Home, Diag Forum, About, Contact Us, FAQ

Starting up on Clozapine


#41

My son had bad acne as a teenager, but has been pretty clear since then.
I don’t know what he was reducing, but he dropped about 60 lbs in 3 months last spring.

I was thinking it was the Zyprexa that he apparently stopped taking, but maybe it was him trying to not take the Suboxone?

Come to think of it, he didn’t gain a lot of weight on the Zyprexa until the Suboxone was started.

My son says Suboxone is the most evil drug ever & I should never have put him on it. Of course, when he was in the midst of opiate withdrawals, he thought it was the best thing ever.

Either way, I’m glad he’s completely off Suboxone & the benzos even if it’s what sparked this whole thing. We’ll eventually find the right med, the right dosage, the right something - even if it’s a painful journey along the way.


#42

He took his meds about 10:30, ate breakfast & he’s been napping for about an hour.

If those Tar Blocker tips & switching to an e-cig & nicotine gum made this big of a difference this fast, that’s amazing.

But, he did go from sleeping to not sleeping just as fast, so maybe that’s it. I’m almost scared to get my hopes up.


#43

On the Clozaril my son reported strange brain feelings followed by dropping things and then eventually seizures. I don’t recall if your son is already on an AC. Have they done an EEG?


#44

He takes Gabapentin for a mood stabilizer, so that’s also used for seizures & epilepsy.
That’s actually it’s primary use - it’s used for nerve pain & as a mood stabilzer too.

My son started talking about random electrical zaps - not in his brain, but around his body, but that was before the Clozaril. He mentioned it to the psychiatrist yesterday & she didn’t think much of it. I’m paying attention to how often he says something about it, because random, unexplained pain can be from either the psychosis or meds, or it could be from something else.

He has not had an EEG. Again, you’d think they’d do some of these things when he’s in an actual hospital, but apparently not. They did do 2 EKG’s the month before, so his heart is healthy at least.

I have to treat lightly with this right now too. So, I’ll add this to my list & wait for an opportunity. He’s already asking me if he’s “broken goods” because of the pills & I’ll take him tomorrow to get his blood work done for the Clozapine. Now & then, he’ll say he wants a brain scan - then, he’ll say he doesn’t want one.

I take daily, detailed notes about sleeping patterns, delusions, mood, etc, so if anything weird happens, I’ll make note of it. We have a dog who has seizures, so at least I will know what they look like a little bit and to make sure he doesn’t overheat if one lasts a long time before we can get him to the hospital.

I’m not too worried - he has pushed an amazing amount of medication through his body. Both due to doctor’s orders & on his own. I’m very lucky he’s alive. I’ll definitely be watchful though & I’m keeping everything that could possible happen in mind.


#45

FINALLY found my password reset email in my SPAM folder!

My son takes 250mg / day all at night. He was supposed to take the 50 in the morning, but he wasn’t, so the doctor put it all at night.


#46

same as my son except my son does 125 am and 125 pm --how is your son doing these days? :slight_smile:


#47

You guys are making me feel pretty good that he’s going up to 200 mg (100 am/100 pm) tomorrow.

He’s doing much better since we cut back on the regular cigarettes. Still delusional, but pleasant delusions only for the most part. And, he’s sleeping. He’s still eating a lot, but not as much as he was, so I’m hoping that calms down for him too.

So far, no drooling or constipation or any of the other side effects they talk about, and his lab work came back good.
He actually had a slight increase in white blood cells instead of a drop.

I don’t want to get my hopes up, because I’ve had them up so many times in the past year since the Zyprexa stopped working, but it’s looking good. Even my husband said “we don’t want instant results - we want slow, steady results we feel like we’re fighting for - something that will last this time”


#48

Right now he has been visiting the website psychrights.org and getting himself worked up about the fact that I am his guardian and that I make him take meds. He has no insight into his illness, so it is worrisome.


#49

Maybe it’s time that the computer oddly quits working? :wink:


#50

ah, its on his phone, and if that happened, it would be because the military or the aliens or MI-5 were messing with him.


#51

My son is going up to 200 mg today - 100 mg in the morning & 100 mg at night.

That’s a 50 mg increase, so fingers crossed.


#52

Yikes! I guess I am lucky my son is leary of using computers or smart phones, I tried to upgrade his phone from the little trac phone he has and he got pretty upset, had to get that little simple trac phone back again…that’s all he wants.


#53

that’s good news, I hope things continue to be positive! :slight_smile:


#54

He has smashed multiple computers, and won’t have them in his house anymore. But he will use his phone - even tho he is sure he is being monitored and spied on thru it!


#55

Weirdest side effect ever: burning sensation in one big toe.

This is the 2nd day of 200 mg/day, but he was sleeping so soundly, I didn’t wake him up for the 2nd 100 mg dose.
He too his meds about 8 am this morning, had breakfast, then fell asleep on the couch about 10:30 - woke up about an hour later because he had an intermittent burning sensation in one big toe.

I wrapped it with a cold, wet paper towel to see if that makes it more comfortable, but now he’s sure he has cancer in his toe.

We did have a talk this morning & I’m going to wake him up enough to take his meds on schedule. The 100 mg dose yesterday morning didn’t seem to bother him at all, but it made him a little dizzy this morning.

I’m guessing skipping a dose on a drug with a 14 hour half life, before you’re used to it, can make the side effects more noticeable.


#56

Something I learned with my son and I’m not saying that this applies to your situation but my son hallucinated things wrong with himself in the beginning. He would say something was wrong and sometimes it was nothing, for almost a year he thought he had a serious problem with his stomach because he said he “drank bleach”. He always felt something strange in his stomach, a sensation of some kind and it scared him. The doctor checked everything she possibly could and could not find anything wrong, after about a year or so on the clozapine he never mentioned the stomach thing or the idea that he drank bleach ever again. He never drank bleach, but arguing that point was never going to work. Thankfully the medicine finally did. Just an experience I wanted to share.


#57

My son is probably similar.

He thinks everything means he has cancer, but that doesn’t mean his toe didn’t really feel like it was burning.
Burning and electrical-type pain is usually nerve pain and it comes straight from the brain if there’s no injury.

He’s taking Gabapentin as a mood stabilizer & that’s also for nerve pain - I’m figuring it’s from that combined with the change in Clozapine - and that it will be a side effect that wears off as his body gets used to the additional Clozapine. Just like I expect the dizziness to wear off.

It will be nice if it works out like your son. I’d love for him to not think he has cancer every time he turns around.

Our last big thing was when he really did drink some Listerine - the new purple kind. He only drank maybe an ounce because it was a new bottle, but he was sure he was poisoned & kept on about it from early morning until late in the evening. So, I finally took him to the ER, and he was fine. He was pretty ill and they should have sent him over to the psychiatric unit, but it was a satellite ER, and it was late on a Saturday night, and he was a handful that I think they were happy to get rid of, even though they were really nice to him.

The next night, he did go into the psychiatric unit at their main hospital. And, he was still talking about that purple Listerine and how he thought he was dying.

What scares me is that just because he has a mental illness doesn’t mean he can’t have a physical problem too, but he worries so much about things that aren’t happening, that it will be easy for us to overlook something that’s very real.


#58

Wow I’m learning stuff from here all the time, before we knew my son was ill he was obsessed with what he thought was physically wrong with him, he thought his bones were changing, he bought all sorts of stuff like hair removal strips, black head strips, teeth whitening, none of which he needed, he bought a belt to wear on his fat" tummy he wrapped his legs in cling film to shrink them , none of which he needed and now he’s about 30lbs heavier and he couldn’t care less,
He was going to pay a it to have his teeth straightened! They were fine wish I had teeth like him! He wanted an operation to lengthen his fingers as he has short fingers, it was if he was trying to fix all the wrong things but knew something wasn’t quite right. Sad really .


#59

You are absolutely right which is why I treat his complaints as real regardless of what I think, he goes to the doctor. On the flip side (with my son) when there is something very serious wrong with him, like strep or pneumonia, he will insist he is absolutely fine. I have to see the signs and take action and get him to the doctor or ER even when he continues to say he is fine. It is a matter of constant vigilance. I often see a maze of contradictory thoughts and actions…still better than the old days though. No complaints.


#60

I just looked at the “psychrights” site. A little rant follows.

What a nightmare. As if anyone who needs to be is adequately hospitalized and efficiently treated whether voluntarily or involuntarily, these groups never present any large, repeated, double-blind studies, only theories, tiny one-time studies, and anecdotes.

My main problem with these groups is that they do not propose or provide any treatments or supports for people with severe mental illness. They do not care about the homeless, the incarcerated, and those lost to suicide or accidents while psychotic. People need to be alive, out of jail or prison, and sheltered in order to use their rights.

They make us all doubt ourselves, which is fine, I believe we should always question our motivations and actions. However, when someone with SMI goes off medication because of antipsychiatry’s useless rhetoric and has a terrible outcome, I don’t understand how they live with themselves.