"Ah Ha" moment regarding nasal bridge pressure ulcers

[okcpa99]

Long entry here at 4:09am but am not sleeping well tonight due to a recent death in the family... not from apnea or cpap use.

As some of you have seen by my recent posts ("done, finished, I give up"), I have really struggled for 2 months with cpap therapy. Today, I finally saw a sleep specialist who was fantastic!

Thought I would share something he told me about full face masks and nose pressure ulcers. My jaw is set back to far (retrognathia) which is the cause of my sleep apnea. I have always been a mouth breather when lying down so my DME (and the sleep lab) automatically put me in a full-face mask (quattro air). This caused a horrible pressure ulcer not the bridge of my nose that is still healing after 5 weeks of treatment (have been off the full-face mask and using a hybrid or nasal pillows during this time).

My doctor stated that I should not have been placed in a full face mask. Said my mouth breathing was due to my jaw problem, not a soft-palate or nasal problem). A full-face mask is not the right choice for 2 main reasons: 1) the full face mask, by design, puts pressure on the lower jaw and actually pushes the jaw further back making the problem of retrognathia worse; 2) this causes the mask to sit at an angle on my face with the top being looser than the bottom thereby creating leaks around the top of the nose making you tighten the straps down to stop those leaks - leading to pressure ulcers on the bridge of the nose.

He recommended nasal pillows with a chin strap that does not push the lower jaw back at all. Thankfully, I had already purchased, and been using, the air fit mask with Respironics premium chin strap. This way it keeps the mouth closed but NOT by pushing the jaw back and allows me to breathe through my nose.

He changed my pressures all around and wants me to try these new settings with the nasal pillows and chin strap for a few weeks. If my leaks are good but my AHI and pressures are high then he will recommend a specific type of dental appliance (not sure what kind - we did not talk about it) that holds the jaw in a neutral position without pulling it forward too much - which can cause TMJ problems.

I so badly with I had seen this physician before now. My experience has just been so bad - from my PCP telling me that he "could tell by looking at me that I did not have sleep panda", to the sleep center "losing" the data from my first sleep study, to the technician tightening down the full-face mask so bad it made me hurt for days after my second sleep study, to the respiratory therapist putting me in a mask that did not work, to him telling me I had the best mask on the market despite my terrible pressure ulcer, to buying two additional masks out-of-pocket because of all this, to my PCP stating he could not help me with apnea and I would have to see a sleep specialist, to still having 3 more weeks to see the specialist he recommended (putting me at 3 months after starting cpap use). To me trying to get in to a well-known sleep center who said they would not see me because I had done a sleep study at a different clinic.

I switched DMEs and switched doctors and I am so thankful. The doctor took over an hour with me in the room. Discussed medical studies that directly pertained to me. Told me about all the options.... mask types, dental appliances, sinus surgeries, nuvigil/provigil, sleeping aids, soft palate surgeries and jaw surgeries and why each one would/would not work for me specifically. We also talked about other things such as headaches, nighttime urination, sweating, etc. He said that most often, memory problems associated with sleep apnea are reversible and people notice a big improvement in memory (but it usually takes 6-9 months). There was a bit of potentially bad news for me, however. Because my issue is a jaw anatomical problem, he suspects I have had this since childhood (and I absolutely agree with him). That is not good. He said that long term hypoxia (years and years - for me probably about 40 years) can have an effect on the receptors that make you feel "awake and refreshed". Those areas of the brain (or neurons, or whatever) can become permanently "damaged" (totally not the correct neuro words but I am paraphrasing here), making it difficult or sometimes impossible for patients to "feel" the benefit of cpap therapy and constantly feel tired and worn down. He does not like to prescribe provigil/nuvigil long term, however, I may be one of those special patients that does not feel the benefits of cpap and may need help to feel awake. So he gave me samples of nuvigil and will see me back in 2 weeks. We will just have to wait and see if I am going to start feeling better after good apnea control, or if I might require medication long term.

He also acknowledged how terrible this has been for me and told me specifically why I had experienced so many problems with the pressure sore, leaks, increasing AHI, etc. I truly feel as though I have someone who actually cares about my problem now.

Nighty - night. Going to try and get a little more shut eye (if I can turn off my brain, that is).

[Scootergirl]

So glad you found the right person to help you - that makes all the difference in the world! Good luck with your CPAP - it sounds like you're on the right path now!

[sciflyer]

my PCP telling me that he "could tell by looking at me that I did not have sleep panda"

Sorry, couldn't help myself

[Sleepy Brit]

So great to read about your experiences. Thanks for taking the time to share them. I fear I probably have the same physical root causes that you have, with perhaps an added dose of constant nasal congestion and narrow nostrils to force me to favour mouth breathing since I was a small child.

I'm a completely new cpap patient, I was diagnosed this year with an AHI of 60+. I've been getting treatment for about a month and after I found out that I had a problem I came to think that I've probably had it for most of my life but my willpower and youth has gotten me by until now. Now that I'm a bit older I have really started to feel it!

I too started with a full face mask and until I figured out how to use SleepyHead I thought I was doing exactly the right thing for a mouth breather. After almost 3 weeks of using a full face and feeling the worst that I have ever felt in my life I managed to read the data that showed my apneas were even worse with the full face than without it. I had tried a nasal pillow mask for a couple of nights early on but had no idea if it was working and thought the air was actually coming straight out of my mouth. Turns out the nights I used the nasal pillows my AHI was down to under 1.0! Thanks SleepyHead!

Since then I have done 7 whole 6-8 hour nights at 1.0 or below and I think I am finally receiving valid treatment. I still feel terrible but that is why it's so interesting and affirming to read about the hypoxia and effect on the brains receptors. I'm pretty certain there is some truth to that. Up until now I've been trawling CPAPtalk trying to find out why even good sleep wasn't making such a difference to the feeling of fatigue without too many clear answers.

I'm really happy you have found this respite and help and by sharing it you have given me much needed hope for the future and a fuller understanding of what is happening to me.

Many Thanks!

[Bama Rambler]

...I had tried a nasal pillow mask for a couple of nights early on but had no idea if it was working and thought the air was actually coming straight out of my mouth. Turns out the nights I used the nasal pillows my AHI was down to under 1.0! Thanks SleepyHead!
Many Thanks!

Sleepy Brit -- What do your leaks look in SleepyHead with the nasal mask?
Just checking because if you're having very large leaks (even mouth leaks) the AHI could be wrong.
Not saying it's happening, just checking.

Okcpa99 -- I have the exact opposite problem. I have a bad under-bite.

[Sleepy Brit]

Sleepy Brit -- What do your leaks look in SleepyHead with the nasal mask?
Just checking because if you're having very large leaks (even mouth leaks) the AHI could be wrong.
Not saying it's happening, just checking.
.

Thanks for checking! I appreciate it. Here is a leak graph from last night. I'd be interested to see if there was mouth breathing/leaking.

Edit: swapped the image something went wrong with the data view in the first.

http://i.imgur.com/LXUJX5q.png

[Sleepy Brit]

And here is a slightly worse night:

http://i.imgur.com/E82qaw4.jpg

[Bama Rambler]

You only had a couple of leaks and even they weren't bad. The first one especially looks like a mouth leak. Maybe someone more familiar will take a look and chime in.

One thing that bothers me more is that it looks like your pressure is bumping the upper limit pretty regularly. Does it do that on a regular basis?

On the last image you had several leaks, but it's hard for me to tell if they were mouth leaks or not. However I see that the pressure spikes correspond to the leaks so it might be worth trying to find out what's causing them and to reduce them if possible. Are they waking you up at night?

Before we continue hijacking this thread lets see if we can get one of the mods to split this into your own thread.

[Sleepy Brit]

Thanks for your feedback, I can make a new thread perhaps.

Yes the pressure seems to do that around 4 times every night and also seems close to the leak spikes. Maybe my mouth is opening up and the cpap is trying to compensate for the leak?

I haven't been sleeping that deeply so perhaps it's waking me up, but not all the way.

I'll try a chinstrap tonight and see if anything changes.

[echo]

Long entry here at 4:09am but am not sleeping well tonight due to a recent death in the family... not from apnea or cpap use.

My condolences. A death in the family can be very stressful.

My doctor stated that I should not have been placed in a full face mask. Said my mouth breathing was due to my jaw problem, not a soft-palate or nasal problem). A full-face mask is not the right choice for 2 main reasons: 1) the full face mask, by design, puts pressure on the lower jaw and actually pushes the jaw further back making the problem of retrognathia worse; 2) this causes the mask to sit at an angle on my face with the top being looser than the bottom thereby creating leaks around the top of the nose making you tighten the straps down to stop those leaks - leading to pressure ulcers on the bridge of the nose.

I have a slightly receding chin / underbite (which is retrognathia if I understood correctly) ... but the real problem isn't that we shouldn't be wearing a FMM, it's that they are designed with the wrong angle, IMO, for people with this problem. I SO WISH that cpap mask manufacturers would get this!!!!!!!!

I haven't had a nose ulcer with the Quattro FX, though I get a sore neck from tightening the bottom straps too much. (Other FFMs may have given me nose problems; I don't remember it was too long ago).

There was a bit of potentially bad news for me, however. Because my issue is a jaw anatomical problem, he suspects I have had this since childhood (and I absolutely agree with him). That is not good. He said that long term hypoxia (years and years - for me probably about 40 years) can have an effect on the receptors that make you feel "awake and refreshed". Those areas of the brain (or neurons, or whatever) can become permanently "damaged" (totally not the correct neuro words but I am paraphrasing here), making it difficult or sometimes impossible for patients to "feel" the benefit of cpap therapy and constantly feel tired and worn down. He does not like to prescribe provigil/nuvigil long term, however, I may be one of those special patients that does not feel the benefits of cpap and may need help to feel awake. So he gave me samples of nuvigil and will see me back in 2 weeks. We will just have to wait and see if I am going to start feeling better after good apnea control, or if I might require medication long term.

If I remember correctly, the brain can build up protection against the hypoxia, so I wouldn't panic just yet. Did you have severe desaturations noted in your PSG? In my case, I am also 100% sure that I've had OSA since childhood (doctor said as much too), but I never desaturated below 92%, so that probably helped save some brain cells. In any case, I would personally wait on taking some meds and give your therapy a chance to work. It's not only the hypoxia that causes problems, it's the constant arousals too. In my case, I wasn't getting enough REM nor SWS sleep and that's probably what was causing the major issues. The constant adrenaline keeping me from choking at night has also resulted in adrenal fatigue (I know it's debatable whether it exists), which hasn't resolved completely with CPAP therapy. Other issues can be at play to, e.g. hypothyroidism, diabetes, etc.

[okcpa99]

Hello everyone. I am glad that some of you are finding the information given my provider helpful. FYI I am in OKC area and if any of you want the name of the physician, send me a PM.

To answer the last questions... yes, I have major desats. I get down to 70% and stay that way for 120 seconds - so it is not so good for me but I have hope that the cpap will make me feel good.

I did take 1/2 of a nuvigil this morning (with my usual diet Dr. Pepper) - oh My goodness - I am AWAKE!!! Tomorrow - no dr pepper!

[djhall]

He said that long term hypoxia (years and years - for me probably about 40 years) can have an effect on the receptors that make you feel "awake and refreshed". Those areas of the brain (or neurons, or whatever) can become permanently "damaged" (totally not the correct neuro words but I am paraphrasing here), making it difficult or sometimes impossible for patients to "feel" the benefit of cpap therapy and constantly feel tired and worn down. He does not like to prescribe provigil/nuvigil long term, however, I may be one of those special patients that does not feel the benefits of cpap and may need help to feel awake. So he gave me samples of nuvigil and will see me back in 2 weeks. We will just have to wait and see if I am going to start feeling better after good apnea control, or if I might require medication long term.

This might be a really important piece of information. I see so many people here who say they have been on CPAP for several months but they don't feel like they are less tired. I'm going to make a note to see if if can dig up more information about this since it would be very nice to be able to give those people a possible explanation of what my be happening and what they might ask their doctor about.

Great news that you finally found some competent and supportive medical resources.