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Starting up on Clozapine


#61

Could your son have gout in his big toe? My son complained about sharp needle like pain in his big toe. I took him to the hospital, they took x rays, sure enough he has gout.
They said its very painful, fortunately my sons gout comes and goes, but the doctor did prescribe a pain pill that he can take with his meds.


#62

I’ll get it checked if it continues, but I doubt it’s gout. We have a friend with it, and my son is pretty clear about what pain feels like - he describes some as shocks, and this was burning like on fire instead of sharp/cutting pain.

I want to avoid any kind of pain medication if we can - my son was an opiate addict from pain pills in the past.
He will abuse anything that he thinks he could possible get a high from.

He hasn’t mentioned it any more since this morning. It’s time for his evening meds, so I guess we’ll see if it happens again


#63

Hi,
My Son has been on Clozapine since September of 2016. He has pretty severe paranoid Schizophrenia. He had many delusions and hears voices a lot.
Since he’s been on Clozapine, He has improved so much! He just finished his 1st quarter back to community college after not being able to go to school for a year. He gets blood drawn every 2 weeks to check blood levels, and I know they have been ramping him up very slowly, as he tolerates it.

I wish you nothing but the best for you and your child.
God bless!


#64

That is so great @Janihil! Love hearing success stories :slight_smile: Gives us all hope


#65

Thought I would give you guys a little update.

My son is sleeping well, but not too much. His appetite is still good, but it’s calming down. I don’t see any signs of voices or hallucinations, but the delusions are still there, although all are pleasant and nothing is nightmareish. He hasn’t said anything about more bad dreams.

He met with his new case manager today & seemed to like her OK.

His mood is very even & we’re having so few ups & downs that I sometimes forget to add to the journal I’ve been keeping each day & just catch up every few days with not much of anything new to say.

He’s been on 200 mg of Clozapine (100 mg in the morning & 100 mg at night) for 2 weeks as of tomorrow & they’ll probably keep him there until he sees his doctor again in about another month. He also takes 300 mg Gabapentin morning & night as a mood stabilizer, but that’s it.

His craving for alcohol is greatly reduced, so that’s good too. He probably has the equivalent of one drink a day.
We’re working on reducing the smoking and that’s not going as well. He’d still smoke every waking moment, but we’ve compromised on 1 pack a day, then he can vape the rest of the time.

We still have a few arguments here & there, but they’re over quickly & not one gets all that mad.

So, all in all, it’s very good so far - he seems to be tolerating the med really well & I’ll just hope for the delusions to weaken as they go up in dosage and/or time passes.

As a side note, we went to DMV yesterday to renew his driver’s license. He got almost all the way through it & then the question popped up on the screen for him to answer if he wanted to register to vote or not. He’s already registered, so the nice older lady told him he could just decline & keep going through the questions. She got a really quick lecture on why it doesn’t matter if you vote or not because no one has free will - she didn’t even bat an eye, just kept on going. It was kind of funny and I think it was just the stress of going through all the steps of DMV - stand in line to tell the receptionist what you need to do, get a number, and wait some more, then follow a bunch of instructions once it’s your turn.

The rest of the day was better. He went to get his blood work done, & that all went smoothly. Then, before we went home, he went with me to Aldi and went through the whole store before he went back out to the car when I got in line. Usually, he won’t go in, or he just goes in for a couple minutes then goes back out. It was a good day for him.


#66

That’s was a nice update slw, I’m picturing the scene of you and your son doing all these things, even though I don’t know what you guys look like, funny that.

There were definately a lot of little positive moments in your day, he definately doesn’t seem as stressed.
I know what you mean about the little arguments , we have them but they are diluted to,what they were , he isn’t so loud and he stops much quicker than before.

It sounds like you are now actually enjoying this time with your son. He is so lucky to have you.


#67

I am so happy for you @slw! You, and he deserve some measure of peace :slight_smile: It sounds like he is tolerating the medication well, and he is on the road to getting back to himself. I am personally forever grateful to this medication for helping my son find his way out of this horrible disease, but as you are, am still afraid to get too excited about the changes. Wishing both of you, all the best!


#68

Its wonderful to read about his response.

My son’s delusions haven’t really weakened, but the psychosis is mostly under control.


#69

I’ve been thinking about that.
Someone said the other day that psychosis was a medical emergency, and I consider the delusions to be psychosis.

Is it the difference between acute psychosis & chronic psychosis?
Or do most people separate out auditory & visual hallucinations, and maybe manic behavior, from delusions and maybe paranoia when they talk about psychosis.

I kind of consider any break with reality to be psychosis, but recognize there are different levels of severity.


#70

My son has chronic psychosis - paranoia, a delusion, is a part of his chronic psychosis. Auditory and visual hallucinations are also a part of his chronic psychosis.

When his psychosis totally overwhelms him, I consider that to be an acute psychotic episode.

I agree, whether chronic or acute, its all a break with reality.

I think my son’s extreme distress during an acute psychotic episode is a medical emergency. Unfortunately, in my state, his severe distress, no matter how severe it is, doesn’t qualify him for forced hospitalization. My state still requires him to threaten us or himself to get help OR have been jailed frequently.


#71

I meant a full blown psychotic epsisode with complete break from shared reality is a medical emergency.

Psychosis happens on a spectrum from zero to five. Pretty much anything four and below is somewhat navigable.

There has not been a day without some level of psychosis since my family member’s first major episode.


#72

I consider psychosis to be internal stimuli and all the behaviors surrounding the response to them. Most of that is under control, so I don’t consider my son to be in active psychosis.

Delusional thinking, and paranoia resulting from those beliefs is something much more persistent. These are not the result of internal stimuli - auditory or visual hallucinations - but are strongly held beliefs that aren’t based on reality. That’s the distinction I make anyway.


#73

My son’s paranoia is a strongly held belief that comes from inside his disordered brain, the same as the auditory or visual hallucinations.

I have read plenty of descriptions that complicate the differences - it was too difficult for me to make sense of them;) I just go with the simple, normal dictionary definition of "a mental disorder characterized by symptoms, such as delusions or hallucinations, that indicate impaired contract with reality. This is not the medical definition by any means.

Someone once told me “psychosis” is only defined by the hearing of voices. Ahhh, can’t see that one being correct, but I do know some books call voices “the hallmark” of scz. For this one, I like the third definition - “any distinguishing feature or characteristic”. Certainly isn’t #1 gold or silver purity, #2 is close “any mark or special indication of genuineness, good quality”.

Show of hands for everyone who is a little tired of consulting dictionaries while trying to read literature to help their family members with mental illnesses?


#74

For me, psychosis is any break with reality - that makes it simple, even though it’s a wide umbrella.


#75

I like it. Anything we can simplify would be helpful.


#76

Maybe no one but us would think this was funny, but it made me smile.

We were watching Live PD today & the cops were looking for this guy who was somewhere on the interstate. He had called home & made some comment about killing people & then eating them. The family had called the police because it had concerned them.

When the cops found him, they were nice enough. The guy was a veteran & had PTSD & sounded a little out of it. He was talking about how disgusted he was with people hurting each other & the war, etc., but there were other things mixed in. They asked him if they could take him to the hospital to get some help and he finally agreed - it helped that one of the officers was a veteran too.

My son, without me making a single comment, said, “yep, he needs to go to the hospital. That’s how people in there talk.” Then, started telling me about some of the stuff people would say in there.

I just let it go and didn’t mention he’d said some things like that at times, since I’ve finally learned my lesson about that, but I couldn’t help but smile at that.

Of course, I’ve also read that people without insight into their own illness can still be very good at pointing out symptoms in other people. But, at least I didn’t have to hear a rant about how the police were violating the guys human rights and how it was illegal to be held in the hospital this time.

On another note, he did tell me yesterday that the Clozapine is giving him some dizzy spells. He’s still at just 200 mg/day and a month from seeing the doctor again, so I told him those symptoms would probably go away & if they didn’t, we should talk to her about letting him take a smaller dose in the morning & a bigger dose at night.

Any advice in that area? Mostly, did the dizziness kind of go away in time?


#77

I do see the humor in that. Once after getting out of the hospital my son remarks, “well let’s face it, there are some crazy people in there.”


#78

Hi @slw. In our experience, the dizziness did slow down. But each time they raised the amount of the drug, it would come back again. Then he would slowly get used to it again. Now after being at 600mg for over 7 months, he is used to it again so only feels dizzy if he tries to stay up too long after taking it. The difference for us is that he takes it all in one shot at 9 pm, so I guess if he is really dizzy, he is sleeping through it.


#79

As a p.s. I do find humor in a lot of things that happen too. It has helped me cope through this nightmare. The other day I told my son that I was planning on going to get some counselling and he looked at me so strangely, then asked me “why would you need to get counselling”? I’m sure in his head that he was thinking " I’m the one who kept getting thrown in the hospital…and you need counselling". Not only doesn’t he have any insight to his own illness, but I think he also has no insight into how it affected anyone else. Anyways, these small things strike me as funny and saves it from being hurtful.


#80

Every now & then, my son apologizes for it being “hard to raise him”, so I guess that’s an acknowledgement.

I frequently explain that everyone has issues that they need help with. Mine appears to be that I need to be in control. So, I’m not sure that he would say much if I finally went to see the therapist I keep promising myself I will go see.

I do have two names in mind to try, but right now, things are calm for the most part & I don’t feel the need.