Nocturna: withdrawal or relapse

[Nocturna]

Hi all and thanks for welcoming me in this community! Here's my brief story with psychiatrists until now:

 

- In the end of 2015 I got a burnout which resulted in insomnia & psychosis. Visited the psychiatrist and was diagnosed with Schizoaffective disorder.

- Took Risperidon 2 mg for 2 months + Akineton (anti-Parkinson for the adverse effects)

- Took Abilify 7.5 mg for the next 10 months. Stopped it CT with the blessing of my doctor, because I had some adverse effects, the most obvious one was weight gain, but I also had some anxiety in situations like being in a car or train.

- 3 months later, being drug-free, I got involved in a road accident, which resulted in a lot of stress and triggered insomnia again. Was too afraid to go into a relapse, so I started with what I had left from the Abilify, again 7.5 mg for 1 month.

- In 2-3 months got gradually down to 2 mg Abilify (with mostly non-existant side effects) after some negotiation with my doctor (she sent me out with the words "You know your condition, do whatever you decide" - I guess I was being too pushy). Kept that for the next 2.5 years, as I was travelling a lot on my own.

- Moved to a new country, found a new doctor. When I settled down, went from 2 mg to 0 in 3 months.

- Around 3 months of being drug-free in April 2019, again after some stress (related to other health issues) and being alone for a while I started getting back into insomnia. Initial symptoms of psychosis started reappearing (paranoid thoughts and delusions), so I went straight to my doctor. After 1 week of Risperidon (this time 1 mg IIRC) and some Zopiclon and a melatonin additive, the insomnia was under control and the psychotic symptoms dissappeared, so we switched back to Abilify, this time 5 mg.

 

I've been on Abilify, 5 mg since then and I don't plan to go lower for now, as I'm travelling again in the next few months. I'm hoping to go down to 2 mg eventually, as with this dose the adverse effects were really tollerable. My sleep schedule is now mostly stable (going to bed around 10 pm and getting 8-9 hours of almost uninterrupted sleep). I got a sleep tracker, I take magnesium additive roughly 2 weeks/month (with intentional breaks) and I started doing mindfulness exercises. I do some light, not very regular exercise in the gym and swimming.

I'm mostly interested to hear if anyone had similar experience as mine and what did your doctor say about it - is the insomnia + initial symptoms of psychosis due to the withdrawal (don't know if it's realistic 3 months after stopping the meds) or is it due to a relapse of the underlying condition. Thanks!

[Gridley]

Welcome to SA, Nocturna.

 

We recommend tapering by no more than 10% of your current dose every four weeks.  As you get down to the smaller doses, the drops become smaller and smaller.  

 

Why taper by 10% of my dosage?

 

Your going from 2mg to 0 in 3 months was quite a bit faster than our recommendation and would put you at risk of withdrawal symptoms.  Three months from last dose is a very common point at which withdrawal symptoms appears.

 

What is withdrawal syndrome.

 

Glenmullen’s withdrawal symptom list.

 

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

 

   On 8/30/2011 at 2:28 PM,  Rhiannon said: 

When we stop taking the drug, we have a brain that has designed itself so that it works in the presence of the drug; now it can't work properly without the drug because it's designed itself so that the drug is part of its chemistry and structure. It's like a plant that has grown on a trellis; you can't just yank out the trellis and expect the plant to be okay. When the drug is removed, the remodeling process has to take place in reverse. SO--it's not a matter of just getting the drug out of your system and moving on. If it were that simple, none of us would be here. It's a matter of, as I describe it, having to grow a new brain. I believe this growing-a-new-brain happens throughout the taper process if the taper is slow enough. (If it's too fast, then there's not a lot of time for actually rebalancing things, and basically the brain is just pedaling fast trying to keep us alive.) It also continues to happen, probably for longer than the symptoms actually last, throughout the time of recovery after we are completely off the drug, which is why recovery takes so long.

 

The overwhelming majority of doctors know nothing about safe tapering or withdrawal (which they don't believe exists).  You are the  only person who can determine whether your symptoms are withdrawal or relapse.  These links can help you make that determination:

Is it withdrawal or relapse?  Or something else?

 

How do I know it's withdrawal and not relapse?

 

This is your Introduction topic, where you can ask questions and connect with other members.  We're glad you found your way here.

[Nocturna]

Thanks a lot for the links, @Gridley! Will read them thoroughly in the coming days.

Btw, I noticed that www.drglenmullen.com is live again and the daily checklist can also be downloaded from there.

[Manny78]

Hi Nocturna. I was reading your thread. Do you decrease your abilify 0,5mg every month? I spoke with my psychiatrist. He lowered down my abilify  to 15mg,but I am taking 10mg. I plan to reduce 2 percent per month. 

 

[Nocturna]

Hi Manny,

 

Indeed I started tapering the Abilify by 0.5mg/month. Now I realise it should be 10% of the last dose, not 10% of the initial (which makes sense - geometric progression instead of arithmetic). So in the next month I'm doing a smaller drop. My psychiatrist thought that's too careful (she keeps calling doses below 5mg "baby doses"), but still she supports me in tapering off. If you are stable for a couple of months, talk to your psychiatrist again and he might support you lowering the dose further. From my own experience, it's the easiest if you are as open as possible with your pdoc.

[Manny78]

On 9/30/2020 at 11:24 AM, Nocturna said:

Hi Manny,

 

Indeed I started tapering the Abilify by 0.5mg/month. Now I realise it should be 10% of the last dose, not 10% of the initial (which makes sense - geometric progression instead of arithmetic). So in the next month I'm doing a smaller drop. My psychiatrist thought that's too careful (she keeps calling doses below 5mg "baby doses"), but still she supports me in tapering off. If you are stable for a couple of months, talk to your psychiatrist again and he might support you lowering the dose further. From my own experience, it's the easiest if you are as open as possible with your pdoc.

Hi Nocturna.Yeah, I thought your taper was too fast,but maybe your body can handle It. Mine can't. I have been taking abilify since 2009 different doses maximum 30 mg. 

 

Yes, your psychiatrist can think the 10% is too little reduction. My psychiatrist thinks that too. What reduction method do you use? I use a combination of water tritation (5ml of an abilify 10 mg discmelt pill mixed with 10ml of water) and 4,8ml of abilify 1ml oral solution for a total of abilify 9,8ml. 

[Nocturna]

1 hour ago, Manny78 said:

What reduction method do you use?

I'm using only the 1mg/ml oral solution, as we don't have discmelt in my home country. Unfortunately the oral solution is also not covered by insurance here (I even have to buy it over post from a neighboring country), but I hope soon to be back to Germany, where it is available and covered by insurance even without a disability certificate (I don't have one). The main downside of this whole story is that I pay the whole ~100€/1.5 months myself.

Indeed, if you've been taking it for 10 years, maybe your body is more accustomed and the tapering has to be slower. I'm also planning to go slower and stop for a while at 2mg, as this dose was really successful for me in the past w.r.t side effects vs. not having a psychotic relapse.

[Nocturna]

Small update from me - about a month after my last dose cut 2 months ago (down to 2.3 mg), I started experiencing really bad PMS (with mood swings, crying spells in the morning and headaches) and to make it worse, my insomnia came back. I've been combating it with Melatonin supplements and meditation and today, a couple of weeks later, the insomnia seems to be under control. This time I didn't experience any psychotic features, not sure if it was just an episode of depression and anxiety (as my psychiatrist said) or the "baby dose" of the antipsychotic does its job. In any case, I'm grateful for being where I am now and still waiting to do the next cut.

In the meantime, I took some blood tests and visited an endocrinologist, who got concerned with my high glucose level and near-the-limit HbA1c. He wanted to send me to a detailed screening for diabetes, but since I'm still in my home country where I don't have a health insurance, I can only visit doctors privately. Does anyone have experience with such a screening?

[ChessieCat]

SA staff does not counsel about general medical issues.  However other members might be able to answer your question/s.  If you do a search you can find members' topics where diabetes is mentioned.  Instead of discussing diabetes in a member's introduction topic that you take your discussion to the SA topic linked below.  And discussing it in the diabetes topic may provide information for other members, both now and in the future.

 

There are many topics on SA.  I like to use a search engine and add site:survivingantidepressants.org to my search term.

 

Here is the discussion topic about diabetes which would be a better place to ask your question because other members are more likely to see it:

diabetes

 

[Nocturna]

Thank you for pointing me to the other topic, ChessieCat! I didn't realise introduction topics are not intended for discussions. Seems there's a lot to learn in the forum, so I'll make sure to read through the topic you pointed me to.

[ChessieCat]

You are welcome.

 

The reason I said to take the discussion of diabetes elsewhere is because it is not about your psychiatric drug withdrawal.

 

The Introduction is a member's journal of getting off psychiatric drug/s and where they can ask questions about their own situation.  This way all the history is in one place.  Members can also be supported by other members in their Introduction topic but it is better for general chit chat to be done elsewhere, either in PM or by creating a topic in the Off Topic Forum so that when a member needs assistance there is less chance of their question/s related to tapering/withdrawal being overlooked.

[Nocturna]

Another update from me (also updated my signature). Last two years were basically an attempt to taper down the Abilify during the summer-autumn and then upping it after the beginning of the new year and fighting with depression and insomnia. This year it's still lingering hard, with my main concerns being super de-motivated, lacking energy to do more than basic functioning throughout most of the days and also having focus for only 30-40 minutes a few times a day (which led to a job loss), which is overall impacting my ability to live autonomously atm.

 

Does anyone have experience with such sever thinking and mood disruptions while tapering Abilify? I'm getting somewhat scared I might be developing negative symptoms of schizophrenia, though I haven't had any positive symptoms in 4 years.

 

Here are the details of my taper, I know at times it was pretty fast and adding the quetiapin in 2023 for longer than a few days (as in 2022) probably did more bad than good:

 

May 2022 to Nov 2022 - 2 mg Abilify  down to 0.75 mg

-> middle of January 2023 - insomnia kicked in, some derealizations too; so up to:

Jan - 1 mg Abilify + Quetiapin 6 mg in the last 2 weeks

Feb - 1.5 mg Abilify + Quetiapin 6 mg

March - 1.5 mg Abilify + Quetiapin down to 1 mg (tapering in a few day increments)

April - 1.5 mg Abilify + Quetiapin back up to 2 mg; Added L-tryptophan in mid-April and tapered Quetiapin to 0 mg

May - 1.5 mg Abilify (only) down to 1.25 mg and 1 mg

June - 1 mg Abilify down to 0.75 and 0.5 mg

Current: staying at 0.5 mg Abilify to stabilize.

 

[Nocturna]

Not an update really, more of a rant. Will update my signature and post a proper update soon, hopefully.

 

After being unstable on 0,5 mg Abilify and upping to 0,75 mg, a few months later I'm back to 0,5 mg again, not stable still and I'm really getting tired of it. After losing my last job, I got a very stressful semi-voluntary job at an NGO (I really care about the cause, but the work habits are leading to everyone's stress spilling over on top of others half the time..). Fortunately I have a super supportive husband, but he's getting tired of our struggles too (as he's also back to his demanding, but fulfilling job in our home country). I got an advise from my therapist to look for a calmer job, but I'm holding on heroically to this supposedly "important" job at the NGO. Probably not a good idea for long.

 

Also my therapist really pushed me this time into getting a habit of doing regular sports. But that's super hard for me, as I lacked much freedom to stay outside as a kid. I was even being ridiculed in primary school for being clumsy, running the slowest or just being short (I realise now my edginess worsened all of this). That pushed me into an emotional breakdown, though I'm getting used to those in the past year and feeling as a "walking failure", as my brother sometimes describes himself..

 

Sorry for the long rant, I just wanted to let it out.

 

Interesting experiment was taking a night off of Abilify on Friday. Saturday was my most normal holiday I've had in a few years!

[Nocturna]

Update:

 - I've moved my 0,5 mg Abilify to morning 2 weeks ago. Thanks to @gdsequoia for the support, as always! Initially that helped me sleep very well and even returned some dreams, so nice! Some of them nightmares though. Now in the last few days I have an interrupted sleep again and my fitness watch shows close to 0 REM.

 - My psychiatrist told me to stay 3 more months on this dose and then lower it by 0,05 mg each 2 months, though she think it's too slow. I also don't think I'll be able to handle for so long.. so I'm trying to figure another safe approach with my family and suggest it to her.

 - In the meantime my ability to stay focused during the day totals 3-4 hours, mostly in the afternoon/evening. That makes any work super hard.

 - Some days I feel so low and unfocused that I take a 0,5 mg L-Tyrosine supplement. This helps short-term.

 

The theory we have with my husband is that I'm mostly lacking the "upping" effect of Abilify during its withdrawal. I really hope that's the case, otherwise my worsened cognitive abilities (which are apparent to me and my family, but not recognised by the doctor) will be really hard, if at all possible, to handle. Interestingly enough writing is easier in such moments than speaking.