Published on 12, July, 2020
Hi
got some good advice about my son yesterday who has come off antipsychotic drugs, three weeks now, did start 2nd Sept,but after 35 days had really bad withdrawals with agression, my son was not like that naturally, i mean it was never part of his Autism like some experience. So we went back on pills, they aggitated so we went off. Two weeks s later withdrawals all over again it seemed, involved police, almost got taken , but decided not to. There was one more attempt of on pills again for 3 days . the MH health nurse said look a decision has to be made, on or off. We said well they are making him pyscially ill and the cognitive skills are ruined, she said off then, and go with the withdrawals.
It was also said the on off thing was doing him no good. So we are three weeks in since coming off the last time, some of the withdrawals is moods all over the show, and confusion, which has hit the speech and thinking. In some ways normal speech is trying to reenter.
I was advisd on this site the other day that after 13 years of antipsychotics that my son will take time a adjust, I was told by few people here it will be ok, and I believe this, i want to believe it.
The first time of stopping this drug it was between week three and four the agression got worst, usually at this point in the past we lose him to hospital and more drugs
There is alot of emotional baggage from the past like my ex going when my son was 6, hees 30 in two days and still weighs heavy on him. His brother retreated to his room for 12 years through OCD (autistic too) he has been out for a few years and survived without drugs, but that is baggage for my son, and during the time of the 13 year meds his Granddad has gone into a nursing home, thats baggage and hes been too engulfed in meds to see his grandadd for a few years. And the withdrawals and the brain adjusting is also stopping him. He can't begin to understand why he is there.
Last night he was gaming, he loves gaming, well it keeps focus, but it is also addictive and bedtines during the drug time have always been a problem. So there is sleep deprivation. Sleep was a problem when very little too, but he grew out of it.
Sleep was a problem too in 2010 before gong to hospital for first time, anxiety hit about his father and his brother and other stuff, it may or may not have given a period of mental health problem, but the drugs never helped and we believe it was misjudged as a psychotic illness, not Autistic emotional grief and hormones which are hard to handle anyway, he as 17!
Back to last night, it reached 3am and I needed bed, I felt ill, and it wasn't the first night of 3am either, when I mention bed at any point during the day, you can see you anxiety and mood do a complete switch.
It ended up with him shouting alot at my eldest and a tiny bit of psycical aggression, he was trying to hold it together.
The drugs have made him very "young" for now. He asked me for a story and he had that, the other parts of routine he didn't want, like affection and kind words and definitely not saying good night.
I left him so many nights in hospital, i think that has left an impression on him, so has all the other trraumas of restraints and needles and police taser 2 years ago.
He is in bed now, think he has got a few hours sleep.
Appreciate any comments to you lovely people.
Well, this is a hot mess for sure! Firstly I am shocked and not impressed that he seems to have not been gently and gradually weaned off the meds. All drugged up to none at all to all drugged up to none at all would make any one struggle (to use a gross understatement!).
My husband is on antipsychotics, a very low dose, and when he wanted to come off them it was a gradual thing. As his dose was so low it had to be something like 2 days on one off for a a while, then one every other day, then two days off one on, the process took weeks or months. Sadly he did need that low dose and had to go back on, when that happened they had to hit him with a high dose which once he had stabilised we had to again gradually reduce. But there is no way your son should have been forced to go cold turkey! It sounds like his dose of whatever was higher than my husband's and it made him unstable coming off it too fast by which I mean not enough months on one of the steps! So it is no wonder your son's brain is struggling.
My husband also had some sleep issues. His psychosis made him prowl around at night, it was hard for him to stay asleep. We were advised about sleep hygiene and he did have sleeping pills for a few weeks, but 6 weeks is the max I think and they are problematic as they help one fall asleep but don't keep one there, and also the sleep is not as good. But it can help the habit to form. Not sure if that would help or not, it is not right for everyone and stopping with them was also a process!
As for sleep hygiene, that was basic things like trying to have bedtime and waking up time the same time each day and sticking to them. Staying in bed when one is supposed to and staying out of bed during the day. We do not always manage such things (I myself spend a lot of time in my bed on my laptop because it is warm and comfy here!) but it is a principle to look into.
It might be worth considering whether his bed is a nice place for him to be. You suggest he has bad associations with it from hospitals. Might it help if he had a fun duvet cover with fabric he likes, maybe prints from his gaming? You can get all sorts of fabric prints these days and even have some custom printed. Does he spend all his time in his bedroom or does he have another space which is his own, or are the other spaces in the house communal? It can be difficult to optimise, but if he has to be in his own room a lot then having different zones for sleeping and being awake might help?
It can be very difficult stopping doing the thing we are hyperfocused on, like his gaming. Transitions are hard anyway, and switching from a fun thing to a dreaded thing is horrible. Is there a way to reward him for stepping away from the game? I'm not sure how to handle that really.
Is he taking any exercise, especially outside. That is so good for anyone, and has definitely helped many of us. Time in peaceful nature, relating to animals, getting the daylight which helps set our body clock so we sleep and wake at more natural times, it hits so many things! And physical exercise which makes our body tired so it is easier to fall asleep and stay asleep, and it also can give give good brain chemicals like endorphins and the like. Also diet is important for welbeing.
So many things to consider! If you are already doing some of them, great! If not then it might be too much to change everything at once. Also try not to make too many demands on him at once, work on one thing at a time. It's just hard to know which one to try first - maybe ask him if he thinks anything might help, or if he fancies trying anything, like exercise or a new look for his bedroom. Changing too much at once is overwhelming though and can lead to more meltdowns.
I hope you find something which helps him.
yes, thanks for your answer. will think about it all. he was weaned off, but probably not gradually enough, he was on Haloperidol, it made him pyshyically ill, like a lot of them did as well as make a decline in his mentally and cognitive and motor skills, so he was on 0.5 mg which is the lowest dose for about 5 months. but going back on as i said made things worse.
yes, his brain is all over the show, but there are bits that are trying to come back, like sense of humor. And memory, although it does seem to be pretty far back things.
I will get back to you on some of your comments, tryin to get ready for the day right now before he wakes, thanks for your support and it is hepful to know people do get married that are autistic, well i knew that anyway, my x was, no diagnoses, but my ytwo sons inherited autism for sure.
s