Balloon-like Nodes in Nose swelling when laying down? Anyone sleep sitting up?

[WanderWonder]

Hi, I don't know if this is related to dysautonomia, but I've been having a lot of sleepless nights and is hoping to hear if this sounds familiar:

I have two balloon looking sacs about an inch up my nostrils that I can see when I use a flashlight. I can breathe in the day fine since they are only covering about 75%, but at night they swell up, and one of them completely blocks my nose like a wall. I wake up heart pounding like I can't breathe, and feel fatigued the rest of the day. As soon as I sit up, they shrink in minutes.

I've reclined my bed 8in, got a hepa air purifier, wash sheets every week, tried netipot, used nasal steroids, got bedmites sheets... I'm not sure what else to do. My sinus scan came back negative, so my doctor won't refer me to an ENT as they likely won't have any suggestions.

I've tried sleeping sitting up, but I couldn't go to sleep that way. Any thoughts? Thank you!

 

[lieze]

Do you think you have polyps in your nose? Did you ask your doctor to take a look? Or they only swell at night? 

[lieze]

Have you tried breathe right nasal strips? I wonder if those would help? It kind of opens your nose up more. I would be calling around to ENT’s to see if someone would take you or if they are only visible at night go to ER get examined and get a referral to ENT from the ER physician. One of my classmates in nursing had some nasal polyps that she had to have removed. 

[Pistol]

@WanderWonder - This happens to me during allergy season and also gets worse when lying down. I believe it is due to the pressure in the sinuses changes when we are lying down. It improves as soon as I sit up. However - when allergy season is over or I take antihistamines the problem is not there. Have you tried saline mist or a thin layer of Vaseline around the rim of your nostrils? This was recommended to me by my ENT to keep my nose from drying out too much. 

[Guest KiminOrlando]

It may be a turbinate problem. This happens to me and I had to have surgery. I don't believe it is related to dysautonomia. You really need to see an ENT. Google 'swollen turbinates' and see if it fits. If it does, ask your primary about it and see if that will spur him to do something. Filters, nasal spray, allergy meds don't help. 

[WanderWonder]

Thank you all for the quick reply! I have a call with my primary care doctor, so this really helps! My doctor had looked into my nose already and said it does look like there is some obstruction, but it's enough for me to breathe normally...which is true in the daytime.
 

@KiminOrlandoTrbinateslooksrbinateslooks weird glitch sorry, Turbinates looks like the right term for it!! The CT nasal scan was requested from the ENT department before I can see them, but it came back with "miminimally thick" whatever that means. Do those show up on scans?

@lieze they only swell at night after about 15 minutes of laying down. Nasal strips didn't do anything - I've tried a few sizes.

@Pistol

I suspect I have an indoor dust allergy something, so there's no allergy season for me unfortunately. I've tried two kind of steroid spray, but that didn't work. I'll try the vasaline, but it's about 70-80% in my room.

 

Edit: I got referred to an ENT along with some other nasal sprays to try. Thanks again everyone for your responses!

 

[WanderWonder]

Interestingly someone says they think got PoTs from this. My PoTs symptoms happened about the same time, and it's worse on days I don't get good sleep.

https://patient.info/forums/discuss/devastatingly-swollen-turbinates-641087

[kisekis]

On 12/13/2019 at 1:57 AM, WanderWonder said:

Interestingly someone says they think got PoTs from this. My PoTs symptoms happened about the same time, and it's worse on days I don't get good sleep.

https://patient.info/forums/discuss/devastatingly-swollen-turbinates-641087

I search your post from your reply to my thread. Ive had this my whole life.(its really bad) When i was a kid i also get episode of nose bleed. i also have immune problem, gut issue. So its all connected. Many of my family member have the issue too.

 

I read that nose block issue can also come due to histamine/mcas issue and got issue. I seem to feel it too. When i eat something/something bad it exacerbate it.

[WanderWonder]

@kisekis
Thanks for your experience. I did have a brief autoimmune issue where my TSH was high, but it went away. As for the hisamine, I don't have all the symptoms, but some. Yet the list has so many things, so I'm not sure if that is what I have or not. I'll keep an eye out on if a trigger food has histamine.

 

[WanderWonder]

@Pistol
My mistake, I meant to say that I tried 2 kinds of steroid sprays that didn't work. Right now I'm trying an antihistamine spray (azelastine) and a steroid spray. Even though my Turbinates are at the same size, they haven't closed up my nose completely and I've been breathing easier at night so far.

My POTS is still the same though. I wonder if my POTS symptoms will get better with antihistamines - does anyone know if an antihistamine spray would show the same results an oral antihistime, or would trying Benedryl instead or something show results if it is a hiastimine issue?

Edit: after more searching, it looks like the spray doesn't cross the blood-brain barrier so it only affects the nose, not the rest of the body. I wonder if it's worth trying one that does.