First generation agents / FGAs / neuroleptics / old antypsychotics

Sleep is SO elusive!!

Even with Zyprexa that for me was the most heavy hitter drug: initially, for a couple of years, it allowed me to sleep, but not too much. It was just fine. Then, it still allowed me to sleep, but only 11-12 hours, and I started needing to take Provigil to cut it down to 9.

I have been on 60 mg Thorazine, 40 mg Latuda, 1800 mg Gabapentin.

I am feeling GREAT, but not hypomanic.. It is only by comparison that I realize how downtrodden by Zyprexa I had been for too long.

Two problems:

- word finding difficulty and difficulty remembering numbers I usually know by heard. It is severe: I had troulbe retrieving very simply words, including: "wash" when I was writing an email to my friend about my doing laundry. But I think I am willing to live with it.
- I sleep too long.

Waiting for the psychiatrist to tell me if I should lower Thorazine. I also suspect that the high dose of Gabapentin (I upped the dose to ensure I do not have akathisia) mgith be causing longer sleep.

Last night I went to bed shortly before 11PM. I did not set an alarm. I was up at 10 AM this morning, happy and ready to do great things with my day.

And no, I am no longer fearful of FGAs. I am so thankful we have them in our arsenal of helpful tools. Thank goodness for the wide variety of drugs available to us.

went to the kitchen and found three 10 mg pills of Thorazine on the dinner table. So... yesterday I forgot to take them and took only 30 mg and slept for 11 hours??

That's great that you slept! Sometimes I go to bed and forget to take my night time meds including 100 mg of Trazodone and I sleep anyway.

Wow! I now think: maybe it is the new me. Maybe I will be able to sleep forgetting to take the sleep med?

During my 4 years on Zyprexa, if never happened. If I forgot to take my Z, I later realized it because I was not sleepy at all and I had to get up and take the Z.

Speaking of Zyprexa: there is no going back for me in terms of it being a regular med, not now that I see how much better I feel off of it, but I am thankful knowing that if I ever start going manic again, there is something that will put a stop to it overnight. As an acute med for every once in a while, I will be glad to have it in my arsenal. I just do not want to take it nightly.

This is maybe TMI by sex is wonderful (I live alone so sex means a visit by a gentleman to me) and for many months it felt like a chore to such an extent that I was glad when it was over. So, a sea change. I am not talking about some amazing or super multiple orgasms, I am talking about the psychological aspects.

The word finding difficulty is getting worse, though. So clearly there is a tradeoff, but I am willing.

I jinxed myself writing the last post; the situation is far from stable.

I hade a very important conversation the day before yesterday, one that lasted for 4.5 hours. It left me very excited and I also overstayed my bedtime, going to bed shortly before midnight.

I could not fall asleep on my Thorazine. I just could not. I then decided to take a little Zyprexa just one time, to get over one night.

2.5 mg Zyprexa, no help.

Another 2.5 mg, no help.

2 pills of Atarax, no help.

Finally, at 3AM, took another 5 mg Zyprexa, for a total of 10 mg (back when I was on Zyprexa for maintenance, I would take 5 mg nightly, so 10 mg was twice my maintenance dose), put on Mozard, and was able to doze off. Next day I woke up late, stayed in bed for another good 2 hours, but then was able to do a few things. My mind was much quieter.

Last night I went to bed at 10:20 PM. No Zyprexa. Thorazine 60 mg. This morning I was up at 7:30AM without an alarm, but I did take Provigil and now am still a little sleepy.

The lessons I am drawing from these experiences:

- for Thorazine to work, I have to be disciplined about bedtime. This is not the first time overstaying my bedtime makes it impossible to sleep on Thorazine
- Zyprexa once in a while is OK as long as on most nights I use Thorazine.

The pdoc says he has a patient who takes Zyprexa once a week and Abilify the rest of the week. Maybe that will eventually be the plan for me: Zyprexa once a week and Thorazine the rest of the week.

I take Trilafon (perphenazine) and have had a lot of luck with it. I've been taking it for 15 years with no signs of tardive dyskinesia and no weight gain. It controls my psychosis well with minimal sedation, and also has worked well for preventing mania. Everyone is different, but I cannot say enough good things about Trilafon!!

This is great! I am really happy for you! A record of 15 years without med changes is almost unheard of these days and definitely would make me want to consider this option. Like you, I badly need to prevent mania, but I also need sedation for sleep. Are you able to sleep without sleeping agents at all?

So I am doing great IFF I get to sleep enough, which for me is 8-9 hours.

And I got my labs done this morning, to establish the baseline on these meds. During the week I will get a baseline EKG, too.

So the labs: lipids (cholesterol etc) no change. Fasting glucose 93, not too bad, was 83 in July 22, but this might be random variation.

The bad thing is that the liver enzymes have jumped up and they have never been as high. And we expected them to drop because I have recently lost 10% of body weight. But I have researched the issue and Thorazine can do it. In fact in the past when Thorazine was widely used it was a top source of liver toxicity in the US. But I am only taking 60 mg where the highest approved dose is 1g! I hope I will be OK. The retest of liver enzymes is in 3 weeks. I have read that sometimes on thorazine they stabilize by themselves, without discontinuing the drug.

Other than that, I feel fine.

Regarding word retrieval problems, I have for now discontinued Topamax which I was taking for weight loss. It can do it big time, has been dubbed Dopamax for a reason. I upped its dose 2 weeks before starting Latuda/ Thorazine so what I attributed to Latuda or thorazine might have been due to upping the dose. If I return to normal, fast word retrieval, we will know that Topamax is the culprit and I will try going bad to the initial tiny dose of it on which I had been in April-July 2022 without any problems. It might just be a dose-dependent side effect. I

Oter than that, I am doing fine and in general I am still incredulous. I, sleeping on a small dose of Thorazine, not needing Zyprexa at all? I find it hard to believe my luck.

I am on haldol, only 4mg. However I am having mouth movements (I feel like my whole mouth is vibrating at times) and I’m also staring with my mouth open. Makes me feel stupid. Even if I’m listening to morning meeting or something in my classroom my mouth is open. So this whole track of posts has been very interesting to me. Second gen APs do not work without unacceptable and often unusual side effects.

The most recent one I tried was vraylar and it made me so manic I’d often be up until 2am coloring in the living room madly. I also scrubbed the whole bathroom by hand including what could have just been mopped instead. Vraylar is designed to be effective for both manic and depressive episodes but I was so out of my mind manic, I haven’t been that manic since I started depakote five years ago. That always kept a lid on it.

Anyway if I ever get to see a psychiatrist again (don’t get me started) maybe I can go in with these suggestions.

I actually fell asleep and slept well yesterday without seroquel. I think my job just wears me out so much that I can sleep no problem. I hope it goes well again tonight, I was too sleepy on seroquel even though it was only 25mg. I’d love to drop a med! Currently I take five if you count the seroquel.

I had a similar experience on Vraylar last thanksgiving and had to discontinue and switch back to Zyprexa. I stopped sleeping and it was clear that my racing thoughts (wonderful and creative as they were...) and hypersexuality in thought (not actions) would soon devolve into a full blown mania with not sleeping at all. Zyprexa put a lid on it in 1-2 days.

I am doing quite well, but as a repeat experience, going to bed late causes problems–this med combo requires that I go to bed before 11. I also had to up Thorazine to 80 mg and Gabapentin to 1800 mg, but I will try to lower Thorazine and see if I can still sleep. It is a lot of Gabapentin and I hope it will work.

That's really interesting about the time you go to bed in connection with the sleep meds you take. I've never thought of that before.

Lowered to 70 mg and doing ok!

It still feels like a miracle each morning to wake up knowing that I did not have to take Zyprexa to sleep!

There appears to be a connection, which is all new to me! On zyprexa it was best to go to bed before midnight. Closer to 1AM and it was hard to fall asleep and when I did, I later did not feel rested. But this med combo, it still works if I go to bed later, but I then need to sleep longer. Very interesting.

It really is interesting. And likely not something you'd hear about from a prescriber. I appreciate you sharing that info, TCJ. And it's terrific that you've discovered it!

Thank you, Beth! I have confirmed that this is the case and when I go to bed earlier, even 60 mg of Thorazine suffices.

The big test it next week, though, when I go back to work after a short term disability I was on to effect this change. I am release to work only 50% in the first week, though, and then almost 100% for two months and then 100%. So we will see how it goes. In the first week I plan to work afternoons. A little anxious, of course, about how this will all play out. But glad that I no longer depend on Zyprexa for daily living.

I have just come back from a visit to a new sleep medicine doctor. I went for a second opinion but also thinking of transferring my care to her, and she was much more thorough than my previous provider, so I plan to transfer the care to her. She thinks excessive sleep requirement is due to mismanaged sleep apnea, i.e. I am using a wrong machine and also on incorrect settings. So now an in-depth sleep study will be on Oct 30 and then she will read it and likely prescribe a new machine, which I will then probably get my late November. She says that I will be very happy with it. I hope this means a positive change for me.

The insurance has not approved my sleep study and it was rescheduled for late November: the sleep medicine clinic staff think that they might get approval in the next couple of weeks. Right now I need exorbitant amounts of sleep and cannot work for this reason. I believe it also makes me depressed and anxious, but I am not faulting the medication mix. I think the meds work well, but they cannot be miracles, can they?

I am now on 50 mg of Thorazine for sleep and on 40 mg of Latuda for general mood management. I feel thankful that such low dosages of drugs work for me, but if the sleep apnea situation does not improve, I will be applying for disability insurance.

I had the sleep study. I was then prescribed a BiPAP machine which seems to be working well but by itself did not reduce my sleep need. My psychiatrist suggested that I reduce the dose of Thorazine (which I take for sleep as I cannot sleep unassisted by a medication) and that, knock on wood, seems to be helping. I have gradually come down from 100 mg to 20 mg. At 30 mg I started seeing positive changes and now on 20 mg I can get up at a reasonable time. Not at 6AM, but between 7:30 and 8:30. I will try reducing to 15 mg to see if I can further shrink my sleep need. I am gearing up to go back to work in April (I could not work due to hypersomnia).

My Latuda dosage is now 100 mg.

At the end of the month I will have the first sleep medicine follow-up after starting on BiPAP and after that appointment a check-in with my sleep psychologist.

In a way I cannot believe my luck, luck being that I no longer need Zyprexa, that I am on a non-weight-gaining mix of meds and that such a tiny dose of Thorazine is sufficient to make me sleep. I mean, the FDA-approved max for Thorazine is a whole gram and here I am, doing just fine on 20 mg.

And the liver enzymes AST and ALT are finally back to normal. Either it is the weight loss, or the reduction in Thorazine dosage, or both. I am happy.

This is really great news, Tart Cherry Jam! I wish you luck in the next phase of your recovery -- getting back to or to a place you really want.

I had a similar experience with medications. For the first few years of my treatment for bipolar disorder I was on a roller coaster with my moods, sleep, body weight and various other side effects. Over time, my medications changed, sometimes for the worse, but then for the better, better, a little better, etc, with only brief increases and less desirable changes. I still have a little ways to go, though, in terms of overall health and an ability to tolerate higher stress levels sufficiently.