Hope you've all had a good Christmas. As I write to you I'm feeling awful. My head feels like I've had lots of beer mixed with spirits and even though I've been up since about 3am I can't get out of bed.
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I am really suffering on the antipsychotic medication terribly. My entire body feels poisoned as if every joint is on fire. My entire lower half is numb and I have excruciating depression far worse than anything I had when I was ill.
I wanted to reach out to all the ladies who've had more than one episode of psychosis or who have continued to be ill long after having the baby.
With me it's been 20years and shocking failings by the NHS and I wasn't given any help at all apart from being given every single type of antipsychotics.
I feel as though I'll never be well again.
In addition did any of the ladies find that their meds stopped their periods?
Mine did and has given me early menopause which was devastating as I always wanted another baby.
I feel that I've trusted and believed the doctors that the drugs would be the solution but was lied to and not told about the many serious side effects that these drugs can have especially when you wish to discontinue them.
Is there anyone on here that is finding the drugs and their side effects problematic. So many ladies seem to say their drugs help them and help them even sleep better and mine gives me broken sleep and chronic insomnia.
I feel so alone with the experience as if I'm the only one whose suffering with the drugs. But I watched a YouTube with Dr James Davies whose written the books cracked and sedated and also Dr Joanna Moncrieff a psychiatrist who wrote about antipsychotics in the bitterest pills who argues that these medicines for some are dangerous and there is no evidence that they work on a chemical imbalance.
I know that for many ladies on here their drugs have really helped them but are there any others who like me have been pleased and relieved and have managed to get off their drugs?
Would like to hear your stories about coming off and if you have suffered ptsd or subsequent illness since having ppp can you share that too?
Josephine
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JosephineFay
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I’ve recently told you my story so won’t repeat, but I did take antipsychotics for 20 years and finally got off of them. I feel much better and my life has improved greatly since I did. I still take a mood stabilizer and an antidepressant and those are what I will continue with. I’m doing very well on these.
I read that one of the side effects of Haldol is stopping your periods, so that’s probably why that has happened.
The second thing is, I think haloperidol is an old drug with many serious side effects and this may be why you feel so rotten. I was once told they don’t often use this drug very much in the US anymore except for schizophrenia; I’m not a provider so I don’t know the true rate of usage but I do know it wasn’t considered for me and I haven’t ever met anyone here who was taking it. I have used at least six other drugs and can think of several more that are even newer with a gentler side effect profile. You might have a talk with your provider about why they chose Haldol for you and if there are drugs available to you with fewer side effects. Tapering to another drug can make it easier to change prescriptions and might make it easier to go off haloperidol.
Sorry you’re feeling so bad and I do hope things improve.
I can't believe you were on these drugs for 20 years. Thank you for sharing your story and for writing back again. What was is like to wean off the meds? Did a psychiatrist take you off and how long did it take you to wean off. Did you have any withdrawal symptoms and can you remember how much you reduced by at each stage?Yes I've heard that Haloperidol/Haldol is an old drug and so far I get side effects on every antipsychotic I've tried. This is the worst though and usually I take myself off or am weaned off by the psychiatrist no problem. On this occasion apparently the receptors in my brain have been effected and changed so much that I have to come off very slowly so as not to get very serious withdrawal.
Jo, I was indeed on antipsychotics for 20 years and every one of them had side effects. There were many side effects but the worst ones were gaining 100 pounds, extreme fatigue which had me sleeping through most of my life for five or six years, heat intolerance which made me truly miserable during the warmer months, a body tremor which may be permanent, flat affect, and many others. The sleeping almost ruined my marriage. I sweated so much my bras got mold spots on them (yes I changed them, yes I washed them, but they were constantly warm and wet.) Gaining 100 pounds destroyed my knees, feet, and back, and quite possibly led to me getting breast cancer. (Obesity is a big risk factor.) I spent many years feeling much the same despair that you feel now, hating my life and often wanting just to die and have it be over with. In fact, I was hospitalized many times for suicidality, for that very reason. I was also hospitalized for medication changes and medication problems. They told me that I was experiencing symptoms of schizo-affective disorder. I believe now that many of these symptoms could have been related to the medication and medication withdrawal. Once I stopped taking the antipsychotics, all the symptoms disappeared. That doesn’t normally happen with a psychotic disorder; they’re usually lifelong.
I think the real breakthrough for me was when I realized that in order to regain my health and lose weight, I really needed to try to get off the meds and see what happened. I started reading about withdrawal symptoms of the lurasidone I was taking, and realized that the “symptoms of my illness” I was getting when I cut back the dosages were actually withdrawal symptoms of the lurasidone. These were mainly sleeplessness, mind racing, intrusive thoughts, extreme anxiety and panic attacks, some paranoia, and occasional mild hallucinations (mostly visual, and usually at night.)
I did work closely with my psychiatrist and also my therapist to get off the medications and did so with their blessing and cooperation. Both of them had commented that they didn’t think I was a typical patient with schizo-affective disorder, and I had been quite stable on lurasidone for the last 7 years with no severe episodes or hospitalizations. Lurasidone/Latuda is a popular drug in the US because of its relatively low side effect profile and tolerability. I felt better on Latuda than any previous drug I tried. I don’t know if that’s available to you in the UK; it’s very expensive and may not be used by your socialized healthcare system. (Despite the fact that many people here in the US go without healthcare, those of us with private insurance are lucky to be able to obtain some really good medications.) Anyway, I agreed with my psychiatrist that I would try to cut back slowly, and that I would report to her immediately if things got bad. She knew I was trustworthy and experienced with my care and agreed to this.
I started at 80mg and cut back to 60; that wasn’t bad. When I cut from 60 to 40, I got withdrawal symptoms, so I went back to 60 and started cutting down by 5s. My psychiatrist gave me Hydroxizine in two different doses to take as needed to control the withdrawal symptoms. I still had withdrawal symptoms but the Hydroxizine made them tolerable. In this way I just cut back a little at a time. There wasn’t a regular schedule to it; I’d just cut back and deal with the effects, then when it seemed to calm down I’d cut again. It took me about four months to go from 60 to zero. It took some months after that before I felt like I was withdrawal free.
I feel like it may have been easier getting off Latuda than some of the other meds I tried. When I was taking Geodon, I’d get withdrawal symptoms if I missed a single dose by a few hours. I had pretty significant hallucinations when they tapered me off and put me on Latuda. I did that transition in the hospital because it was not going well at home. I can’t help but wonder if it would help you to taper off the Haldol to a less severe drug first, let yourself stabilize, and then taper off that one. You’ll have to work with your healthcare provider on that one.
I also think part of my ability to get off antipsychotics was possible because was taking a mood stabilizer and an antidepressant. I am still taking those and will continue to take them, because I do have a diagnosis of Bipolar 2 disorder and have had chronic, lifelong major depression and anxiety. It is my belief that these meds are holding me stable now and I could be on them for life. I am certainly doing well at the moment, mood wise, even though I’m having surgery in two weeks to see if I have cancer again. I’m going to be angry as heck if I’ve done all this to get healthy and still have to go through cancer treatment again!
My guess for you is that what you’re able to do is going to depend on what your main diagnosis is, what your provider will help you with and what drugs you have to help you along. If you have schizophrenia or Bipolar 1 with mania, your options will be different than they were for me, because you have different issues to control. I’ve never had mania, and the psychosis was only postpartum or in relation to the meds. I never had an episode of psychosis before I was 35 and had my second child. I had debilitating depression, but I never had mania.
All this (sorry so long) is not to tell anyone to get off meds, only that it’s possible, under the right circumstances. I wish you the best and you have all my prayers and hopes for a better path going forward. Please keep us posted.
Thank you so so much for telling me your story. It has been really informative and helpful. My diagnosis has been shitzo Affective Disorder and also Bipolar disorder as well. I don't know if its Bipolar 1 or 2. I have had psychotic episodes about 7 times in 20 years and this always happens when I come off the drugs and have been told by private psychiatrists that these are withdrawl psychosis from the meds. My nhs doctor disagrees and just think this is my illness. I disagree and believe I have ptsd with episodes of psychosis and after 20 years only last week was I referred to clinical psychologists and they told me that I have ptsd. It has taken me years of arguing with nhs psychiatrists to get that diagnosis. I was telling them that I had trauma from child birth and they were telling me that you can't get ptsd from child birth. At the moment I do not have the support of my nhs psychiatrist to come off meds. I have asked her for a referral to professor Ian Jones and this was met by a stony silence and no further actions. I'm due to see her on the 8th of Jan and will ask again. This is going to be a long difficult journey to come off and cut back on the drugs. As mentioned at the moment I am seeing a private doctor who does not prescribe. They are a former nhs psychiatrist consultant but felt the drugs are harmful to people and now helps people come off. I would prefer an nhs doctor to take me off but my current one will not agree.
According to Postpartum Support International, the organization through which I found this site, you can have PTSD from childbirth. I believe that. My first child was a very difficult birth and I struggled with that for years. I have also heard far worse stories.
I do understand your struggle with the physicians to understand your illness and take charge of your own treatment. I struggled with my health care providers for many, many years, especially in the beginning when I started to realize what the meds were doing to me. Keep advocating for yourself, and try to learn as much as you can so that you can convince your docs you are making informed decisions.
Sending you hugs and a virtual cup of tea to warm you and help keep you moving forward. Here’s hoping 2024 is a better year, although I too am losing sleep over what I fear are the possibilities.
Thank you for your support and for that virtual cup of tea and a hug. I am thinking about you too and the challenges you have also had. Please do keep in touch so that we know how you are.
I’m having surgery on Jan 9 to see if there is a recurrence of cancer under my breast implant, so that’s kind of my biggest worry at the moment. I just want to get it over with so I can get on with life. Here’s to good things for both of us in 2024.
Oh that's daunting to hear. I send you my best regards that all goes smoothly and that you'll not have to undergo any more of this. I am here for you and thinking of you. Wishing you a very healthy 2024. Please keep in touch with us when you're feeling up to it and let us know how you are. Jo
everything will sort itself out in the end darling. I had horrendous side effects with Olanzapine. What a mess I was. But I persevered and they settled down.
Just keep in contact with your mental health team and drink tea.
I do wonder if you could ask your mental health team to refer you to the Cardiff University Psychiatry (CUPS) service. Dr Ian Jones is a specialist in mood disorder (and pp). He could maybe advise your mental health team around medication and treatment etc?
I imagine because you've had so many episodes of psychosis a psychiatrist will want you to take some medication, but it sounds like the one you're on at the moment really sounds awful. I know it is an old anti psychotic.
Information about the CUPS service is here, your team would need to refer you to them:
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