My son has major sleep issues, and when he stops sleeping, it’s only a matter of time before things get bad.
I think a few others on this forum have the same problem. so I thought we could have a thread to compare notes.
It feels like my son stopped sleeping well around last Tuesday, and now I’m checking around the clock so that I know as best I can what’s going on. Last hospitalization was after less than 16 hours of sleep in 8 days.
So far, I know he’s been up for 30 hours straight & he hasn’t slept more than 4 hours a night in days.
I suspect, but don’t know for sure, that he has had a few other sleepless nights during the past week.
He’s pacing, laughing to himself, not talking unless I ask him something a few times, chain smoking like crazy, and not eating much.
He is med compliant - they’re just not working. 234 mg monthly Invega Sustenna shot (11 days in) plus 900 mg/day of Trileptal.
Its the same for my son. Not sleeping is the first indicator that serious trouble is on its way. He will work hard to get his hours straightened out, have established some day patterns, just to have it all knocked sideways by the sleeplessness that proceeds extreme psychosis.
He gets distressed and begins rubbing his head so much that his hair begins to stick out wildly. Could his head actually hurt at these times?
He tries and tries to sleep. He will turn the air conditioner on to chill himself, hoping that will bring on sleep. He paces, eats, can’t settle into anything, tries to sleep and repeats this cycle over and over.
At some point after the sleeplessness starts, an extreme psychotic episode will occur that could last for days and days and days.
I’m sorry to hear this. It sounds like it’s time they try another med to me. Has he ever been on Clozapine? I know your son has had this for a while and has tried several. I just wonder if this is a drug that would help him. Hugs…
I may have missed it if you spoke about it already but has your son ever had a sleep study done? Or seen a neurologist for a work up? If he has I apologize for missing that. I just can’t help but think with the sleep issue as severe as it is that there has to be something else at play besides what you already know for sure. Sleep is so critical for everyone’s mental health whether there is an illness at work or not. I know you know that. I hope he and you can get some much needed rest soon. (((hugs)))
He has not - if he goes inpatient this time, I’m going to ask them to try it.
He has not. I can’t imagine him being able to sleep long enough in a strange place to do a sleep study. I’m not sure I could do that either. I asked him if he wanted to wear a FitBit just so we could see if it showed anything strange, but he didn’t want to do it.
And he hasn’t seen a neurologist.
I had a discussion with our family doctor & she wants to work with us to run whatever physical tests that may have been missed over the years to see what we can find. I just been fighting the day-by-day fires so much I haven’t had him in there.
It has to be something they’re missing.
And, I added up the totals for the past 10 months in my head. Not that we paid this much because we have insurance, but hospital stays, doctor’s visits, therapy sessions, and all the drugs must have added up to nearly $80K if not over it & he keeps slipping back to where he started whether he’s taking the meds or not.
He’s averaging about 45 days out of the hospital before he has to go back in.
That’s the same when they gave him oral Zyprexa that was no longer working for him & he refused to take.
And, it’s looking the same on the maximum dosage of Invega Sustenna.
They tell me to be patient, it will take time. And, they tell me the meds make it more bearable so that they can handle the rest in therapy. But, it’s getting ridiculous.
The case manager/therapist is sure it’s because he isolates & ruminates on his thoughts. I agree that it would be good if he would get out & do things and get his mind of things, but it just can’t be that simple. If it was, I wouldn’t see any reason to take meds at all.
His inability to sleep at all would be part of the study and maybe something odd would show upon his brain scan or maybe they could do an EEG. BUT I totally get what your saying my son doesn’t feel like he could do the study either but he has a tendency to sleep too much and always has ever since he was a baby, only baby I ever knew that slept almost 11 hours from day one, kind of scared me and he would only wake when hunger pains or messy diaper got too much for him-he would rarely wake with noise or nudging him, I was constantly checking on him- scared of SIDS. When he was ill he often slept 18 or 20 hours at a time and nothing could wake him until he was ready to get up. Today he still averages 10 or 11 and he recently started waking up to his alarm clock! —we can work with that. I also had trouble doing the sleep assessment it is uncomfortable, but I was trying to see if I had apnea and I was borderline at the time. I feel like there is much more to our kids issues and I wish you and I could get all the answers we need from a psychiatrist or a medical doctor, but everything is so blasted specialized these days it is infuriating! You go to the doctor with a bump on your hand, and you are sent to a hand specialist…a bump on your dace–a dermatologist…bump on your foot…podiatrist…ridiculous and exhausting, no wonder so many of us don’t all the health care we actually need.
My son is the exact opposite - even as an infant, he didn’t sleep as much as the charts in the doctors office said.
I think he had it exactly the opposite. I can’t remember what the charts said, but if it was 8 hours asleep, 4 hours alert, he was the reverse.
It would be easier if he hadn’t lost his insight. Now, I’m trying to get him help without setting off all those “you think I’m broken” alarm bells. If he goes inpatient again, I guess I’m going to turn into the crazyiest, pushiest, PIA mother they ever came across.
You are not alone! I have been that for so LONG and only recently could exhale and relax, had to get counseling for myself and join a support group just to relearn how to relax and not be on high alert every minute of the day, I am still a work in progress. Be good to yourself when you can be. Things will come together again for your son, because you won’t settle for less.
I’m no expert for sure, but he sounds exactly like my son when he was in full blown psychosis. He wouldn’t sleep for days and wouldn’t eat for days and paced and laughed and talked to himself. In my humble opinion, his meds are not working. It frustrates me when they want you to be patient. I’ve always felt that the longer they’re in psychosis, the more permanent damage can be done to their brain. I think that’s why at first I’ve always been a bigger fan of over-medicating rather than under-medicating (if I had to choose one) just to get them stable and then taper off a bit. Of course, best case, you would hit it just right and not over or under medicate. I would be kicking and screaming to give him something else and get off the Invega Sustenna ASAP. Just my two cents.
Was it you that said you were lucky to find a doctor that wanted your son to be sane not just stable?
That’s exactly what I want, and if it’s what we have at the moment, I’m not seeing it.
If we have to change doctors, and I don’t want to, I think I’ll have to treat it like interviewing people for a job.
I have lots of reasons why I want to stick with this ICT team. They have lots of programs that would help him if he’s well enough to see the value in them & want to participate. Plus, they would be a safety net if something did happen to me. They can, when necessary, help with med management, transportation, housing, all kinds of things.
Even now, if he was willing, they would pick him up & take him to his appointments & everything. Not just his psych appointments, but even regular medical & dental appointments. It really is a great program. It’s just not a good fit for my son so far.
Exactly.
My only problem is my son lacks insight so I think he’s going to have to go inpatient to do that.
Clozapine will probably be the next thing they try & I need him to be on it long enough to see what it can do before I can manage that.
With his last doctor, they did a slow taper unless my son asked to be switched to something else.
Here, they just stop things.
For example, the hospital couldn’t up his Invega last time because he had just got a shot 4 days before he went into the hospital. So, they added Risperdal instead - 2 2mg pills a day. And, they added a mood stabilizer.
He came out pretty well. Still delusional, but sleeping good & able to go out with me.
Then, they up his shot to 234 mg & drop the Risperdal immediately. 5 days later symptoms start coming back & he has some sleepless nights. Before that, he was saying he still has some of his bad false memories (delusions really, but they present like false memories), but it was OK - they were fading away. Those came back in full force & they’re very painful for him.
The next visit, the doctor explains to me that it takes about 2 weeks for the shot to be fully available, then you have overlap, so if he’s a little over 28 days to getting his next one it’s OK.
If it took 2 weeks, why not let him stay on the Risperdal for another 2 weeks?
It doesn’t make sense to me and I can only ask so many questions with my son there. He freezes up & looks at me with these huge eyes like I’m crazy for what I’m saying or asking. And, since they only bill through Medicare, it’s not like I can book a separate appointment & pay for it.
Yes I was fortunate, I got the doctor I needed for my son even before I knew he would be able to help, that was 4 doctors ago and he had 4 more before that. I got rid of 2 myself but all the others moved on suddenly to other jobs.
I completely understand the lack of insight. My son was like that at the very beginning until the medication really worked. Now I can talk to him and reason with him but he still is a bit stubborn. I can get him to see things eventually now. Before, not a chance. You could always slip the doc a note or drop one off before the visit. I’ve done that twice. Just how you feel and you would really like him to be switched ASAP but it being the doctor’s recommendation not yours, or something along those lines. I’m sure you’ve done that too. It does sound like the Risperdal works with the Invega, at least better than the Invega alone. I don’t know why they do that either; again, what’s wrong with a little extra on board for a while. Maybe if you can eventually get him on Clozapine and get him stable for a few years, who knows, maybe there will be another med out he’ll want to try. I wish you all the luck and I’m really sorry you are suffering through this right now. It’s an hour-by-hour, day-by-day existence sometimes, isn’t it? My son is on Invega Sustenna and then Depakote as a mood stabilizer (also possible seizures) on the side. The Invega isn’t enough for him. He was on Invega and Abilify, and before that Invega and Zyprexa. He’s never just been on Invega. His moods get really bad without something added to the Invega. It seems to work for the psychosis but not the mood as much.
My son is also on Medicaid. I can’t make an appointment for myself to discuss it either. But they do get notes from me and so far they haven’t let it slip. That would be so bad if he knew I did that on occasion. ~~ hugs ~~
My son is on Trileptal as a mood stabilizer.
It’s helped a lot, but apparently not enough - unless he needs another increase.
It was funny. When they took him from 156 mg to 234 mg on the Invega & dropped the Risperdal, they also increased the Trileptal from 150 mg 2X a day to 300 mg 2X a day - and wanted to go to 300 mg 3X a day the next week.
They warned me. You might see him sleep too much, but give it some time to wear off. If it doesn’t, call us.
I’m like OK, we’ll see. If it works like that, it’ll be great.
It did not work that way - he had several sleepless nights before he settled into a pretty good pattern where he’s sleep a fairly normal amount at night then have a short afternoon nap on some days, not all.
It could be that he needs the Trileptal increased, and I did give him a little extra last night & this morning. So far, it hasn’t done much other than he’s not having the wild mood swings he was having yesterday morning. They can like it or not. But, if he is building up a tolerance & needs more of that each month, I’m not sure it’s a sustainable solution. Either way, his delusions are more severe & more persistent off the Risperdal than they were when he was on it.
As far as communicating with the doctor, they have a dedicated nurse I can call or I can email his case manager/therapist. They always get back with me the same day if I start early - even if it’s not what I want to hear. I’m pretty sure they’re trying to manage me as much as him.
My son slept too much on the Zyprexa so they switched him to Abilify. I know your son struggles with sleep a lot more than mine does/did. I bet if they got the psychosis under control, it would make a huge difference in his sleep.
I’m really glad to hear that you have a great contact and way of communicating with his doc/nurse. Kinda wish I had that. I hope that they switch your son before his next shot. Maybe at their suggestion he’ll be willing to give it a try. There’s so much game playing with this illness because of their lack of insight. It’s frustrating sometimes.
I wish we all lived in one happy little village together so we could support each other better! I know, I probably need on some meds myself! haha.
My son took Zyprexa from about 18 until he gave out on him right before he turned 27. If he couldn’t sleep, his doctor was OK with him upping the dosage himself as long as we called him & let him know. When he was feeling well, he could reduce it - just let the dr know. That was when he still had insight though.
Well, we just had a little adventure. He said he wanted to go to jail, then to the hospital, then to where his dad stays most of the time at our property out in the country. He’s roughing it in a very nice camper, but still a camper, while my son is unstable because he is loud & that makes it worse. Plus, my son gets paranoid about him & thinks he’ll hurt him - or me - and that has gotten ugly.
It’s about a 45 minute drive, so we get 30 minutes in & my son changes his mind so we turn around. Then 10 minutes later, he changes it again & we start back. This goes on & on until it takes us over 2 hours to make it there. We stay about 10 or 20 minutes & my husband’s idea of talking to him about what’s going on only agitates him, so we head home. At least this time it was a direct trip.
He wanted me to pull over so he could sleep before we got home, but we made it here - and he’s in bed now, although with his laptop going on whatever streaming music or movie he wants to watch. Fingers crossed he goes to sleep & sleeps until morning.
He did take his meds on the way home - after asking me if these pills would kill him. I gave him an extra Trileptal & I think he took it, so hopefully it’ll do the trick.
If not, the first time he mentions the hospital tomorrow, we’ll go - the one he wants to go to has discharges around 11 AM every morning, so there’s a good chance he’ll be able to get a bed tomorrow.
What an adventure. I’m glad it turned out okay and he’s asleep, for his sake and yours. And the hospital sounds like it might be in his near future, which could turn out to be a good thing really. Hope you get some rest tonight. Keep us posted!
Oh, he’s not asleep - he’s now up pacing, smoking & says he’s not sleepy at all.
He’s at 42 hours of absolutely no sleep and still going.
He stayed up for 10 days straight once, so who knows where this is going.
I don’t think he’ll make it 8 more days though - he’ll be in the hospital first.
I suspect he was up for 48 hours or more before he slept for about 4 hours Friday night.
He’s been doing his cycle - he’ll laugh uncontrollably for a while, then cry, then seem very out of it like he’s going to sleep, then be relatively even for a few minutes. The only thing that’s constant is the smoking.
He hasn’t ate now for over 24 hours either - he’s gone days without eating before too.
It’s truly amazing to me that he’s still standing. I’d be physically ill by now.
What would it take for him to go to the hospital? Meaning, does it have to be his idea? Would he go at your suggestion?
That is a long time without sleeping and eating. When my son was at his worst I think he went either 4 or 5 days with no sleep. He didn’t eat much and was skin and bones when I saw him.