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Starting up on Clozapine


#141

Another experience for the parenting someone with mental illness experience wallet.

I wonder if at the end of it you will think you had expected more or less from the ingestion than you actually end up experiencing?


#142

Don’t feel bad because I did the exact same thing early on when my son first started taking clozapine, I hadn’t even realized I took it because his medicines were next to mine. I went to work and had to be driven back home because I could not stay awake at all. I slept it off. Never made that mistake again. No harm though other than unavoidable sleep. After that I separated our medicines in two different places.


#143

Oh hope you are ok, let us know how you get on.


#144

Do they plan to keep your son on Invega Sustenna and Clozapine? What dose of Clozapine? My son is currently on Invega Sustenna but he is still hallucinating and having paranoid delusions.


#145

They plan to keep him on Clozapine.

It’s about 28 hours after I took it, but, I felt more than sleep., th
I was so out of it was slurring my words - my son wanted to call 911.

My hand eye coordination kind of left too, so it would take be forever to put my hand on the right thing then more time to grip it - then, almost evertime drop it again. It’s even effecting my typing skills.

I didn’t get a lot of solid sleep - I just kind of went in and you.

I understand why people don’t like the drooling. It’s more like you accumulate the saliva in your mouth whlle you sleep, then you get a drowning sensation

All that being said, he’s not complaining of any of that, so we’ll keep moving forward with it. He’s only on 200 mg/day, so we’ll see


#146

Wow! Glad you are ok. Can see why they work them up so slowly on the med now, to give their body time to get used to it. Take care,


#147

It was miserable and I’m still a little foggy headed & my body feels like it’s pushing through water.

If they felt this way all the time, I wouldn’t blame anyone for not taking them.


#148

Your posts about how well your son is responding to clozapine are so good to read! I understand COMPLETELY the hesitancy to be even cautiously optimistic. My son’s response hasn’t been as good as yours, but it has been life-changing nonetheless. I can often enjoy a sense of peace that I couldn’t experience for years.


#149

Thank you guys for sticking through this with me & all the advice about going ahead with the Clozapine.

He has a long way to go, but it feels somewhat in control for the time being. Except for when he gets talking about his delusions, he’s pretty good.


#150

Have you thought about taking it for a few more days to see how long it takes the side effects to go way? :wink:


#151

Me? absolutely not. I’d be a zombie - when I couldn’t speak clearly he wanted to call 911 for me. It was like being drunker than I’ve ever felt with 0 fun. I’d reach for things and my hand would be about a foot off from where the item was, then when I adjusted enough to get it, I’d drop it. Then the fun would begin again.

I’d also get to the point where internally I’d think I felt kind of OK - then I’d try to move and it was like I was stuck in someone else’s body. It’s been about 36 hours now & I still don’t feel right - I just want to crawl into bed & sleep. However, the sleep isn’t all that restful - I still wake up a lot, I’m just going back to sleep a little better - I think.

I don’t like how it feels, but just because I feel that way doesn’t mean he does all the time because everyone’s different.

And, they give him exactly 14 pills between blood tests. I have some extra because of how his dosage increase fell, so he’s OK - but I couldn’t take many.

Finally, this med has some pretty scary side effects - I don’t think I should play around with it.

In the past, I’ve taken a couple of his meds. One, Zyprexa, was by accident - It was a loose one, I had dropped one of my pills & it looked pretty close to it. I could barely stay awake at work, but it was no where as extreme as the Clozapine. It took me a couple days of thinking back to figure out what I had done.

The second one I dried was his Adderal - just to see what it would do. I could definitely see where people would get high off the Adderall, plus it makes you hyperfocused. I can see where people would like that, but I have enough problems sleeping and I didn’t really like the dizzy/buzzy feeling.


#152

So happy that things are more stable for both of you slw. As horrible as it is that our sons have to take this, in many ways, it saves their lives, and ours.


#153

He’s really good about dealing with the side effects until they go away.

Me, not so much. If a pill gives me a headache, makes me feel sick or actually throw up, or I get dizzy, I won’t take it.
Luckily, nothing’s been that important to my health so far, but one of these days I won’t be able to be so stubborn about it.

I totally get why they don’t want to take them. I just don’t see much choice.


#154

There just isn’t a choice, is there? One day I will ask my son how he feels on them. Unfortunately the best tactic with him is to not bring it up. I’m almost afraid that if I do, he will start focusing in on his side effects, and decide he doesn’t want that anymore. Because he takes the whole dose at night, I suspect he sleeps through the worst of the effects, but your experience with that one dose makes me realize why it is so difficult for them to get motivated to do things. I can’t imagine…but a necessary evil sadly.


#155

Leiann, I’m the same way, it is best not to talk about it for fear it would make my son decide not to take it anymore! My son takes the whole dose at night too - how much does your son take?

Update - I scrolled back, and found that your son is on 600 mg. I would like to try an increase for my son from 250mg since his delusions are still so strong, but I know he would resist, so I won’t rock the boat.


#156

Yes, 600 mg, which is a pretty high dose. He doesn’t yell anymore at his voices, but even at that dose, I know they’re still there. I think they are just quieter than they used to be, and don’t “torture” him anymore. He still believes these fixed delusions though. Not sure how high his meds would have to go to get rid of them but I suspect we are stuck with them. Wish he could be on a smaller dose, and still function as he is now.


#157

It took me a good 48 hours to feel somewhat normal after my accidental medication.

And, I swear my brain is still not working right today - It feels fuzzy & I’m just not as sharp as I normally think I am.


#158

At 250, my son also has stopped yelling at the voices. Occasionally I am aware that his is probably hearing some still, and he might tell them to Shut up or Ef off, but the extreme responses aren’t happening anymore. He doesn’t seem tormented anymore.

Delusions are still pretty strong. Lately I think I have seen him show some willingness to not give up on delusions, but consider that the things he believes happened are in the past and that he should consider moving forward with his life.


#159

My weekly update.

He’s doing pretty well - I think he’s been on 200 mg/day for about 5 weeks. He sees the doctor this Monday and I have no idea what she’ll do about the dosage. I’m hoping she takes it to 200 mg/day.

He does have one side effect that he doesn’t like, although he hasn’t connected it to the meds. He doesn’t really drool, but he has saliva pooling in his mouth when he’s sleeping and it wakes him up. He says it’s a little hard to swallow. (by coincidence, I experienced the same thing when I took his pill by accident - it’s not fun.)

I looked it up online and saw that chewing gum during the day would kind of trick your body into swallowing more while you slept, and I also saw there were 2 or 3 meds that would help with it.

I still think it’s better than dry mouth, but I’d rather take care of it quickly before he says he doesn’t want to take the Clozapine anymore. Any suggestions?

(On my accidental taking of my son’s 100 mg pill - it literally took until today for me to feel normal - or think I feel normal. I’m not feeling the brain fog so much like I did yesterday. This is definitely strong stuff. When I did the same thing with Zyprexa a few years ago, I’d say I felt OK after about 24 hours.)


#160

2 mg of Cogentin (benzotropine) at bedtime slows the drool down to almost unnoticeable for my son and it doesn’t add any additional side effects of it’s own.