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Foaming at the mouth while asleep & more


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Clozapine sleep issues!

So, maybe 2 nights ago husband woke me up, and I was lying on my back making noise and must have been moving around too. He was pretty concerned at least by the noise I was making, enough to turn on his lamp to see if I was ok. He said I was literally foaming at the mouth. I was wearing my nasal only CPAP mask, so my mouth was open and free. What could this mean or be (the foaming at the mouth, etc.)? I don’t get how or why I would be foaming at the mouth?

And I fell asleep in the bathroom in the middle of the night, not my finest moment. Then I woke up later in bed and was too out of it to put my CPAP mask back on (It was on the floor). Oops. Husband had to wake me up later to put it on again.

And today I slept through my alarm completely. Like it just timed out. I woke up 2.5 hours later! Lucky I didn’t miss anything important!

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6 minutes ago, Juniper29 said:

Could be pulmonary edema? Idk but get to an ER NOW!

I’m not even sure what that is, but I feel ok physically. And it was minimum 2 days ago. Sorry I’m not trying to sound stubborn I just hate the ER and I don’t know what I’d say when I’m feeling ok. They’d boot me out!

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You can feel OK and still die. I'm not trying to be melodramatic but foaming at the mouth can be a medical emergency. It can mean that there's fluid in your lungs, that your heart is failing, and other similarly serious things. You need to get checked out. Tell them that you were foaming at the mouth in your sleep and they will take you seriously. Even if it turns out to be nothing, you need to be seen.

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1 minute ago, Geek said:

Call the on-call team and report this scary side effect. They can probably help better than an ER if it's related to the clozapine... and if it's not, they'll happily direct you to the ER.

The on call team are case managers. They might know about clozapine but I’m not too certain. 

I’m sorry. I do feel ok physically. I should have said that right away. 

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1 minute ago, Juniper29 said:

You can feel OK and still die. I'm not trying to be melodramatic but foaming at the mouth can be a medical emergency. It can mean that there's fluid in your lungs, that your heart is failing, and other similarly serious things. You need to get checked out. Tell them that you were foaming at the mouth in your sleep and they will take you seriously. Even if it turns out to be nothing, you need to be seen.

Oh my god. I do feel like sometimes I wake up with fluid in my lungs especially when I had been laying on my back or if I wore the full face CPAP mask. But that was probably weeks ago or so. Am I still in trouble?

I hate what clozapine is doing to me physically. I don’t know if it’s worth it at this point. I’m devastated. 

Can I wait and call my pdoc in the morning?

Husband doesn’t get home until at least 10 pm. He is running late. 

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4 minutes ago, Wonderful.Cheese said:

The on call team are case managers. They might know about clozapine but I’m not too certain. 

I’m sorry. I do feel ok physically. I should have said that right away. 

So a minor version of this happened to me when I was new-ish to cloz....I just hadn't learned what was a no no to eat or drink when close to bed. Obvi I'm not trying to minimize the issue and I think I'd at least try the on call team but I think it can happen for some people who get cursed with the really bad drooling...but I'd definetly check to make sure no one is concerned that it could cause a problem...I lestend it with high dose Benadryl at night but I also wouldn't do that w/o doc consult 

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13 minutes ago, Wonderful.Cheese said:

The on call team are case managers. They might know about clozapine but I’m not too certain. 

I’m sorry. I do feel ok physically. I should have said that right away. 

They'll know enough that they will either call the on-call pdoc (there is one, though the number may not be available to patients) for more review or tell you to go to the ER. That's literally their job as the on-call team. They have access to more resources than you do.

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6 minutes ago, Iceberg said:

So a minor version of this happened to me when I was new-ish to cloz....I just hadn't learned what was a no no to eat or drink when close to bed. Obvi I'm not trying to minimize the issue and I think I'd at least try the on call team but I think it can happen for some people who get cursed with the really bad drooling...but I'd definetly check to make sure no one is concerned that it could cause a problem...I lestend it with high dose Benadryl at night but I also wouldn't do that w/o doc consult 

I’m nervous that I’m going to fail on clozapine. My pdoc’s nurse was supposed to call me back today about increasing the drool pill but never did. 

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1 minute ago, Wonderful.Cheese said:

Oh my god. I do feel like sometimes I wake up with fluid in my lungs especially when I had been laying on my back or if I wore the full face CPAP mask. But that was probably weeks ago or so. Am I still in trouble?

I hate what clozapine is doing to me physically. I don’t know if it’s worth it at this point. I’m devastated. 

Can I wait and call my pdoc in the morning?

I don't know enough to be able to answer that question. My son has a history of respiratory issues and I just know if he were having symptoms like you've been having, I would have taken him to the ER already, quite possibly in the middle of the night. We've had several emergencies and none of them "felt" like emergencies if you know what I mean? Nothing dramatic happened, it was just "Oh, his chest is pulling in, that's a sign of respiratory distress. Guess we are going to the ER."

Do you think you'd even be able to reach your pdoc if you call? They haven't been very responsive. You could try the on call team and see what they say.

Im so sorry you're going through this. I hate to sound hysterical but I'm really worried about you.

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30 minutes ago, Wonderful.Cheese said:

I’m sorry I am hardly stay awake. Maybe I’ll, pass on the clozapine tonight. Call pdoc in the morning 

If by this you are saying that you are going to skip taking your clozapine,  I wouldn't skip it.  Please take it tonight.

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2 hours ago, Wonderful.Cheese said:

I’m nervous that I’m going to fail on clozapine. My pdoc’s nurse was supposed to call me back today about increasing the drool pill but never did. 

The drooling sucks but is somewhat common so I don't that that alone would constitute a fail. Maybe you could pause on the dose a bit....although many say it's not super dose dependant 

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Yeah I think your pdoc is incompetent... Very strictly set in her ways: "it's my way or no way." I can't stand doctors like that. 

It definitely sounds like she is ABSOLUTELY FUCKING CLUELESS as to what she's doing with your antipsychotics.

Pardon my rant...  -_- 

I hope you get the relief and PROPER TREATMENT that your so desperately need.

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Good morning all. I did end up taking clozapine last night. Thankfully no super weird breathing or anything like that. As far as I know. 

@Iceberg I believe the plan is to increase the clozapine on Wednesday night to 350 mg from the 300 mg I have been taking. I hope nothing bad happens. I feel like I just got used to this dose!

@Gatorgirl Yes, I am on 12 meds plus 2 as needed ones. I haven’t really desperately needed the as needed ones at all since starting clozapine, however. I’ve been trying to avoid them so I can get off of them (the as needed are: lunesta - I sleep good with clozapine so no need for lunesta, and vistaril - clozapine has reduced my anxiety by a tiny bit so no dire need for vistaril lately).

And I’d like to get off of another AAP ASAP (I’m on abilify, seroquel XR, and clozapine still...my pdoc made it sound like I should remain on seroquel XR and dump abilify eventually, hopefully soon. Ugh).  And some of those other meds I’m on are for physical medical issues like my thyroid illness Hashimotos (levothyroxine) or sleep disorders (nuvigil) and birth control (yaz). 

@mikl_pls rant away sir! I am hesitant to ask for a different pdoc though. The other one I had before this current one was hellish. “Hi, *ignores me sobbing in mental pain in his office*, ok bye see you in 3 months!” I can’t go back to that. My current pdoc is nice and listens to me. She does have the tendency to over medicate I know. But she was willing to try something different when my old pdoc just left me hanging sobbing in his office every 3 months with no med changes at all no matter how sick I was. Psychotic, depressed, or manic. He didn’t care. It was always, “ok see you in 3 months”. No med adjustments. I don’t know how I survived. I could have easily committed suicide. But I miraculously made it through after begging for a new pdoc. And that’s how I got my current pdoc. I’m thankful for current pdoc. I know my current pdoc isn’t the best but she is better than my old one by sooooooo much. I can’t even describe it. 

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