Getting off of Seroquel

Dear all, thank you for this thread. I have been taking Seroquel since 2004 for Paranoid Schizophrenia and was up to 750 mg daily. I can confirm that when upping the dose, it does cause racing heartbeat. Usually this passes after a week on that dose. Also, it gave me depressive thoughts a half hour after taking it, when the drug hit my nervous system. I have successfully stopped taking Seroquel by gradually reducing the dose together with my doctor. He simultaneously prescribed Geodon which was much better but caused vertigo and a fear of my train of thought stopping, plus periodic exhaustion. I have now switched to Lurasidone (Latuda) which is an amazing medicine. It does not cause the brain fog and suppressed creativity of Seroquel, the nausea of Risperidone, the anxiety and sight distortion of Abilify, or the aforementioned (although mild) side effects of Geodon. It also doesn't cause the weight gain of Olanzapine. I have tried all of these medicines and Latuda is by far the best for me.

Now to my question. Last night was my first night off of both Seroquel and Geodon which had aided my sleep and I slept for about 15 minutes total. I wasn't anxious, train of thought was fine, and mood was great. I read a bit, had some nice reflections, and lay still for most of the night. However this insomnia was quite comprehensive and debilitating. I realize that I may not be able to sleep without Seroquel and Geodon at this point as the Latuda, being for me a miracle drug, does not cause any sleepiness. How long can I expect the insomnia to last? I do not want to be forced to take the Geodon to sleep but I may have to in order to prevent a psychotic break due to sleeplessness. I have called my doctor today and not heard back but I do want to connect with others who have similar experiences and can share them. I am very grateful for your insights.

@jameshoward
Hello James,
Antipsychotics were never intended to be used to induce sleep and experts don’t recommend them for that purpose.
I suffered from insomnia and usually didn’t sleep for 2-3 days at a time but have gone for 5 days & nights.
I tried a couple types of sleeping pills but they didn’t work so I threw them out. So then I tried to reset my sleep clock (circadian clock) and to learn better sleep habits. I use to go to bed at 2, 3 or 4am which was especially imprudent since lack, or poor quality sleep is a major trigger of seizures, my nemesis. Stanford University Sleep Center recommended going to bed 15 minutes earlier every few days to a week so every Monday I did that till I was in bed by 10.
Here are some changes I made to improve my sleep but of course it’s different strokes for different folks.
1️⃣ Get plenty of natural light (when possible)
2️⃣ Open the drapes in the morning or go for a walk
3️⃣ Turn off or dim lights at night
4️⃣ Turn off TV, phone, computer etc
5️⃣Relax before bed. Go to bed and get up at the same time every day.
6️⃣ Get plenty of exercise during the day or go for a walk in the evening (I'm not too successful here)
7️⃣ Preferably avoid naps
8️⃣ Sleep in a cool room without any noise if possible.
9️⃣ Eat a healthy diet at regular times but not close to bedtime. Drink plenty of water during the day. No caffeinated drinks a few hours before bed.
🔟 A comfortable bed is essential
Changing your sleep habits are possible but it takes patience and determination.
Of course your particular sleep issues will be a factor.
Have you seen a sleep specialist?
Take care and good luck,
Jake

PS,
There has recently been a couple of new Insomnia drugs released. Sorry, I forgot their names.

Hi, @jameshoward - I wanted to add my welcome to Mayo Clinic Connect. Having insomnia as you describe sounds very difficult as you are tapering off quetiapine (Seroquel).

Since you mentioned you have a diagnosis of paranoid schizophrenia, I thought you might also be interested in this discussion on that condition https://connect.mayoclinic.org/discussion/daughter-with-unmedicated-schzophrenia. The members there may be particularly interested in your treatment journey and what has worked well for you.

Did you hear back from your doctor today? If so, what did he say about the sleeplessness with stopping the quetiapine (Seroquel) and ziprasidone (Geodon)?

Thank you, Lisa. I did indeed get a callback from my psychiatrist who indeed informed me that I could take quetiapine 25 mg to sleep. I however had destroyed my current supply so we decided that I would take Geodon 40 mg to sleep and continue with the Latuda as an anti-psychotic. I will talk to him more on Monday but I believe that the solution for me will be 37 mg of Geodon to maintain my current psychiatric state, and 40 mg of Geodon to allow me to sleep successfully. I will have him confirm this. I will not be able to be free from sleep aid at this point as missing entire nights of sleep would affect me mentally as it has in the past. It is unfortunate that I do have this Seroquel addiction but I am grateful for the help it has provided me all these years. I will also check out that thread right now. Thank you again for the welcome.

Hi Ainsleigh, thank you for the advice but my ai. Was/is to quit seroquel altogether. I guess I quit around end of Dec by my post. I'm good! I take 1 mg clonazepam + 10 mg sublinox when I go to bed. My sleep is fine ~7.5 hrs. I did get very itchy. I took one 24 hr non-dorowsy antihistamine and I was fine until this morning, so about 2 days.

That sounds strange.

I received a wrong diagnosis of bi-polar II about 20 years ago (new DX is ADHD) I've successfully titrated off lamotrigine 200 mg, lexapro 40 mg, lorazepam 15 mg and finally seroquel. Still taking 5 mg of trintellix. The problem is insomnia - it started the 1st night after last dose of seroquel. I am trying a change in lifestyle (vegan and exercise) that seems to be helping with other withdrawal symptoms I was having - but insomnia is the worst and I really need to be able to work my part-time job. I can't go to sleep before 2 or 3 a.m. and then wake up around 6 a.m. I can sometimes go back to sleep until around 10 a.m. and function the rest of the day. How long will this last? I've been off the seroquel now for about 2 weeks.

I would like to give you hope by way of telling you that it won't last long but this depends on the amount and how long you took Seroquel. In all matters like this, consultation with a competent psychiatrist is crucial. I had been taking Seroquel for 6 years when I accidentally forgot to take it with me on a trip. I lay pretty much sleepless for a month but was somehow able to function because of mania. I was taking 750 mg for a year before this, my final withdrawal from Seroquel. I experienced one night of no sleep before I had my psychiatrist put me back on the Geodon at night. Right now I am down to 40 mg of Geodon and last night was my first good night of sleep. Right now I am alternating between one night of late sleep and early wakening - about 11 to 4:30 am and one night of sufficient sleep. I also have a part-time job which I am more or less able to carry out but i need to have some breathing room during this transition. I read briefly about the trintellix (Vortioxetine) you are taking and it seems like it might cause slight agitation but not sleepiness. My advice is not to go on a sleeping med but to find some alternate medicine that would treat the depression but would also cause some somnolence. I am not licensed in any way but I think that might be the best way forward. I am not currently aware of any anti-depressants that cause sleepiness but there might be some. Good luck.

Thanks so much for your information. It's encouraging that there might be an end in sight. I'm actually weaning off the trintellix as well and looking to more natural ways of dealing with stress, anxiety and depression. Diet and exercise and avoiding caffeine, etc. I needed the meds when I needed them - but not for the 20 plus years I've been on them, especially since the diagnosis seems to be in question by the current psychiatrist. I'm not taking anything for ADHD - going to try "mindfullness" techniques for that. It sounds like the Geodon is giving you some respite - but trying to work around not sleeping is just plain hard. And as you say "more or less" pretty much sums it up. Good luck to you as well.

Thanks for the reply. It is more or less because I can't work steadily as much as I used to and can't push myself to the same degree but I do function well in the situation that I have. Mindfulness is great if you don't need chemical support. I'm not able to stop meds but all respect to those who can.