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Narshe81

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About Narshe81

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    Before Invega Sustenna: Drawing, movies, animation, music, cooking, hockey, martial arts, ice skating, dining out, philosophy, criminology, manga, anime,games, MMORPG

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  1. I came to realize over time that it is impossible to try to get those who do not have anhedonia to understand. No words can truly express it. This will be my last post here for I do not think myself and others would benefit from my posting here anymore. Before I leave I would like to leave this here. This is a reply to a post I have posted in other thread that I feel would benefit those who are suffering from Invega Sustenna. Hi Narshe81 (and also jjasonn). We're in a pretty similar boat in terms of experience, and I agree with most of what you're saying. I had a psychotic episode last December, and in January 2013 I was given the normal starting routine for Invega Sustenna - 1 234mg shot (1/7/2013) followed 1 week later by a 156mg shot (1/14/2013). This was the worst thing that has ever happened to me - bar nothing. Not the episode! That was bizarre, to be sure, and I'm worried about my medical condition.... but it's the drug that was so horrifying and destructive. I was dying to find the same information you're seeking Narshe and jjasonn, earlier this year, and I still am. All I can report is from my experience in the last 11 months and my research of the drug label and articles I could find online. I have learned some things. I never got another shot after 1/14/2013. That was against the recommendation of my doctor. We'll see how it turns out. Taking this torture as a precautionary measure, when it's far far worse than delusions themselves? That calculus didn't make sense to me. I hope I'm right. For one thing, it's absoultely clear that my doctor did not grasp the potency of this drug. Here's the bottom line Narshe: it has been 11 months. I'm still messed up from the drug, but it has improved dramatically over time. I would say I was devastated through July (6 months out), transitioned from devastated to "heavily impaired" from July to October (9 months out), and since November I've been "impaired" (11 months out). I'm plenty messed up now, with cognitve issues, sexual function issues, anhedonia etc., but its nothing next to the hell I was in in February. Each month I can notice significant improvement in my cognitive function, my mood, and emotional sensation ... my sexual interest and testicular function, twitching, weight gain (20 lbs), dizziness upon standing, restlessness, inability to think or focus or engage watching tv, listening to music or playing games; difficulty conversing, feeling pleasure and being generally in perpetual deep boredom, having no motivation at all. My only experience with feelings as low as suicidal ones, in my entire life, was in January-February. That has certainly passed. Some of the effects in that incomplete list went away before others. And I didn't feel that great or aware about my improvements each months until after about 6 months. At the very beginning I was urinating every 30 minutes and couldn't move my face. Most of the list was ongoing after two months. Anyway, I didn't feel like I was appreciably improved until around September - so that's 8 months later before I personally felt any real hope of recovery. I hope knowledge of that date helps you. This (11 months) is the first month where I feel I can "pass for normal" to an average person. They might think I'm tired, but would never think I'm way off/drugged, even if they know me, actually. I can still tell I'm messed up, of course. But I can also tell that I've gotten a lot of abilities back. It's very exciting actually. I also lost the 20 lbs I gained from the drug through vigorous exercise from July to September. (recommended) I still have many of the same feelings you have: I'm hoping I'll improve all the way, maybe 90% or something, maybe more. And I'm very worried about the permanent effects. I'm personally very focused on the cognitive effects, but I'm also wondering if my tongue will stop twitching when I stick it out and so on. Thinking was the name of my game, 24/7, and it was just snatched away. But I can tell you that you won't remain devastated forever; that it at least improves to "impaired". And in 6 months maybe I'll be able to tell you that you'll improve all the way or almost all the way. Also, DO NOT be discouraged by people telling you that you're exaggerating, that there is nothing wrong, or that they can't tell (which may be true); that your complaints are actually of the condition and not the drug, etc. These people have no idea what they're talking about. I have a supportive and attentive girlfriend, who was able to see many of the subtle things (to an outside observer) of which I complained. That was very helpful to me. My father on the other hand, thinks this has all been exaggeration and a hypchondriac's prattle. So I had to deal with that and it's tough. The drug is devastating for real; don't be BSed out of knowing that. My diagnosis was psychosis NOS (not otherwise specified). That basically means I didn't get a "real" diagnosis cause they weren't sure what I had / had happened. My psychosis consisted entirely of paranoid delusions and it lasted about 45 days - I had no hallucinations, no difficulty thinking (delusional belief formation aside), etc - I definitely had paranoid delusions though. I also separately have depression and high anxiety. I normally take no medications of any kind and I never do any drugs, including alcohol, with the sole exception that I sometimes smoke tobacco. I'm a physicist with advanced degrees and I went to/ worked at some of the very top schools in the country. That's diagnostically relevant, but I'm also hoping to get a cred. boost. I'm 29 years old. I still am trying to figure out what my underlying diagnosis is... bipolar perhaps? I don't think I have schizophrenia, but I'm not certain. Statistically, it would be a late onset. I really just don't know, and neither did my doctor(s). But I was told to continue taking antipsychotics just in case I was schizophrenic and I disregarded that advice. I recovered "100%" from my psychotic delusions in late January, which I was told is rare. So far I've had no recurrence of any psychotic symptoms. As far as I could find, there is nothing that can be done to speed the removal of the drug from your body. I suspect that obesity makes the drug last longer as it gets stored in fat, but that's a bit of a guess. My intuition says drink a lot of water and exercise if you want to try and speed up the removal. According to the label for Invega sustenna, enzyme CYP3A4 might be important for eliminating paliperidone. It says that if you take an inducer of CYP3A4 you may need a higher dose for paliperidone to be effective. It later claims that this result is contradicted by other studies, so its unclear. You could try to induce that enzyme. Capsaicin is the only food I found online to induce that enzyme. I never tried it, and I certainly didn't want to take another drug for this purpose, but I wouldnt mind spicy food. Kind of an aside I guess, but it might be worth trying. St. John's wort is a major inducer as well, but its a drug. After the amount of time I've been off the drug (better put - since last injection), I'm not sure anymore if I'm still heavily drugged, or rather if my brain chemistry hasn't normalized (or if there is permanent and irreversible damage). A bit of both I expect (or all three). But FYI the half life for a 234 mg dose is 49 days. My dose was essentially 400mg in some sense. Your dose (naively at least) is 100 mg plus what was left over before that; probably another 200 mg or so. So permanent damage from duration of use aside, we probably quit from similar dose amounts. Since the half-life decreases with quantity, using 49 days should give you conservative estimates of the amount of palmitate left. I remember finding 15mg to be the best conservative estimate of my equivalent oral daily dose at injection time. SO, 2 months later, its about 7.5 mg/day and so on. I'm not sure how useful or accurate this method is though because it doesn't align with my experience that well. One thing to keep in mind is that 49 days is a median. That means for some people they still had 85% after 49 days. I found something a while back that had actual raw data and the variance was very high. I personally set my expectation at double the median to be very conservative. With the time of "brain recovery" though, I mean... this is pretty much guess-work. The main thing is the my personal "raw data" - which is that I know how I feel. And you do get better over time. I would be interested in getting a blood test to see how much drug is still in me (and how much prolactin), but I never did that. You could consider that if you were very curious. Another kind of raw data. Anyway, I've learned a lot about paliperidone from obsessing about it online the past 11 months. Bipolar patients can expect decreased cognitive funtion, including poor verbal recall, poor working memory, and slow processing speed. Switching to abilify can reverse hyperprolactinemia, for anyone having sexual issues and wanting to stay on anti-psychotics. That first tidbit points out that the underlying condition can have a big impact on your experience of paliperidone, since the drug apparently improves thinking for some schizophrenics. This is already too long and I think it hits what you wanted to know already, so I'll end here. Hope this helps. You just have to wait it out... for you know, maybe 18 months total? It's a while. Good luck. And as far as permanent effects I'm in your boat completely. Anyone out there have information about how things look past 11 months?
  2. Hi Narshe81 (and also jjasonn). We're in a pretty similar boat in terms of experience, and I agree with most of what you're saying. I had a psychotic episode last December, and in January 2013 I was given the normal starting routine for Invega Sustenna - 1 234mg shot (1/7/2013) followed 1 week later by a 156mg shot (1/14/2013). This was the worst thing that has ever happened to me - bar nothing. Not the episode! That was bizarre, to be sure, and I'm worried about my medical condition.... but it's the drug that was so horrifying and destructive. I was dying to find the same information you're seeking Narshe and jjasonn, earlier this year, and I still am. All I can report is from my experience in the last 11 months and my research of the drug label and articles I could find online. I have learned some things. I never got another shot after 1/14/2013. That was against the recommendation of my doctor. We'll see how it turns out. Taking this torture as a precautionary measure, when it's far far worse than delusions themselves? That calculus didn't make sense to me. I hope I'm right. For one thing, it's absoultely clear that my doctor did not grasp the potency of this drug. Here's the bottom line Narshe: it has been 11 months. I'm still messed up from the drug, but it has improved dramatically over time. I would say I was devastated through July (6 months out), transitioned from devastated to "heavily impaired" from July to October (9 months out), and since November I've been "impaired" (11 months out). I'm plenty messed up now, with cognitve issues, sexual function issues, anhedonia etc., but its nothing next to the hell I was in in February. Each month I can notice significant improvement in my cognitive function, my mood, and emotional sensation ... my sexual interest and testicular function, twitching, weight gain (20 lbs), dizziness upon standing, restlessness, inability to think or focus or engage watching tv, listening to music or playing games; difficulty conversing, feeling pleasure and being generally in perpetual deep boredom, having no motivation at all. My only experience with feelings as low as suicidal ones, in my entire life, was in January-February. That has certainly passed. Some of the effects in that incomplete list went away before others. And I didn't feel that great or aware about my improvements each months until after about 6 months. At the very beginning I was urinating every 30 minutes and couldn't move my face. Most of the list was ongoing after two months. Anyway, I didn't feel like I was appreciably improved until around September - so that's 8 months later before I personally felt any real hope of recovery. I hope knowledge of that date helps you. This (11 months) is the first month where I feel I can "pass for normal" to an average person. They might think I'm tired, but would never think I'm way off/drugged, even if they know me, actually. I can still tell I'm messed up, of course. But I can also tell that I've gotten a lot of abilities back. It's very exciting actually. I also lost the 20 lbs I gained from the drug through vigorous exercise from July to September. (recommended) I still have many of the same feelings you have: I'm hoping I'll improve all the way, maybe 90% or something, maybe more. And I'm very worried about the permanent effects. I'm personally very focused on the cognitive effects, but I'm also wondering if my tongue will stop twitching when I stick it out and so on. Thinking was the name of my game, 24/7, and it was just snatched away. But I can tell you that you won't remain devastated forever; that it at least improves to "impaired". And in 6 months maybe I'll be able to tell you that you'll improve all the way or almost all the way. Also, DO NOT be discouraged by people telling you that you're exaggerating, that there is nothing wrong, or that they can't tell (which may be true); that your complaints are actually of the condition and not the drug, etc. These people have no idea what they're talking about. I have a supportive and attentive girlfriend, who was able to see many of the subtle things (to an outside observer) of which I complained. That was very helpful to me. My father on the other hand, thinks this has all been exaggeration and a hypchondriac's prattle. So I had to deal with that and it's tough. The drug is devastating for real; don't be BSed out of knowing that. My diagnosis was psychosis NOS (not otherwise specified). That basically means I didn't get a "real" diagnosis cause they weren't sure what I had / had happened. My psychosis consisted entirely of paranoid delusions and it lasted about 45 days - I had no hallucinations, no difficulty thinking (delusional belief formation aside), etc - I definitely had paranoid delusions though. I also separately have depression and high anxiety. I normally take no medications of any kind and I never do any drugs, including alcohol, with the sole exception that I sometimes smoke tobacco. I'm a physicist with advanced degrees and I went to/ worked at some of the very top schools in the country. That's diagnostically relevant, but I'm also hoping to get a cred. boost. I'm 29 years old. I still am trying to figure out what my underlying diagnosis is... bipolar perhaps? I don't think I have schizophrenia, but I'm not certain. Statistically, it would be a late onset. I really just don't know, and neither did my doctor(s). But I was told to continue taking antipsychotics just in case I was schizophrenic and I disregarded that advice. I recovered "100%" from my psychotic delusions in late January, which I was told is rare. So far I've had no recurrence of any psychotic symptoms. As far as I could find, there is nothing that can be done to speed the removal of the drug from your body. I suspect that obesity makes the drug last longer as it gets stored in fat, but that's a bit of a guess. My intuition says drink a lot of water and exercise if you want to try and speed up the removal. According to the label for Invega sustenna, enzyme CYP3A4 might be important for eliminating paliperidone. It says that if you take an inducer of CYP3A4 you may need a higher dose for paliperidone to be effective. It later claims that this result is contradicted by other studies, so its unclear. You could try to induce that enzyme. Capsaicin is the only food I found online to induce that enzyme. I never tried it, and I certainly didn't want to take another drug for this purpose, but I wouldnt mind spicy food. Kind of an aside I guess, but it might be worth trying. St. John's wort is a major inducer as well, but its a drug. After the amount of time I've been off the drug (better put - since last injection), I'm not sure anymore if I'm still heavily drugged, or rather if my brain chemistry hasn't normalized (or if there is permanent and irreversible damage). A bit of both I expect (or all three). But FYI the half life for a 234 mg dose is 49 days. My dose was essentially 400mg in some sense. Your dose (naively at least) is 100 mg plus what was left over before that; probably another 200 mg or so. So permanent damage from duration of use aside, we probably quit from similar dose amounts. Since the half-life decreases with quantity, using 49 days should give you conservative estimates of the amount of palmitate left. I remember finding 15mg to be the best conservative estimate of my equivalent oral daily dose at injection time. SO, 2 months later, its about 7.5 mg/day and so on. I'm not sure how useful or accurate this method is though because it doesn't align with my experience that well. One thing to keep in mind is that 49 days is a median. That means for some people they still had 85% after 49 days. I found something a while back that had actual raw data and the variance was very high. I personally set my expectation at double the median to be very conservative. With the time of "brain recovery" though, I mean... this is pretty much guess-work. The main thing is the my personal "raw data" - which is that I know how I feel. And you do get better over time. I would be interested in getting a blood test to see how much drug is still in me (and how much prolactin), but I never did that. You could consider that if you were very curious. Another kind of raw data. Anyway, I've learned a lot about paliperidone from obsessing about it online the past 11 months. Bipolar patients can expect decreased cognitive funtion, including poor verbal recall, poor working memory, and slow processing speed. Switching to abilify can reverse hyperprolactinemia, for anyone having sexual issues and wanting to stay on anti-psychotics. That first tidbit points out that the underlying condition can have a big impact on your experience of paliperidone, since the drug apparently improves thinking for some schizophrenics. This is already too long and I think it hits what you wanted to know already, so I'll end here. Hope this helps. You just have to wait it out... for you know, maybe 18 months total? It's a while. Good luck. And as far as permanent effects I'm in your boat completely. Anyone out there have information about how things look past 11 months? Probably the most insightful and informative reply I have had yet. Thank you very much. It has been almost 4 months now and I have yet to feel any improvement. You only had two starter shots and you still haven't fully recovered from it fully. This is frightening for someone who has been on it for 10 months like myself. Please, keep us updated with your recovery progress. I am very interested to know if or when you can recover fully from this drug.
  3. I met my mood specialist for the first time today. We had a long talk and he asked me a whole bunch of questions. Ultimately he agreed with me and also believes that I am suffering from neuroleptic induced anhedonia. I mentioned to him that aside from helping me sleep a bit better, mirtazapine doesn't seem to help with anhedonia at all. He suggested me to try Effexor but I refused and explained to him that I would like to not rely on any more psychiatric drugs and informed him also that I am tapering off mirtazapine. Surprisingly enough, he agreed with me and decided to not push any medication on me. I will meet with him and my psychiatrist again in two weeks. Tomorrow is going to be the second Xmas I am spending with anhedonia... Merry Xmas and thanks for reading.
  4. Invega Sustenna did not cause me any weight gain. In fact I have almost no appetite and lost weight. As much as I hate its side effects, I have to admit it also does a good job in dealing with positive symptoms. Hope this helps.
  5. Hi, I was wondering if there are any other differences aside from the half-life/elimination time between parenteral and oral antipsychotics/neuroleptics? Would there be more side effects resulting from one method than the other? The medication itself would still be the same regardless, or would there have been some changes to the formula for the extended release quality of the drug? I know this may seem like an odd question, but I was really wondering if someone could tell me a bit about this. Thanks in advance for any respond!
  6. Yeah.. I had a feeling Listerine would work. I hope this combo works out for you, Puddles2009. Good luck to you.
  7. I am really interested in Bitopertin. I wonder how effective it would be on anhedonia. Wikipedia says it will complete the phrase iii trials by 2015. That's still a long way to go...
  8. I'm surprised those didn't work for me since they sure worked for me. Maybe chewing gum or something lol. Numb the heck out of your tongue with Listerine? I'm sure if you get creative you can find a solution.
  9. What were you on Serequal for? It's an antipsychotic/neuroleptic, right? I didn't know that they can also cause you to itch. But that sure sounds awful. I am so glad that I didn't get that. Congratulations on your recovery though. I'm really happy to find people who recover from antipsychotic drugs since it gives me more hope that I can recover from mine too. Have you asked your doctor what you can do to help this symptom?
  10. Yeah, I'm planning to let my doctor know about it on my next appointment coming up I will also get to see a mood specialist for the first time, so looking forward to what he can offer in terms of treatment.
  11. I came across this and thought I would pass it along: http://www.ncbi.nlm....les/PMC3267352/ and http://sbxsupplements.com/b_vitamins Apparently Vitamin B12 and Vitamin B9 (folic acid) have been shown to help with negative symptoms even when used in conjunction with neuroleptic drugs. I have bought myself some today and took double daily dose and will continue to do so for a while and see if it will help at all. Right now I am willing to try anything, so. You might want to give this a shot as well. Who knows, maybe you will actually benefit from it and there's no harm in doing so. You can't possibly OD on these vitamins and they are reasonably priced. Good luck to the both of us.
  12. I remember when I was still at the hospital I was given a number of pills to take. One of them left the same metalic taste in my mouth like you described. It bothered me a bit and all I did was just drank or ate something to get rid of the foul taste. I don't think there is any medication you can take to get rid of the metalic taste of some antipsychotics. For me it was juice and cheese sticks they had at the hospital that got me through that metalic tasting phase. Now I'm not taking anything orally.
  13. Thank you That is interesting. I haven't seen that article before. I will try to take VItamin B12 supplements and see if it would help speed up the recover process.
  14. Hi, I would like to start a new thread since my last one was a bit too anti-psych for many people here and I really don't want to be stepping on anyone's toes. I would like to be as logical and objective as possible in dealing with my problem. I was misdiagnosed with schizophrenia last year and was forced under the Mental Health Act in Canada to take Invega Sustenna at 100mg a month via injection for 10 months. A week or so after my first injection I began to develop severe anhedonia that only gotten worse over time. My doctor finally took me off it and it has been three months and a half since my last injection. I have yet to feel any improvements. My current condition is as followed: - Inability to experience pleasure, joy, happiness, sadness, or any type of emotions. - No appetite and never feel hungry anymore. Can go for days without food and when I do eat it tastes bland. - No motivation, willpower, or desire to do anything. I spend all day in bed or pace around my apartment. - Substances that used to give pleasure all have stopped working, i.e., cigarettes, alcohol, coffee, etc. - Constantly feeling restless, despair, uneasy, and extreme boredom. Nothing I do can change this. - Cannot formulate complex thoughts. Difficulty reading and writing. - Memory problems. Both short term and long term - Zero sex drive. - Music sounds flat. - Difficulty finding things to say in a conversation. I feel mentally incapable of holding a conversation. - Difficulty planning things for the future. Please, don't try to convince me that neuroleptic drugs do not cause anhedonia. "Emotional-blunting is de-motivating because drive comes from the ability subjectively to experience in the here-and-now the anticipated pleasure deriving from cognitively-modeled future accomplishments [2]. An emotionally-blunted individual therefore lacks current emotional rewards for planned future activity, including future social interactions, hence ‘cannot be bothered’. Demotivation is therefore simply the undesired other side of the coin from the desired therapeutic effect of neuroleptics. Neuroleptic ‘tranquillization’ is precisely this state of indifference [8]. The ‘therapeutic’ effect of neuroleptics derives from indifference towards negative stimuli, such as fear-inducing mental contents (such as delusions or hallucinations); while anhedonia and lack of drive are predictable consequences of exactly this same state of indifference in relation to the positive things of life." http://www.hedweb.com/bgcharlton/neuroleptics.html I am looking for people who have taken neuroleptic drugs before and how you have dealt with anhedonia and how long after stopping the medication for the anhedonia to go away. I have found people who recovered from neuroleptic induced anhedonia ranging anywhere from 3 months to a year after their last dose depending on the medication and dosage. I have yet to find anyone who has taken Invega Sustenna for as long as I have and recovered from it. I have also found cases of people who still suffer from anhedonia 5 years after having stopped their neuroleptic drugs. I really am looking for some hope that this will not be permanent. Thank you.
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