New Here

Hello all!

I'm struggling with my cpap. Actually its the mask. I have the wisp and the swift fx nasal pillow masks. I'm debating on a full face but am not sure. I also wake up beyond dry... I'm suspicions of Sjogrens Syndrome. Some nights my nose is dry after I put the wisp on and I need to switch to the swift fx. I also was diagnosed with POTS around the time I turned 30

I'm a side sleeper and struggle with the mask leaking and hose in my way. I've been looking into pillows and a hose holder

If anyone has ANY recommendations please let me know. Over the next few days I'm going to use the search function as much as possible.

About me: I'm 33 a male 6'1 210 lbs. I've had sleep issues my whole life. I knew around 28 that I had apnea but my ego got in the way of getting it checked out. This spring I bit the bullet and my test showed mild to sever apnea. I love motorcycles, trucks, and cars. I work full time (hard with POTS). I also work on my house and cars. I workout 3-5 X a week (best treatment for POTS). I have a great woman who takes care of me when need be, and a bearded dragon for a pet

Thanks!

I'm debating on a full face but am not sure. I also wake up beyond dry... I'm suspicions of Sjogrens Syndrome. Some nights my nose is dry after I put the wisp on and I need to switch to the swift fx.

Two things - dry mouth usually indicates mouth breathing so you need to try things like chinstraps or full face mask to see if it helps before jumping to diagnosis.
You also need to play with your humidity levels regarding the dry nose. Some people just need more.

Mouth stays closed, I have used the chin strap but do not need it. My humidifier is used every night and is cranked to 5 the max setting. I have a tall glass of water for the first time I wake up (usually around 3-5AM) and I suck it down. My mouth feels like an overripe prune when I go to open my mouth. Sometimes my lips feel like they are going to rip. Sjogrens could also be the root cause to my dysautonmia/pots. I've had many of blood test but none that would indicate Sjogrens/Autoimmune. However only about half will test positive through blood. A lip biopsy is the best way to confirm or rule out Sjogrens. Same goes for Mitochondrial disease.

Ok you covered the obvious bases! Most newbies don't know and we need to make sure.

I know there are other members who have Sjogrens here and maybe they will soon chime in.

BlackSpinner wrote:Ok you covered the obvious bases! Most newbies don't know and we need to make sure.

I know there are other members who have Sjogrens here and maybe they will soon chime in.

Thanks!

I also forgot to ask, can anything be done about my eustacian tubes? I get a lot of pressure in them.

Only your doctor can know for sure...

I appears you are getting leakage thru your mouth at night and don't know it. We do a lot of things at night unknowingly. The dry mouth is an indication. Try a full face mask. There are multitudes out there. Find one that is comfortable that doesn't leak. The mask search is the key to successful therapy. I went thru 6 before I found "mine".

Sheriff

Also, more humidity isn't always better. Our noses have individual preferences for how much moisture they like, and they'll congest at anything else. Two might be too little, four might be too much. It takes more experimentation than I expected.

Thanks all!

Monstrosity,

First, I love your screen name. It reminds me of a beloved piece of furniture in my Daddy's house that my Momma christened "the Monstrosity" when he first brought it into the house. It's a mid-1800's sideboard (complete with the original beveled mirror) that was painted Pepto-Bismol pink when he bought it for about $25 in 1968. It took Daddy something like 4 or 5 months to refinish the thing, but once he did it was a fabulous piece of oak furniture with the original brass drawer pulls as well as the mirror. (Even the brass knobs had been painted pink.)

Next, can you post your equipment? While it's possible that you are springing leaks when you are asleep, and that a full face mask might help, it's also possible that you don't have a leak problem and going to a full face mask might cause just as many problems (and maybe more) as the current masks do. If you could post something about what your leak data looks like, that would help us determine whether a full face mask really is needed.

In trying to do a bit more detective work on your dry nose/mouth problems: Pre-CPAP did sleeping directly under a fan or an A/C vent bother you? Did you wake up feeling dried out when you sleep directly under a fan or A/C vent?

robysue wrote:Monstrosity,

First, I love your screen name. It reminds me of a beloved piece of furniture in my Daddy's house that my Momma christened "the Monstrosity" when he first brought it into the house. It's a mid-1800's sideboard (complete with the original beveled mirror) that was painted Pepto-Bismol pink when he bought it for about $25 in 1968. It took Daddy something like 4 or 5 months to refinish the thing, but once he did it was a fabulous piece of oak furniture with the original brass drawer pulls as well as the mirror. (Even the brass knobs had been painted pink.)

Next, can you post your equipment? While it's possible that you are springing leaks when you are asleep, and that a full face mask might help, it's also possible that you don't have a leak problem and going to a full face mask might cause just as many problems (and maybe more) as the current masks do. If you could post something about what your leak data looks like, that would help us determine whether a full face mask really is needed.

In trying to do a bit more detective work on your dry nose/mouth problems: Pre-CPAP did sleeping directly under a fan or an A/C vent bother you? Did you wake up feeling dried out when you sleep directly under a fan or A/C vent?

Haha.... glad you like the name! Its from my wild days and from things I used to do.

My machine is a Philips remstar resperonics system one. The mask I alternate from is the wisp and the nasal pillow swift fx. I've been dry prior to my cpap. I would get bloody noses in my early 20's that never seemed to stop. Finally one day they did. My lips have always been dry. My gums started receding around 21 and I had surgery for recession. My elbows started hurting mid 20's. I ended up fracturing one of them and didn't find out/have it fixed for 3+ years. I have been diagnosed with small fiber neuropathy and they are not sure of the root cause. Whatever it maybe its causing dysautonomia/pots. I've had a whole bunch of stuff ruled out. One of my doc's think its Sjogrens but a lip biopsy will need to be done since all my blood tests are normal. Back to the dry skin, my hands will dry out easy, same with my face. I get patches in the winter time on my feet, elbows, and hands. No matter what I put on them I cant seem to get a head.


One other side note. I had to have two sleep studies done. The first it took me so long to fall asleep that they didn't see issues till it was almost time to wake up. They said I had 46 episodes in one hour. Then I had to wake up. They then prescribed a cpap and set it at 7psi. At first I felt great and then within a few weeks I felt like I was being suffocated. I went through 4 masks total. One was the full face that dosent have a bridge across the forehead. I had the second test and it took the Cleveland Clinic home care weeks to set my psi to 10. In that time I swapped the full face for the wisp. Mistake.... I can get a new one next month but have to pay for the head gear. Either way its fine, neither of the masks are doing much but bothering me right now. The pillows hurt my nose and the wisp has cut the bridge of my nose.

I rarely sleep with a fan, I don't lay under or next to a vent.

Thanks for listening!