[Sometimes psychotic]

So you may have heard about the rule of thirds where a third of people supposedly get better from psychosis. I really haven't read about this actually happening to any real people and my pdoc has only been treating people for like 5 years although he is a schizophrenia specialist. Anyway he can't give me any concrete examples of people who have gone off the meds and don't get sick again within a year or so. He says that we just lose track of these people. I find that hard to believe. Really there is not one person who got miraculously better and would want to share that with the rest of us?

Anyway my voices have been gone for around a year and a half now with the exception of a mini break around Christmas when I was changing jobs. But that resolved within a day basically. So yay me but now he is pressuring me to get off the meds. He actually said that these aren't candy. While I appreciate the concern. I already tried to go off the meds a year ago and I started snapping at everyone and had really high anxiety. After 3 weeks I went back to a higher dose to feel good again. I was afraid I was going to have another break, which as you know is hard to recover from and from what I've read you can actually lose more functionality.

So I don't want to lose myself again...I'm so inclined to stay on the meds but he wants me off. I think I am going to try it even though its scary. Its just that there should be some examples of people getting better right? I mean I would be telling everyone. I won't be about to go off the meds until the end of June but would appreciate any advice about going off the meds permanently, especially if you've done this without experiencing voices or delusions. I'm on 7.5mg of abilify right now which is already low but had problems on 5 mg last year.

[faerie_moon_x]

I don't have schizophrenia dx and I don't take any meds, but I know for a fact that I did get better from psychosis to an extent. It is pretty clear cut that I was having a very major delusion for about 5 years, persecetory and paranoid in nature. At some point my brain just put it away. I feel if I had been in treatment at that time, it's likely I would have gotten a psychotic disorder dx like schizophrenia, schizoaffective, or delusional disorder or something. Instead, because I went to treatment years after it was over, they can only say bipolar with possible psychotic features, (and since I"m not in treatment now, I have no one seeing that I still have lower grade paranoia, occasional hallucinations, etc.)

I didn't even remember the episode until I was confronted with the original trigger, which was a building in my old neighborhood.

I would gladly tell you what made it stop. But I have no idea. I don't even know when it stopped. I don't remember when it started exactly. I would love to be able to help everyone else, but I can't. And, I'm not in treatement due to insurance and finances. So, I'm just on my own. Just because I'm not having psychosis like that now, I struggle with my bipolar issues, but I just go along the best I can. And, I feel it is possible I could slip away again. I have tried to research this online, but I haven't found any info on it really.

But, as for people stopping treatment once they are better, that is just human nature. It's very common with bipolar that once people feel better, they stop their meds, stop their treatment, and feel cured. That doesn't mean they won't relapse but they might not go the same rout the next time or they might avoid treatment.

I find it odd that this person is telling you to get off the meds. If they are working then they are working. You already say you stopped them before wtihout good result. For schizophrenia, the only person I know is my cousin. He's had to be on meds his whole life. He always appeared normal, just quiet and a bit flat. You wouldn't know if you didn't know. But, ever since his dad passed away a few years ago, he's slipping. His dad was the one who really looked out for him, made sure he got his meds, his treatments, etc. Now he has his mom, but she's in her 90s and has alzheimers a bit, so.... he's on his own and you can tell he's not the same any more.

So, anyway, I am concerned that your doctor may not know what he is talking about. I agree if you could just "get better and stay better," that you would hear about it more. And, usually what you hear is "they went off their meds and relapsed." Just my 2 cents.

[Sometimes psychotic]

Originally Posted by dark_heart_x

I don't have schizophrenia dx and I don't take any meds, but I know for a fact that I did get better from psychosis to an extent. It is pretty clear cut that I was having a very major delusion for about 5 years, persecetory and paranoid in nature. At some point my brain just put it away. I feel if I had been in treatment at that time, it's likely I would have gotten a psychotic disorder dx like schizophrenia, schizoaffective, or delusional disorder or something. Instead, because I went to treatment years after it was over, they can only say bipolar with possible psychotic features, (and since I"m not in treatment now, I have no one seeing that I still have lower grade paranoia, occasional hallucinations, etc.)

I didn't even remember the episode until I was confronted with the original trigger, which was a building in my old neighborhood.

I would gladly tell you what made it stop. But I have no idea. I don't even know when it stopped. I don't remember when it started exactly. I would love to be able to help everyone else, but I can't. And, I'm not in treatement due to insurance and finances. So, I'm just on my own. Just because I'm not having psychosis like that now, I struggle with my bipolar issues, but I just go along the best I can. And, I feel it is possible I could slip away again. I have tried to research this online, but I haven't found any info on it really.

But, as for people stopping treatment once they are better, that is just human nature. It's very common with bipolar that once people feel better, they stop their meds, stop their treatment, and feel cured. That doesn't mean they won't relapse but they might not go the same rout the next time or they might avoid treatment.

I find it odd that this person is telling you to get off the meds. If they are working then they are working. You already say you stopped them before wtihout good result. For schizophrenia, the only person I know is my cousin. He's had to be on meds his whole life. He always appeared normal, just quiet and a bit flat. You wouldn't know if you didn't know. But, ever since his dad passed away a few years ago, he's slipping. His dad was the one who really looked out for him, made sure he got his meds, his treatments, etc. Now he has his mom, but she's in her 90s and has alzheimers a bit, so.... he's on his own and you can tell he's not the same any more.

So, anyway, I am concerned that your doctor may not know what he is talking about. I agree if you could just "get better and stay better," that you would hear about it more. And, usually what you hear is "they went off their meds and relapsed." Just my 2 cents.

Well I'm glad to hear that you're feeling better. My dx is currently psychosis because I went on the meds about a month and a half after getting sick and they worked right away so maybe there is hope but the only thing I see real recovery from is brief psychotic disorder which is 1 month or less of psychosis. I'm glad to hear from someone who has 5 years in and is clearly fine. How long have you been recovered?

[faerie_moon_x]

As far as I know, it's been about 7-8 years.

I have some random hallucinations, usually very brief and not very often. I see a man in a blue and white striped shirt in my house. Sometimes auditory ones, but usually just like screaming or one word type things.

I have a lot of paranoia. My husband can usually talk me back from it, sometimes it takes him a while to convince me, though. And I trust him very much, to the point he teases me for being so gullible. It's all low grade, though. Like for a long time I thought his friend was plotting to break us up. Or if I hear people whispering I automatically think they are planning something against me. I try to reality check my way out of it. It's hard.

[Sometimes psychotic]

See I don't even have the low grade stuff any more unless its during a major life stressor like changing jobs. I like not having to deal with it, and all it takes is a little pill, or more exactly half of a little pill. I'm just not so sure why he wants me off, I feel like a guinea pig or something. At least he respects my wishes and keeps writing me the dose I want.

[faerie_moon_x]

It is very strange. Have you looked into getting a second opionion? I know that's not always easy when it comes to pdocs depending on where you live, insurance, etc. I just find it very strange.

[Ultra Darkness]

I agree about it being strange. Usually people are incouraged to stay on their meds, not come off them. Maybe you could start by reducing the dosage and see what happens?

[Sometimes psychotic]

Originally Posted by Ultra Darkness

I agree about it being strange. Usually people are incouraged to stay on their meds, not come off them. Maybe you could start by reducing the dosage and see what happens?

Right well we would be tapering as is the recommended way probably from 7.5 to 5 for a while to see if that works. Also I should note that for 6 months past my last symptom clearance he was vehement that I stay on the meds it's just he reversed opinion with me being well for so long. I think this is his standard position because he once told me about another woman he was seeing who stopped her meds for like a year and he had to go to court to get her back on because she was so paranoid of being poisoned that she would only eat wrapped food.

[Mercury Man]

I'm going to try to go off my meds but your story is interesting coming from your doc. I don't have any more delusions and psychosis and don't have to worry about getting them back but I don't know about these voices they might come back but I'll be ready. But you've put if off to June so you'll have enough time to contemplate it. Hah! you don't need the meds anymore going by your doctor, that's kinda weird but he sorta knows you and all so we'll see right?

[Sometimes psychotic]

Originally Posted by dark_heart_x

It is very strange. Have you looked into getting a second opionion? I know that's not always easy when it comes to pdocs depending on where you live, insurance, etc. I just find it very strange.

Honestly I don't think I want to go through that. I just switched jobs and was trying to find a pdoc closer by but they are all bipolar specialists. He recommended two to me and they were both unavailable of course he was insisting i goto the chief of psychiatry. There are some available but they are young like him and without the specialty in psychosis. I'm not sure that I would trust them without getting to know them and getting to know them means telling my story to someone who might not be ready to hear about devils and leprechauns and the like. I'm just not sure how well a regular pdoc would handle it, that's one thing I love about my pdoc he is never judgmental.

[Sometimes psychotic]

Originally Posted by Mercury Man

I'm going to try to go off my meds but your story is interesting coming from your doc. I don't have any more delusions and psychosis and don't have to worry about getting them back but I don't know about these voices they might come back but I'll be ready. But you've put if off to June so you'll have enough time to contemplate it. Hah! you don't need the meds anymore going by your doctor, that's kinda weird but he sorta knows you and all so we'll see right?

Yes I know it's weird...that's what has me worried....maybe I'll be fine? That would be a miracle but at least if I do start hearing voices again I'll know to stay on the meds next time.

[cybermember]

Very strange your pdoc wants you off meds. My pdoc would rather I increase my meds but respects my wishes that I don't want to because of med side effects. I think it would be in your best interest to seek out a second or maybe a third opinion. A good pdoc is one that is willing to work with you. It should be a collaborative effort in your treatment.

[Sometimes psychotic]

Originally Posted by cybermember

Very strange your pdoc wants you off meds. My pdoc would rather I increase my meds but respects my wishes that I don't want to because of med side effects. I think it would be in your best interest to seek out a second or maybe a third opinion. A good pdoc is one that is willing to work with you. It should be a collaborative effort in your treatment.

Normally we have been very collaborative, this was our first real impasse. It may have been partially my fault. I told him I wanted to switch to another pdoc because of convenience to my new work. It's possible that his judgment was impaired.
Anyway I tried to go to another but the good ones were not taking patients so I am back with him because we generally relate well and the others are worse choices. Still maybe you are right it wouldn't hurt to go to another one just once.

[cybermember]

Originally Posted by Sometimes psychotic

Normally we have been very collaborative, this was our first real impasse. It may have been partially my fault. I told him I wanted to switch to another pdoc because of convenience to my new work. It's possible that his judgment was impaired.
Anyway I tried to go to another but the good ones were not taking patients so I am back with him because we generally relate well and the others are worse choices. Still maybe you are right it wouldn't hurt to go to another one just once.

You're just looking for someone else's opinion, that's all. And if other opinions are in agreement with you that it would be best to stay on your meds, even if it's a low dose, then I would be serious about switching pdocs. I would keep calling the good pdocs every so often to see if they are accepting new patients. It's just a phone call every now and then and have nothing to lose by just making a call.

For me, stress is a big trigger and causes a whole host of problems (hallucinations, delusions, and paranoia) and is pretty much the main reason why I remain on my meds.

[Sometimes psychotic]

Thanks cybermember. I'll talk with him about it and keep checking on the other pdocs.

[Sometimes psychotic]

Well I decided to give going off the meds a shot. At the end of June I'm going to taper down to 5mg for 6 weeks. Wish me luck.

[cybermember]

Did your pdoc convince you to come off your meds or did you decide this on your own?

[Sometimes psychotic]

Originally Posted by cybermember

Did your pdoc convince you to come off your meds or did you decide this on your own?

I feel like I need to give it one more try. He was very convincing the last time I saw him. So I'd say 50/50 he didn't even bring it up this time, I had to....it's complicated because he also does psychoanalysis so a lot of times we are just chatting. Anyway he's not forcing me or anything. Right now I'm more worried that a 6 week taper will be rough, 3 weeks the last time was unbearable and I just went back on the meds.
I can always go back on because I have one more refill of my current prescription so I don't even have to ask him if I want to fix things. This is so weird that I'm even thinking of increasing my dose without him, I mean I'll call but he usually takes a day to get back to me.

[lostinbooks]

[Sometimes psychotic]

Thought I'd update this thread. I'm three weeks into tapering onto 5mg abilify and doing fine. I'm really happy that my pdoc pushed me to try this.

[mimi2112]

I just want to say that I really respect the psychiatrist that you have. It isn't common to find those who take a gentler approach with psychiatry. Your story is exceptional and an inspiration. I'm glad you are adjusting to the taper and I hope you continue in your progress.

[mimi2112]

Originally Posted by Sometimes psychotic

So you may have heard about the rule of thirds where a third of people supposedly get better from psychosis. I really haven't read about this actually happening to any real people and my pdoc has only been treating people for like 5 years although he is a schizophrenia specialist. Anyway he can't give me any concrete examples of people who have gone off the meds and don't get sick again within a year or so. He says that we just lose track of these people. I find that hard to believe. Really there is not one person who got miraculously better and would want to share that with the rest of us?

Anyway my voices have been gone for around a year and a half now with the exception of a mini break around Christmas when I was changing jobs. But that resolved within a day basically. So yay me but now he is pressuring me to get off the meds. He actually said that these aren't candy. While I appreciate the concern. I already tried to go off the meds a year ago and I started snapping at everyone and had really high anxiety. After 3 weeks I went back to a higher dose to feel good again. I was afraid I was going to have another break, which as you know is hard to recover from and from what I've read you can actually lose more functionality.

So I don't want to lose myself again...I'm so inclined to stay on the meds but he wants me off. I think I am going to try it even though its scary. Its just that there should be some examples of people getting better right? I mean I would be telling everyone. I won't be about to go off the meds until the end of June but would appreciate any advice about going off the meds permanently, especially if you've done this without experiencing voices or delusions. I'm on 7.5mg of abilify right now which is already low but had problems on 5 mg last year.

It's been awhile since you posted this and I'm wondering if you have collected more evidence of those that do recover. I have found a lot of testimonials at Mind Freedom, and Newtus posted on Roll Call a link to video testimonials. I know of two MD's who were dx'd as psychotic/ Sz and have recovered. I think the the number of recovered maybe higher than one third.(rule of thirds). I consider myself recovered, just not 100%, --what ever that means.

I just thought I'd ask at this point, since it seemed to be a question you had in the beginning about where are all these recovered people. Why have they not come out? Well they have come out, and have spoken up, it's just that their story has to be sought out.

[newtus]

sought out...unfortunately

Sent from my iPhone using Tapatalk 2

[Sometimes psychotic]

Originally Posted by mimi2112

It's been awhile since you posted this and I'm wondering if you have collected more evidence of those that do recover. I have found a lot of testimonials at Mind Freedom, and Newtus posted on Roll Call a link to video testimonials. I know of two MD's who were dx'd as psychotic/ Sz and have recovered. I think the the number of recovered maybe higher than one third.(rule of thirds). I consider myself recovered, just not 100%, --what ever that means.

I just thought I'd ask at this point, since it seemed to be a question you had in the beginning about where are all these recovered people. Why have they not come out? Well they have come out, and have spoken up, it's just that their story has to be sought out.

I think part of the problem is that I want people like 20 years out that haven't had a relapse and that is not what I'm finding. I just really don't like the idea that I'll relapse off the meds because I had so little insight. I will say that I do feel a lot stronger and better now on a lower dose. I think if I had tried this a year ago I would have relapsed quickly just because I felt so bad going off the meds.

[mimi2112]

Take These Broken Wings | Wild Truth here are people like you spoke about wanting to see with 20 yrs recovery. I think they are out there, like I said it's a matter of finding them. I think too, that there may not be 100% recovery from all symptoms all of the time. There are a lot of examples that Daniel gives in this documentary. Read the first three paragraphs of the description of the documentary for examples of long recovery. Open Paradigm project and Mind Freedom gives many testimonials, also.