Still struggling on the Haloperidol taper

[JosephineFay]

Dear All, I know that the lady poster survived with colour has told me her harrowing story of trying to taper off medication. As I've posted before, I'm having a horrendous time on my antipsychotic Haloperidol and currently tapering off very slowly. It gives me terrible insomnia which gets worse every time I try to lower the dose. Are there any other ladies who've had a hard time on the meds with bad side effects and there any who had a bad time tapering too. I've been on meds for 1 year. Would welcome knowing I'm not the only person for whom meds have not been positive.

[Jenny_at_APP Partner]

Hello JosephineFay,

I'm sorry to hear you're still struggling trying to taper off Haloperidol. It's difficult as everyone is so unique and has different experiences with, and reactions to, different medications. I'm sorry I don't have any relevant experience to share but I wanted to reply and send some warm wishes your way.

Are you trying to come off meds completely or is your psychiatrist looking to switch you to something else? I hope they are supporting you as dealing with insomnia must be very difficult to cope with and I’m sure it can be a very tricky balancing act when trying to come off meds and the effects that can have.

Take things as easy as you can and do reach out to your team as needed.

Sending very best wishes,

Jenny

[JosephineFay in reply to Jenny_at_APP]

Hi Jenny, Thank you for your lovely message. My team are not very supportive and I now see the psychiatrist evert 6 months. But I have taken on a private psychiatrist and she is amazing, very understanding and trying her best to advise me the best way to come off. And no I will be coming off drugs completely and not switching to anything else.

Thanks for writing back to me as I'm really lonely on this journey of 20 years since I first had post natal depression with my son. Also when I first started to show signs of psychosis almost 2 years later the people who knew about it cut off communication with me and when I was diagnosed with Bipolar I found myself shunned from the other mums at my son's school.

I have found my mental health struggle very isolating and welcome any shared experiences.

[Pikorua Volunteer in reply to JosephineFay]

Dearest Josephine,

I believe we have spoken before.

Yes, I have had experience with Haloperidol in combination with other traditional and very addictive drugs. The combination of Haloperidol and Lorazepam was quite a lethal combination in order to battle PPP.

May I ask why you have been prescribed this old drug and do you have a meds plan to tackle the steady reduction of Haloperidol?

The tapering off process in my case was proceeded under close observation with a psychiatrist, GP, care coordinator and my wonderful partner. I was still so unwell when discharged from the Psychiatric Hospital that my partner had to look after me full time. I could not fulfil my primary needs such as getting dressed or making a drink, yet alone being able to take my own meds.

During recovery of PPP I had three strong meds and the side effects of those I do not wish upon anybody- My mobility was down, I could not verbalise, no concentration, extreme anxiety, problems with digestions just to mention a few...when Lorazepam was reduced of a sudden my shoulders were frozen and very painful. Eventually it was identified that both shoulders were injured.

With the help of health professionals and my partner my body was probably free from drugs after 2 years. Yet my Insomnia kicked in for many years including ongoing anxiety, type of social and agora phobia, Eventually, like you, I was diagnosed with bipolar 1.

My choice of treatment is alternative therapies based on therapeutic modalities and plant medicine. Finally I can sleep properly after 7 years of sleep deprivation.

I believe peri and menopausal symptoms will have a huge effect on our mind body and soul when already struggling with a chronical mood disorder.

What do you do for self-care???

I have written this, just to reassure you that you are not on your own, yet sometimes it feels like a very lonely and never ending journey.

A big virtual hug

x

[JosephineFay in reply to Pikorua]

Hello there. I am having all of the side effects that you have listed. I cannot function and have been suffering from a crippling depression all meds based. I am tapering with a private psychiatrist because my NHS doctor refuses to take me off the meds and I have been refused a care coordinator.

I had insomnia from almost the first day of being on the meds and with each med reduction this gets worse. Apparently this is how sedative medication works.

I too sometimes cannot do basic things of life like get out of bed and my entire body aches with pain every day.

Thank you for sharing with me again what you went through. I do not know why they prescribed such an old antipsychotic for me.

I have a reduction of meds plan but I saw the private doctor virtually she is excellent.

I have been tapering for 6months and have to take tablets. I have been able to reduce only one tablet by half as the insomnia gets exponentially worse if I try to reduce any quicker then scraping the tablet and then weighing it. I think this is called a micro taper.

I did this myself with the help of service user groupd but then got the private psychiatrist to help me and she's asked me to get a pill cutter and a miniature scale so I can measure the tablet.

Sleep deprivation is horrendous and I suspect it will take me a couple of years to come off.

Thanks for being there it really helps me so much not to feel alone.

7 years later I've forgotten if you told me if you were back in work. Please don't feel you have to answer this.

I work in retail and work from 1.30 to 6pm Tuesday to Friday and 10 till 2 on Saturday I cannot work my old 9 to 5 job as I'm so exhausted in the morning and cannot get out of bed due to pain. I wake everyday at 5am after waking up about 5 times during the night. Really struggling.

Jo

[Pikorua Volunteer in reply to JosephineFay]

Hi Jo,

I know you can do it. Please private chat me, if you feel I could help you more on alternative strategies, - in a therapeutic way. What do you do for self-care? I used to be an academic and now do projects in mental health and art or combined. I used to be an academic in Education, but after PPP I found it too stressful and not appropriate for my needs anymore. I need to feel passionate about something. Take good care!

[JosephineFay in reply to Pikorua]

Will private message you.

[MotherOfBears]

I haven’t started coming off mine yet but I’m sure there is a post on here recently about coming off meds. And specifically insomnia. I’m sure someone talked about a couple of medications to help with the insomnia?

And sorry if this is really obvious but when I have had insomnia in the past I have needed to double down on sleep hygiene. No caffeine after midday, get outside as soon as possible in the morning even if only for five mins, vigorous exercise in the morning. Sorry if this is all obvious.

Good luck and hope someone with experience can help you xxx

[JosephineFay in reply to MotherOfBears]

Thank you mother of bears. When you had insomnia before were you antipsychotics medication? How is your insomnia now?

I have pretty good sleep hygiene to be honest and sleep from about 11pm to 5am but it's very broken sleep waking between 5 and 7 times.

[MotherOfBears in reply to JosephineFay]

Waking up so often sounds tough.

When I’ve had insomnia it hasn’t been because of medication, no. I used to get quite anxious and have palpitations, sometimes not getting to sleep until the small hours. Or waking up at 4am not able to go back to sleep. As I say, I doubled down on sleep hygiene which wasn’t a cure all but did help.

[JosephineFay in reply to MotherOfBears]

Thanks for the clarification, how do you cope now. Have things improved. I don't have trouble falling as sleep as I take sleeping tablets. Its staying asleep and very early waking that's exhausting me. X

[MotherOfBears in reply to JosephineFay]

Things are fine for me at the moment because I am taking olanzapine. When I used to get episodes of insomnia they were usually because I was stressed, used to get palpitations

[Survivedwithcolor]

I know we’ve already talked but I just want to send you a virtual hug and cup of tea. I am thinking of you and praying things will start to turn around soon. Seeing the new doctor sounds like a good step and they may be helpful to you.

Remember that all meaningful change starts small and then you build on it. Start with one thing you think is manageable and then stick with it. Those things will become easier as you learn them and then you can do another thing. For example, maybe you’d like to try to give up caffeine. Don’t try to do it all at once. Just reduce your daily intake by one cup, or if you only have one cup, make it half a cup. Give that a little time, then do half of that. Soon you’ll be ready to stop altogether. Over time little changes like this can make a big difference. I know it seems impossible right now but we have faith in you. You are here seeking help and that shows you have already taken the first step - many steps. 👏