Hi all,
I have previously posted about aiming to come off antipsychotics for good (due to the negative side effects experienced + my belief/& my GPs, that I do not need them forever) ...but also wanting to stay well.
In general I have found (different to the perinatal team) that my adult mental health team are generally keen to keep patients/myself on medication with no discussion of lowering dose, possibility of coming off or consideration/ acknowledgement of the negative impact the effects of this medication has on my life (now that the most stressful time has passed).
Can anyone help with my particular situation? 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 forever 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. I was in an MBU "prison" during lockdown for 2 months immediately after birth which really was the worst experience of my life, having hoped to have a baby, family, go home with my baby etc..
After 18 months, I was off all medication for about a year & lost the 2& half stone I put on from the meds.
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. I'm now on 37.5mg (down from 100mg a year ago). However this reduction has only happened because I have pushed and pushed for reduction. Not once has my psychiatrist been in support of this, I have had to speak to my GP to get them to agree to reduce my dose. I think this is utterly disgraceful on the part of the NHS psychiatrist as I clearly have been able to cope and things have improved, so therefore there is/was no need for a higher dose so many months ago. Under any other circumstances no doctor would advocate for taking more medicine than required.
Of course, I know a gradual reduction with doctor guidance and monitoring is the only way off these drugs......but it can't come soon enough.
Fortunately things are on the cusp and about to change for the better. Whilst I've been off work for a year now, I've finally secured a part a part time job & I start in 2 weeks which is great news!
My psychiatrist has left the practice and I am due to have a psychiatrist appointment with someone new the day before I start my new job.
I would love any advice for this upcoming appointment. I want to be able to ask for either an alternative drug (but must be less sedating) or an agreement that reduction of medication will be the plan going forward.
I've taken a job as a teaching assistant (I am a qualified teacher) so I'm overqualified for this & the drop in pay is huge, but I know that being a class teacher would be too much at this stage. So this venture is bittersweet, but I'm trying my best to stay positive.
However, I still struggle with the sedation from the medication. I feel so tired& sedated 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 finding it harder than ever to socialise and feel "normal".
Even though I'm on a lower dose, I feel like effects from this medication are huge.
At times I feel withdrawn, emotionally numb, vapid and frankly a bit dead inside. I don't feel truly like me on this medication. I don't feel like I can really care or think about others in the way I used to, my emotions feel numb like they're switched off. I just feel like I don't have the same capacity to think ahead and manage everyday life (although I guess I am managing, but I suppose I feel like I'm scraping by rather than really enjoying life).
I feel like a fairly sedated version of myself. But everyone sees the exterior and thinks "you're fine".
Please help with suggestions. My aim is and has always been to be off these medications.
I do wonder if there is an alternative to quetiapine that is less sedating. I am nervous as I don't want to switch and find myself more sedated...
I do think I probably need something to stabilise my mood at the moment. But I wonder if there is an alternative that is less sedating. I didn't have a second experience of psychosis in Oct 2023 & I do wonder if the doctor made the right decision in terms of medication.
Please help advise how anyone got off for good? I feel like this quetiapine stuff is poison & I want to get off for good one day.
Please help 🙏