To want to come off MH medication

[UndertheCedartree]

I'm sick to death of it.

I take a lot of medication but it causes a lot of confusion/bad memory. They also have nasty withdrawal effects.

Due to memory problems I forgot to get my medication yesterday so have had horrible withdrawals all day while trying to get hold of some meds.

I was never meant to be on them at this high dosage for so long. I was meant to be given therapy and the medication reduced. But I've been waiting 4 years and I honestly don't think they'll ever give me the therapy now. I feel as time goes on these medications aren't helping as much probably due to being dependent. Overall I'd probably be better off not taking them.

Has anyone come off pregabalin or quetiapine without having therapy? I take quite a few others but those are the worst offenders.

I felt exactly the same. The only way to do it is to reduce the amount very very slowly - over months. And generally it should be under the supervision/advice of a doctor. Don't get impatient as it will make withdrawal much worse and set you back.

They're medications that are meant to be taken for a year or two but unfortunately people do end up staying on them for much longer.

Can you make a GP appointment or one with their in-house pharmacist if they have one to come up with a weaning off plan ?

I just feel like I've been abandoned onto these medications. I've gained so much weight too.

Oh I would definitely do it under advice and very slowly. Because the withdrawals are the nastiest thing. But the doctors just tell me to keep taking them because they don't want to risk your MH declining and they know there's not treatment (therapy) available. But I don't want to live like this anymore.

The GP wouldn't touch it. It would have to be my psychiatrist. But he just wants me to keep taking them.

Unfortunately as quetiapine is an anti-psychotic you really need to have your psychiatrists support to come off or change meds…. If you have a life long enduring mental health condition,a Dr. may argue that it’s in your best interests to continue…none of us on here will know whether or not this is appropriate for you. My parent did come off a couple of long term meds but they did have a condition that resolved over time ,even without therapy.

According to my psychiatrist if I have therapy I will be able at the very least to reduce the medication. However, I'm not being given therapy.

I'm just asking for people's experience of coming off these medications. I'm not asking for anyone to tell me if it's appropriate for me.

But I can't continue like this. It's not fair on my children or myself.

The reason that you should be going by your psychiatrists opinion rather than by random people on the internet is that coming off meds without medical support is not advised- so whatever someone else has managed to do it’s not going to mean you will be able to do the same without exacerbation of your mental health issue. If you have children you have to weigh up that life may be worse for them if you have a worsening of your mental health then it is under the current situation. Most people on long term anti-psychotics are on them for good reason and it is quite common for people to think they are better off them than on. The best thing is to go back and ask your psychiatrist to trial a reduction and to look at what other non drug-based interventions/ support is available in your area .

I've nowhere said I want to come off my meds without medical support. In fact I specified I would only do it under medical supervision. I know how nasty the withdrawals are so would never risk that on purpose.

Please stop trying to police my thread.

As I said my mental health is worsening due to being addicted to my medication. And I'm fully aware why I'm on them, but also of the negatives of being on medication long term at high doses. If it makes you feel better, I'm a nurse so I'm fully informed. I need treatment - therapy but I'm not being given the treatment I need and I am now dependant on medication and my mental health is worsening as my body wants more of the drugs.

And there is no support. Mental health support is cut to the bone.

I’m not on the same drugs but know people who are. I’ve not seen their need for the drugs spiral like you describe. Have you asked specifically for a medication review? What therapy do you need? In my area I was able to self refer for CBT and got it fairly quickly. There are also online courses etc.

@dantewest is completely right.

I can't tell if the issue is that you don't want to listen to your psychiatrist because you don't like what they are saying or the medication you're on is not working (or not well suited to you). One thing is clear - they're saying you still need medication. There must be a reason for this. Psychiatrists don't keep people on medication for the fun of it.

I suggest you make an urgent appointment with your (or any) psychiatrist. You're clearly at the end of your tether. Tell them that you urgently want to be put on completely different medication as this one is not helping you and is making things a lot worse. Tell them that you're actively considering stopping your medication completely. They will take this very seriously as it's a very obvious sign that things have gone wrong.

Wishing you all the best. You can do this xx

Yes, I have asked for a review, hopefully won't have to wait too much longer. I need long term trauma therapy from a psychologist. So unfortunately, not suitable for IAPT.

The reason is I need therapy.

Also to be clear, I'm not considering stopping my medication alone - I'd only do it under medical supervision. It's just having such a bad effect on my health and my life. I can't work as I'm so drugged up.

Thank you for your kind words ☺️

Hi OP, I understand how you feel. My psychiatrist wants me to add Quetiapine to my other medications but I’ve seen so many posts on line from people who say it has ruined their lives. What dose are you on and how does it affect you?

You may or may not find therapy helps at all tbh. Depends on your issues and the type of therapy and level of skill of the therapist. I had courses of cbt decades apart via the nhs psychologists and it didn’t help me at all. I paid for private psychotherapy for two years which was more helpful.
I have been on numerous mh meds including some which made me pile on stones of weight. The worst being olanzipine and quetiapine. I need pregabalin for nerve pain but won’t take it because I can’t afford more weight gain as am already heavy.
I have stopped meds cold turkey before and been ok. Had headaches after stopping zopiclone but that was all.
It is not a safe approach but like you I am a (retired) nurse and I think we make the worst patients.
Only you can weigh it up.
Google the withdrawal effects and consider the potential risks of your mh worsening without meds.
I would advise that you ask for an urgent medication review as a first step though. Tell them you plan to stop your meds then they are on notice and this might, just might get you flagged as a more urgent mh referral for therapy.

I'm on 500mg of Quetiapine. It has been very, very effective for my MH and sends me to sleep at night. However, it makes me tired and my memory is dreadful. It has also caused weight gain. When I take it, it gives me awful cravings for sweet food.

I'm not against medication at all. It has helped me a lot. But I don't think it's good to stay at high doses for long periods. I've been on it 7 years.

I respond really well to therapy and my psychologist knew me well enough to know it would help me. She would have done it herself but felt I was able to do it in the community.

Was your CBT just a short intervention? I think that helps few people to be honest. I'm on the waiting list for long term therapy. I've tried to go private but was told I need an MDT around me so need to stay with the NHS psychology team.

The weight gain is awful isn't it? Ha! Yes, we probably do! Thanks, for the advice. I've asked for a medication review.

I came off these exact two drugs four weeks ago as well as reducing lithium. My psychiatrist knew I was doing it although I only withdrew over a week instead of staggering it over months. What followed was just over two weeks of withdrawal hell.

I had cold sweats, literally requiring me to change all my clothes twice a day, leg and hand trembling to such an extent that I fell over, and couldn't use my hands to cut up food or anything useful, found it hard to stand, stiffness and soreness down my legs, and the worst of all was terrible anxiety, I was petrified that if I went to sleep I wouldn't wake up, irrationally worried about my children, consumed with fear and also insomnia. My body was on high alert as if I had way to much adrenaline so for example if a phone rang or an alarm went off or someone touched me unexpectedly I'd startle really intensely. I had to take time off work.

When those two weeks passed I felt much improved physically however I am now worried that I am starting to begin to feel familiar emotions of hopelessness and a little depressed even. The insomnia is continuing, I haven't slept much more than an hour a night. I'm back at work. The tremors, sweats and anxiety had settled but this weekend I had an important event and the symptoms started back up again and panic. Even today with the event over since yesterday morning, my hands are trembling as I'm typing this.

I know I didn't do things the right way and I would do things differently if it was again. But, I'm finished with anymore medication. I've been on medication of one type or another for 16 years. I've put on weight, I don't think that I'm the person I once was. I have huge regrets now about starting the medication in the first place as I don't know if I'll ever be right again. I don't know where my current symptoms are going to lead me and I'm worried about that. Looking back I think I felt much better six weeks ago before I started the withdrawal process. Maybe I should have stayed on the drugs? I just couldn't cope anymore with the weight piling on and not feeling like myself - whoever that is at this stage.

Thanks for sharing your experiences everyone. I’m thinking of stopping my existing medication rather than adding Quetiapine. I feel so low and can’t eat but the last thing I want is to put on loads more weight as I’m already obese.
I think psychiatrists are mainly concerned with keeping us alive so they don’t care if we end up on drugs with horrible side effects and even worse withdrawal symptoms.

I'm on Sertraline and Quetiapine- 50mg of each. Unfortunately I'm probably dependent on the Quetiapine to sleep now as if I don't have it I'm wide awake.

I tried to taper down on both meds but I could feel all my old anxieties & anger creeping back in so went back up to these doses.

My life is incredibly happier being on these because I feel like I can control my life. But I understand the fog they can put you in too. I personally don't think you should come off them altogether but taper down to a dose where you don't feel like zombie. It's just about finding the balance.

I'm just asking for people's experience of coming off these medications. I'm not asking for anyone to tell me if it's appropriate for me.

It would depend what you’re taking them for. If as a mood stabiliser then yes, I would wait for the therapy. Would the psychiatrist agree to reduce your dose?

You're brave!

I can't handle even a day of pregabalin withdrawal. As soon as I got my meds yesterday I opened it and swallowed it. Yep, the sweats are awful. I also get a blinding headache, terrible agitation, nausea, can't eat, so depressed you can hear it in my voice and I start to slur, the confusion is awful, almost couldn't get my address out to get the meds! I also feel deathly tired.

If I miss my morning meds by the afternoon I feel hopeless and depressed. But I don't know if that is just the rebound effect rather than I really am depressed.

I really understand where you are coming from. Please look after yourself and seek help if you need it. It doesn't have to be drugs.

I think you're right. They downplay all the side effects because they just want us to take them. But this really needs looking at. It can't be right to keep us in this state.

Yes, I'm on 500mg of Quetiapine so there's a lot of room for moving them down. And they can always go up again if necessary. I'm the same, can't sleep without Quetiapine. It helps me remember though cos if I'm lying there and not dozing off - I check if I've taken them!

The fact is these drugs saved my life. But now they feel they are ruining my life. I think there could be a better balance for me.

Do you mind me asking if on only 50mg - do you get cravings for sweet food and have you gained weight? Please only answer if you want to.

I've been waiting 4 years...I actually don't think it will ever happen.

Would the psychiatrist agree? I don't know, I'll have to ask him!

I just went back on meds a year ago. I came off them about about 5 years before that because I thought I didn’t need them anymore, in part because I’d just had cbt/erp therapy. I was coming off them slowly under supervision but then I got impatient (it was months between appointments) and I decided to discharge myself and come off the rest on my own. It was a massive massive mistake. I think looking back my judgment was affected by the fact that I’d already come off too much.
I had awful withdrawals, including a seizure. When the physical withdrawals stopped, insomnia crept up and then I got really ill. But the worse I got, the more adamant I got that I didn’t need meds. I was back on them for only a couple of weeks and it felt like my brain was rewired probably a lot because of the regular sleep. I can’t even remember some of what has gone on in the five years I was off them. It’s like a big nightmare.