The No Sleep Thread

Family
41

My husband won’t even deal with his own medical bills. My solution is to tell people that if they want to get paid, they will work with me. Otherwise, just keep calling & mailing & see where it gets them.

I am no longer giving them a choice. They will allow me to be part of the process & have input or I will remove them from the equation. I will move him to new doctors until I find one that works if need be. They are used to working with people who only have Medicaid and may need help with transportation & all kinds of things. I don’t have to work within those limits.

I spoke to the hospital case manager today & even though he called & spoke to me at 8 AM, he’s sure I’m dead. Last night, he was sure he was dead. This is not acceptable at all when they could have monitored him weekly and adjusted his meds based on symptoms. To neglect him like this simply because he is too sick to work with someone he’s paranoid about is beyond me and I’m not having it.

His old doctor would see him weekly when we were doing med changes, even if it was just a dosage change. He would see him more often if we needed to, although we might have to wait a long time to be squeezed in, and he would make small changes over the phone as long as he had seen him recently. I need to find another one like that since I don’t want to take him back to a pediatric psychiatrist at this point.

If the Risperdal is all it takes to get him back to a good place, I am going to be beyond mad - even if I can’t show it & burn his bridges. If I lose it & tell them exactly what I’m thinking, in the way I want to tell them, they’re going to be sure I’m the crazy person.

42

Vent here and keep good relationships with the team.

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43

That’s great advice, and it’s funny how my son’s illness is making me act much more mature about things.

I spoke to the nurse on the team & they were aware my son was back in the hospital. I asked how often they saw patients where the injections just didn’t work, went over the history again & some other things.

She did say that in her experience, people with current or past substance abuse problems were harder to treat because of the changes to their brain even if they weren’t currently using. My son developed an opiate addiction years ago because it was the only thing that ever worked for him. And, to be completely honest, it did work although it was not a sustainable option. He didn’t even have social anxiety on opiates. However, when we found out what he was doing, we cut off his supply & got him into a suboxone program where he stayed until about 10 months ago when he cut it out cold turkey, along with his klonopin. He experience no physical withdrawels, which is a miracle that no one can explain, but he started his cycle of hospitalizations a few days later.

That’s the first time anyone has told me that. I even called his Suboxone doctor to see if there was any relation to stopping the Suboxone suddenly & this cycle we were in. They said no - they’d never seen it & there was no literature to support it.

I believe the nurse though because it’s what I saw my son experience.

This all led us to talk about clozapine because this may be the only window of opportunity to try it - I can never be sure I’d get him in the hospital again. She’s going to talk to the doctor about it. If the outpatient doctor thinks it’s a good idea, she’ll talk to the hospital doctor, so we’ll see.

My son has never had a bad reaction to a drug - and he’s taken an incredible amount of psychiatric & non-psychiatric drugs over his lifetime. So, I’m hoping he can tolerate this one & it’s his answer.

I’m still holding onto the come-to-Jesus option though. I try to never do it when my son is present, but it gives me great pleasure to go off on people when I think I’m justified & they deserve it.

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44

Any response from the team about trying clozapine?

45

I talked to the nurse on his outpatient team on Friday afternoon, then she went to talk to the doctor who approved it so she could send a recommendation over to the hospital.

By then, the doctor he usually sees in the hospital was out for the weekend, so maybe I’ll find out something today.

He’ll be upset, not about the med change, but that it will mean he’ll probably have to stay in there for 2 weeks as they titrate up. He really, really wants a cigarette & plans to talk to the dr today about when he can leave.

He originally asked to go to the other hospital he’s been in where they get 3 smoke breaks a day & then changed his mind & wanted to come to this hospital mid trip - right where I would have had to turn one way or another. I didn’t argue because I was told this one would be more willing to keep him long enough to try the Clozapine, but I knew the not smoking would make him very anxious to leave.

Otherwise, it’s a better place. He said if they could just go outside to smoke now & then, and if the food was a little better, it would be great. I like it because I can see him every night instead of just 3 days a week.

He was a little snappy with me last night because he says I quiz him too much. I know what he means - he gets quiet, so I start asking him questions to start a conversation. Apparently, it gets on his nerves, so I’ll stop. It’s one of those things where one minute he’ll say I don’t talk to him enough, then he’ll say I practically interrogate him.

Last night, he was still Frank from 1980, the Middle Eastern people were still aliens, and he still had ESP. However, he did call me twice last night and once this morning just to check on me & make sure I was OK, so that’s more like his normal self.

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46

I spoke to his hospital case manager & she said they started him on Clozapine either Saturday or Sunday, so that explains a lot.

On Saturday, he was pretty sleepy, then on Sunday they had to get him up for his visit, he was wide awake, then after about an hour wanted to go lay back down.

I wasn’t seeing the steady improvement I saw the first time with the Risperdal, but now I know why - they probably stopped it after 2 days to start the Clozapine & now his system will have to readjust.

No idea how long they will keep him in there to titrate it up, but the case manager is going to get me a rough estimate sometime in the next few days.

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47

I’m glad he’s getting treatment that might help.

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48

I’m so thankful - and hopeful - right now.

His body process meds like a champ and he doesn’t usually get dangerous side effects, so I’m thinking he’ll be OK.

He would get headaches sometimes with a new med & that would always go away - he’d tolerate them.
He has gotten weight gain, but I’ll change his diet & get him to exercise as much as possible.
He had trembling hands even before he started meds, but the congentin makes him steady as a rock.
Drooling, I think we can deal with.
So, if there’s no seizures & no blood problems, I think we’ll be good.

I hope so anyway - I’m kind of feeling like this is the best hope for him.

I’ve read all the reviews I could find & I haven’t read anything that said it didn’t work - just a very few people who couldn’t tolerate it.

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49

I saw him for about 45 minutes during visitation, then he wanted me to leave.

The people are getting to him & aggravating his social anxiety - and he desperately wants a cigarette.
That’s kind of an indication that the meds are working. The more active his psychosis, the more of an urge he has to tell people about his delusions & that overrides his social anxiety.

He’s still delusional, and he said all the people in there give him an itch inside his brain - then he said that maybe the itch is just aggravation. That hurt me to hear just as much as the delusions.

At least he wasn’t Frank today, and we didn’t stay around the Middle Eastern guy & his 4/5 visitors long enough for my son to say they were aliens, but a lot of the other delusions were still there.

He said the doctor told him he has 6 to 7 more days there & that’s probably depressing him a little bit. He said he was going to sleep as much as possible to make the days go faster.

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50

So glad that you can see the signs that the meds are working and really glad they are letting him try clozapine.

51

It’s good, but I’m sad in a way.

I think the next week is going to be really hard on him if the social anxiety kicks in big time.

I know that he started showing signs of social anxiety very early in elementary school, but I don’t know if it’s a separate thing, or if it’s related to the psychosis, or what. It’s just as debilitating as the psychosis and nothing but opiates which he can’t have has ever helped very much.

I’m worried we’re going from one problem to another.

52

I used to tell my kids, that worrying was my job. When my son’s scz made worrying my life, I had to really work to claim my life back.

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53

Well, I’m a worrier. If it wasn’t this, it would be something else.

Luckily, that trait makes me very good at my job, even if it’s not always so great for my life.

54

My job called for patience and a willingness to work for long hours training others in details they have to coordinate with others. I can put in a lot of hours in before I see progress. I went back to work as a volunteer when the worrying was ruining my life. Because my work is so detailed, it takes all of my concentration. Going back to work even for just a few hours a week, was the only thing that stopped my brain from worrying about my son.

I can be very patient and watchful while I wait for the right circumstances.

55

Those are great skills to have when you’re dealing with psychosis & lack of insight.

I work in IT, so when I’m at a loss, I end up treating my son’s illness like a computer system I’m troubleshooting. I keep detailed notes, watch for patterns, run all the what-if scenarios through my head, try to proactively identify all the possible risks.

Sometimes it helps, sometimes it doesn’t, but it drives his medical team crazy.

56

I’m new to this forum but not to this illness. My son sounds so much like your son that I had to join to share a bit with you. After 7 forced hospitalizations, where I had to involve the police as he would not go voluntarily, so many different medications including the depo shot, none of which worked…he was finally put on clozapine as they decided that he is drug resistant. That was in May of 2016. It is the only drug that has worked. What I want you to know is that the drug didn’t work instantaneously. I saw small improvements along the way which kept me hopeful and able to continue coping, but I had many moments of feeling panicked that he was in trouble again. Those times of returned pacing, laughing, yelling at his voices, slowly started happening further apart, and less and less severely. He is now able to go out with me, has joined a gym which he goes to daily, is affectionate with me again and can socialize a little now. Before clozaril he could not go out in public, could not touch me, would not bathe, and considered me the enemy. He is not well yet is what I want you to know. No one ever told me that it could take this long. Had I have known, then the last 13 months would have been a little easier. I wish you nothing but the best slw. Us Mom’s of loved ones dealing with schizophrenia are all warriors!

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57

Thank you so much for sharing that. I think a few other people have told me it could be very slow, so I’m as prepared as I can be.

The problem with the depot is that it would work, then not work, so much so that we started joking that they were shooting him up with water. It was the sudden drops that made me think it was just never going to work, and the fact that it only seemed to work when he as on some type of oral antipsychotics too, and the outpatient doctor just wasn’t having it.

With those shots, it would literally be like someone flipped a switch. He would be pretty good, then the next day he would be not good at all. Racing thoughts, no sleep at all, pacing, laughing, fully delusional and a little paranoid.

My son doesn’t seem quite as bad as yours right now, so maybe it will be an easier transition, but it is is helpful for other people to share their experiences with me so that I know what to expect.

He can sometimes go out in public, but last night he described the feeling of being around other people as a “little itch in the middle of his brain that makes him want to kill himself” - he’s never articulated it like that before. Luckily, he still has his room to himself and he’s spending a lot of time in it right now.

He will give me a hug and tell me he loves me - although he’s now giving me a hard time for asking him so many questions. He says I’m picking his brain like a birds pick at each other. So, I’m trying to stop - I do it because in the past he says I didn’t talk to him enough.

He does bathe off & on, and rarely considers me the enemy - but that’s how he thinks of his father. To be honest, his father has done things without thinking that put him in that category, so I get it.

If I can see slow, sustainable recovery with even the tiniest improvements over time, I can be happy.

How does your son sleep on the Clozaril? That’s my son’s biggest problem - if he can’t sleep, he goes downhill fast. If it was “just” the laughing, pacing, delusions, etc, it wouldn’t be so bad. He doesn’t yell at the voices because he doesn’t see them as voices - he hears people say things they don’t, but he believes they really say them. And, he hears celebrities talk to him from the TV & his computer. If it gets bad, all of that gets shut off at his request, but usually they’re fairly friendly and telling him stuff he wants to hear.

He has one really bad delusion about a past therapist he fell in love with - that’s the one he really needs to go away to get better.

58

He sleeps well now. The drug itself causes sleepiness so it was good for us. He takes the pills at 9 pm and within 45 minutes he can’t keep his eyes open. He then sleeps till 11 or 12 am. I know that’s a lot of sleep, but compared to where he was before, I will take it. He does have the drooling at night that the med causes, but has had no heart issues or white blood cell count problems. They have had him up to 600 mg now for the past 6 months and are hesitant to go any higher. I am leaving that in their hands as I know this drug gets a little scary after that amount.

59

Once again, thank you for sharing.

If my son can sleep, most everything else falls together, so I’ll take it too.
He’s tolerated an incredible amount of drugs in the past, so I’m not too worried about the more dangerous side effects.

At this point, he’d be happy to sleep that much just to make the days go faster so he can come home. He’s anxious to be out of there.

Does your son smoke? Mine does, and I was reading it’s not the nicotine that affects the levels as much as the other chemicals in the smoke. I’d love for him to quit, but some days, it’s the only thing that gives him any relief or pleasure, so I leave it be.

60

You are more than welcome. I’m happy to help in any way. My son is a heavy smoker and I have left it alone too as he doesn’t have much else going on in his life that gives him comfort. I’m hoping now that he is working out so much, that he will at least cut down on the cigarettes to take better care of himself. Unfortunately my son also relies on Pot to get him through too. Not good for people like him, and for now there is not a thing I can do about that either. Unfortunately, my son does not believe he is ill. He is convinced that we just don’t understand that there are real people out there that through a satellite, torture him, talk to him and watch his every move. I hate this disease!