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Autoimmune Disease ~ Sjogren's Syndrome

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SjoDryandParched1 +1 point · almost 8 years ago Original Poster

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 · almost 8 years 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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PersistentSapphireSeal2188 +0 points · over 6 years ago

SjoDry, just a thought, when did your Sjogren's symptoms start? Mine started after I began use of CPAP and am concerned about a connection. CPAP creates a fully plastic enclosed environment (lots of chemicals) that forces air directly into the mouth, nose and lungs, putting pressure on the ear, nose and throat constantly for 8 hours a night. I have been on CPAP for a year and Sjogren's was just diagnosed. I've had general dry eye and low grade sore throat in past, but didn't have the severity of the Sjogren's symptoms before CPAP. I'm just starting to wonder about this so am searching to see if others have noticed a connection.

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sleeptech +0 points · over 6 years ago Sleep Enthusiast

No, CPAP does not cause Sjogren's syndrome. It can, however, be a pain if you have Sjogren's. The only thing you can do is get the best humidification possible.

To set your humidifier start it somewhere in the middle of its range. If you are still dry turn it up one step and try again. If you start to get condensation you have hit the limit of the amount of water the air will hold, so turn down one step.

This can be improved with heated tubing to prevent condensation. Proceed as above, but If you get condensation keep increasing the tube temperature until it stops. You can make the heated tube even more efficient by insulating it, either with a specifically made CPAP tube insulator or just a plain old scarf (or equivalent). Also, try to tuck the tube under the cover with you to keep it warm.

It is possible to get special medical humidification devices which are usually used in hospital. They are expensive but they do deliver the maximum amount of humidification possible. I have never heard of anyone using one of these at home but it is theoretically possible.

The though also occurs that you could try breathing through your mouth with a full face mask. It may just be less uncomfortable than the sinus pain. If my instructions of humidifier or heated tubing use were too terse, just reply here and I'll try to expand a little for you.

Best of luck.

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SleepDent +0 points · over 6 years ago Sleep Commentator

I am a dentist working in dental sleep medicine. There is no question that it is a tough break to have address obstructive sleep apnea with Sjogren's Syndrome. Most likely, you are already aware of oral moisturizers, like Biotene, and they are a relatively ineffective solution, but, for the sake of completeness, I will mention it. Have your considered oral sleep apnea appliances? The benefit here is that there is no pressurized air coming into your nose and throat and, of course, that air flow is a major consideration with the dryness. You will have somewhat less dryness with an OA if you normally breathe through your nose. If you mouth breathe, you will again have some dryness problems with an OA, but not on the scale of CPAP. A few OA's, the Tap3 and the DreamTap will soon come with optional intra-oral mouth shields that will seal off you mouth from the inside and prevent the dryness of mouth breathing. In that case though, you might need to see an ENT doctor to make sure that you can breathe well enough through the nose. I would also think that it would be possibly beneficial to review your medications with your doctor and/or pharmacist to see if any of those are compounding your dryness problems. Good luck to you. Arthur B. Luisi, Jr., D.M.D.

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