CPAP and coughing up blood

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Jon_Danger
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CPAP and coughing up blood

Post by Jon_Danger » Tue Jan 24, 2023 10:29 am

Hi, I am in my mid thirties, been using the cpap for 6 years now. 2 years ago, I woke up with a wet throat, crackling in my chest, and coughed up a not insignificant amount of blood.

About 10-12 times a year this happens, and I am at the end of my rope with working with doctors on this. ENT scope, endoscopy with lung lavage, CT scans. All clear, no signs of cause.

Each specialist is blaming a different part of my body for this, and they each find nothing. It is frustrating. It is like whack a mole, moving from specialist to specialist. Working with the CPAP doctor is very frustrating as well, because they just flat out said CPAP therapy can't be the cause. It HAS to be related, this ONLY happens immediately after waking up, and one time while shifting side to side in the middle of the night.

I use a nasal mask, added chinstrap to keep my mouth closed, humidity as high as possible.

I want to point out, this literally only happens during or immediately after cpap use. It happened once after a 1 hour nap. I have started logging instances, to try to find a pattern, and I can only think of 1. Lying on my back. There are multiple instances of this happening when I know I shifted to my back (normally a side sleeper). But, since this will happen once and then not again for sometimes 2-3 months, sometimes 2-3 weeks, it is hard to find a pattern.

I guess I am asking the forum for advice? Thoughts? Things to bring up with my doctors? Something for the specialist to look at?

It is frustrating because it happens, not all of the time, started about 4 years into therapy, and every single checkup I have has found nothing. Thousands of dollars at the doctor for them to say "Looks normal" Nobody seems to know what is going on, but it freaks me out every time and contributes to my anxiety, making sleeping more difficult.
Last edited by Jon_Danger on Tue Jan 24, 2023 10:52 am, edited 1 time in total.

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chunkyfrog
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Re: CPAP and coughing up blood

Post by chunkyfrog » Tue Jan 24, 2023 10:51 am

If your office doctors are clueless, time to try something different.
Next time, go to the ER.
New eyes, and new people , with a bit more pressure.
Besides, it will cost your insurance more.

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ozij
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Re: CPAP and coughing up blood

Post by ozij » Tue Jan 24, 2023 10:53 am

Doesn't it freak out any of your doctors?
chunkyfrog wrote:
Tue Jan 24, 2023 10:51 am
Next time, go to the ER.
The minute it happens. Bloody tissues and all.

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Jon_Danger
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Re: CPAP and coughing up blood

Post by Jon_Danger » Tue Jan 24, 2023 10:55 am

Doctor has suggested ER to get faster scheduling on tests, but I don't totally feel like paying the outrageous ER fees for them to just look at my medical history and charts and say "looks normal", with me out several thousand dollars, with nobody the wiser. Of course, it can happen tomorrow, and then nothing for 3 months. And I think it has gone away, and it happens again.

I also posted this, because I have seen very few instances of people talking about CPAP (or APAP) therapy causing hemoptysis, though it definitely appears through searching it can/does happen to some people. Hopefully this thread can also be a resource for other searching the web frustrated.

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Jon_Danger
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Re: CPAP and coughing up blood

Post by Jon_Danger » Tue Jan 24, 2023 10:56 am

chunkyfrog wrote:
Tue Jan 24, 2023 10:51 am
Next time, go to the ER.
I mean, this is what I did the first time, where they did an X-ray, and found nothing. Referred me to specialists, who over the course of 6 months did CT scan, ENT scope, endoscopy, the works, also found nothing.

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chunkyfrog
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Re: CPAP and coughing up blood

Post by chunkyfrog » Tue Jan 24, 2023 10:57 am

Yes. ER personnel like excitement.
The bullfrog nicked a couple fingers cleaning a chainsaw.(OFF)
Showing up with a half roll of TP wrapped around his hand--they saw him right away.

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Jon_Danger
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Re: CPAP and coughing up blood

Post by Jon_Danger » Tue Jan 24, 2023 10:59 am

RIght now, I have a 2nd endoscopy scheduled with a gastro doctor, to look at my throat/esophagus again, as well as my stomach. I have always had reflux issues (on prescription meds for this) and wondering if maybe something there is the blame? First time was with a pulmonary doctor, who focused heavily on my lungs, found nothing in CT or the endoscopy.

I am not trying to be dismissive about the ER thing, happy that people are looking at this and giving advice, but I feel like that is an expensive route I have already gone down. (when this happened initially)

Funny note too. I had a very small amount of blood in my spit the morning I had the first lung endoscopy. I was like GREAT! They might find something. They found nothing.

They did note that my nasal passages were very narrow and inflamed, and could not push the scope through that way. Had to route the endoscope through my mouth.

Of course... the ENT I saw a month earlier made no mention of this, or any abnormalities. I do sneeze a lot and have a stuffy nose quite often, but it hasn't been a problem with my CPAP therapy. When I am stuffed up the CPAP seems to physically clear my congestion and I can sleep well. But... I also never have nosebleeds out the front of my nose. They have thrown around the term "posterior nosebleed" but I am on the max humidity my system can handle (bought a hose wrap too). I have a humidifier next to the bed, etc. I can't imagine if this is the cause there is anything more I can do to prevent it.

This is the frustrating part, each specialist is saying it can't be happening in their area of expertise of my body, and then I go to another doctor who says it must be happening somewhere else, already checked by another doctor as "clear".

Or maybe, is this just something that will always be happening, and there is no serious cause? Should I look into CPAP alternatives? Different masks? The CPAP doctor just flat out said, it isn't the CPAP therapy causing it, which is just wrong. It has to be related, as it ONLY happens after using my machine.

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chunkyfrog
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Re: CPAP and coughing up blood

Post by chunkyfrog » Tue Jan 24, 2023 11:24 am

Since you mention reflux, ask for a referral to an oncologist.
Say you are worried about cancer.
Maybe the liability alarm will go off.

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Re: CPAP and coughing up blood

Post by Janknitz » Tue Jan 24, 2023 2:53 pm

You say you have the humidity "as high as possible". Is it possible that too much humidity is causing sinusitis, and if there's a lot of irritation and bleeding in the back of the nasal passages, it could be causing you to cough it up when you lie on your back because the drip hits just the right place in your throat to cause a cough.

Have you talked to an ent about the irritated nasal passages? Perhaps a steroid nasal spray and even a short break from CPAP to let everything heal up. That would be my first suggestion, and then addressing the reflux. It's possible to aspirate reflux into the lungs which causes very hard coughing, and can definitely cause small blood vessels to burst and bleed.
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Julie
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Re: CPAP and coughing up blood

Post by Julie » Tue Jan 24, 2023 2:58 pm

Not sure I'd 'diagnose' anything here... do think he needs an MD asap though however obviously Cpap-related it may seem.

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Re: CPAP and coughing up blood

Post by ChicagoGranny » Tue Jan 24, 2023 4:45 pm

Jon_Danger wrote:
Tue Jan 24, 2023 10:59 am
I am on the max humidity my system can handle (bought a hose wrap too). I have a humidifier next to the bed, etc.
A common newbie mistake. Too much humidity causes nasal congestion in some people.

The idea of a CPAP humidifier is to prevent the drying of the nasal passages.
Experimentation is commonly needed to find the lowest humidifier setting that prevents drying.

If I were in your position, my first experiment would be to turn off the bedside humidifier. If that gives good results, turn the CPAP humidifier setting down a notch each night and observe what happens.

Do you live in an arid climate? Are there other factors that make your bedroom extremely dry?

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Jon_Danger
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Re: CPAP and coughing up blood

Post by Jon_Danger » Tue Jan 24, 2023 6:00 pm

Thanks for the tip! Maybe the high humidity is overkill, I tend to crank it up in the winter months to compensate for air being drier. I do wake up every morning congested though.

I truly believe it is something sinus/nasal area related, because the coughing up blood happens after I wake up and move around, I feel like I need to clear my throat. Like, sitting up is causing gravity to move the nosebleed into my throat.

I bought a hygrometer to put on my bedside table and the humidity is around 50% in the room.

The possibility of reflux and aspiration of stomach acid is why I am seeing a gastrointestinal MD next month, it is an avenue we have not gone down yet, though CT scan showed no abnormalities in 2021. The endoscopy I had was lung focused.

As for "needs an MD" I have seen doctors for 2 years with no help or change in symptoms. I am seeing doctors for this, but their advice has been, we don't see anything medically wrong with you, deal with it. They have been unsuccessful at diagnosing me for 2 years, and I am looking for advice for things to try out or ask the doctors about.

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Re: CPAP and coughing up blood

Post by palerider » Tue Jan 24, 2023 7:17 pm

Jon_Danger wrote:
Tue Jan 24, 2023 10:29 am
I use a nasal mask, added chinstrap to keep my mouth closed, humidity as high as possible.
Chin straps *do not* prevent mouth breathing/leaks. they may keep your jaw closed, but they cannot keep your mouth closed.
Try tape.

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Jon_Danger
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Re: CPAP and coughing up blood

Post by Jon_Danger » Tue Jan 24, 2023 10:03 pm

Thanks for the tip. I have found the chinstrap works mostly to keep me from having a dry mouth, but I will look into tape.

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Re: CPAP and coughing up blood

Post by colomom » Tue Jan 24, 2023 10:32 pm

Jon_Danger wrote:
Tue Jan 24, 2023 10:59 am
RIght now, I have a 2nd endoscopy scheduled with a gastro doctor, to look at my throat/esophagus again, as well as my stomach. I have always had reflux issues (on prescription meds for this) and wondering if maybe something there is the blame? First time was with a pulmonary doctor, who focused heavily on my lungs, found nothing in CT or the endoscopy.

I am not trying to be dismissive about the ER thing, happy that people are looking at this and giving advice, but I feel like that is an expensive route I have already gone down. (when this happened initially)

Funny note too. I had a very small amount of blood in my spit the morning I had the first lung endoscopy. I was like GREAT! They might find something. They found nothing.

They did note that my nasal passages were very narrow and inflamed, and could not push the scope through that way. Had to route the endoscope through my mouth.

Of course... the ENT I saw a month earlier made no mention of this, or any abnormalities. I do sneeze a lot and have a stuffy nose quite often, but it hasn't been a problem with my CPAP therapy. When I am stuffed up the CPAP seems to physically clear my congestion and I can sleep well. But... I also never have nosebleeds out the front of my nose. They have thrown around the term "posterior nosebleed" but I am on the max humidity my system can handle (bought a hose wrap too). I have a humidifier next to the bed, etc. I can't imagine if this is the cause there is anything more I can do to prevent it.

This is the frustrating part, each specialist is saying it can't be happening in their area of expertise of my body, and then I go to another doctor who says it must be happening somewhere else, already checked by another doctor as "clear".

Or maybe, is this just something that will always be happening, and there is no serious cause? Should I look into CPAP alternatives? Different masks? The CPAP doctor just flat out said, it isn't the CPAP therapy causing it, which is just wrong. It has to be related, as it ONLY happens after using my machine.
Antidotal, but my son often suffers from similar issues. The first round scared me silly, he vomited up a huge amount of blood. Mt son’s problems stem from posterior nose bleeds,
which you say the doctors may suspect.

If you suspect posterior nose bleeds are the cause a few things you could try are:
-further increasing the overall humidity in your house (it can be rough on your nose to go from warm humidified CPAP air to dry room air so if you live in a dry climate increasing the humidity in your whole home could help)
-use a saline gel in your nostrils to keep them moist
-baby your nose (no hard nose blowing)
-Afrin (it can help with nose bleeds but shouldn’t be used long term)
-If all else fails an ENT can cauterize the bleed
-If all else fails and your OSA is mild you can take a brief break from your cpap to allow your nose time to heal.

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