Council for evidence based psychiatry.

[JosephineFay]

I am currently trying to wean off 4MG of Haloperidol or Haldol. Being on the meds has been a pretty horrendous experience. The side effects have been unbearable to the point that I'm looking online for any class actions suits against my prescriber and against the manufacturer. I do not feel that on the medicines information leaflets that I or my family were adequately warned of the side effects or withdrawl.

Has anyone else found it hard to stay on their meds or to wean off?

Jo

[Ellie_at_APP Partner]

Hi JosephineFay

I'm afraid I probably don't have much relevant experience to share, I am currently on Olanzapine and Venlafaxine and though they can make me feel sleepy and a bit zoned out at times, I'm so thankful they made me well from a acute psychotic episode very quickly once I was given them.

I'm working with a psychiatrist to slowly reduce in time. I have found coming off medication in the past quite easy, if I'm honest, just by following the psychiatrists advice and slowly weaning off, reducing slowly each month.

I really recommend speaking to a psychiatrist about medication, rather than doing anything just by yourself, especially if you've had a few episodes of illness.

Do take care,

Ellie

[JosephineFay in reply to Ellie_at_APP]

Hi Ellie, I've usually been able to come off my meds easily too in the past. Usually I can take myself off within a couple of weeks. My prescriber is totally against me coming off or reducing my meds at all. This has meant that usually I have to take myself off. For this recent episode of illness in February this year I was put on a slow release depot and really pressured and coerced by the mental health team to stay on the meds. Suffice it to say that I've really regretted this every day since. I don't know why but I feel incredibly sedated and sluggish during the day and have insomnia during the night. I have not slept well in nearly a year. I feel ill and very deeply depressed and those are additional side effects. Can I ask how many psychotic episodes that you've had? I've had about 7 in 20 years. I don't know what to do because when my prescriber recently gave in and agreed to take me off the insomnia upon reduction became exponentially worse. I am now seeing a private psychiatrist who advised me to get a jewellers scale and to scrape a tablet and reduce it by 1 gram every month therefore reducing painfully slow as the increments suggested by my NHS psychiatrist were too large for me to deal with the withdrawl. I do not know what to do anymore. The side effects have been awful.

[Ellie_at_APP Partner in reply to JosephineFay]

I'm so sorry you've suffered these awful side effects of your medication. I guess it isn't surprising that your prescriber wants you to stay on medication if you have had several episodes, sorry to hear about all your episodes, that must have been really hard. I have had two episodes, the postpartum episode, and one other at the beginning of this year. After the episode this year the psychiatrist said I need to be on the medication for 3 years, as this is my second episode. I don't mind this as the medication is really helping me to sleep which is good (lack of sleep I think was a major contributor in becoming unwell this second time). I am only struggling a bit with energy levels (I feel very tired in the evening and need to go to bed at 9 or so) and I feel a bit zoned out at times.

I hope you can find the right balance somehow, and a good psychiatrist who can perhaps help you find the right medication that doesn't have such of medication debilitating side effects. I'm so sorry you're struggling with insomnia, I am sure that must be having a big effect on your mood and energy levels.

Do take care

[Twobabies Volunteer]

hi JosephineFay, sorry to hear the meds and weaning is giving bad side effects. I’ve not been on the two you mention, I was on olanzapine and sertraline (as well as more sedating meds at acute stage of Ppp). I only weaned very slowly and following guidance of psychiatrist. The very very slow wean over min 8 months meant I was lucky to not really feel any bad side effects. I did struggle when on high dose when I felt much better as felt so slow and so tired . I felt I was fighting the drug more than the illness at that point. It’s very hard for you and I can understand the doc probs thinking they don’t want to risk another episode of Illness. Is having a chat with them about how you are feeling an option? Might there be alternative meds? might you discuss options with them? Im afraid I don’t know any groups that want to raise concern over side effects I dare say they might exist but for you in shorter term might be worth a chat with them or requesting info on how you can get a second opinion?

Are you in the Uk? If you are side effects can be reported yellowcard.mhra.gov.uk

Wishing you all the very best. Definitely getting a weaning plan if you feel time is right and in conversation about your care with your doc might help reduce side effects . It can be really very bad as I understand it to stop suddenly, I know on days where I’ve forgotten to take a tablet by dinner time I felt enough side effects to be reminded! They are serious meds for sure. So do take care and get advice and even go to doctor or any medical people you trust if you feeling bad side effects.

Warm wishes to you. Lots of love xx

[Fatimahg]

Haloperidol is rarely used nowadays (only for short term use). It is a first-generation drug and no doubt you experienced some awful side effects (these are termed extrapyramidal side effects). Rather than needing to taper doses, there are far superior alternatives which have minimal side effects and could act as a direct replacement - such as aripiprazole. Try to get another opinion from a psychiatrist in respect to this switch (aripiprazole).

Abrupt withdrawal from haloperidol is not advised as it can lead to a "withdrawal-induced psychosis" which is a psychotic state cause by the drug withdrawal itself.

[JosephineFay in reply to Fatimahg]

I have had medication withdrawal induced psychosis on a number of occasions now. Thanks for your very informative reply. I'll take your suggestions and will talk to prescriber. But I usually have bad side effects on all antipsychotics that I've used before the insomnia being the common denominator.