Planning to drive up to meet her mid August, we both had lots to do in the meantime. I am really looking forward to it though.You have a great weekend too!
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This is more for anyone reading this thread later if their family member is starting Clozapine.
I thought it was a one-off last week, but itās happening again this week.
He scares me by having a 24-36 hour period where he doesnāt sleep much at all, then for the next week heāll alternate between sleeping around the clock and somewhat normal sleep cycles.
So, I alternate between thinking heās on too much Clozapine or too little.
The delusions are still better, his mood is OK other than when he gets irritated with me asking dumb mom questions, and his appetite isnāt terrible. He has gained some weight, but heās not very active right now - itās unbearably hot here right now & Iām not putting any pressure on him to do anything. He hasnāt said anything else about being dizzy and I donāt see any other side effects, so as long as he goes back to sleeping in a day or two, allās well with the world.
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Could you get him to go the the pool. Water is so therapeutic.
We have a 24 foot above ground pool in the back yard.
He says heās going to get in it all the time, but heās only been in it once this year. Some years, no one gets in it.
When he was a kid, him & his friends practically lived in the thing.
The water is crystal clear and warm as bath water right now since the outside temps are in the upper 90s.
If I had the money, Iād take it down & get a hot tub. One of these days.
Heād get in that no problem.
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My son loves hot tubs but I wouldnāt be able to keep him out of it.
Mine would be in it all the time too if we had one, but that would be OK.
I think Iād be in it a lot too.
Back when we used to take family vacations, weād always rent a house for privacy because my son has never enjoyed being around a lot of people. Most of the time, theyād have a hot tub, sometimes a pool too. We always used the hot tub more than anything else.
My son is on his 43rd day (6 weeks) into the Clozapine treatment and doing well.
He doesnāt seem paranoid at all, no sign that I can see of visual or auditory hallucinations, his delusions are still down from before he started Clozapine, but I have seen a gradual increase since he had about 4 hours of questioning them about 10 days ago - that seemed to be his current low point as far as the delusions go.
Heās not doing a lot, but he doesnāt seem depressed. He does talk about doing things, like saying he maybe he could get a job doing X or go back to school for Y. He still has his social anxiety, but he is going into stores more, he seems to be able to tolerate being around his father better (sometimes, I canāt tolerate that - lol), and his appetite is OK, although weāre not always making the best food choices.
Once, I saw 1 very thin line on his face where he may have been drooling in his sleep, but he hasnāt said anything about it. Heās had dry mouth from drugs in the past & he hated that. I hypersalivate from time to time naturally, so itās not the worst thing in the world anyway.
No complaints of dizziness for awhile. Heās sleeping regular hours more often with the random day where he doesnāt sleep at all. Days where he sleeps all night and all day are getting fewer.
Heās been on the 200 mg/day dose for 4 weeks now, but Iām guessing it will go up next time he sees his doctor on July 24th.
The only concerning thing is that he still doesnāt think the meds do anything. He doesnāt like when I have to wake him up to give it to him on schedule (I donāt do it on the minute, more like within 2 hours of when heās supposed to take it.). But, last night he told me that he only takes it because I act like I wonāt get him any cigarettes if he doesnāt take them. Itās OK for him to think about that, but that means a battle will be coming if he still feels that way if he gets approved for SSI. I guess itās time to think of a new strategy so I have it before I need it.
So, thatās my update. Heās been out of the hospital for 35 days now, and he was averaging about 45 to 50 days from discharge to a new admission over the past year, with a really bad 7 to 10 days before he went back in. Iām pretty sure heāll make it longer than that this time - Iām hoping itāll be a really, really long time.
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Such great news @slw! If he continues to take his meds, my guess is that his hospital stays are over. Optimistic I know but, Iām basing it on my own experience. We did have lots of ups and downs for months, but never got to the point that he had to go back to the hospital for a stay. I am praying this is true for you. As far as when his SSI comes in, that is a tough one. For my son, he hated going to the hospital so much that he will do anything to keep himself out of there. If I remember right though, your son isnāt as terrified of that. Is there anything else that he feels dependent on you for besides money? Not sure how much SSI in the states is but here in Canada they get about 999.00 per month. My son has to pay me rent out of that. That way, he doesnāt have as much to spend on his āself medicationā.
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My son is not scared of the hospital. When he gets sick, it takes a long time for him to say heāll go, but heās not scared to be in there.
In fact, he said he could probably just live at the one that has good food & smoke breaks if he had to. Itās funny how heās always glad to come home though.
Iāll try to find some other things he wants that he needs help with to keep him on the meds. He wants Invisaligns since he refused braces when he was a teenager. Now that heās over the usual age for braces, our insurance wonāt pay for it. And, heād like to be able to drive again so he has a little more freedom - we really should have another car for that. I think Iām going to propose that if he saves some, Iāll save some, and weāll do it together - as long as he keeps up with his meds.
I havenāt let him drive for awhile without me in the car because he was so all over the place, and recently a MI man was speeding really fast & killed a lady. He said he thought he was flying. It was sad all around & I donāt want anything like that to happen, but if he continues like he is, itās only a matter of time before heāll need a little more independence - and Iāll be the crazy. controlling mom if I donāt let it happen when that time comes. (I am that crazy, controlling, over-protective, helicopter mom by the way - always have been.)
Iām kind of surprised he hasnāt complained about the blood tests, but he hasnāt said a word other than joking that heās contributing to feeding the vampires - not a delusion, a real joke. I just joked back & said if thatās the case, maybe they should pay you. He said maybe $10 since it was just a little bit of blood. He does get something afterwards - a coffee (heās loving the new Cold Brews), or takeout, or we go by a clothing place he likes to pick something out.
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That is excellent news! It will take longer for his brain to catch up to the idea that the meds have worked. FYI the worry that I would not give my son his beloved cigarettes kept him compliant for a very long time before it became his own idea to stay compliantā¦not the worst maneuver by far. I am very happy for both you and your son.
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This is sounding really the most positive Iāve heard from you. Really pleased but I know you donāt like tempting fate , neither do 1.
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Iām very cautiously optimistic.
I hate to get all hopeful because it makes the next crash that much more depressing.
But, then again, my comfort zone has never been solidly in the happiness zone.
I took one or two semesters of philosophy in college. I canāt remember who said it, just that it was in ancient philosophy, but the jist of it was that itās better to keep yourself in the middle range emotionally, where youāre never ecstatically happy or terribly depressed. Thatās kind of where I feel safe.
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Yep I get this totally, infact all my life (not with regards to my son) but for as long as I can remember I have always prepared for the worst (slight anxiety) then somehow if and when it happens Iām not as bad as I thought I could be.
My husband for example is laid back and doesnāt worry BUT when things unpredictable happen he seems to panic more and shout for me 
to sort it.
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I know - I feel anxious right now for no particular reason, or for a million reasons, itās hard to tell.
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My son has been on the invega sustenna shot since 2013. Once a month. Does nothing for the negative symptoms. Now heās trying Paxil Finally Something for anxiety! Iām wondering how long someone can stay on the same AP? Is there a lifespan or whatever for it? Iām sure the answers are all over the place! But anywayā¦ I think about that. I could google and I have.
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My son did very well on Zyprexa from right before he turned 18 to somewhere around 26.
So, I think thatās a pretty good run.
I let him manage itself because he was very good about taking more if symptoms came up & telling the doctor if he was reducing it if he was feeling better. At one point, the doctor tried to taper him off of it & he was quick to say when the tapering brought back symptoms & he wanted to go back up a little.
Those were the days when he had insight, and that makes all the difference. And, maybe if I had managed it more myself, the Zyprexa would still work. Itās impossible to know.
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So he had insight for sure! What made him lose his insight? Anasognosia. I mean I thought one either had it or didnāt. Or maybe knew something but thought they could handle it without meds. Was it psychosis or what that made him lose insight? If you know. Iām really not sure my son believes his diagnosis. Heās med compliant because I think he thinks heās still under court order.
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I think it was a combination of things.
- His illness was progressing.
- He was getting into his later 20ās, still living at home, and not doing anything with his life - and desperately lonely. So, he created a fantasy world that took away all those worries.
- He either stopped taking his meds like he should have or they stopped working - or a combination of the 2. Anytime you stop taking them, you have a chance of them not working again the next time.
And, maybe heāll get his insight back. He did have one afternoon not too long enough where I said something that had him questioning everything - and he did give up one delusion. But, he still thinks heās just doing all this stuff to humor me and get on disability. He has a million reasons why he goes into the hospital. I just leave it be. The meds will either work well enough that his mind will clear completely, or they wonāt.
Either way, the Clozapine has made him way better than he was and has taken the constant stress out of our lives for the time being.
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I accidentally took my sonās 100 mg Clozapine tablet this morning.
Just being stupid - I had a drink in one hand, the pill in the other & took it out of habit.
I couldnāt throw it up so I panicād & went to the local urgent care place. They didnāt even know what Clozapine was at first, then told me they couldnāt really help me - to go to the ER to be monitored.
Well, I wasnāt doing that because I donāt want to be there all day, so I called the pharmacist.
He said Iād probably be OK, but to expect to be sleepy, dizzy, maybe throw up - and to not drive until it all wears off.
Itās been a little over an hour & I might feel something slight but not much.
Wish me luck - and maybe I will get lucky & catch up on some sleep today. Iāll let you guys know how it was when itās over.
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Oh dear! Well, the good news is that you will have some idea of how your son feels on the meds, that the rest of us donāt have. Hope it wears off quickly for you and you do get that much needed rest! Take care,