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New to forum...Anyone else have OSA and Sjogrens Syndrome?

Wondering how others are managing the two.  Symptoms are similar (other than the actual breathing issue) and it seems not many Doctors are familiar with Sjogrens or take Sleep Anpnea seriously.  Frustrating!

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Why? It's costing me about $85 a month for 12 months.
99 said:

even if you do not use the bi pap just hang on to it 

i live in uk and was wrong to suggest you hang on to machine as there are different arrangements for different countries

Kathy Mason said:


Why? It's costing me about $85 a month for 12 months.
99 said:

even if you do not use the bi pap just hang on to it 

Hi Joan,

I just signed up in this forum, as I did a search for the exact same problem you describe!  
I have both severe OSA, and recently diagnosed with Sjogrens.  And I'm a male!  One of those in the minority!
I cannot tolerate my Cpap, due to the dry mouth, eyes, sinus etc.  I took some time for the docs to recognize this, as they did not understand why the humidifier didn't solve the problem!
Additionally, I have narcolepsy, several disc's in my lower back are torn, and leaking, as well as hip arthritis.  So I take narcotics for pain, amphetamines for the narcolepsy, and an anti depressant to sleep at night.  
I need to take xyrem for the narcolepsy, but it's too dangerous!  And none of my docs have the answer.  I have a zero gravity chair that I spend most of my day in, and will sleep in it as well.  However, my bed is a tempurpedic, with an adjustable base, that will put me in a zero gravity position.  That's how I sleep now.
I would like to get back on my Cpap, but can't tolerate the dryness it causes.  So I too am looking for answers.
The reason I decided to respond, is that maybe two heads are better than one, in our search for relief.  I see a pretty good rheumatologist, and neurologist, as well as pain doc.  I discuss this with them each, and I would like to believe that there will be some sort of answer.  And if I get one, I'll share with you!  And obviously, would want you to do the same.  Deal? 

Maybe a humidifier in the room, too?  Provent?  I understand about not tolerating CPAP because of the dryness.  Good  luck

I have had OSA for about 7 years now and wouldn't give up my CPAP for anyone.

I was diagnosed with Sjogrens last week - strong positives on blood tests. However, I don't have the severe dryness of the mouth and eyes that some do. My nasal passages are quite dry though. I had a humidifier on the first CPAP machine I had and didn't like it. The little drops of water it left in the mask bothered me.

I use Ayr nasal gel to help keep my nose moist. It helps enough that I don't need it every night. You should be able to get it at your local drug store but it you can't find it, I'm sure you can get it online.

I too get clogged ears and never associated it with the CPAP. I've always associated it with eating foods I'm allergic too - especially dairy which makes congestion worse even you aren't allergic to it.

I had to see a rheumatologist to get the Sjogren's diagnosis - no other doctor would have known to test for it. I had a GP who knew what it was and the ANA came back positive and he mentioned the labs should have done further tests, but he never re-ordered the tests so I went 7 years without a diagnosis. Only time will tell how the delay in treatment affects the course of the illness.

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