[CPAP] Can't get to the bottom of my congestion.

[Yeliad]

Hey all, I previously made a thread about congestion I can't seem to solve. Making a new one since I tried a fair few things since then and wasn't too thorough the last time.

Over the past five months of using my CPAP since getting diagnosed, I have been unable to fall asleep wearing it a single time unaided because of congestion. I am unable to get out of bed w/o medication, cannot go to school or hold a job, depressed, suicidal, etc. The whole shebang. I've been this way for most of my life (in terms of having awful sleep quality) and it has gotten worse over the past five years or so.

So anyways, my experience with the CPAP since November is that every night is putting the mask on -> congestion -> I breathe harder -> heart rate goes up and I can't fall asleep. 

I figure it would be easier to just bullet point out all of the things I have tried that have not solved the issue:

1. Messing With Humidity/Temperature: Any humidity/temperature combination will still cause congestion and force me to remove the mask. I've tried all sorts of combinations including completely removing humidity. I wrote each possible temperature/humidity combination down on a whiteboard and tried all of them successively, all of them cause congestion. I'm pretty sure the humidifier is working as I can see bubbles over the heat plate when I breathe. The heated tube definitely works. I use distilled water.
   
2. Cleaning: Cleaned all parts several times with warm water/a bit of dish soap.
   
3. Addressing Allergies: I have what was described as a very minor cat allergy (and a cat), so I cleaned/vacuumed everywhere in my room. Bought mattress and pillow allergy covers. Bought HEPA filter and it is running all of the time. Don't let the cat sleep with me anymore and she is never allowed in the room from the point i cleaned it. Washed all of my sheets and the like. I have less hay fever in bed now which is great, but it doesn't solve the CPAP congestion.
   
4. Medication Side Effects: I have a 20mg Adderall prescription for the day as otherwise I am unable to leave my bed. I also alternate between taking Quetiapine and Zolpidem to fall asleep wearing the CPAP. Since I found all of these can cause congestion one way or another (I especially noticed the rebound from Adderall), I quit all of those for a week and then tried wearing the mask after withdrawal ended. Congestion still did not go away on a night with no medication whatsoever.
   
5. Masks: I have tried the Dreamwear nasal cushion, P30i, F30i, and now the N20. All of them cause the same congestion. Tried loose, tight, etc. Wearing the F30i was impossible to fall asleep with (like the other nasal masks) without brute-forcing myself asleep with Zolpidem, and then I would simply ingest a bunch of air through my mouth and wake up the next day feeling awful and my nose blocked. 
   
6. Trying Accessories/Products/Medications: Tried nasal strips, saline rinse, saline gel, trialed two months Flonase and Azelastine, and Afrin. The Afrin is the only thing that can nuh-uh the congestion away, but from what I recall I still get inflamed and the mask starts itching incredibly bad regardless so it isn't really a solution. Machine is below my mattress and hose is elevated with a pole. I tried mouth tape/chin strap/cervical collar all in combination and in isolation (all of this without the CPAP), didn't sleep well. Tried sleeping on a wedge pillow too.
   
7. EPR: doesn't do anything.
   
8. Pressure: doesn't make a difference.
   
9. Talking With Doctors: Got an ENT referral, they stuck a camera up my nose and told me there was no problem from what they could tell. My primary care doctor got me an inhalant allergy test and I was allergic to nothing except a very minor cat dander allergy. My sleep doctor has turned into a video game character that loops their dialogue and keeps suggesting things I have already tried like varying humidity. I'm set to get a Temporomandibular Device in a month or so with another doctor so maybe that will help.
   

That's everything I could think of that I tried for now. Wondering if anyone here has had experience with a similar situation. Thanks for reading.

[WakeUpTime]

I'm not familiar with the "Inhalant Allergy Test".
Does it also test for things not inhaled, like latex, etc.?
If not, maybe get one of those fast instant prick-board tests.
You want to rule out food types, greenery, etc.

Probably won't help much but you've tried the premium machine filters right?
I use them. I stuck to the ResMed brand too.

While lying in bed without CPAP, I would often get instantly congested. I'm not sure how it got resolved. My case is likely different from yours. I just make sure that sheets and blankets are washed more frequently. I assume you use a protective mattress cover (and pillow covers).

I had a bad heated hose once that made my nose crazy congested. I tried cleaning everything. Then I replaced the hose. Problem was solved.

I'm not an expert. Just grasping at straws. So many factors.

You could also consider trying a night away from home (relative, hotel). Problem still exist? If not, one of many environmental differences.

[kwhenrykerr]

Most of the time I am a mouth breather. Nose closes up. If you find an answer I would like to hear it.

[Yeliad]

I'm not familiar with the "Inhalant Allergy Test".

Does it also test for things not inhaled, like latex, etc.?

They just take some of your blood and can tell if something you inhale can cause allergies. Also called an inhalant panel I think. I assume you are referring to an allergic reaction to the mask material on the latex point, but I'm totally fine wearing the mask without any air coming out of it. Still some congestion but it's not as aggravated.

Probably won't help much but you've tried the premium machine filters right?

I use them. I stuck to the ResMed brand too.

Nope, have not tried them. For what it's worth I have had the problem day one from when the machine's HEPA filter was brand new.

While lying in bed without CPAP, I would often get instantly congested. I'm not sure how it got resolved. My case is likely different from yours. I just make sure that sheets and blankets are washed more frequently. I assume you use a protective mattress cover (and pillow covers).

I have had the same experience many times before yeah. I also get hard to notice moderate congestion a lot while standing up/sitting. Sort of feels like someone is lightly pinching my nose, and the sensation that something is lodged in there. It becomes night and day noticeable after an intense workout or taking a stimulant.

Yeah, I deep cleaned my room and got allergy covers for everything + a filter running all the time. Keep the cat out, no difference in congestion tho.

You could also consider trying a night away from home (relative, hotel). Problem still exist? If not, one of many environmental differences.

Unfortunately it seems to happen everywhere, I recall being super super tired and congested even when visiting friends' houses or going on trips to Hawaii.

Thanks for replying.

[Anewser]

(It's my very first message on this forum)
I have the same problem, which is a pure atrocity despite using CPAP. Just like you, I can't sleep. It's impossible to work or do anything of my life (I still live with my parents, even though I'm 33 years old).

In my case, it's always the same thing: one of my nostrils gets alternately blocked when lying down (left or right). It always clears when I stand up and walk for a few minutes. But it starts again when I lie down again. I have read many posts on this topic, and many, many people experience the same hell with or without CPAP.

I've seen three ENT specialists with three nasoscopies +1 sinus scan + 1 endoscopy under induced sleep = perfect and clear sinuses. I've also seen a good number of specialists to get a diagnosis for my symptoms.

Of course, my nostrils have never been blocked during these exams since I never stayed lying down long enough, and the endoscopy only lasts three ridiculous minutes. The endoscopy did show that my apneas are due to a large base of the tongue that directly closes my trachea (I don't snore at all, unlike many patients).

Unlike you, I don't have any allergies. However, I have a HαT (hereditary alpha-tryptasemia syndrome) syndrome that adds other severe symptoms. It's a recently discovered genetic autoimmune disease that causes an increase in tryptase in the blood. This disease causes the same symptoms as SAMA/mastocytosis, and I have seen that rhinitis is very common in these syndromes. My hypothesis is that the tryptase makes my turbinates more sensitive, causing them to swell due to my constant pseudo-inflammatory state. I would like to point out that I have no nasal pain, and my nose never runs.

Other posts on the internet have hypothesized that the blocked nose (if no ENT cause is found) is caused by the back of the tongue continuing to press against the back of the soft palate = it puts pressure on the sinuses = causes inflammation and therefore greater swelling of the turbinates. I very regularly observe this tongue-pressing phenomenon despite wearing the CPAP. But even if I put my tongue back in a normal position, one nostril still remains blocked while lying down.
A person with apnea and a congested nose explained in one of their posts that they no longer had this blocked nose problem since they got a mandibular advancement device, even though they also saw many ENTs.

I have a first appointment in a few months to have one made, which I will use with my CPAP (agreed with my last ENT) to see if it changes anything. I already had sinus cauterization by radiofrequency = it didn't change this problem at all.
If the orthosis doesn't work, my ENT told me that he might be able to remove my tonsils and/or do a turbinectomy (I'm very afraid of empty nose syndrome).

I'll still share my tips with you because thanks to them, I manage to gain several hours before my nose gets blocked. Sorry if you already know them:

   • Using a mandatory dehumidifier in my room. My nose always gets blocked when the humidity rises above 52-54%. Knowing that the CPAP humidifier is mandatory for me, otherwise, I have a very dry mouth. Without it, the humidity in my room rises to 65%.

   • Little/no heating in my room. For some people, it's the opposite; their nose gets blocked if the room is too cool = they need a heated hose.

   • Ice water in the freezer for the humidifier. It helps to unblock a bit until the machine sends too warm air again. Lowering the humidifier a notch doesn’t solve my problem because I have to drink every two minutes due to a dry throat.

   • I tried a cold-water-soaked eye mask/cloth between my eyes (where the frontal nasal cavities are). In summer, it works a bit; I have managed to fall back asleep sometimes. Conversely, I’ve seen that other bald/balding people solved their problem by wearing a night cap that covers this area.

   • Nasal dilator or strips are mandatory for me: they allow the nostril that doesn't breathe to inhale more air.

   • My nose doesn't get blocked when I'm sitting with my head straight, which is why I often "sleep" in this position at my table (without CPAP, I know it's not good). Some people feel better with their head elevated with pillows. Does your nose get blocked too when trying to sleep sitting ?

   • It's very expensive and I'm sorry, but testing a mandibular advancement orthosis could perhaps help you better?
     
I would also be very curious to see your tryptase level in a blood test (of course, this advice is to be taken or left).

I'm so fed up with it that I would like to do a nasoscopy myself to see what really causes this "stuffy nose feeling". But the equipment is monstrously expensive on the internet, and even second-hand. Obviously, my ENT refused to lend him his equipment or give me advice, under the pretext that “it will be useless to do that”.

I also look forward to seeing if others have experienced the same blocked nose hell, to try other tips.

I don't speak English fluently and use a translator, so sorry if I make mistakes or if I don't understand some messages well

[Yeliad]

I generally have the same experience to what you are describing -- particularly I also notice my feet and hands almost turn red when experiencing the congestion. What also may be related are similar symptoms when I'm doing an intense mental activity like gaming competitively.  My face will feel uncomfortably hot and visibly turn red around where my sinuses are, and I get the same reddening of my extremeties. To your question on sleeping while sitting, I haven't really tried it/felt comfortable doing it so I can't really answer that.

---

I hope you see some success with the mandibular advancement device. I got mine a couple of weeks ago, and it's a very noticeable difference in sleep quality. Most obvious is that my eyelids don't feel like they are being weighed down by bricks, and that I can force myself to stay awake. Whereas before I would be so incredibly fatigued I wouldnt have the mental capacity to process that I need to get out of bed. I cannot say that I feel one hundred percent better however. It's hard to say if that is either because of severe depression or because the device doesn't fully solve my apnea. Still a big improvement, hope you see the same.

[Anewser]

Thank you for your reply. Regarding your mandibular advancement orthosis, do you wear it at the same time as your PPC? I guess it didn't improve your sinus problems, otherwise you wouldn't have had to write this post.

There I bought myself a “nesivine” spray just to see if it could change anything. I know that you have to be very careful with this type of product because of the dependence, but it will always provide additional information in the event of failure/success of this treatment. I would like to point out that an ENT specialist has already had me try a spay with corticosteroids in it and that it had absolutely no effect on me. There are some people for whom it is a nirvana (but given your post, I think you must have tested these types of products)

I forgot, I have been washing my nose with salt water every evening before going to bed for several months now. This also slows down my blocked nose. Looking at the precise data from my machine, my nose doesn't seem to get blocked while I'm sleeping, but rather either when I'm awake or just waking up. It's really weird. When I sleep I always manage to get 3-5 hours of sleep but it's rare. I also wonder if this is the case for you, or if your nose gets really blocked in the middle of deep sleep.

Concerning the position for sleeping seated, I understand that it is psychologically quite tough as a test. I always use another chair with lots of cushions and blankets on it so it doesn't cause cramps + 1 electric blanket so I don't feel cold + 1 cushion between one arm and the head to prop up my head. Without that one of my nostrils becomes blocked again. I don't have the orthosis yet so I have to go out and pinch my tongue a few centimeters so as not to suffocate in this position.
If your nose gets blocked less while sitting, there may be a way to play with the position in your bed.

+ I'm still planning other things to try. If I find a solution by then, I'll post it here.

[Yeliad]

I assume by PPC you mean CPAP, in which case no, I do not. My doctor said just the MAD should be sufficient considering I have moderate apnea. It does nothing for my nose, but now I can sleep without using a machine that irritates my nose further. I have tried the same stimulant nasal spray, it does indeed help the congestion; but, my face remains inflamed and irritable and I can't keep the mask on without it becoming super painful. Corticosteroids gave me the same experience as you. I've also tried nasal irrigation, no notable difference.

[Deborah K.]

I sleep on my back because of back pain, but I notice that nasal congestion is far less in this position. I suppose it's because the fluids can now drain more easily down my throat. All I'm sure of is that it's a lot better now.

[Anewser]

Same as you Deborah.K, I also have to sleep on my back as much as possible, otherwise one of my nostrils becomes blocked very quickly on the side. The problem is that with gravity, the tongue falls even more easily to the back of the throat. To relieve my back/neck, I sacrifice a few hours at the end of the night by trying to sleep 3/4 on my side with my cushion/supportive clothing.

I'm sorry, I totally forgot a solution that could perhaps solve your/our nasal problems. This involves using one or more nasal tubes called nasal orthoses or nasopharyngeal tubes. These are long hollow and flexible tubes that are placed in the nose to the back of the throat to remove the obstacle in the palate (but not the obstacle in the tongue), and used for certain people with apnea of the sleep. It would seem logical to me that in the case of a blocked nose, this forces the opening of the sinuses.

You can see this device on these links. EDIT sorry, i got limitation acces because i am too new here and a forum bot can't post my links. you juste have to add "https" at left at the "://" of all my links
- around 3m10 ://www.youtube.com/watch?v=-QQ7ghV5tnM . According to this video which dates back 5 years, this device is widely used in Japan, particularly against snoring, in France it was at the start of the test course.

- here, a medical team puts one of these tubes in the nose of a patient having an endoscopy under induced sleep. We can clearly hear a difference with or without a tube even if that's not the problem we're trying to solve ://www.youtube.com/watch?v=bhTyXt5vVx0

- I had looked at the studies on this subject concerning its use in patients with sleep apnea. There is a meta analysis available here from 2015 ://www.cambridge.org/core/journals/journal-of-laryngology-and-otology/article/nasopharyngeal-airway-stenting-devices-for-obstructive- sleep-apnoea-a-systematic-review-and-metaanalysis/0F663D198087EC0747EB54C385B68760

I am quite stunned not to have found any studies concerning the wearing of these tubes on people with nasal congestion problems (I may have looked badly).

From all the other videos I've seen, it's almost unbearable at first to put on/wear. But with practice, this no longer causes the slightest difficulty and discomfort in putting on/supporting them. You can also see other people putting them on like you would put on a night cap.

I bought these same “Back2sleep” tubes to test them several months ago on Amazon. Unfortunately I had to abandon the tests (too quickly) so I cannot give you feedback regarding its probable usefulness on blocked nostrils because:

- they are made to put only one in one nostril and not 2 in each nostril since they stabilize on the nasal septum. However, my rhinitis is tilting = by the time I put a tube in my blocked nostril, it was unblocked and the other one was blocked in turn.

- this directly caused leaks with my mask (I have an airfitN30 hybrid) because of the part that stabilizes on the partition. However, facial masks have been banned from seeing because of my recurrent uveitis.

- each time I swallowed my saliva, the tube came out little by little a few millimeters. I think there is a way to prevent this with a stock system. I'm sure that by tinkering/cheating with tips, we could put 2 tubes+ in place to fix them better.

If you ever find a system to have a tube in each nostril, I think it would be a good idea for you to test it with your mandibular advancement orthosis. When I have one, I think I would do the same + analysis with an oximeter that I just bought.

I still have lots of studies to read, I am just discovering certain terms and the use of the OSCAR software. I also saw some people suffering from blocked nostrils and looking for a solution in the French forum ://morphee.forumpro.fr/f8-entreprises-de-machine-a-pression-positive-ppc-ou-cpap . If I find one interesting, I'll let you know.

Conversely, do not hesitate to share the tips and tests that you will continue to do to try to escape from the hell of a blocked nose, whether the results are positive or negative.