Forum · Autoimmune Disease ~ Sjogren's Syndrome

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[-] SjoDryandParched1 +1 point · over 1 year ago

Hi Folks. Most of you may not be familiar with Sjogren's (pronounced SHO-GRINS) Syndrome. It is an autoimmune disease which causes all of the moisture-producing glands to not produce. Thus, I have severe dry eye; dry nose & dry mouth (also sinuses) without any cpap machine. I was recently diagnosed with SA & am struggling to find a solution that does not cause worse dry mouth.

I have a mask with nose pillows & do not sleep with my mouth open. I am getting so dry that I wake up with a horrible migraine-like sinus headache every day. This is the second mask that I have had.

I had heard that Sjogren's patients sometimes do better with a Bi-pap machine, but do not have a clue. I want this to work..but not waking up like this every day. When I turn the humidifier up, I wake up with water in my nose & the tubing bubbling.

Are there any of you with excessive dryness that have found a workable solution. Or maybe I have the wrong settings. No one has given me any ideas on different settings that I might try. For instance...if you have ___problem, try A: Or with _problem, try B.

I saw the SA doc one time and then received a letter he was leaving the practice. I am trying to get in with another one. But in the meantime, I am getting very little quality sleep and bad headaches.

Any thoughts? Thanks in advance. SjoDry

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[-] PatientVioletBear0961 +0 points · over 1 year ago

I think you should try again setting your humidifier to the highest setting. Make sure that the temperature of your CPAP is also at the highest setting, since you will need the CPAP air to be very warm in order to keep all of that humidity in the form of water vapor. If the air gets too cool, the humidity will condense into liquid water. Your entire length of tubing needs to be kept warm too, so you should be using heated tubing if you are not already. It also helps to wrap your entire tubing in a material that insulates it from the cooler air in your bedroom. I use a Snuggle Hose for this purpose.

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