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I drool so much on Clozapine. I wear a full face mask as that was most comfortable to me when picking out masks for my CPAP machine. 

I wake up nightly to pee and empty the hose and mask of gobs of drool. Yuck. Then I have to half asleep/extremely sedated wash them out because they smell bad from said drool.

I am going to call pdoc and my sleep Dr but I wonder if switching to a nose only mask is an option for me. Then I can drool away on a towel covered pillow. 

Oh and I wake up coughing. This is new. Am I choking on my own drool in my sleep? Is this *bad*?

Anyone have any other tips with Clozapine and excessive drooling?

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Posted (edited)
44 minutes ago, Wonderful.Cheese said:

Anyone have any other tips with Clozapine and excessive drooling?

Excessive drooling is a fairly common side effect of Clozapine.

If it becomes a bad problem there are some medications that could help.....Definitely tell pdoc about it.

Here's a decent article: https://www.medscape.org/viewarticle/551366

Edited by CrazyRedhead

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24 minutes ago, Wonderful.Cheese said:

I drool so much on Clozapine. I wear a full face mask as that was most comfortable to me when picking out masks for my CPAP machine. 

I wake up nightly to pee and empty the hose and mask of gobs of drool. Yuck. Then I have to half asleep/extremely sedated wash them out because they smell bad from said drool.

I am going to call pdoc and my sleep Dr but I wonder if switching to a nose only mask is an option for me. Then I can drool away on a towel covered pillow. 

Oh and I wake up coughing. This is new. Am I choking on my own drool in my sleep? Is this *bad*?

Anyone have any other tips with Clozapine and excessive drooling?

Here's a link that might have some useful information.

https://www.pharmacytimes.com/publications/health-system-edition/2012/august2012/psychiatry-clozapine-induced-sialorrhea

Quote

Sialorrhea, or excessive drooling, is one of clozapine's most common adverse effects, occurring in as many as 30% to 80% of patients. Clozapine-induced Sialorrhea (CIS) is not generally thought to be dose-related and can occur anytime throughout the day. Complications from CIS can range from the uncomfortable (i.e., social awkwardness and speech difficulties) to the potentially life-threatening (i.e., parotiditis, choking, and aspiration). The 2 leading theories behind the mechanism of CIS are, 1) potent agonism at muscarinic M4 receptors and, 2) blockade of α2 adrenergic receptors, which both lead to an increase in salivary flow.

Although several pharmacotherapeutic strategies for the treatment of CIS have been employed, little exists in the way of convincing clinical evidence to help guide drug selection. Historical treatments in the US have included systemic antimuscarinic drugs (i.e., benztropine, glycopyrrolate, trihexyphenidyl, and amitriptyline), and α-adrenergic agents (clonidine, guanfacine, and terazosin); however, these drugs are often associated with systemic side effects that can decrease tolerability and treatment adherence. Two popular treatments given their ease of administration, tolerability, and low-risk of systemic side effects are the non-selective, muscarinic receptor antagonists atropine sulfate and ipratropium bromide administered sublingually. Atropine is usually administered as 1 to 2 drops of the 1% ophthalmic solution sublingually 2 to 3 times daily. Ipratropium bromide is usually administered as 1 to 2 sprays of the 0.03% nasal spray formulation sublingually at bedtime, and then increased to 2 to 3 times daily as needed.

 

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Thank you both for the articles @CrazyRedhead and @mikl_pls

I am having trouble getting through to my pdoc’s nurse. I’m out of seroquel xr and don’t have any for tomorrow either. The meds were supposedly delivered to them but she won’t call me back! I was missing two nights from this weeks med box due to late ordering on their part. So I guess cold turkey no seroquel xr for 2 joyous nights. And the thing is I’m not 100% sure that they even have the meds because they always used to be sent to my home.

Anyway, I probably can’t get any info to my pdoc until I actually see her on Wednesday is my point. But I will bring up this information you guys gave me. So thank you again. 

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I just wonder if the coughing is choking. I don’t even sleep on my back! I’m on my side! How awful is that!

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Posted (edited)

I also have drooling and coughing! There has to be a connection. It's so gross. This drug better damn make itself worth the while. 

Edited by aura

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13 hours ago, aura said:

I also have drooling and coughing! There has to be a connection. It's so gross. This drug better damn make itself worth the while. 

Agreed. Totally and completely! 

For example, just last night I woke up coughing and had to get up 3 times last night to clean out my CPAP mask from a puddle of drool. Gross. Husband made it so the hose that connects to the CPAP mask and machine is more or less vertical (on top of our headboard on our bed) so at least the drool mostly stays out of that now. 

I just can’t believe how much I drool. It’s worst at night after I take my dose and sleep. Daytime a little bit bad too but at least I’m awake at that point!

Otherwise I have no side effects that I am aware of. I’m up to 100 mg now and I see pdoc tomorrow. No extreme hunger or weight gain yet. Sedation, but at bedtime only after I take it. I sleep around 10 hours. Maybe once I’m off some of the other 3 AAP’s I’m on I’ll be able to sleep less, like 8 hours. Not sure though. My heart thing they are monitoring with blood work is normal. I think my WBC is normal. This time it was above the normal range zone. ????? I don’t know what that’s about. 

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14 hours ago, aura said:

I also have drooling and coughing! There has to be a connection. It's so gross. This drug better damn make itself worth the while. 

There is a connection!

Clozapine is a potent muscarinic M4 receptor agonist, and its active metabolite, N-desmethylclozapine, is a muscarinic M1 rececptor agonist.

At all other muscarinic acetylcholine receptors, it is an antagonist, which would normally produce the opposite side effect: dry mouth.

The article I posted above mentions some treatments to possibly ameliorate this side effect, hopefully!

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23 hours ago, mikl_pls said:

There is a connection!

Clozapine is a potent muscarinic M4 receptor agonist, and its active metabolite, N-desmethylclozapine, is a muscarinic M1 rececptor agonist.

At all other muscarinic acetylcholine receptors, it is an antagonist, which would normally produce the opposite side effect: dry mouth.

The article I posted above mentions some treatments to possibly ameliorate this side effect, hopefully!

 

17 hours ago, Iceberg said:

Yeah I had no luck with anything although I didn't try every option 

So I’m just speculating, but the coughing is due to the over abundance of saliva and it somehow gets to my lungs causing me to choke almost? Because I’m too sedated and asleep to swallow properly or something? And coughing gets the fluid off my lungs?

Last night was bad. I woke up and could not barely stop coughing and my mask was full of drool. Then I slept the rest of the night but when my alarm went off again, mask was so full of drool again! Along with the hose a bit too. 

I am worried about choking to death kinda. I see pdoc today. I will ask her about this for sure along with your guys suggestions. 

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18 hours ago, Wonderful.Cheese said:

 

So I’m just speculating, but the coughing is due to the over abundance of saliva and it somehow gets to my lungs causing me to choke almost? Because I’m too sedated and asleep to swallow properly or something? And coughing gets the fluid off my lungs?

Last night was bad. I woke up and could not barely stop coughing and my mask was full of drool. Then I slept the rest of the night but when my alarm went off again, mask was so full of drool again! Along with the hose a bit too. 

I am worried about choking to death kinda. I see pdoc today. I will ask her about this for sure along with your guys suggestions. 

Yeah, this is scary... Definitely print out that article I posted and bring it to your pdoc... Or at least the section I quoted. I would be terrified!

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@mikl_pls   And @Iceberg

My pdoc mentioned 2 meds for stopping the drooling. Benzotropine (which I believe is cogentin) and something like glomipermide (sp.). I’m not sure about the second one beginning with a G. When I try to search what it sounded like a diabetes med pops up (glumiperide?)  on google and it says it can cause drooling in people!?!?! I’m so confused.

I will blog but she didn’t want to start anything now, she wanted to wait and see. Which is insane IMO. I told her I was waking up choking and coughing so much and that my CPAP mask was filled with drool. But I “can call in between appointment times to try either one of those meds if it gets worse.” I’m pretty sure it’s already bad. But whatever. Plus phone anxiety. And the nurses never call back anyway.

Any idea what the second med the G med would be?

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34 minutes ago, Wonderful.Cheese said:

@mikl_pls   And @Iceberg

My pdoc mentioned 2 meds for stopping the drooling. Benzotropine (which I believe is cogentin) and something like glomipermide (sp.). I’m not sure about the second one beginning with a G. When I try to search what it sounded like a diabetes med pops up (glumiperide?)  on google and it says it can cause drooling in people!?!?! I’m so confused.

I will blog but she didn’t want to start anything now, she wanted to wait and see. Which is insane IMO. I told her I was waking up choking and coughing so much and that my CPAP mask was filled with drool. But I “can call in between appointment times to try either one of those meds if it gets worse.” I’m pretty sure it’s already bad. But whatever. Plus phone anxiety. And the nurses never call back anyway.

Any idea what the second med the G med would be?

She might have mentioned glycopyrrolate, as glimepiride is indeed a diabetes drug. Glycopyrrolate is an anticholinergic drug like benztropine (which is as you said Cogentin) that can be used for sialorrhea (I believe both are mentioned in the article).

WHY WOULD SHE WANT TO WAIT?! I would call like, the next day and be like, "yeah, it's worse, she said to call if it's worse, gimme one of those meds..." lol. Omg, I so understand phone anxiety, I haaaate making phone calls about certain things.

I do believe the second "g" medicine is glycopyrrolate. Brand names are Robinul (1 mg tab) and Robiul Forte (2 mg tab). If you just call it "Robinul" then they will know what you're talking about most likely.

I'm not sure which is a more potent anticholinergic, but I know that Cogentin is a very potent anticholinergic, and if you take it more than a few days at a time regularly, you will get an insatiably dry mouth (that you can't get rid of by drinking water), blurry up-close vision (you will have to get reading glasses), possibly urinary retention, and, in my case, possibly hallucinations and delirium set in after about 2-3 weeks of taking it. I was taking it for hyperhidrosis, and good lord at the side effects! I don't see how people take this medicine regularly, especially older patients who take it for Parkinson's disease, who are more susceptible to anticholinergic side effects and who are on higher doses! Just a little warning about the side effects of Cogentin.

I think Robinul (glycopyrrolate) is peripherally selective, meaning that it doesn't act on the central nervous system, but don't quote me on that! That means that you wouldn't get the hallucinations and delirium, or there would be less likely of a chance to get that anyway... But still, don't quote me on that.

I think your pdoc would be the one to make the decision as to which medicine you should take for the sialorrhea (excess drooling).

EDIT: Just checked and yes, glycopyrrolate (Robinul) has "a very limited effect" the CNS.

Edited by mikl_pls
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1 hour ago, Wonderful.Cheese said:

 

26 minutes ago, mikl_pls said:

 WHY WOULD SHE WANT TO WAIT?!

I will blog but she didn’t want to start anything now, she wanted to wait and see. Which is insane IMO. 

I agree, I think something to help the drooling should be given NOW, since it's causing to you to cough and choke  in your sleep, which could be dangerous.......

Personally, I think you should start calling her ASAP and let her know it's really bad NOW, and you NEED something, and then keep calling until you get some results.

I am concerned that she didn't give you anything yesterday....

Edited by CrazyRedhead

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Thank you guys. I will call her nurse tomorrow and emphasize that it is bad and I need something now. It's gotten to the point that I don't want to go to bed anymore. I wonder if I'll wake up or choke to death. I still feel like I can't catch a deep breath .

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Get this. I called and actually got the nurse on the phone! She actually got the med called in this morning. I now have a months supply of glycopyrrolate. I am in shock that it worked out that fast. Weird. 

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3 hours ago, Wonderful.Cheese said:

Get this. I called and actually got the nurse on the phone! She actually got the med called in this morning. I now have a months supply of glycopyrrolate. I am in shock that it worked out that fast. Weird. 

Yay for small or even big victories!

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The glycopyrrolate is working I think? Instead of getting up like 3 times a night to empty out my CPAP mask full of drool and clean the mask and hose, I was able to sleep through the night with it only filling up once (when I got up for the day). I mean it was full at the time I woke up for the day, but it wasn’t full like 3 times a night. Like @DammitJanet said yay for small victories!

I did wake up coughing I remember, pretty bad. But that was brief I think. Must have choked a bit one time.

I also turned the humidity off in my CPAP. No need for more moisture. 

Well, we’ll see how tonight goes, I guess. I hate adding a pill just to be able to take clozapine but I don’t know what else to do.

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53 minutes ago, Wonderful.Cheese said:

The glycopyrrolate is working I think? Instead of getting up like 3 times a night to empty out my CPAP mask full of drool and clean the mask and hose, I was able to sleep through the night with it only filling up once (when I got up for the day). I mean it was full at the time I woke up for the day, but it wasn’t full like 3 times a night. Like @DammitJanet said yay for small victories!

I did wake up coughing I remember, pretty bad. But that was brief I think. Must have choked a bit one time.

I also turned the humidity off in my CPAP. No need for more moisture. 

Well, we’ll see how tonight goes, I guess. I hate adding a pill just to be able to take clozapine but I don’t know what else to do.

What dosage of the glycopyrrolate did she prescribe you and how often can you take it?

As an antisialogogue (to prevent salivation), it can be taken 1-2 mg 2-3 times per day up to a max of 8 mg/day according to Epocrates.

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1 hour ago, mikl_pls said:

What dosage of the glycopyrrolate did she prescribe you and how often can you take it?

As an antisialogogue (to prevent salivation), it can be taken 1-2 mg 2-3 times per day up to a max of 8 mg/day according to Epocrates.

I believe it is just 1 mg at bedtime for now. That is what the pill bottle says anyway.

During the day the excessive drooling is not extreme or severe like the nighttime is. I asked and pdoc said that is because she dosed the clozapine all at nighttime instead of twice daily. She also just dosed it all at nighttime to avoid the daytime sedation tha could possibly occur. 

I’m still having the coughing though and it’s way worse during the night. It trickles into the daytime a little bit too. I feel sort of like an elephant is stepping on my chest. I think I’m just on too many meds...too sedated maybe? It is hard to catch my breath, like a nice full and deep breath. But pdoc doesn’t want to cut back on any of the other meds yet. 

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The glycopyrrolate seems to be working still. I can sleep through the night! Miraculous! 

I don’t know if I dare put my CPAP humidity back on or not though. Hmmm. 

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2 hours ago, Wonderful.Cheese said:

The glycopyrrolate seems to be working still. I can sleep through the night! Miraculous! 

I don’t know if I dare put my CPAP humidity back on or not though. Hmmm. 

I'm so happy to hear this! :D You have a lot of room to go up on the glycopyrrolate if you need to. But if you do, you might have stuff like not sweating enough which could lead to overheating in hot weather and stuff like that, plus blurry vision, etc., etc. (other anticholinergic symptoms)

I wish you continued good luck!

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