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Starting up on Clozapine


#161

Thanks Catherine - he used to take that for hand tremors.

I’ll talk to him and see if he wants to bring it up with the doctor on Monday or see if it evens itself out.

Most side effects go away for him, so I’ll just go with whatever he wants to do.


#162

My son had his dr’s appt today.

The doctor thought he had improved so much that she’d leave him where he is on the dosage for now.
And, he is a lot better, so I’ll hope for more slow improvements.

He told her he really couldn’t even notice the medicine doing anything. She smiled and told him that was great - it was exactly what she wanted. It meant it was working and not giving him any bad side effects.

So, he’s taking 200 mg Clozapine and 600 mg Gabapentin daily, split evenly between morning & nightly doses.


#163

That sounds fabulous. I hope you can both start doing some fun things together and that he continues to improve.


#164

@slw How did your son respond to what his doctor said? { “She smiled and told him that was great - it was exactly what she wanted. It meant it was working and not giving him any bad side effects.” ] I like her answer.


#165

Sounds really positive.


#166

He seemed good with it but didn’t actually comment.

We had went to the dermatologist last week because he has this little scar on his face from childhood - it’s near the natural fold next to his mouth that forms when he smiles, so not very noticable - and I told him scars make for good stories anyway. The doctor was honest with him and told him there wasn’t much they could do for it.

But, my son also asked for some propecia because he’s thinning at his crown - not bald, just a little thin,

So, now he has a prescription he picked, and I asked him if he just wanted me to put it in with his nightly meds so he wouldn’t forget to take it - and he was agreeable to that.

I’m hoping he’s more positive about taking them now - if not actually happy about it.

We finished filling out his disability paperwork last night - I had already filled out a copy, then we filled out a copy with me writing down his answers. He did say yes to needing help remembering to take his meds, so that was good too.

He had another day where he questioned his delusions - he had been watching YouTube videos about false memories. I just told him that I couldn’t understand how some of the stuff he talks about could have happened, but he’d have to figure out whether it was true or not. None of his “memories” trouble him right now, so I’ll just let it run its course.


#167

I think this is real good progress , he seems to be slowly recovering if that’s the right word. I’m not very experienced so hope you know what I mean.


#168

I think so. And, I’d like to thank everyone here who shared their experiences with Clozapine before we got to the point it seemed like the next choice for him.

If you read about it, it’s a scary drug - and last year this time, I would never have thought he would be as med compliant as he is today or that he’d be OK with the weekly blood tests. He still makes jokes about feeding the vampires when we go in, but at least it’s a joke and not a delusion.

For anyone who reads this down the road, considering this drug for themselves or a family member, I’m not sure starting it outside the hospital would have worked.


#169

That’s the difference, he “jokes” about feeding the vampires, that says so much to me, Really pleased for you all.


#170

I’m so sorry, but this strikes my funny bone!! I mean, how in the world??? I guess I have a weird sense of humor – well, actually, I do have a weird sense of humor!! What happened? Did it do anything to you? I took LSD in college a few times and all that ever happened was I almost laughed to death!! Except for one time where I tripped and hallucinated for like 14 hours!! Believe me, I was Not a happy camper and never did it again LOL!! I suspect you got through this just fine??


#171

I got through it, but I don’t recommend it.

It took a few hours to hit, but I felt almost paralyzed - I thought I’d sleep through it, but I only dozed on & off.
I felt like I couldn’t move, I would reach for something to drink and my hand would end up about a foot off from where I meant it to go. When I did manage to grab my water bottle, I’d drop it about 5 times before I’d get a drink and everything was in slow motion.

I couldn’t really speak - my mouth just wouldn’t form the words. It really scared my son - he kept asking if he should call 911. It was terrible.

It got a little better each day, but I missed 2 days of work and spent 2 more days in brain fog.

I have a very low tolerance for any kind of drug, but I don’t recommend it to anyone - it was not fun at all.


#172

It does sound really awful!! I’m sorry I sounded so callous or whatever. I was trying to be funny, I guess. This wasn’t funny, though, and I would not like that feeling at all. So a person who does not have a psychotic illness, takes an antipsychotic and it almost sounds as though you became psychotic? I don’t know if that’s anywhere near a good description. When you say how you would reach but you weren’t near what you were reaching for, I’ve heard it described that this is the way it feels for them, the sensation like they aren’t quite there, so then their movement slows down so things aren’t getting knocked off the table and broken or they’re not tripping. I notice my son is slow moving around the house.


#173

Oh - I find the humor in it now that it’s over. I’ve laughed about it at work & with family, but it wasn’t funny enough to repeat.

I don’t think it made me psychotic - I felt clear minded. I was just extremely sedated physically.

I have no tolerance for any kind of mind-altering drug though. Last time I had some outpatient surgery, I had to cut the smallest dosage percocet they give out into quarters to keep myself from getting dizzy & sick to my stomach when I had to take one.

I accidentally took about 20 mg of Zyprexa once too. It looked similar to my migraine meds. For the next 12 hours, I could barely keep my eyes open, but didn’t have any of the other problems I had with this one.


#174

Per the delusions & Clozapine, my son has very isolated days, like maybe once every two weeks, where he questions the delusions. It’s either outright, asking my opinion (I’m careful to not give one unless it’s a delusion that makes him feel bad) or watching YouTube videos about false memories, dreams, etc.

Virtually all of his delusions are positive - as in, he’s done something good, he’s met someone famous, he’s had input to something in the world that he likes. And, he made one comment that if none of it was true, he might as well kill himself.

I have very little doubt that bumping up his Clozapine a little would increase the questioning & clarity, but I’m hesitant to do so. At this point, his delusions are the lesser of two evils when I compare it to suicidal depression - he’s been that depressed before, but when he gets that way, he usually lacks the motivation to come up with a plan and the means, let alone carry through with it. However, I’m always aware that could change.

On the other hand, letting him hold onto these thoughts isn’t helping him move forward with his life, if moving forward is something he’ll ever be able to do. I’m OK with things like they are, but I’d be very sad for him if something as little as a few milligrams were the difference between him being 80% better and 100% better.

So, I’m torn. I think since he’s side effect free & seems so much better, the doctor may be content to leave him at 200 mg/day for awhile.

And, a lot of you have said you continued to see small, gradual changes for a long time.

He’s only been on this med about 2 months. He’s much, much improved. I don’t see any big episodes that get shorter like I think Leiann mentioned. It’s been very, very steady, with random days of questioning things, and some days where the delusions are more present than others - but never even close to what they were before.

He’s sleeping well, but not too much. His appetite is good but not crazy. He has gained some weight, but it’s been really hot - I’m thinking about asking him to walk with me at sunset when it’s cooler here now, and gradually increasing it as we go into fall.

He did mention maybe joining a gym, maybe he’d go to barber school, maybe he’d start doing some animations, maybe he’d start working on an invention he tinkers with - so the thoughts are there even if he’s not following through with anything yet.

Any thoughts? If you were in my position would you just be patient for a while longer?
I know a lot of my worries are from all the hospitalizations in the past year, so even the slightest increase in symptoms sets my alarm bells ringing.

I’m leaning towards not saying anything on this months’ appt unless there’s a major change. I’ve got almost 3 weeks to decide. Of course, she could decide to up in on her own & I wouldn’t argue it.


#175

From your description things are progressing similar to what I remember with my son… personally I’d let the doc go up by maybe just 50 mg per day and then wait about a year before changing again or staying there for good. Sometimes that little bit like you said can make all the difference. All the docs my son has had have believed 250 a day is the lowest they would go for maintenance. My son was on 300 a day for the 1st 5 years before he reduced to the 250…and nothing worsened after the reduction. So you can go up or down but I think we should know all the possible benefits before we decide this is the best we can do. Just my thoughts.


#176

Thanks Catherine.

I’m kind of surprised they didn’t go up last time since he’s only on 200 mg/day.
She did say she might order the test to check the actual Clozapine levels in his blood sometime this week.

And, he told me to not buy him any more cigarettes when he ran out so he’d be force to use his e-cig.
That will automatically raise the effective dose a little because it will allow him to get his nicotine without the tar.

Another question. I’ve read that coffee can actually raise the levels of Clozapine in the blood - the caffeine?
I don’t understand that because it should increase your metabolism just like nicotine, but I guess it binds to different receptors.

But, reading that has made me lift my caffeine ban a little. I still have decaffeinated coffee only for the coffee maker, but he loves the new cold-brewed coffee. He’s been sleeping so well, that I’ll let him get one when we go out. That didn’t hurt him for a few weeks, so now I’ll buy a bottle now & then for him to have at home.

He mixes enough milk in it to make ice coffee that it’s probably pretty weak, but I don’t see any differences.
The cigarettes made a huge difference.

Any experiences with coffee or caffeine changing Clozapine’s effectiveness?


#177

Sounds like a good plan to get the test to check the blood levels. I guess it can vary greatly from person to person regardless of dose, but there is a blood level that is considered optimal, and going over it doesn’t seem to improve a person’s symptoms. At least thats what I’ve read.

My son never does as well when he is drinking more coffee, so who knows what’s happening there.


#178

Have you read the same thing? That coffee increases the Clozapine blood levels?

It sounds wrong to me, but I’ve read it several times.

He likes one of the cold-brew concentrate things that comes in a bottle just like 2-cycle motor oil where you squeeze a shot up in a little one-ounce section to pour out one serving at a time.

Maybe I’ll get a container and replace the coffee with some decaffeinated cold-brew I can make at home to see if it is what’s helping his symptoms tick up.
.
It’s crazy that cold brew is so special. You literally put coffee and cold water in a jar, let it sit in the fridge for a day and strain. I have an extra refrigerator out in the garage, so he wouldn’t know about my experiment.


#179

Heehee. I am about ready to swap out his regular coffee for decaff, cuz he has upped his consumption.


#180

I just keep filling up the red container from a green one - and make sure the green one is out of sight.

He hasn’t noticed a difference.