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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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Hi Joan,I have been on cpap for 8 months and not happy with results yet -could i have this?.Can you tell more of the symptoms for you?

Hi Andrew, 

Sjogren's Syndrome is an Autoimmune and Inflammatory disorder that affects the exocrine/mucous-secreting (salivary) glands mostly but also causes fatigue.  Most obvious symptoms are dry eyes and dry mouth.  I have a lot of sinus/ear infections and have not been able to determine if it is CPAP or Sjogrens, therefore, I've settled with a combination of both!  I am not aware of any known connection between Sjogren's and OSA.  Sorry for the confusion. 

Hang in there with the CPAP, as difficult as it is to adjust it is a god send.

 


Andrew M said:

Hi Joan,I have been on cpap for 8 months and not happy with results yet -could i have this?.Can you tell more of the symptoms for you?
Joan, we do have some people who come down with ear and sinus infections.  As far as I know there is nothing to link these infections to CPAP use.  Some people seem to be more sensitive to the pressure changes than others.  Keep you equipment clean to avoid contamination.

Thanks Mary.  I do keep my equiptment clean and also soak in vinegar solution weekly.  Appreciate your input.

 

 

Mary Z said:

Joan, we do have some people who come down with ear and sinus infections.  As far as I know there is nothing to link these infections to CPAP use.  Some people seem to be more sensitive to the pressure changes than others.  Keep you equipment clean to avoid contamination.

Joaan, not to get off the subject of the thread, but the sinus and ear infection question is always out there.  Some people swear there is a connection and I have heard  other people say their doctors said the two could not be related.  We recently had a member go off CPAP for a period of time due to recurrent ear infections, but got another one anyway. One member had a very difficult time treating her sinus infection, requiring multiple antibiotic regimens for long periods of time.

I guess it depends on what doc you see and their personal experience if they take sleep apnea seriously or not.  When I went to my GP c/o excessive daytime sleepiness the first thing out of his mouth was "Let's schedule a sleep study".  Then I had a neurologist sleep medicine specialist who could not get me titrated and started to give me the bums rush out of the office.  I think his practice had gotten so large that he was no longer interested in treating a clinically difficult patient.

Since Sjogrens is not so much in the public eye I can see why it's hard to find a doctor who knows about both.  What kind of specialist do you see?  I know my psychiatrist (who is supposed to be excellent at pharmacology) knows nothing about the effects of my meds on sleep architecture and OSA, and my current sleep doc is sure that my meds negatively impact my sleep apnea.

Hi Joan,

Thanks for words of encouragement,I have looked at the symptoms online and I have a to many of them to reject this.Dry eyes and mouth.The scariest one for me is the fatigue:I tend to sit on the bed or chair -directly after I wake up, for hours:Dozing and yawning!

I am losing all confidence in my sleep doctor,GP and Psychiatrist, As I know something else is going on!( I diagnosed myself sleep apnea and depression - was confirmed as severe in both cases!)

Its because of Forums like this I was able to do so, And keep on battling.

So thanks again to Joan and Sleepguide.com for helping :)

Andrew

 


Andrew, glad you have ruled  out Sjorgrens, but sounds like you can use some help.  As this thread is about OSA and Sjorgrens your comments are probably going to be overlooked.  SInce you are having such a bad time with CPAP and have lost confidence in your doctors, please start a new discussion so we can be of help.  Many of us, me included have been/are in the same place.

I know first hand about depression and losing confidence in doctors.

Sounds like your OSA is being undertreated, or you have hypersomnia/narcolepsy.  Either can be diagnosed with a Multiple Sleep Latency Test.  They do make wakefullness meds- Provigil and Nuvigil are two-  that will help you stay awake and alert during the day.  I know, another pill!  Many of us like to keep meds to a minimum.  I have been recently reading some interesting research on the effects of SSRI's on sleep architecture (don't know if you are on meds for depression).

Sorry, Joan, not trying to hijack your thread.

Andrew,  I believe that the symptoms you mention can also just be from the osa and cpap.  My bipap machine with humidifier really helps with the dryness.  There is a blood test available for Sjogrens Syndrome and it might not hurt to ask your Doctor about it.  I will say however that 80-90% diagnosed with Sjogrens are women.  So there is a good chance you will be lucky enough not to have it.  It is a difficult but manageable disorder.  Good luck to you.  I understand your frustration trying to get answers. 

Joan

Andrew M said:

Hi Joan,

Thanks for words of encouragement,I have looked at the symptoms online and I have a to many of them to reject this.Dry eyes and mouth.The scariest one for me is the fatigue:I tend to sit on the bed or chair -directly after I wake up, for hours:Dozing and yawning!

I am losing all confidence in my sleep doctor,GP and Psychiatrist, As I know something else is going on!( I diagnosed myself sleep apnea and depression - was confirmed as severe in both cases!)

Its because of Forums like this I was able to do so, And keep on battling.

So thanks again to Joan and Sleepguide.com for helping :)

Andrew

 


I also have Sjogren's and sleep apnea. I was not able to use CPAP because it gave me excruciating sinus headaches. I was recently tested with the BIPAP and it did not give me a headache but it made my right ear plug up and it did not subside for over a week. I recently had surgery and they had me on BIPAP in the hospital for about 48 hours. My left ear is now plugged up and it has been 6 days  with no sign of relief. The doctors, including ENT, agree that the forced air is causing this because my sinuses are so extremely dry. They say there is nothing to be done about it and I should wear the BIPAP anyway for my sleep apnea. They don't seem to get that I can't function on a daily basis with severe headaches and ear pressure that does not go away. I'm supposed to just "get used to it." I believe they think I am just having difficulty getting used to it like a lot of new patients, but that is not the case. The mask I have is very comfortable and I could sleep all night with it with no problem if I didn't have to turn it on.

I also want to comment that I was diagnosed with Sjogren's a few years ago and have received no treatment for it. I'm told to use eye drops for the dry eyes (Restasis didn't work for me) and saline spray for my dry sinuses. None of the doctors I have seen seem to know much about it or take it seriously.

I am supposed to get my BIPAP this week and at this point I am thinking of cancelling, or at least postponing getting it. I have been sleeping sitting up in a recliner for a few months now and I think that has really helped my sleep apnea. I am also overweight and I know if I lose weight that will help as well. I am struggling with a decision here, but mostly I am leaning toward NOT getting the BIPAP. I know with 100% certainty it is the machine that is causing my sinus and ear problems (the doctors agree) and I don't think I am willing to try to "get used to it."

Another thing that should be noted: The doctor who went over my BIPAP titration results with me said that the BIPAP machine actually made me stop breathing in my sleep. It happens on rare occasions that the brain gets lazy and forgets to make you breathe because the machine is doing it for you. He said this is something else I should work through because it could go away over time. I said to him "You're telling me I have a condition that makes me stop breathing in my sleep and that the treatment for it makes me stop breathing in my sleep?" I am very frustrated.

Mary,

I understand what you are going through COMPLETELY!  I was diagnosed with severe sleep apnea 3 years ago and when I began using the equiptment, I began having sinus infections.  The sleep doctor dismissed the connection (and still does) but we did adjust the equiptment, tried new machines, air pressures and masks and found what worked best.  That has changed over time, but we keep working at it.  Weight loss will make a difference in the level of air pressure, which has helped me.  I hope you will keep trying to find answers and not give up on the bipap.  Sleep deprivation is so serious.  I use two nasal sprays (Astropro and Omnaris) every night before bed and it has helped so far.  I have been using them for 6 months and have not had any infections(knock wood).  Also, my air pressure level has been adjusted down to see if that helps any.  The winter is more difficult with the dryer air but I am hoping for the best.  I have a moisture chamber in my bipap and keep it at the highest level year round.  It makes for a lot of residual water in the hose, but the moisture is worth it.  I feel so much better when I use the machine and really feel it is necessary.  A humidifier in the house or room also helps.   I have heard that others use a nasal saline wash before bed but I have not tried that since all is well at this time.

I hope you will keep working at a tolerable solution.  Also, please review again with your doctor before making your decision.  Sometimes a second conversation can clarify.  There are two types of Sleep Apnea, Central where the brain is involved and Obstructive where the airway closes.  It sounds like you may have had a combination of the two, which is not uncommon.  Not sure if or how bipap will work on Central but it certainly helps the airway!

As far as the Sjogren's goes, it was very confusing trying to determine if the dryness was from the bipap or Sjogrens.  I drove myself crazy for a long time trying to figure out what was causing what and trying to pinpoint for resolution.  The doctors really only see Sjogren's as a dryness issue.  Looking online it seems like way more than that.  Fact is, all we can do is make it managable so I try to just roll with it now and look at the big picture.  For the Sjogren's I take a prescription for dry mouth daily, use eye drops regularly and have a prescription toothpaste as well.  All have helped tremendously.  It did take some time to get to this point though. 

I have not had any medical issues until these two came up so my experience with doctors was minimal.  It really has been an eye opener.  Learning how to communicate efficiently with multiple doctors for treatment has been a challenge but I am starting to get that figured out as well!  Sleep Apnea and Sjogrens are both not seen for what they really are and can do to a person, by doctors or individuals.  My experience has been that doctors dismiss them both, depending on which they represent.  Don't give up, you are your best and only true advocate!

By the way, I had an inner ear infection earlier this year and the ENT suggested that I may need to have tubes inserted in both ears if the infections continue - to allow for drainage.   So far with the nasal sprays the passages are staying open for the sinus process to function adequately enough.  I am doing so much better than I was at the beginning of the year I can't even tell you.  I would never have believed it then!

Good luck to you and... Keep at it!

It's been a while since I posted on here and I thought I'd give anyone interested an update. First, I had a lung biopsy in December and learned I have sarcoidosis, which is basically an inflammatory disease. I am on an extended period of high dosages of prednisone and so far it seems to be helping.

As far as my progress with BIPAP goes... during my BIPAP test my right ear became severely plugged up and stayed that way for several weeks. During the 2 of the 3 days I was in the hospital they had me on BIPAP and my left ear became severely plugged up and it also took weeks to subside. I don't believe either ear has completely returned to normal. I finally got my home BIPAP machine last week and have only used it once. My ears started to plug up almost immediately. I had to keep taking off the mask and trying to pop my ears. (It's like being in an airplane but the air pressure never stabilizes.) After about 45 minutes my ears were plugged up and I began to get a bad headache, so I took it off and have not used it since.

Except for the sinus pressure problems, I have no other problems getting used to the BIPAP. My mask is very comfortable (nasal pillows) and I'm sure I could get used to it in a few nights if not for the sinus issues. My ENT has told me that this is because I have Sjogren's and there is really nothing they can do about it. So for me, it's really not an option or a matter of getting used to it. I can't live and work with constant headaches and pressure in my ears and I won't risk losing my hearing, so I am returning the machine.

I understand that sleep apnea is a dangerous health concern for many people and that CPAP and BIPAP can literally be life savers. I personally know several people who swear by their machines and how much better they sleep and feel. But based on my own experience and a lot of what I have read, I think for some people (like me) it can do more harm than good. In my opinion the sleep specialists have their own agenda and do not weigh all the factors involved when prescribing these treatments. They are NOT for everybody. No treatment cures everyone, but after about a year of dealing with many doctors and doing a lot of research, I have reached the conclusion that the majority of doctors believe air pressure treatment is the "cure" for everyone with sleep apnea. (I asked about alternatives such as dental apparatuses or surgery but was told they weren't for me.) They tell me I have to get used to living with the "complications" but that's just not a reasonable expectation. 

I would like to add something about sleep positions. I have done some reading and found that sitting up is considered the best position for people with sleep apnea. I have been sleeping almost completely upright for over 6 months now and even bought a very comfortable electric recliner for my bedroom. The first few weeks I would wake up and crawl into bed for about an hour or so before getting up in the morning, but now that I am used to it I never sleep lying down and I can't imagine sleeping any other way. I used to sleep on my side and wake up every hour or so with one side of my sinuses plugged up, drool on my pillow from sleeping with my mouth open, and wake sith a sore throat and back pain (not related to sleep apnea) every morning  Now I usually wake up only once during the night (call of nature) and do not have sinus issues or a sore throat or back pain. My mother stayed with me for a few weeks after my surgery and had plenty of opportunity to watch me sleep. She said I never snore, gasp for breath or even open my mouth while sleeping in an upright position. I don't even believe I need the BIPAP machine at this point, but of course the doctors don't agree. At any rate, I would HIGHLY recommend trying this sleep position for anyone struggling with this condition, even if you use it along with your CPAP or BIPAP.

Thanks so much to everyone for your comments and advice. It's great to be able to reach out and find others to share our experiences, frustrations and successes with. Good luck to all!

Thanks for the update, Kathy.  If you are paying rental on the machine I would return it, too.

Have you thought about trying Provent?   You might not even consider it since the recliner seems to be working so well for you.  We have another member who basically can't use the machine because of the damage to his ears.  I don't think I'd risk my hearing either.

Sorry to hear things are going so poorly with your health.  Sometimes it seems it's just one thing after another.

Good luck, and keep us undated now aand then, please.

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