leasharoo: recovering from Abilify and other drugs

[leasharoo]

 

I am a young adult who has a history of using psychiatric drugs for the past 14 years of my life.  Before the most recent round of drug use, I was athletic and working as a volunteer for a library and doing things like pickleball, and swimming occasionally. All of these things have now stopped due to the drug withdrawal and recovery period, February 2020 to present.

 

I was put on different drugs for different reasons - ADHD, Anxiety, and recently ones for Bipolar. I was hospitalized 4 times, for extended psychiatric holds and with the first evolving into inpatient therapy for an eating disorder.  The most recent two times were in late 2019 and early 2020.  I never had encouragement to do thorough independent research on the drugs, and had been told to trust doctors instead of making my own decisions about psychiatric drug use.

 

My basic drug history is:

 

Adderall (amphetamine salts) - 2009-2017

Vyvanse (lisdexamfetamine) - 2011

Propranolol - 2010 or 2011

Lexapro (escitalopram) - 2011

Ambien (zolpidem) - 2011 - 2013

Xanax (alprazolam) / Klonopin (clonazepam) - 2012 - 2017

Topamax (topiramate) - April 2014 - July 2014

Risperdal / Invega (risperidone / paliperidone) - February 2018

Effexor (venlafaxine) - February 2018 - October 2019

Wellbutrin (bupropion) - May 2019 - October 2019, March 2020 - Present

 

Abilify (aripiprazole) - Late October 2019 - Early February 2020

Latuda (lurasidone) - March 2020 - April 2020

Lamictal (lamotrigine) - February 2020 - June 2020

Klonopin (clonazepam) - April 2020 - Present

 

My recent drug history, with dosage details:

 

Last year, in October 2019, I was hospitalized for the third time and they took me off Effexor and Wellbutrin put me on Abilify 15mg.  It was my first continuous use of an antipsychotic, as I only had a depot (a loading dose and then single maintenance dose, back to back) of Invega in the hospital in early 2018 and a single oral dose of the Risperdal during that same stay.  Luckily, I don’t think I had any lasting effects from the antipsychotics I took in 2018, however, the recent ones I took in 2019-2020 I feel have given me indefinite side effects and have changed a few things in my brain and body.  I discuss these persistent effects a few paragraphs down.

 

I took Abilify from late October 2019 through early February of 2020 (~3 months in total). It made me feel emotionally numb, and I developed a flat mood and had weight gain and problems like numbness in my hands after waking up from sleep.  I told my doctor I wanted to stop it and they had me quit it cold turkey.  This helped with the hand numbness but I am still waiting for the other effects to get much better.  I was started on Lamictal directly after this, 25mg titrating up to 50mg.  After a month of Lamictal, I stopped due to the fatigue it was causing.  The March taper off Lamictal lasted only a week and involved dose-skipping - 25mg every other day.

 

I was only off of it for a couple of weeks because I experienced bad withdrawal symptoms, and was rehospitalized as a result of all of the drug effects from Lamictal and Abilify.  I was put back on the Lamictal at 100mg, and they added Latuda 60mg and Wellbutrin 150mg (later increased to 300mg).  After two weeks of taking them in the hospital, I went off Latuda shortly after getting out.  I was then put on Klonopin .5mg twice a day as needed after I got out and have been taking .5mg 0-3 times a day (usually just one .5mg pill if any at all).  I have espresso drinks every day and alcohol up to a few times a week, but plan to be reducing my caffeine intake.  I am still learning how to manage better without drugs, because my family has always pressured me into drug use and to do whatever the doctors are saying to do.

 

I most recently tapered off Lamictal 100mg over a period of about 4 weeks starting in April or May and reached zero in early June.  I was dropping my dose by 50% each time and went to zero from 12.5mg.  The feelings I had after reducing Lamictal the first time were severe depression, suicidal thoughts, fatigue, worry, ruminating thoughts about the lasting brain damage effects from the Abilify. I did better the second time I quit, like not feeling suicidal and symptoms feeling less intense, because I had more information and support.  The negative cognitive effects of using Lamictal have improved since I reduced and quit, and I have been using Lumosity to help with my cognitive abilities. My scores have been improving in time, so I take that as a good sign. I also have been having weekly therapy appointments to help with this. 

 

The headaches have gotten worse and worse for the first few weeks completely off it, in June.  I am still experiencing pretty debilitating fatigue since coming off of the Lamictal. I am still finding it harder to do things like working out and having the motivation and energy to take walks and things like that. I also find it harder to multitask on activities; it feels like my mind and brain are in slow motion and unable to go at the speed it once was. I am wondering if this also improves based on other people's experiences from using these sorts of drugs.

 

Some things I have been trying to do to help my brain during these difficult times is playing the game Luminosity, which I do see my scores improving in, resting as much as I can, eating healthy, and speaking with a therapist weekly.  I am partly here because I feel like I need more social support; my family doesn’t understand what I am going through.  My ultimate plan is to get off of everything - only the Klonopin and Wellbutrin are left now.  It has been somewhat discouraging to try to discontinue multiple drugs in a row because some of the symptoms that were improving after going off one drug get worse for a while or happen again after reducing the next drug and it feels never-ending.

 

Persistent effects I am still struggling with:

 

After using the Abilify, I was experiencing lack of flexibility and normal ability to walk, and every time I would walk I would get cramps in my calves and it felt hard to stand straight without feeling pain in my legs.  I had trouble swallowing for a while after quitting, but that has gotten better while most effects have not gotten better or have only gotten partially better.  The most debilitating lasting side effects that I am still experiencing include: extreme fatigue, lack of energy/motivation, sexual stuff (genital numbing, inability to orgasm, limited lubrication, etc), reduced responsiveness to psychotropics (alcohol, cannabis, caffeine).

 

During the earliest stages of getting off Abilify, I was not able to build muscle very much when exercising, and was struggling with those neuromuscular issues I mentioned.  My body would fatigue much more quickly than before I had taken Abilify, and my movements didn’t feel normal, either.  This has all partially improved, but is still something I am trying to recover from.  The fatigue from quitting Lamictal has made exercising very difficult, but I was starting to work out more again after being off the Abilify a few months until I made the last couple of Lamictal reductions.

 

My cognitive abilities seem to be improving, though I do still experience memory problems and problems with focus and attention. I have been able to stay up later; before, on the Abilify, I had been going to bed as early as 5PM.  My sleep has improved, in the months of recovery, but the Lamictal withdrawal had me sleeping much of the day in the past several weeks and I am having a hard time being as social as people are expecting because I spend most of my time resting in bed or in my room.  I know my personality has changed during the recovery process and it’s been I guess 5 months off Abilify now and I am still learning how things have changed and what might improve over time.

 

The caffeine thing has actually been one of the most upsetting things to endure and I was wondering if this happened to others after taking antipsychotics and if the responsiveness to stimulants improves or if it ever gets to how it was like before. I have read a lot of worrying things online about people not recovering and I feel afraid I will never be able to feel caffeine like I used to.  This sort of happened the first time I took antipsychotics for a short period, back in 2018, but the effect did not last this long.  If people here have advice for me, or encouragement, I would really appreciate input.  Thanks!

 

Edited June 23, 2020 by ChessieCat
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[Altostrata]

Welcome, leasharoo,

 

If you want to minimize your drugs, you may have to cope with withdrawal symptoms or other symptoms. We urge people to learn non-drug ways of coping -- it sounds like you're on your way with that.

 

On 6/23/2020 at 12:47 PM, leasharoo said:

The headaches have gotten worse and worse for the first few weeks completely off it, in June.  I am still experiencing pretty debilitating fatigue since coming off of the Lamictal. I am still finding it harder to do things like working out and having the motivation and energy to take walks and things like that. I also find it harder to multitask on activities; it feels like my mind and brain are in slow motion and unable to go at the speed it once was. I am wondering if this also improves based on other people's experiences from using these sorts of drugs.

 

This sounds like you are still recovering from going off lamotrigine too fast, or it could be adverse effects of the drugs you're still taking. Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. Post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.

 

On 6/23/2020 at 12:47 PM, leasharoo said:

I have espresso drinks every day and alcohol up to a few times a week, but plan to be reducing my caffeine intake. 

 

On 6/23/2020 at 12:47 PM, leasharoo said:

reduced responsiveness to psychotropics (alcohol, cannabis, caffeine).

 

It's quite common for the nervous systems of people who have gone on and off psychotropics to react in odd ways to psychoactive substances. Although you don't feel an effect, you may be making your withdrawal symptoms worse by drinking alcohol & caffeine and dabbling in other psychotropics.

 

Alcohol in particular seems to set back recovery from drug reductions. You will need to stop drinking. If your sleep is poor, gradually reducing your caffeine intake may improve it.

 

It may be that throughout your history of drug switches, the symptoms for which you were hospitalized were either withdrawal symptoms or adverse drug effects. Please be aware that with your history, if you go to the hospital complaining of anything related to psychiatric drugs or symptoms that may be construed as psychiatric, you probably will get additional drugs and possibly antipsychotic injections.

[leasharoo]

I went off coffee and alcohol — I’m still taking Klonopin and Wellbutrin.  So, a typical day is: I wake up - not refreshed, go figure - wait a little bit, get breakfast (no coffee anymore!), go back to bed and eat my breakfast, and then stay in bed and then go online on my phone.

 

I get super upset like every morning sort of and go to mom, or occasionally my dad, and ask them why they encouraged me to take such a medicine that destroyed me.  It gets emotional and I don’t really have a good way to cope except to go back to my room and distract myself and maybe take a klonopin at that point.  Sometimes the klonopin helps and sometimes it doesn’t.

 

The past few weeks, I usually stay in bed on my phone and do stuff on the internet most of the day.  I will try and make a clearer outline for this whole situation in a future post, but it seems that most of the symptoms that bother me a lot are from drugs I have discontinued rather than drugs I am taking now.

 

I do have someone I’m talking to who is helping me get through this that has dealt with very similar situations, and am looking for a doctor to see by browsing the directories on here, Mad In America, and The Icarus Project.  I see a counselor once or twice a week, but we have been doing videochats or phone calls because of the virus shutdowns.  I’d like to find a recovery buddy on here to talk with on a regular basis for support, so I will check out the threads about that sort of thing.

 

Every day is hard but I want to know if I will ever will heal from this. I got to say that from everywhere I’ve read it seems super discouraging but I’m holding on to hope. The misconceptions that people like my family have about what I’m going through sometimes get me down as they sometimes think I’m just giving up by just staying in my room but they don’t understand at all. I’ve been trying to send information and I try my best to explain what I’m going through.

 

Thank you for taking the time to read this.

 

All the best. 

 

Edited July 13, 2020 by ChessieCat
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[ChessieCat]

Are you able to add doses for these please?  Thanks.

 

Abilify - October 2019 - February 2020 (cold turkey)

Latuda - March 2020 - April 2020 (cold turkey)

 

Are you able to provide the tapering dates and doses and include the last dose of Lamictal that you took?  Thanks.

 

Lamictal - February 2020 - June 2020 (tapered off 100mg May through June)

[leasharoo]

Yes 

the Abilify was 15mg 

the Latuda was 60 mg 

 

The lamictal tapering was a little fuzzy for lamictal it was like 100 mg from March to June . I’m guessing June 1 was my last dosage of 13.5 . I had been lowering it every two weeks of a Gradual taper for about a month .hope that helps , please edit , thank you !!!!!

[ChessieCat]

On 6/28/2020 at 4:36 AM, Altostrata said:

 

Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. Post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.

 

 

At the end of June Alto requested that you keep daily notes.  You may have missed seeing the request.

 

These daily notes are used to assess your situation.  Once a few consecutive days of notes are provided we will be better able to assist you.

 

This explains what is required:

 

On 9/28/2016 at 4:49 AM, Altostrata said:

 

Are your symptoms worse at any particular times of day? A symptom pattern that occurs regularly over several days could mean the symptoms are from withdrawal, other adverse effects of drugs, or something else you do on a daily schedule.

 

In the course of discussion in your Introductions forum topic, you may be asked to keep notes on paper of your daily symptom pattern, including when you take your drugs, their dosages, and any symptoms. We ask this because there may be something we can do to reduce the symptoms.

 

What we need to see for every single day over several days is what symptoms you get before and after you take your drugs. If you're not taking any drugs and have withdrawal symptoms, we still need to see your symptom pattern throughout the day.

 

 

And an example:

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

 

[ChessieCat]

6 hours ago, leasharoo said:

Yes 

the Abilify was 15mg 

the Latuda was 60 mg 

 

The lamictal tapering was a little fuzzy for lamictal it was like 100 mg from March to June . I’m guessing June 1 was my last dosage of 13.5 . I had been lowering it every two weeks of a Gradual taper for about a month .hope that helps , please edit , thank you !!!!!

 

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