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comingbackhome: Introduction - struggling with antipsychotic tapering and injustices of psych system.


comingbackhome

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Hi all,

 

First, I just wanted to say I'm so grateful to have found this site. I have been reading it for a few hours every day the last few days and it's really helped me feel less alone, and come up with a tapering plan I feel relatively safe with and confident about. The work you all do is truly a lifesaver both emotionally and physically, and I don't say that lightly.

 

I wanted to share my story in case others are struggling with the same thing, and to perhaps get advice/confirmation about tapering and whether what I am thinking is a good idea. Also, I am just struggling mentally with the fact that psychs and the mental health system, who for so long I though were supposed to help people with these problems, are actually causing so much harm and have already caused so much harm to me and other people. I thought others here might relate.

 

 

My story (shortened version):

I have a long history with psych meds, but I will start at the most recent/significant part. In my 20s (I am 32) I struggled with an eating disorder and undiagnosed OCD. I ended up in an inpatient treatment center where they switched my AD from Citalopram to Sertraline, and added an antipsychotic, Olanzapine (2.5mg). This is where all of the horrors started. They did not inform me that Olanzapine is an antipsychotic - they simply called it a "mood stabilizer" which it is but it is also an antipsychotic - nor of the possible side effects, or dangers of withdrawals (I am learning from this site that this situation is unfortunately all too common).

 

I later felt that the Olanzapine wasn't helping me with what they said it would (anxiety/depression and stabilization of energy levels) so I decided to slowly stop taking it. However, I was in a very chaotic time at my life - the Olanzapine drastically increased my appetite, which made my eating disorder feel all the more out of control, and my life felt out of my hands. I could not maintain a routine and I took the medication sporadically at best and then stopped taking it around spring of 2018.

 

I suffered terrible withdrawals, which I thought were organic mental health issues at the time - awful both outer and inner akathisia (feelings of terror, needing to run and move constantly for fear of something horrible happening), psychosis and more. I truly thought I was going to die or my world was going to end, and my life was completely out of control. I was also living out of my car at this time.

 

I was hospitalized in July 2018 for psychosis. They did not know it was caused by Olanzapine withdrawal (nor did I at the time) and they put me on a round of antipsychotics, finally settling on Fluphenazine/Prolixin 2.5mg. 

 

I have been on this medication for 5+ years and it has taken away all of my life, spark, and hope. I have felt like I have lost the best and truest parts of me, which was always my greatest fear throughout my psychosis. It is truly a state I would never wish on anyone. I have quit multiple jobs because of severe depression and am now unemployed living with family.

 

I had lost all hope until I discovered that others feel this way on antipsychotics and it is likely the drug making me feel this way. Also, knowing that my initial psychosis was likely caused by withdrawal makes me feel much safer getting off of it. I have hope for the first time in a long time.

 

 

My current tapering situation:

I tapered 3mg-2mg myself and felt okay. I had not been on 3mg for long, maybe a month. Then I saw a psych nurse who suggested I go down to 1mg after only being on 2mg for a couple of weeks. I felt great for about a week and then withdrawals hit, and I realized this was a big mistake. (Note: I was on 1mg from 12/23/23/ - 1/1/23).

 

I have since gone up to 1.5mg (1/2/23). It has been 5 days and at first was feeling very sedated and depressed (likely from sensitivity after being on 1mg) but am at least today feeling much more stable. 

 

 

My plan:

I am planning on stabilizing on 1.5mg for 3 months. This may be overkill but I'd rather play it safe at this point. 

After that I am hoping to use the brassmonkey slide tapering method. I am very excited about this and the amount of gradual progress and control this method provides gives me a lot of hope.

 

I am unsure if my prescriber will be willing to let me do this, but I may just tell her I want to do a 25% reduction over 3 months and do the liquid suspension of 2.5% reduction per week myself. I would rather get it from a compounded pharmacy but am unsure if insurance will cover it or if my psych will listen.

 

 

Questions:

1. Has anyone had luck with psychs/psych nurses agreeing to the 2.5% weekly reduction and 2 week hold plan? Does this even matter? Is it possible to work out getting the right prescriptions without informing your psych of what you're doing?

2. I have read the info on creating oral suspensions and will keep reviewing these threads but am nervous about getting it exactly right. If there is some minor difference day to day (e.g. different amount of stirring, slight differences in the dose, etc) can that wreak havoc on your nervous system? Is it still better than doing using whole pills and doing say a 25% drop every 3 months? I know I will have to deal with some withdrawal symptoms but want to be the kindest with my body I can possibly be after all it has been through.

 

 

Thank you so much for all of your help. I hope this was an okay way to do an intro post. If there is a different thread I should post this or part of this please let me know and I will move it. Sending support and healing to you all. ❤️

2010-2017: Citalopram, 10mg

April 2017: Doc switched me to Zoloft 100mg and Olanzapine 2.5mg

Dec 2017: Independently tried getting off of Olanzapine - sporadic doses then CT - severe withdrawal (psychosis, akathisia) 

2018: Hospitalized due to psychosis. Prescribed Fluphenazine 2.5mg

2018-2023: Varying doses of 1.5mg-3mg Fluphenazine

Summer 2023: Psych upped Sertraline to 150mg

Oct 2023: Psych upped fluphenazine to 3mg

December 2023: Started taper of fluphenazine. Went down to 2mg

12/23/23: Psych had me go down to 1mg fluphenazine

1/2/24: Reinstated to 1.5mg due to bad withdrawal

1/8/24: Reinstated to 2mg due to continuing severe WD symptoms

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  • Moderator

Hello comingbackhome,

 

Welcome to SA. Thank you for summarizing your drug history in your signature.

 

1 hour ago, comingbackhome said:

1. Has anyone had luck with psychs/psych nurses agreeing to the 2.5% weekly reduction and 2 week hold plan? Does this even matter? Is it possible to work out getting the right prescriptions without informing your psych of what you're doing?

 

We have a resource on this topic at How to talk to a doctor about tapering and withdrawal? What to expect. Generally speaking, most medical professionals are not savvy when it comes to tapering so it is often easiest to ensure the medication is continued  to be prescribed while tapering on your own.

 

1 hour ago, comingbackhome said:

2. I have read the info on creating oral suspensions and will keep reviewing these threads but am nervous about getting it exactly right. If there is some minor difference day to day (e.g. different amount of stirring, slight differences in the dose, etc) can that wreak havoc on your nervous system? Is it still better than doing using whole pills and doing say a 25% drop every 3 months? I know I will have to deal with some withdrawal symptoms but want to be the kindest with my body I can possibly be after all it has been through.

 

We recommend slowly transitioning from a pill to oral solution to see how you react. A schedule could look like -

  • 5-7 days at 3/4 pill and 1/4 water
  • 5-7 days at 1/2 pill and 1/2 water
  • 5-7 days at 1/4 pill and 3/4 water
  • 5-7 dats at 4/4 water

Some people are more sensitive than others but a slow transition should allow you to determine if an oral solution will work as a tapering method.

 

Thanks,

 

Firefly

 

 

Pre- October 2022: Wellbutrin, Escitalopram, CitalopramSertraline, Adderall IR, Vyvanse, Propranolol, Buspar, Ativan, and Latuda

Oct 13, 2022 - Oct 24, 2022 and Oct 31, 2022 - Present: Zyprexa (2.5 mg). Jan 14, 2023 -> Began transition to liquid suspension. Jan 29, 2023 = 2.375mg -> Feb 12, 2023 = 2.25mg -> Feb 27, 2023 = 2.14mg -> Mar 12, 2023 = 2.025mg -> Mar 27, 2023 = 1.93mg -> Apr 10, 2023 = 1.82mg -> Apr 23, 2023 = 1.74mg -> May 7, 2023 = 1.64mg -> May 21, 2023 = 1.56mg -> June 4, 2023 = 1.48mg -> June 19, 2023 = 1.4mg -> July 2, 2023 = 1.33mg -> July 16, 2023 = 1.26mg -> July 31, 2023 = 1.2mg -> Aug 13, 2023 = 1.14mg -> Aug 27, 2023 = 1.08mg -> Sep 13, 2023 = 1.02mg -> Jan 22, 2024 = 0.97mg -> Feb 4, 2024 = 0.92mg -> Feb 19, 2024 = 0.87mg -> Mar 3, 2024 = 0.83mg -> Mar 17, 2024 = 0.78mg -> Mar 31, 2024 = 0.74mg -> Apr 14, 2024 = 0.7mg -> Apr 28, 2024 = 0.66mg -> May 12, 2024 = 0.63mg -> May 27, 2024 = 0.6mg -> June 9, 2024 = 0.57mg -> June 24, 2024 = 0.54mg -> July 6, 2024 = 0.51mg -> July 21, 2024 = 0.48mg -> Aug 6, 2024 = 0.455mg -> Aug 20, 2024 = 0.43mg -> Sep 3, 2024 = 0.41mg -> Sep 17, 2024 = 0.39mg -> Oct 1, 2024 = 0.37mg -> Oct 16, 2024 = 0.35mg -> Oct 29, 2024 = 0.33mg

Oct 14, 2022 - Present: Prozac (40mg) upped from 20mg on Nov 1, 2022.

Oct 31, 2022 - Present: Gabapentin (300mg 3x day) -> May 3, 2023 = 300mg 2x day -> Oct 1, 2023 = 570mg -> Oct 15, 2023 = 540mg -> Oct 29, 2023 = 510mg -> Nov 13, 2023 = 484mg -> Nov 27, 2023 = 460mg -> Dec 9, 2023 = 436mg -> Dec 24, 2023 = 414mg -> Jan 7, 2024 = 400mg

 

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  • 2 weeks later...

Thank you for the advice, FireflyFyte! I really appreciate it. I am going to try the gradual switch to an oral solution and see how that goes when I am ready to taper again.

 

I wanted to post a quick update. I may have made a mistake in reinstating too quickly and was wondering if anyone had advice. I was still experiencing really bad withdrawal symptoms (primarily mood swings, anxiety, fatigue) on 1.5mg after about 1 week, and went back up to my original dose of 2mg in hopes of getting relief. I figured I could re-start with a slow taper from there.

 

It's been about 10 days of the 2mg, and the withdrawal symptoms stopped a couple of days ago, but now I'm worried I'm having bad effects of reinstating at too high a dose. I might have akathisia (internally restless, frightened for no reason, feeling a need to escape), and also am experiencing confusion and difficulty concentrating on anything/doing basic tasks. I'm also pretty tired and sedated/not wanting to get out of bed and my appetite is not good.

 

I understand I may have bad effects either way, but is it a bad idea to start a slow taper right now, say 10% down, and hold there for say a month? I'm worried about changing the dose so much but I feel like this dose might be too high and it might help my body to reduce it a bit. I'm not sure which is worse, the changing or the wrong dose.

 

Let me know what you think. I really appreciate the help and understand that at some point I might just have to try something. I am also about to update the drug history.

2010-2017: Citalopram, 10mg

April 2017: Doc switched me to Zoloft 100mg and Olanzapine 2.5mg

Dec 2017: Independently tried getting off of Olanzapine - sporadic doses then CT - severe withdrawal (psychosis, akathisia) 

2018: Hospitalized due to psychosis. Prescribed Fluphenazine 2.5mg

2018-2023: Varying doses of 1.5mg-3mg Fluphenazine

Summer 2023: Psych upped Sertraline to 150mg

Oct 2023: Psych upped fluphenazine to 3mg

December 2023: Started taper of fluphenazine. Went down to 2mg

12/23/23: Psych had me go down to 1mg fluphenazine

1/2/24: Reinstated to 1.5mg due to bad withdrawal

1/8/24: Reinstated to 2mg due to continuing severe WD symptoms

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  • Moderator

Can you list out your current times and dosages of medication?

 

Pre- October 2022: Wellbutrin, Escitalopram, CitalopramSertraline, Adderall IR, Vyvanse, Propranolol, Buspar, Ativan, and Latuda

Oct 13, 2022 - Oct 24, 2022 and Oct 31, 2022 - Present: Zyprexa (2.5 mg). Jan 14, 2023 -> Began transition to liquid suspension. Jan 29, 2023 = 2.375mg -> Feb 12, 2023 = 2.25mg -> Feb 27, 2023 = 2.14mg -> Mar 12, 2023 = 2.025mg -> Mar 27, 2023 = 1.93mg -> Apr 10, 2023 = 1.82mg -> Apr 23, 2023 = 1.74mg -> May 7, 2023 = 1.64mg -> May 21, 2023 = 1.56mg -> June 4, 2023 = 1.48mg -> June 19, 2023 = 1.4mg -> July 2, 2023 = 1.33mg -> July 16, 2023 = 1.26mg -> July 31, 2023 = 1.2mg -> Aug 13, 2023 = 1.14mg -> Aug 27, 2023 = 1.08mg -> Sep 13, 2023 = 1.02mg -> Jan 22, 2024 = 0.97mg -> Feb 4, 2024 = 0.92mg -> Feb 19, 2024 = 0.87mg -> Mar 3, 2024 = 0.83mg -> Mar 17, 2024 = 0.78mg -> Mar 31, 2024 = 0.74mg -> Apr 14, 2024 = 0.7mg -> Apr 28, 2024 = 0.66mg -> May 12, 2024 = 0.63mg -> May 27, 2024 = 0.6mg -> June 9, 2024 = 0.57mg -> June 24, 2024 = 0.54mg -> July 6, 2024 = 0.51mg -> July 21, 2024 = 0.48mg -> Aug 6, 2024 = 0.455mg -> Aug 20, 2024 = 0.43mg -> Sep 3, 2024 = 0.41mg -> Sep 17, 2024 = 0.39mg -> Oct 1, 2024 = 0.37mg -> Oct 16, 2024 = 0.35mg -> Oct 29, 2024 = 0.33mg

Oct 14, 2022 - Present: Prozac (40mg) upped from 20mg on Nov 1, 2022.

Oct 31, 2022 - Present: Gabapentin (300mg 3x day) -> May 3, 2023 = 300mg 2x day -> Oct 1, 2023 = 570mg -> Oct 15, 2023 = 540mg -> Oct 29, 2023 = 510mg -> Nov 13, 2023 = 484mg -> Nov 27, 2023 = 460mg -> Dec 9, 2023 = 436mg -> Dec 24, 2023 = 414mg -> Jan 7, 2024 = 400mg

 

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Yes!

 

AM 30min before breakfast: 150mcg levothyroxine/synthroid

 

 

8pm (have taken it later the last couple of nights by accident): 2mg Fluphenazine/prolixin and 150mg sertraline/zoloft

 

Thank you for your quick response, I appreciate it.

2010-2017: Citalopram, 10mg

April 2017: Doc switched me to Zoloft 100mg and Olanzapine 2.5mg

Dec 2017: Independently tried getting off of Olanzapine - sporadic doses then CT - severe withdrawal (psychosis, akathisia) 

2018: Hospitalized due to psychosis. Prescribed Fluphenazine 2.5mg

2018-2023: Varying doses of 1.5mg-3mg Fluphenazine

Summer 2023: Psych upped Sertraline to 150mg

Oct 2023: Psych upped fluphenazine to 3mg

December 2023: Started taper of fluphenazine. Went down to 2mg

12/23/23: Psych had me go down to 1mg fluphenazine

1/2/24: Reinstated to 1.5mg due to bad withdrawal

1/8/24: Reinstated to 2mg due to continuing severe WD symptoms

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