Fear of coming off antipsychotics

[Rainbow9725]

Hi all,

Apologies for yet another question - I find this forum so helpful and the best place for advice and support.

May I please know if any of you had fear coming off antipsychotics such as Olanzapine.

I came off before through tapering and I was absolutely fine aside from sleep - I didn't feel I was sleeping at all. As I wasn't sleeping I panicked and thought I would get ill again and stupidly took a friend's advice and took weed to help me sleep. It had the opposite affect and made me paranoid and I was awake all night long.

I'm now tapering again but I am so scared to be off Olanzapine incase I become unwell again. The PPP episode has scared me so much and the thought of going through it again petrified me.

I also have the worry that no one will notice I'm unwell - I have forwarned family/friends to keep a close eye on me but I'm still scared.

N x

[greta90]

I came off antipsychotic about a year ago . I was on Olanzepine first but gain a lot of weight so was switch to Apriprazole . First time round I had a lot side effects shaking hands racing thoughts terrible anxiety but I think I come off then too fast so I started to take them again . Second time round I was doing very slowly with close contact of my GP ( I live in England ) I was going to therapy at that time as well so it helped me control emotions . I think it’s really natural to be scared after what we have been through but now I feel a lot better without medication I know it wouldn’t be be everyone’s case but worked for me .

[Rainbow9725 in reply to greta90]

Hi Thank you so much for your reply.

So glad to hear you're doing better off the antipsychotics, that's really good news.

May I ask how you came off when you tapered too fast? My Doctor has said about now going down from 5mg to 2.5mg for three months and then off. I've asked if I can then drop to 1.25mg (half of the 2.5mg tablet) and he's said no.

N x

[Isabella5991]

Hello,

I have tried coming off before but it is not possible as I have Bipolar 1 and become unwell. However, if it makes you feel any better, I didn’t suddenly go into severely ill with psychosis again, I think it would take a bit of building up for that to potentially happen or just not. But for me I get pretty hypomanic, some psychosis symptoms (mild ish and no where near as ill as I was with psychosis. and lots of dissociation. Olanzapine had muted pretty much all of my symptoms.

Could you try coming down to a really low dose like 2.5 if coming off doesn’t go as well as you’d like? With the watchful eye of your doctor would be great too xx

[Rainbow9725 in reply to Isabella5991]

Hi, thank you so much for your reply.

Sorry to hear you've had issues coming off Olanzapine but happy to hear Olanzapine helps control symptoms for you - it's great you've found something that works.

I will be going down to 2.5mg from next week and the Doctor has said I'll be on that for three months then off from there. I'm hoping it all goes to plan. I feel like being on the medication I feel safe and coming off and the unknown of how things will go scares me a lot.

N x

[Maria_at_APP Moderator]

Hi NMG1991, it is very good that you have warned friends and family so they can keep an eye out as well, I do speak to my husband and brother when I am going through a medication change so they can be on the alert. I have weaned off olanzapine in the past and I was doing well until the lockdown in 2020, which is not a surprise, I did not have to go back on olanzapine again but just needed some help with my sleep. Some years later I went back on olanzapine after having my second baby. I am currently weaning off it and starting Aripiprazole as I wanted to be on something with less side effects (I have a bipolar 1 diagnosis). I get insomnia for some days when I come off the olanzapine, but I am lucky that it settles by itself within a week. I have also taken over the counter sleep aids which have helped me to get over that week of broken sleep. Perhaps that could be helpful to you?

I meant to ask you if you are following the plan from your psychiatrist, as it is important to have controlled changes in medication so things can be swiftly adjusted in case needed.

I can sympathise with your anxiety towards reducing the medication, every change has some uncertainty attached to it, but I do hope you are able to wean off this time.

Take good care,

Maria

[Rainbow9725 in reply to Maria_at_APP]

Hi Maria, thank you so much for your reply.

Sorry to hear you had to go back on medication when the lockdown hit. I'm sure a lot of people can relate to your struggles around that time. It was such a scary thing for us all to have gone through and I imagine it was even harder when suffering with your mental health.

May I ask what's best about Aripriprazole? Does it cause weight gain? That's been my main struggle with Olanzapine - I've gained 2.5st.

I am following guidance from my psychiatrist however he has said I will be on 2.5mg for three months and then come straight off. I'm not sure that's the best way and have asked if I can go to 1.25mg for a further 3 months then off but he has said no.

N x

[Maria_at_APP Moderator]

Hi NMG1991, I went from 2.5 mg to nothing as was the plan from the psychiatrist, but our metabolism is completely unique and you know yourself best. I know some people have done alternate days, so perhaps that's something to try if the plans feels too abrupt for you.

I switched to Aripiprazole as it is reported to have less side effects, I am currently struggling the most with sugar cravings and tiredness in the morning while on olanzapine. So I am hoping those will be reduced. It's early days for me, but will let you know if I see an improvement on that score

Take very good care,

Maria

[Rainbow9725 in reply to Maria_at_APP]

It's good to know you were able to recover from the sleep deprivation after a week - I hoping that'll be the same for me.

I've heard of people doing alternate days too, I may speak to my psychiatrist and see what he says about that plan going forward.

Sugar cravings are so hard to manage on Olanzapine - I do find these go after a while but it definitely makes me hungrier.

Look forward to hearing about the switch to Aripiprazole - I hope it goes well.

Take care

N x

[Maria_at_APP Moderator in reply to Rainbow9725]

I hope your psychiatrist listens to your concerns and you can both agree on a plan going forward. I wish you all the best on your weaning journey, do let us know how you get on

Maria

[Rainbow9725 in reply to Maria_at_APP]

I hope so too. Thank you, also wishing you the best with your journey ❤️.

N x

[Survivedwithcolor]

I can completely relate to your feelings of fear coming off the medications, and frustration with weight gain. I was kept on antipsychotics and other meds for so long, I did this many times. Especially in the beginning, switching meds was so difficult I often had withdrawal symptoms to the point they would send me inpatient for a few days so it could be done quickly and safely. Later on I didn’t have to do that. However, I still take Bupropion for depression and am terrified of going off it even though it’s probably contributing to the terrible anxiety I often deal with. I did quit drinking coffee and that has helped a lot. Not sleeping, hallucinations, I had all that when switching meds. What helped me to get off meds altogether was to take an anti-anxiety med called Hydroxizine. It’s not addictive and it’s just an antihistamine so pretty safe. That helped to calm me down enough to get through the withdrawal anxiety. Do you have a medication available to you called Benadryl or Diphenhydramine? It’s over the counter in the US and available everywhere here. It is also an antihistamine and can safely help with sleep on a temporary basis. It’s normally used for allergies or colds. (Be careful if you haven’t used it before - it can make some people fall asleep so try it at night.) Ask your doctor if this could be appropriate for you, especially if you have high blood pressure or other health issues.

I didn’t ever take Olanzapine but I did take a related med and a few others that made me very hungry. I gained 100 pounds. I just couldn’t stop eating, especially sugar and carbs. At one point I tried to take Aripriprazole. It didn’t work real well for me and I developed noticeable facial tics so I had to stop it, because those can become permanent. But everyone is different and it’s a good medication. You’d have to try to see if you could tolerate it.

It is a good idea to let family and your therapist know when you’re switching meds so they can watch for things you might not be noticing. Really, having someone to talk to who knows your history can be very helpful, even if it’s just friends and family. Tell them what to watch out for and to let you know if they see it.

Your feelings are real and valid and many of us understand them exactly. I am working on losing weight and have lost 55 pounds. It’s improved my health and exercise in particular has helped my mental health greatly.

[Rainbow9725 in reply to Survivedwithcolor]

Hi, thank you so much for your reply.

Sorry to hear of your struggles. I think I've been on it too long too, I was first prescribed Olanzapine for PPP 2.5 years ago. It's great you've found something that helps with your depression but not great that it could possibly be heightening your anxiety 😔.

I've heard giving up caffeine is really good although I find it hard to do as I do love a cuppa but it's definitely something I should work on to try and help my sleep. I will speak to my psychiatrist regarding hydroxyzine to see if that might be an option as I remember the anxiety really affecting me when I tried to come off before, it was to the point where I couldn't stomach food.

The weight gain is a hard one. The medication I am so thankful for as it took me out of a really scary place but the weight gain as a side affect is difficult.

I have told my family and friends to watch out for things out of the ordinary - I'm so scared of relapsing and no one noticing.

It's great to know exercise has helped your mental health - losing 55 pounds is incredible. Huge well done as that couldn't have been easy.

N x

[Survivedwithcolor in reply to Rainbow9725]

I’ve been working on weight loss for a year, so 55 pounds doesn’t seem like a lot in that time frame, but I have kept it off. I’d like to lose more but I’m currently in a situation where I’m trying to get a surgical wound healed and so I need to keep up proteins and not be at a big calorie deficit. I’m just working on eating as healthy as I can manage and that is a daily challenge. I’ve given up all alcohol, I just drink decaf coffee and mostly herbal tea. I do sometimes drink black tea and there’s a little caffeine in the decaf coffee but it’s little enough that it doesn’t affect me much. I sleep better too, so there’s that. You might try a decaf coffee or tea and see if that helps your sleep. It’s difficult to switch but I can’t deny that I’m less anxious, fewer panic attacks and I fall asleep pretty easily at night now.

For the weight loss I’ve been following Weight Watchers which is also available to you in the UK, I believe. It’s not very expensive to get the app and there are many online support feeds to encourage and give advice on being successful with the program. I will say that I tried it twice while on the antipsychotics and could not work it successfully because of the hunger factor from the meds. Once I got off the meds, I was able to get that under control. I still like to eat but I don’t eat mindlessly or find myself binging on sweets anymore. When I get done with this wound healing I’ll work on losing more, hopefully another 25-30 pounds. I was getting very unhealthy and being that heavy ruined my joints, especially my knees and feet. When the doctor told me that both my knees are bone on bone and I had to lose at least 30 pounds to be eligible for surgery, that got me started. I was also nearly diabetic and that’s a bad road to go down.

If I can help you with that at all please let me know.

[Rainbow9725 in reply to Survivedwithcolor]

Honestly I think 55 pounds is amazing! I hope you're able to get your surgical wound healed soon ❤️.

I will definitely try decaf as it's helped you a great deal. I sleep great at the moment but I believe that's because of the Olanzapine - I would like to continue to sleep well when off it. I'll try decaf and herbal teas as you have.

I've heard weight watchers is good and it's definitely something that's available in the UK which is great. I think trying to lose weight on antipsychotics is difficult but I also find my motivation on them is very low or at least it is for me.

Sorry to hear your knees are bone to bone - my Auntie has the same as I've heard from her that it is very painful. I'm glad you were able to address the issues to get the help you need and prevent you from getting diabetes. Diabetes and high cholesterol are two of the main things with antipsychotics I believe.

N x