Tapering not going well at all

[JosephineFay]

I know that Zebrawhite and KitKat have both posted recently about their experiences on medication.

I am still suffering on the antipsychotic Haloperidol and wanted to share what a real mess I feel.

So I was put Haloperidol depot that's an injection in hospital last year 2023 January. I was put under a lot of pressure from the psychiatrist and my family. Lots of ultimatums.

That if I didn't stay on the meds that they would cut me off and my psychiatrist telling me that she would put me on a CTO community treatment order if I ever became ill again.

A CTO is a court order forcing you to take medication against your will indefinitely.

This is because I have had 7 breakdowns in 20 years. My son is 20 years old now.

I still have birth trauma and terror of the thought of labour or having a little baby and that effected my ability to have a second baby which I regret terribly.

I am not getting along with my NHS psychiatrist, she talks me down, dismisses anything I say and simply tells me I need meds for life.

The problem is no matter what antipsychotic I'm given I always get serious insomnia.

I have tried aripriprozole, risperidone, clonzapine, clopixal, Haloperidol, lithium and olanzipine.

I get heavily sedated during the day and insomnia at night.

I have survived on 4 hours of sleep for a year and managed to work though very tired.

I am currently trying to cut down my meds with the help of a private psychiatrist. I've seen 2.

But he proved complicated so I found a lady psychiatrist who suggested that I take one tablet and reduce it by a quarter each month but this too proved too much of an decrease for me.

I was advised by the lady private psychiatrist that if I can't tolerate the greater reductions I should stick to reducing by tiny amounts.

In the meantime I am due to see the NHS psychiatrist on Monday and she is not aware that I'm tapering with someone privately.

I asked her for help in tapering and a second opinion and she refused both. She then reconsidered and suggested I reduce by two tablets.

She seems to be sold on my staying on Haloperidol and will not try me on any new medicines.

Our communication has broken down and because she's the lead consultant will not allow me to work with anyone else hence my currently also seeing the private psychiatrist.

The private psychiatrist is gentle, kind and just what I need but the tapering I'm doing with her is not going well.

I had to ring 111 last night because I literally haven't slept a wink in 3 nights I don't know why. This is dangerous for me and don't know what to do.

The 111 doctor prescribed 3 days of the sleep medication zopiclone until I see the NHS psychiatrist.

I feel its getting very confusing and would appreciate some advice from anyone who has had problems on their drugs or who has come off successfully.

Hope you help with some honest advice.

The insomnia may be a sign of withdrawl.

The 111 doctor today told me that my dose of 4mg of Haloperidol is huge dose. But my NHS psychiatrist keeps telling me it's a very low dose.

Jo

[Jenny_at_APP Partner]

Hi Jo,

I'm really sorry things aren't going well with tapering off your medication and it sounds a real worry to you that you've not slept at all for 3 nights. It's good you reached out to 111 last night and I hope the Zopiclone helps you to get some sleep tonight and sees you through the weekend.

It sounds like such a difficult situation for you and it's tricky as we can share our experiences but we're all so individual with different reactions and responses to different drugs. It's such a shame that it doesn't sound like you have a good relationship with your NHS psychiatrist and she's not letting you work with anyone else or seek a second opinion. If it feels like she dismisses anything you say, would writing something down to take along to your appointment help maybe? Perhaps showing her some of your posts here would help her to understand how difficult you're finding things? Living with such little sleep doesn't sound sustainable, I would really hope she'd want to help you to find a balance where your symptoms are managed while also enabling you to have a decent quality of life. If she previously agreed that you could reduce by two tablets, perhaps it's worth trying to have that conversation again - making it clear how much you're struggling and you're really keen to try and find a new solution.

I took Quetiapine when I suffered from PP which seemed to suit me, but everyone's different. We can only share our experiences but I really hope you're able to find a way to move forward.

I also wondered if you'd broached the subject of trauma therapy with your psychiatrist? Could that be something you might ask about at your appointment as well? There seems to be more knowledge and understanding around this nowadays. The Birth Trauma Association and Make Birth Better might both be helpful places to look for support and resources if you feel that might be beneficial to you.

Take really good care and I hope your appointment on Monday goes ok.

Best wishes,

Jenny x

[JosephineFay in reply to Jenny_at_APP]

Hi Jenny, thank you for your message. I have been on Quietiapine too and also had side effects. It seems that there must be some ingredients in all the antipsychotics that just doesn't agree with my brain chemistry.

To be honest I'm so desperate now for rest that I'd try any of the antipsychotics that I've had in the past again if only they would give me some relief.

Thank you so much for your kind understanding it really helps so much and keeps me hoping that something can be done to help me.

I'll broach the subject of trauma therapy again. Before the NHS psychiatrist referred me to a very inexperienced and young clinical psychologist who told me that she couldn't relate to my birth trauma because she'd not had a child. She did offer me cbt but I felt that wasn't the right therapy and that I needed talking therapy like psychotherapy which they said they did not offer.

Most women I've spoken to all tell me that if anything their antipsychotics made them sleep more not less. I don't know why I'm getting the insomnia.

I'm wondering if it's connected to changes in hormones caused by the drugs too.

[Maria_at_APP Moderator]

Hello Jo, I am so sorry to read that the tapering is not going well and that you have not slept the last 3 nights. I hope that the zoplicone offers some relief tonight, even though it is just for this weekend.

It must feel very discouraging when it sounds like your psychiatrist dismisses your points and doesn't accept your requests for a second opinion. I hope the conversation next week goes well and she listens to you. You deserve to have better quality of life while managing your symptoms.

Would you be able to get in touch with the private psychiatrist next week? To let her know that the weaning has not been going well and that you are concerned now. She may have a plan B or C that you can work at together. I am glad that she is kind and listens to you, makes the world of difference to be treated as a person and not a case.

Wishing you some rest tonight, let us know how you get on. Thinking of you

Maria

[JosephineFay in reply to Maria_at_APP]

Hi Maria the private psychiatrist is away next week but I did make her aware. She suggested that I try a homeopathic sleep mix that she's going to send me that doesn't contraindicate with my prescribed medication. I haven't been able to discuss the tapering in depth and won't be able to for a few weeks till she's back.

Thank you for your message of support.

Jo

[Maria_at_APP Moderator in reply to JosephineFay]

Hi Jo, were you able to get some sleep last night? It's unfortunate she is away this week and you can't discuss things in depth.

Reading your reply to Jenny, I was thinking if you and your psychiatrist played around taking the antipsychotic at different times of the day? I imagine so, but just thought to ask just in case. We still know so little about variations in brain chemistry and why antipsychotic medication works or doesn't.

I hope that you have a good conversation next week with the lead consultant, at least a path forward. I'll be thinking of you so much.

Maria

[JosephineFay in reply to Maria_at_APP]

Good morning Maria, yes I slept from about 12.30 last night to about 5 or 6 this morning without waking up. I'm still really tired indeed and get a numbness and stiffness in my lower limbs every morning.

I'm wondering how my sleep will be like when I have to stop taking the zopiclone. I feel I need a long term plan around the sleep.

Last night to get to sleep I had to take Haloperidol, the antihistamine Promethazine which I've been taken for 8 months though long term use is not encouraged. As I have heard it can cause dementia.

I then tool zopiclone which seem to help at least for the first night. I have 2 days supply left.

Jo

[JosephineFay in reply to Maria_at_APP]

Hi Maria, the NHS psychiatrist suggested that I reduce my meds by two tablets and then take the other two tablets one at night and another in the morning.

I think that this is too fast a taper and told her so. She simply said that I have to do as she says. That this is what I have to do.

I won't be able to see my private psychiatrist until 3 weeks time.

[Maria_at_APP Moderator in reply to JosephineFay]

Hi Jo, how is it going today? Did you get any better sleep last night? It does sound very frustrating to not be listened to. You do know your body, I think waiting for your sleep to settle is a sensible thing to do. I will be thinking of you,

Maria

[JosephineFay in reply to Maria_at_APP]

Hello so I got to bed at about 2am yesterday and woke up at about 6.30 to 7.00am and this was using Promethazine and zopiclone for sleep. Its the hours from 10pm till 2am that I find very difficult as my husband and son are both asleep at that time. I'm really struggling at the moment and had to ring samaritans last night.

[Maria_at_APP Moderator in reply to JosephineFay]

Hi Jo, it does sound so difficult, I think ringing Samaritans was a good idea, reaching out for help in the hours you need is something that shows your bravery and your resilience, in the face of such difficulties. I hope that tonight does go a bit easier for you, at least some more hours of rest could make you feel differently in the morning.You are on my mind, take very good care

[JosephineFay in reply to Maria_at_APP]

Thank you Maria, I just phoned my mental health crisis line for some support. Will message you what they said.

[Maria_at_APP Moderator]

Hi Jo, 5 or 6 hours is OK, better than before, but that's with a lot of help. I know your worries around what happens when you no longer have the zoplicone to help. The numbness and stiffness in the lower limbs must make it so difficult on top of it.

I do wish you that the chat with the psychiatrist next week goes well, and like you say, you come up with a long term plan for your sleep.

I am having you in my thoughts

[JosephineFay in reply to Maria_at_APP]

Thank you, I'm just on the way to the appointment just now and feeling very nervous about this. The NHS psychiatrist is quite intimidating and doesn't listen to me. I'm going to be asking for another nhs psychiatrist someone to give me a second opinion.

[Maria_at_APP Moderator]

Hi Jo, let us know how it goes. You are in my thoughts

[Ellie_at_APP Partner]

Hi Jo

I’m so sorry that things are so difficult at the moment. The lack of sleep sounds so difficult and must be affecting everything. I am not surprised you’re feeling so desperate. You are doing so well to keep reaching out for support, ringing the crisis team etc.

How did you sleep last night? I really hope you got a few hours.

I hope you can get somewhere with the second opinion service .

Do keep reaching out, and I’m so glad you feel able to write to us here

Take care, thinking of you

Ellie x

[JosephineFay]

Hi the psychiatrist has said that she can't write the referral but i should ask for one from the GP. Maria is trying to find out if Prof Jones and his team will accept a gp referral. Yes things have been pretty bad for me Ellie, I'm very down indeed.