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Antipsychotic survivors? Interested in your stories

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Staz

Living proof that listening to your body is paramount and not getting hung up on percentages or sxs's. Thanks for posting.

Steve

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apathetic

I am getting closer and closer to writing my success story, as time passes.

Please correct me if I'm wrong, but I personally don't think there is a big of a difference between recovery from antipsychotics, antidepressants or any other drug (that you are physically addicted to, let's call it that way). Everyone's symptoms are different, so the duration of recovery is different. It depends on many factors. But we are all suffering from one same thing - withdrawal syndrome. There are only variations of symptoms we experience, but many of our symptoms are the same. I think the reason why there aren't as many success stories as there are for antidepressants is because the number of people who are taking ADs is huge compared to number of people who are taking APs.

Well, I am getting better, and my withdrawal started when I got cold-turkey off antipsychotic.
The ability to think clearly, logically and make sense of things is back and it's even better than it was before WDS, the ability to feel, experience pleasant feelings, enjoy life when I can, eat normally, sleep normally and not be under severe stress. What I still struggle with is dissociation, but that is also much, much better than it was and it's a result of my childhood traumas that I am trying to resolve with my current therapist (as a tool we are NOT using medications, only psychotherapy).

And yes, I am able to tell people I love that I love them and really feel it inside, not only rationally know that I do so, which is a major improvement for me, besides everything.

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Iatrogenesis
On 4/18/2018 at 1:32 AM, apathetic said:

I am getting closer and closer to writing my success story, as time passes.

Please correct me if I'm wrong, but I personally don't think there is a big of a difference between recovery from antipsychotics, antidepressants or any other drug (that you are physically addicted to, let's call it that way). Everyone's symptoms are different, so the duration of recovery is different. It depends on many factors. But we are all suffering from one same thing - withdrawal syndrome. There are only variations of symptoms we experience, but many of our symptoms are the same. I think the reason why there aren't as many success stories as there are for antidepressants is because the number of people who are taking ADs is huge compared to number of people who are taking APs.

 

In Europe, perhaps, although I'm not sure it's a HUGE difference.

In America though:

 

https://www.alternet.org/most-popular-drug-america-antipsychotic-and-no-one-really-knows-how-it-works

Abilify was the most popular drug of 2014. This is all because antipsychotics are being prescribed for an increasing number of diseases/disorders/what have you.

 

If there aren't as many success stories (I guess you mean in general, on the Internet), then it's perhaps because fewer people are aware of APs causing WD as well. This could have something to do with this multi-million pound class action lawsuit:

https://www.independent.co.uk/news/business/news/gsk-facing-uk-lawsuit-over-anti-depressant-755776.html

And the previous action against Glaxo

 

Quote

 

Following complaints from patients, GSK agreed last

summer to remove from the patient information leaflet an assertion that the drug is not addictive.

 

 

The lawsuits leveled against APs seem to be more concerned with some extremely disabling symptoms, diabetes, things like that.

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risperdalhater
On 11/3/2017 at 8:46 AM, Plshelp said:

Risperadalhater, 

 

You've recovered? Really? How long were you originally on it for? What were your original symptoms? You can send me a pm if you'd like. Thx I appreciate your time. 

 

Yes I recovered. My original symptoms were akathisa, very weak muscles/joints, anxiety and a deep depression/emotional numbness.

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Wassimlapino

Hey guys ,

i took zyprexa , flupentixol and imipramine few years ago and am not healed yet

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Wassimlapino
52 minutes ago, risperdalhater said:

 

Yes I recovered. My original symptoms were akathisa, very weak muscles/joints, anxiety and a deep depression/emotional numbness.

How long did it take for u to feel normal again? 

Are ur emotions healed ? Had u ocd or brain zaps? 

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risperdalhater
15 minutes ago, Wassimlapino said:

How long did it take for u to feel normal again? 

Are ur emotions healed ? Had u ocd or brain zaps? 

 

It took me 14 months. My emotions were healed and everything.  

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Wassimlapino
3 minutes ago, risperdalhater said:

 

It took me 14 months. My emotions were healed and everything.  

Sounds impressive! 

Have u been on aps long time? Do u suggest any supplement? 

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Plshelp
On 11/4/2018 at 11:27 AM, risperdalhater said:

 

It took me 14 months. My emotions were healed and everything.  

I have been off antipsychotics for 17 months. But I'm still on antidepressants. I have not healed at all. Still waiting.... But, I honestly don't know how much longer I can hold on. I am so disabled, I can barely function. 

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risperdalhater
4 hours ago, Plshelp said:

I have been off antipsychotics for 17 months. But I'm still on antidepressants. I have not healed at all. Still waiting.... But, I honestly don't know how much longer I can hold on. I am so disabled, I can barely function. 

 

anti-depressants can cause problems too, just saying.

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dksleuth

 

 

    I took anti-psychotics for one year straight at high dosages.  Seroquel (400 mg), Latuda (120 mg), and Abilify (20 mg) all at different times throughout the year.  I had no idea how dangerous these drugs were until after I discontinued them.   I discontinued them when I started to experience fatigue, memory loss, difficultly concentrating. I did not taper but discontinued Abilify (my final medication) within a weeks time  I am recovering very slowly, if at all. I am glad I no longer feel like I am dying but i'm concerned that the cognitive effects are permanent. I don't feel like the same person.  It is difficult for me to hold a conversation, my attention jumps all over the place, and my energy level is shot.  Reading is a struggle.  I am unimaginative, uninspired, and incapable of planning beyond a moments notice. The effects have adversely affected my career, my friendships,  my spirituality, my hobbies. 

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Griqua

Risperdalhater how did it feel when you were healing months 11 - 14 ? What sort of signs should we be looking for ?

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risperdalhater
1 hour ago, Griqua said:

Risperdalhater how did it feel when you were healing months 11 - 14 ? What sort of signs should we be looking for ?

 

everyone is probably different when it comes to "signs of healing" but for me it was more physical strength and motivation gradually coming in.

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dksleuth

 

   I appreciate these stories of recovery.  They are inspiring and give me  a lot of hope.  I believe there is nothing more powerful in the recovery process than our shared experience. 

 

     Nonetheless, I still feel different.  Has anyone recovered after being on a particularly high dosage of anti-psychotics for an extended period of time. Throughout last year I was on 400 mg Seroquel, 120 mg Latuda, and 20 mg Abilify.   All at different times of course.  I was misdiagnosed and overmedicated.  I am discouraged because it seems like most the success stories I'm reading are by people who took anti-psychotics only briefly or in small dosages.  I know there has to be someone out there who went through heavy sedation.

 

   It took me a while to even realize that the drugs were having a detrimental effect.  It was really while on a high dosage of Latuda that I reached a tipping point and began to experience severe fatigue.  After a particularly gross experience with Abilify I discontinued all anti-psychotics in the period of about a week. Some of my symptoms are slowed cognitive processing, memory problems, lack of motivation, difficultly planning and executing a plan, social anxiety, flattened emotions, lack of creativity, insomnia.  Based on my research I believe most of these symptoms are caused by the suppression of dopamine.  If so,  what are the odds of the dopaminergic system in my brain recovering.  Should I expect months, years?  It really feels like this is an incremental process.   I finally woke up in a good mood for the first time in months and count that as a small victory. 

 

      I am trying to do everything I can to live healthy.  I am taking fish oil and magnesium supplements.  I have not been able to completely give up caffeine and cigarettes (I want to) because they are the only thing that gives me the hit of pleasure that I need to keep going in the drab world I now inhabit.

 

   

 

 

 

 

    

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Tanha
On 11/29/2017 at 4:58 PM, ang said:

Was on masses of seroquel.        Did a dive after an unsuccessful attempt to stop ADs, so the ""sleeping tablet"" dose went up to a massive dose because the general practitioner said  ""oh you are only on a low dose, you can take up to ""insert amount"".          Problem being at a high dose it becomes a major antipsychotic.         The only reason I was ever psychotic was due to my adverse reactions to valium.
Long story short, hard to get off the crap, you need to recognise thoughts that are irrelevant and wrong.          Stay out of trouble, and taper slowly. 

It can be done, I was on a massive dose.              All gone now, and feeling great.    And beware, the lower the dose, the SLOWER you go in your taper.    

Dear @ang

 

how slowly did you taper quetiapine/seroquel? 

Where did you jump off?

how are you now?

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Tanha
On 12/17/2018 at 12:55 AM, Plshelp said:

I have been off antipsychotics for 17 months. But I'm still on antidepressants. I have not healed at all. Still waiting.... But, I honestly don't know how much longer I can hold on. I am so disabled, I can barely function. 

Dear @Plshelp

 

sorry that you suffer so much. 

Same with me.

how are you now?

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Happy2Heal
On 12/18/2018 at 7:25 PM, dksleuth said:

  Has anyone recovered after being on a particularly high dosage of anti-psychotics for an extended period of time. 

 

 

hi dkslueth

when I was younger (mid to late 20s) I was on several APs, the older ones, stelazine and haldol (haldol for about a year..? then back on for some months here and there, and then given other APs, trilafon, respiradol (sp?) and I forget what else)

I recovered from that round of APs

 

sometime between 2002 and now**, I was on huge doses of seroquel for a long time, 400 was the min dose, I think it went up to 600 or more. I was also on zyprexa but I got so heavy on that and was so sleepy I had to discontinue it- I think that was actually in 1996, when I was 40.

 

anyway, I did have some pretty severe physical symptoms going off the seroquel, esp a painful neuropathy in my hands and mostly in my feet.

I was also on ADs so I don't know if those masked any emotional or psychological symptoms of WD, sorry I can't help you there

 

but the main point of my post is that yes, I am someone who was on a lot of APs and have recovered from it. My feeling is that my recovery from the APs was actually quicker than the recovery from those horrible SSRI's but I could just not have a good sense of the timeline and I def have a poor memory (partly due to not wanting to remember, to be perfectly honest)

 

I hope this gives you some hope. I think you will probably be ok. 

 

**sadly my rRx drug load was very high and varied during this time, so I can't tell you the precise dates, sorry!

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ScaredandLonely

 i am  currently  trying to  wean  down from 1mg Risperdol. any  success  stories  im  terrified  that i am left  permanently  with no emotions. i just  wanna die. 

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Tanha

Same with me. All emotions gone and severe anhedonia. 

Ct cymbalta in March and tapered mirtazapine and quetiapine to fast. 

I have the same fear. 

I need to start getting more functional but with no interest and emotions this is almost impossible.

hang on.

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Plshelp
On 12/23/2018 at 7:08 AM, Tanha said:

Dear @Plshelp

 

sorry that you suffer so much. 

Same with me.

how are you now?

Tanha

I apologize. I do not know how I missed your response. 

 

My update is available under my thread. 

 

I am sorry to hear that you also suffer. Xo

 

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kirby

Link to kirby's success topic:  my-story-1.2-years-and-getting-better

 

 

For anyone interested in my story, I had a relatively short time with zyprexa, around two months, but I quit cold turkey without relapse for over a year and getting better. To begin with, my dose was 10 mg, with lithium for a week, increased to 15 mg at the last week. Every moment of taking these drugs I wished I could get off it, but under the supervision of doctors and threat of hospitalization I was forced to be fed this stuff. Right after the supervision stopped, I convinced my family to let me quit and quit cold turkey by telling them how I felt like I was in a spiral of darkness and emptiness and it would only get worse. 

 

At first, for the first week I had absolutely terrible symptoms. I could not sleep even though I was tired, I felt the need to talk and continue talking, and I had this overwhelming feeling of dullness and emptiness in my spirit, and I felt like my body was about to collapse. But my family was super supportive (not to brag but maybe someone that reads this might be more knowledgeable on what worked for one person, also one of my family members is a registered nurse): every morning they forced me to eat a breakfast of toast, eggs and milk, and then go out on a walk with the dog. Then, as often as they could they would take me out, to eat, go shopping, or just drive around to let me feel refreshed. They forced me to go to bed at 10:00 every night even if I couldn't sleep, and even accompanied me by setting up a towel and pillow on the floor. They smiled when they talked to me, ignored the weird stuff I said, and were patient when I spoke slowly. When I mentioned wild things and they were really hurt by it, they never suggested sending me back to the hospital. Sometimes they would get super frustrated, they were even experiencing their own traumas because of my illness, but they kept it between them and didn't say a word to me (they would go to another room and vent or whisper). Also, I didn't have to work or go to school because it was the summer and my family was fiscally supporting me (I am young). One important thing to mention was my personal determination: I felt the medicine was terrible for me and I was willing to go through any and all symptoms no matter how severe because I wanted nothing to do with the medicine anymore. The strict schedule and kind attention and daily exercise and lack of pressure and probably personal determination was the foundation of my good recovery, although time ultimately was the answer.

 

After the first month I was able to express my thoughts better, but I was still dull everywhere. Also, I started to fear that I was changed forever. Most importantly, I started having massive crying spells. When words couldn't come out of my mouth I just started to feel really sad. Sometimes I would sit and cry for hours, with an unexplained mix of feeling of loneliness, neglect, and pain even though everyone was always kind and checking up on me. I believe this may have been associated with the reason why I had to take the medicine in the first place (I am pretty sure it was external social isolation because of my personality, situation, and previous social trauma). One time the neighbors called the police because they were concerned that someone was crying for hours on end all day (the police ended up leaving with nothing because I wasn't crying at the time they came and there was nothing wrong). This increased the tension, and I felt even worse. I started going into the closet to cry, but it didn't make the crying stop. My family started to get really upset because it made them feel terrible, but that made me feel worse. I was improving every day still, but it wasn't enough to stop the crying and nobody knew what to do. Then, I decided I needed to take action in my own hands and got myself a video game machine (2ds) - something I wanted but didn't want to spend money on for years because of the impact it might have on my studies and family, and the social memories it brought back. This stopped the crying, because I felt had something I could do whatever in and there were no consequences, and it probably made me rethink my negative memories in a more positive way. I still struggled with sleeping, always waking up at least once in the middle of the night, and never felt completely refreshed after sleep, but I was happy that I felt improvement.

 

After that, school was beginning, so I was encouraged to go to school (two upper division courses). However, I felt overwhelmed by the material - I was struggling to retain any information and concentrate. I knew i probably couldn't last, but it made the people around me feel relieved, so I dragged it on for as long as I could. When the test scores came in, I thought about my life overall and realized that I didn't have the capacity to do studies at the moment and also the stress hindered my recovery so I dropped the course. My family was upset, but because they saw my effort they were understanding. During this time I happen to find a free class on essential oils at health food store, and attended it. Then, I bought some essential oils for myself (doterra brand oil) and a diffuser, and tried it. It worked wonders and I was able to sleep through the night without waking. When I was stressed out and felt sad, it completely calmed me like I was lifted into another world. I also tried regular meditation, but it was hard, so I stuck with oils, playing video games, and guided meditations that I listened to into sleep (using the free phone app "insight timer"). I also visited a chinese medicine doctor who was in town; he taught me 6 exercises to relieve stress: using fingers to hit the baihui point on top of the head, hitting the sides of the legs (danjing - galbladder meridian), pushing the taichong point on the feet, tensing the gluteus maximum muscle then releasing it (progressive muscle relaxation), standing on toes then dropping the body (shaking the top of the head), then just standing around and shaking yourself for 5 minutes. He said doing that every day for a year would make me recover completely. This made me feel a lot better, both physically removing numbness in my head and knowing there was something I could do to make recovery faster, but I still was worried that I wasn't well enough for school and thought I might stay that way - now I know better because I experienced healing that time brings. 

 

Around at the third month, I started to have a new problem: gastrointestinal upset. Everything I ate no matter what came out immediately from the other end. It was awful and when I went to the md they could find nothing. My family contacted the chinese doctor and he gave me some special herbal tea to drink (it cost a lot), which in fact did improve the condition. When the tea ran out I had occasional bouts of diarrhea again, but it was ok because it was only occasional and before I started the medicine I was already having some gastrointestinal problems. As a postscript, this year I tried wormwood tea and found out I had a little bit of parasitic worms, which removing really helped my intestinal health. I still had diarrhea though (probably weak gut bacteria after the medicine) until I started eating around a teaspoon of expeller pressed organic coconut oil daily (originally for oil pulling). The coconut oil also improved my thinking in the week I ate it, so it might have further implications, although I have stopped because I recently got a cold and my intuition tells me to give my body a break. Overall, although I might one day completely recover, I now understand health is a lifelong project, and always trying to find something to make it better is a good habit.

 

Then two months later when the next semester of school came around, I decided to try to both get progress in my life (having a goal really makes recovery less tedious) and improve my physical health so I took a taichi class (upper division). I was terrible at it, still had terrible memorization, and ended up failing it. However, it made my family happy that I tried and I felt more confident about myself (I got through the semester without dropping). During this time I also met regularly with my primary physician - I wanted to maintain a good relationship with my doctors (assists in the trauma caused by the experience). At first they recommended I meet with a psychiatrist, but when I was adamant I wanted nothing to do with that field since it muddied up things too much, they were alright with it because I seemed to be improving. My doctor allowed me to visit a neurologist to address my concerns of involuntary twitching (happens all over the body when I am emotional, getting much better over time), and while the neurologist completely brushed off my concerns, it made me feel like I was making progress in understanding myself (at least I got to voice my concerns and feel less alone). Looking back, it also addressed the primary cause of my illness (social isolation). Mostly, I just followed my own gut on what to do next, and at this time my flexibility, optimistic view, attacking the original problem, and family support was the key.

 

Around the ten month mark, I decided I might never be able to go to school again (still unconfident in my ability to learn), so I went to the local community college to talk about other options. In the college they recommended that I might get a job, which I never really had before. Therefore, I went and applied to my dream job (doesn't require school) which was being a carrier at the postal office. I was very lucky, because they were in a shortage of new hires so I got the job. This really boosted my confidence and self worth, and I tried my hardest at work. It was a full time job, 9 to 5, and really demanding, but I was living out a dream I always had and exercising all day, which probably really made me recover better. However, I lacked the physical strength, and some of my coworkers and managers encouraged me to do something else, while others were really kind and encouraging. For the first time in my life, I felt "workplace problems" and "pride in my own work" and "following a dream" and I also felt "being needed and belonging". These all related to my initial problem and were very therapeutic in living out and solving, which was probably the biggest turning point in my recovery. Before this point I was also reluctant to go to school (relevant to my initial illness), because it reminded me of my social problems and I didn't understand the urge. Now that I did, and understand the value of school and its relation to my personal life, I determinedly decided to go back to school, making my family happy, quitting my previous "dream job", and going for my degree. Doing this also improved my other family member's high blood pressure they had for over a decade.

 

The past few months really showed this recovery: this semester in school, I was able to read over 20 chapters of textbook, take long essay exams and passed two upper division classes with A's. Still, I feel woozy at times, and can have grumpy tantrums, but I am understanding how to be patient with myself, trying to continuously improve, and ready to take on challenges in my life. I feel I have effectively resolved my initial problem to the point I can keep growing, and mostly recovered from medicines, and I also have a much better attitude in life. I am still recovering, however, but it has become just another part of my life. Yesterday I came across this form while searching for information on zyprexa (because I learned klonopin was a controlled substance from a cop cam show and wanted to do and wanted to see if zyprexa was one too), and related very well with other people's experiences, so I wanted to share mine. I writing so that my experience might inspire happiness and belief in oneself to others. The important thing to hang onto, in my opinion, is a belief to see things through with yourself whatever happens and keeping in touch with the people that are important to you.

 

Edited by ChessieCat
added link to success topic

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frasier23
On 12/19/2018 at 1:25 AM, dksleuth said:

 

   I appreciate these stories of recovery.  They are inspiring and give me  a lot of hope.  I believe there is nothing more powerful in the recovery process than our shared experience. 

 

     Nonetheless, I still feel different.  Has anyone recovered after being on a particularly high dosage of anti-psychotics for an extended period of time. Throughout last year I was on 400 mg Seroquel, 120 mg Latuda, and 20 mg Abilify.   All at different times of course.  I was misdiagnosed and overmedicated.  I am discouraged because it seems like most the success stories I'm reading are by people who took anti-psychotics only briefly or in small dosages.  I know there has to be someone out there who went through heavy sedation.

 

   It took me a while to even realize that the drugs were having a detrimental effect.  It was really while on a high dosage of Latuda that I reached a tipping point and began to experience severe fatigue.  After a particularly gross experience with Abilify I discontinued all anti-psychotics in the period of about a week. Some of my symptoms are slowed cognitive processing, memory problems, lack of motivation, difficultly planning and executing a plan, social anxiety, flattened emotions, lack of creativity, insomnia.  Based on my research I believe most of these symptoms are caused by the suppression of dopamine.  If so,  what are the odds of the dopaminergic system in my brain recovering.  Should I expect months, years?  It really feels like this is an incremental process.   I finally woke up in a good mood for the first time in months and count that as a small victory. 

 

      I am trying to do everything I can to live healthy.  I am taking fish oil and magnesium supplements.  I have not been able to completely give up caffeine and cigarettes (I want to) because they are the only thing that gives me the hit of pleasure that I need to keep going in the drab world I now inhabit.

 

   

 

 

 

 

    

My periods on antipsychotics were quite brief (10days + 2 months). On thing I can tell you that may be of interest is that I was not able to wrote properly here for a long time. I believe your writing is much better so your hopefully already in a better state than I was. 

 

It took me almost 1.5-2 years before I started to see any differens e that made me hopeful about the future. GL

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