Hi all, I'm longing to get off Antipsychotics. Can anyone help? And does anyone have advice for getting off for good & staying well?
My GP, who I really trust and think she is brilliant, told me a long time ago she didn't think id need to be on Antipsychotics for ever and is in support of a gradual reduction.
I had PPP after the birth of my son in Feb 21. Coming up almost 4 years ago now.
I had to take antipsychotics for roughly 18 months which I utterly hated. I was so sedated and struggled to process and accept what had happened to me & that I had to go into an MBU....& In fairness, with the exception of prison a mental health hospital is probably the last place anyone wants to be.
After that I was off all medication for about a year.
Then after a stressful time at work in October 2023 whereby the headteacher changed my job role significantly and was effectively bullying me to resign.....a long story short, I struggled sleeping and after a couple of weeks of minimal sleep had to start taking quetiapine.
I've been taking quetiapine for a year now. Just a few days ago my GP agreed to reduce to 25mg (from 100mg a year ago).
I'm of course so pleased the dose has reduced & I know a gradual reduction with doctor guidance and monitoring is the only way off these drugs......but it can't come soon enough.
I feel like I exist these days, rather than actually having a life.
I feel so tired by 9.30pm (after taking my tablet at 8pm). I don't feel like being close to my husband or going out to socialise due to 1. Needing 9-10 hours sleep in order to function 2. Loss of confidence and shame that I've not been working for a year now (many months of sick leave+ eventually resigning). 3. Struggling to connect and have a fairly straightforward conversation with others.
Is this the medication??? I'm sure part of my personality is involved too.
But even though I'm on a very low dose, I feel like it's the medication and that this isn't a "nothing" drug....
At times I feel withdrawn, numb, vapid and empty. I don't feel truly like me on this medication. I don't feel like I can really care about others anymore, my emotions feel numb like they're switched off. I can't really cry. I'm often moderatly low, concentration and cognitive functioning isn't on top form (but it's also hard to remember what normal is like after so long) and I just feel like a fairly sedated version of myself. But everyone sees the exterior and thinks "you're fine".
Please help with stories, suggestions or some kind of road map for how to get off these drugs one day for good. And how long realistically will it take to come off for good? And what can I do to help things along? Or ensure I keep myself well? Is
I'm also applying for jobs, having had to leave my teaching job. I now can only see myself in something completely different, probably much lower paid, but it's got to be far lower stress and far lower criticism to tolerate.
The balance of how sedated and crap I feel about myself versus needing to get a job again is a difficult one. I need the stimulation of work and other people around me to have a meaningful day. Not working and gardening leave has been too isolating. But I am struggling to think about what job I could do that wouldn't be too taxing, without being too boring.
Please help advise how anyone got off for good? I feel like this stuff is poison & I so want to get off for good one day.
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Dolly292
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Hi Dolly, great news your having your tablets reduced and you have such a brilliant, supportive GP.
I know how you feel about the tiredness and feeling numb. I was on a high dose of olanzapine and slowly weaned off over a few months. I bet you can’t wait to come off it completely but my advice would be take it slowly, with the GPs recommendations and go from there. I personally found even taking the lower doses I didn’t feel much different until I was off it.
I was very fortunate to have a supportive family to help with my baby, I would take the tablets at 10pm and not hear a peep all the way through until 10am when I was actually woken up. This do do t happen every single day, I did wake up earlier than that when I needed to but it really did knock me out.
Not sure what denominations they decrease quetiapine but I’m sure it won’t be too long - maybe ask your GP a rough timeline?
I'mThanks Wonderwoman, It is so reassuring to read your response.
I remember being on aripiprizole for those long 18 months, and do remember feeling exactly as your described. Lowering the dose helps slightly, but didn't feel much different until I was completely off it. Last time round, I wasn't able to really feel like me until I was off it completely. Even on a low dose, I was still numb & constantly tired/low energy/ motivation. Which just isn't truly me.
I also know from experience and reading about how these drugs work, slowly slowly with doctor guidance is the only way.
However it is challenging as it's a bit of a fight this time round to reduce. The adult mental health team's general approach is pro staying on medication. My husband would prefer me to continue to take something, isn't keen for any kind of reduction or change & isn't interested in hearing about how unpleasant the side effects are. He fears what might happen if I'm off medication and doesn't really want to entertain reducing or coming off. I've actually not told him about the recent reduction, which isn't ideal. But the fight would be huge as he's not in a great place, recently just been made redundant. So I really have to battle.
To add to the load he's keen (as am I to have another child) but he wants it asap and doesn't like that he's now 40, im almost 37. But I feel like I want to be off meds before we start down that road....
But I also anticipate if there was anything like that in the near future taking these meds again would be highly recommended and encouraged. 😔
It sounds like you have a supportive GP to help you come off these slowly.
Have you mentioned about another child? My perinatal team said I would be entitled to a preconception meeting to discuss everything first, guessing medication would be included in that.
Hope you’re able to talk to your husband about your medication
I’m sorry you’ve had such a rough time since having pp including awful work stress and having to leave your job.
I’m Ellie, I work for APP and had pp in 2011 after the birth of my son. It was so traumatic, as you describe.
Like you I managed to come off that medication by gradually reducing but nearly 2 years ago, after 12 years of being well, I did have a relapse after becoming poorly with a horrible virus which really affected my sleep, as well as dealing with a close family bereavement. I obviously had to go back on the anti psychotic after that episode. It wasn’t as traumatic as the first episode in some ways, and I didn’t struggle with depression afterwards. However like you I found the side effects quite difficult, feeling quite numb and disconnected and lack of energy.
The psychiatrist at the time told me I should stay on meds for 3 years after this last episode however about 6 months ago, about a year after the episode, I worked with my GP to slowly reduce the anti psychotic medication. They were supportive and I came off it with no problem. I’m now reducing the other medication I was put on, venlafaxine (anti depressant).
It sounds like your last blip where you had to go back on medication was related to stress and now that is no longer there and your situation has changed it makes sense that you should be able to come off the medication. Like my recent stint on medication was related to being physically poorly etc. It’s just so important we look after ourselves, I find looking after my sleep as much as possible is especially important.
I am sure you will be able to come off this medication gradually (I did it by reducing gradually each month). And I really hope that you will be able to find a job too that fits with your life now, less stress but fulfilling and challenging enough.
Take care and I’m so glad you’ve reached out to us here
Sounds like a bit of a rollercoaster you've been on over the last few years, which must have been hard, but well done on getting this far and being in a position to feel you can reduce meds. Glad to hear you've discussed with a helpful doctor.
I've no advice about coming off quetiapine, as I am still on it and am happy to stay on it at the moment. I'm ok with needing a lot of sleep and although I did to begin with, nowadays I don't feel like it sedates me in the day.
Just a suggestion, but until you get off it, maybe see about taking it later at night. It certainly makes me sleepy about an hour after I take it. If I have an evening out (not often!) I just wait til I get home to take it.
Your story really resonates with me, as it is very similar to what I have gone through. First of all I just want to give you a giant hug and tell you that getting off the meds and having a better life IS POSSIBLE, and I have been through it. I had PP 22 years ago, and although it took me most of 20 years to find the way out, you have the wonderful advantage of having a doctor who will help you get off. I did not have that; quite the opposite.
I too was a teacher, I too tried to keep working after I was hospitalized, but I just could not handle the job and caring for my own small children and dealing with the terrible side effects of the medications. And they are terrible. I too slept 9 hours a day to feel functional for 2. My menstrual cycle was severely messed up. I was foggy and couldn't think, or concentrate. I felt numb and unable to relate to others or function normally. I gained a ton of weight - eventually 100 pounds. I was not forced out of my position by the school, but I was aware enough to know that I wasn't doing a good job, and the stress was just making me sicker and sicker. I didn't want to resign, for the very reason you are saying, that I knew I would be alone and isolated and that would make it worse. I tried to make it work, but eventually my mental health professional insisted that I resign. I didn't have a lot of fight left in me by then, and I did. Leaving a job I loved was a terrible blow to my identity and left me grieving and struggling to connect with people for many years. As far as the job went, I started first volunteering in the community. The church. The animal shelter. A literacy project for adults. When the kids got a little older, I started a small business taking care of people's pets. I did that for ten years and earned some money.
As for getting off antipsychotics, it wasn't until after the extra weight I gained had pretty well wrecked my health and my body before I realized I just had to try to get off, no matter what the outcome. For years I would cut down, and then have some psychosis and then go back on when I couldn't stand it. My providers would tell me that it was because I needed the meds. But eventually I read that psychosis can actually be a withdrawal symptom. I at least had to see if I could do it. I did finally end up with a psychiatrist who agreed to help me get off. What I did was reduce the dose little by little. When I got down to the least prescribed dose, I started cutting the pills. My psychiatrist gave me an anti-anxiety medication to help me through the withdrawal symptoms, and that was very effective. I still had withdrawal symptoms, but I told my husband that I would, and I did the cut-backs on days when I didn't have anything important happening over a weekend. I checked in with my mental health professionals regularly. I did have some pretty sleepless nights and a lot of anxiety attacks. Eventually I got down to a very small daily amount, then I started taking it just every other day for a week, then every two days for a week, and then I stopped. It worked. I've had no more psychosis. Time went on and I've still had no psychosis. It has been 18 months now since I stopped. The stopping process took about 3 months.
In the last 18 months I've done a lot of reflecting and some of the conclusions I've made may have some relevance for you.
1. This was not your fault. You were ill, and during the time you went back to work you were not operating as your normal self. It's awful that people could not be understanding for you during that time. But if you had not been ill, you would have been able to do the job well, just as you always did before.
2. The medications have terrible effects on your life. Once you're off, you'll start to realize what those were and how they've affected you. Be gentle with yourself and realize that going forward, possibilities will open up, and you won't be hampered by those meds.
3. Seek opportunities to go forward. If you want connections with others, look for ways to get that. Start by volunteering if you need to. This will build connections with people and put you in a position to be hired somewhere. It also gives you a good sense for what you do and do not want to spend your time doing. Maybe you take a retail job for a while. Maybe a job in a daycare as a receptionist or an aide, not a teacher. Maybe you go back to school and learn about something else entirely. Meanwhile, join some groups. Church groups, singing groups, writing groups, walking groups, yoga classes, therapy groups - there are groups for everything. That will help you be around people, which you need.
4. You're only 36 and you still have a lot of life ahead of you. So much can still happen, and it doesn't all have to happen today. Make sure you give yourself time to let things settle out and see who you are before you agree to get pregnant again. That preconception counseling sounds like a good idea.
Hope some of this is helpful to you. Now, enough procrastination, I really need to do my housecleaning! Not my favorite task. Write here any time if you have questions. I'll do my best.
Thank you so much for this reply. I've read it a couple of times now & it's helped me so much. 1. To really validate how I feel
And 2. Given me real promise and hope that it won't be like this forever.
I am and will seek to find ways to connect with people. I am doing some volunteering, but I don't have enough structure, stimulation or connection with other people during my average week. I am really trying, but a lot of the time it's an uphill struggle.
Unfortunately I'm struggling to find or think about how I can get what I need to feel more purposeful, a problem I have had for some time. I was unable to look for work for a long time due to being on long term sick pay. I'm now free to apply for jobs. Although, I've now been out of work for a while, feel quite worried about applying and interview process. Also, finding part time work that fits with nursery, that isn't too stressful is hard too.
I know these are are things that can be overcome. It just feels like a mountain! Of course, one step at a time is the only way.
It sounds like worry is one of the things that is holding you back, and that’s one thing I do far too much of myself! But overcoming those fears can help you to move forward. Right now it’s stopping you from doing anything. I wonder if you are still seeing a therapist of any kind who can help you work on those insecurities. Having been forced out of your job had to have been a blow to your self esteem.
If you can get it, there is a wonderful book and workbook called “What Color is my Parachute?” If you do the exercises in it, it helps you identify the skills you have that are really good at, and talks about how to sell these to a potential employer in an interview. Years ago, before PP, I had a few years inbetween teaching jobs where I took a job at an electronics company in the Human Resources department, and my job was to interview and hire people. I learned a lot! So I could go on and on about this. But, doing some preparation for an interview can really help settle your mind about doing it, and get you ready, because it sounds like you’re stuck right now. Now that you have a baby the child care will be an issue, I agree.
Try that and see if that helps you get started.
Yes, it seems like a mountain! And we are not all at the top. But one step at a time. One step. There is no shortcut anyway. Taking small steps will help you feel like you’re doing something positive and more in control. So try one or two. And remember, in a journey of a thousand miles, every step will not be forward.
Hi that’s amazing you’ve managed to reduce your medication and a step in the right direction. There is a big stigma around taking medication but in some cases we just need to take it. My doctor started by reducing mine by 2.5mg at a time (was on a dose of 12.5) and we did this over a few months. And when I wasn’t on the lowest dose, I would just take it alternative days. As we reduced the medication I became more like myself, far more chatty and outgoing. I don’t know if this was the reduction in medication or I just was getting better as time passed. I do feel the medication made me sleep a lot I would sleep 10 hours a night plus naps through the day! And more if I could get off with it. I lacked energy big time. I still tired but can cope with 7-9 hours and no naps during the day. Slow and steady definitely wins the race. I do still worry about relapsing but like everything else we learn to cope and deal with it. Hope it goes well for you.
Hi I have also been in a very similar situation, I came off meds and then ended back on their after a relapse due to returning to work as a nurse in COVID. I ended up seeking the support of a private psychiatrist and he helped me stabilise during that period going back onto meds which like you I wasn't keen on.
I've since had another baby (I'm 40) and was lucky with some meds to not have had a further psychosis or depression.
I am now on a low dose and debating coming off but find although sleepy in the morning they stabilise my PMS. I will be experimenting with the dose to see what's best for me but found a low dose of Quietapine after the many years of being on doesn't give the side effects high doses did.
I am happy to chat in more depth if you want to reach out.
Hi Dolly292 , just wanted to wish you luck in your weaning off process. I am sure you can do this.
I was on Olanzapine and the psychiatrist told me to reduce 2.5 mg (the typical increments for Olanzapine) every month. This means it would have taken me quite a while to come off it completely. However by then I had already managed to be off medication on my own. I started reducing little by little but took it "by eye", meaning if everything felt ok for a couple of days, I reduced it again. I was very eager to be off it as, like you, I didn't feel like myself. It probably took a month after quitting the medication to feel normal again. I, however, had not been taken the medication for too long (3 months), so you should probably be more careful than I was!
I have an appointment with a psychiatrist and want to ask about quetapine for anxiety and depression. I have had it long time ago but didn’t feel like it was helping. Clonazepam helped more with anxiety.
I wish I could feel numb. Feeling too much is my problem. I’m also in a teaching job but due to my health problems have reduced my hours to almost nothing. After years of suffering I don’t think I have the energy to teach anymore.
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