last year and a couple years after losing the 40 lbs after Depakote and Invega 8.5 years ago. I am still 20 lbs less now than I was before that diet. Yes, that indicates weight gain since then, but honestly, I am only 4 lbs more now than at my heaviest BEFORE my bipolar diagnosis and meds, 17 years ago. Considering, I am not sure that Seroquel XR's weight gain has been that bad for me.

I've never had issues with QT intervals on any of my meds, including Risperdal or a high dose of Geodon (160 mg/day), but do get an EKG every other year. I know Geodon is especially notorious for that, so think people should have thorough annual physicals.

I don't feel flat on Seroquel XR at 600 mg. I feel normal. I do wish I had more energy, but I think if I had as much as I'd like, I'd probably be hypomanic or manic 😉

I have no idea if olanzapine and quetiapine are closely related. I never heard that they were, but they do seem to have things in common. I have read, and my psychiatrist told me, that quetiapine has a comparitively low incidence of EPS and hyperprolactinemia. As mentioned in my original post, this has clearly rung true for me. Risperidone and paliperidone (Invega) are similar. The originals were developed by the same company, too.

Are the -pine drugs related? I'd never heard this and can't find anything about it but my search terms could be wrong.