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Sjogren's and Sleep Apnea

This area is for Sleep Apnea questions and general Sleep Apnea Discussions.


Sjogren's and Sleep Apnea

Postby sleeplessinsc » Sat Mar 06, 2010 11:42 pm

Hello,
I was just diagnosed with mild obstructive sleep apnea. I also have very dry eyes and peripheral neuropathy (wake up with tingling arms, hands, legs). I suspsect I have Sjogren's, and I was wondering whether there is any relationship to that and OSA? The reason I ask is I tried using the masks in my return sleep study with the CPAP machine, and it was awful. I felt like I was being suffocated, and my nose hurt and still does hurt from it 24 hours later. I was only on the machine for 2 hours and had to leave in the middle of the night--I felt like I was being smothered by the machine.
Anyways, just wondering how to cope to get used to the machine.
Thanks!
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Postby Mary and CPAP » Sun Mar 07, 2010 2:38 am

I don't know if there is a relationship between Sjogren's and sleep apnea, but there are ways of coping with dry eyes and dry mouth while using CPAP or related treatment equipment for sleep apnea. There are many types of masks, so if you had difficulty with the one you tried at the sleep study, there are likely to be others that will be more comfortable for you.

I also have a problem with dry eyes and dry mouth. I use preservative-free eye drops before going to sleep and sometimes during the day. There are a number of brands over-the-counter, as well as prescription Restasis, in case you have not tried any of these. Treatment for sleep apnea should not make dry eyes worse but you should mention your symptoms to anyone prescribing sleep apnea treatment for you. As for dry mouth, if you already have dry mouth before starting CPAP, your physician should prescribe a humidifier be included with the CPAP machine. That will help somewhat. If you use a nasal pillows or nasal mask that does not cover the mouth, you need to keep your mouth shut so your throat does not become dryer due to the mask I use a nasal pillows mask and find that the air from the machine helps keep my mouth shut, but some people need a chin strap with such masks to keep their mouth closed. A room humidifier and drinking sufficient water also help me. Another option is a full face mask that covers the nose and mouth, which is essential if you breathe through your mouth. You should try on at least one of each type of mask--full face, nasal, and nasal pillows--while lying down so you can find out which type is most comfortable for you. Within each type of mask, there are a number of models. A durable medical equipment (DME) can help you determine which model of mask is most comfortable for you. Every face is different and different people prefer different masks.

If you are not being treated for Sjogren's, I would get a diagnosis and treatment for that, as well as the cause of the neuropathy. I believe Sjogren's is treated by rheumatologists. I was diagnosed with it once but not in subsequent tests.

If you have not gotten a detailed copy of your sleep study results, be sue to ask for a copy to provide to your physicians and also to keep for your own use as you learn more about sleep apnea. Did the sleep study indicate restless leg syndrome as well as sleep apnea?

There are a variety of types of CPAP machines and masks, so if you didn't like the one used during the sleep study, there are other types of both. A key to successful treatment is finding a combination that fits your particular needs and that is comfortable for you. It is a hurdle we all have to go through and sometimes finding the right combination involves trying a number of different masks.

Since you said your sleep apnea is mild, another treatment option that may help you would be an oral device that keeps your airway open. It should not affect your eyes. If you decide to explore that route, I would recommend finding a dentist that specializes in treating sleep apnea. I have used an oral device for TMJ problems. A custom-made device fits over the teeth and can be quite comfortable during sleep. Usually, oral devices alone are not considered sufficient for severe sleep apnea but they sometimes are effective in mild cases of sleep apnea. If an oral device sufficiently treats your sleep apnea, you would not need to use CPAP-type equipment with a mask at all.

The most important thing is for you to find a treatment that you can use every night so your conditions do not get worse. The right treatment will make your sleep much more comfortable and improve your overall health. Don't despair. There are many options for treating sleep apnea and no single solution fits everyone. You were given only one option to try during the sleep study, it appears, and there are many others.

Mary
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Postby mcbrian33 » Mon Mar 08, 2010 12:16 am

Sleep,

Well, I'm VERY familiar with auto immune diseases and CPAP.

Before I start in on this, I'm going to give you a disclaimer:

My results are not typical, and I am not saying that ANYONE with ANY auto immune
disease will have similar results from CPAP! I have only heard of two other people who has a
similar story to mine, so it is rare.


The Short Story:

9-years ago my wife, an RN, told me I stopped breathing in my sleep.
3-years I was diagnoses with Rheumatoid Arthritis and it took nearly everything I had; my career, cars and health.
October of last year, after some drama, I started CPAP.
3-days after starting I was disease activity free!
At present my Rheumatologist has titrated back all of my RA meds until I am taking only a half dose of Arava and he will likely take me off of when I see him next. Previously I was taking 2x the normal doses of Humira, 2 disease modifiers, NSAIDS and pain killers and it wasn't having an effect on the disease to even do my daily basics of life. At 37-years old I have enough joint and nerve damage to last a lifetime, though I am disease activity free.

I can't tell you this will make any difference for you, but for me and the few others I have met with like success stories; sometimes it makes a world of difference!


No matter if it helps the Sjorren's or not, it still is a therapy that will improve your quality of life.

McBrian33
Last edited by mcbrian33 on Tue Mar 09, 2010 12:19 pm, edited 1 time in total.
Retitrated 2/10 to 10cmH2O
Respironics SystemOne, FlexFit 407 \:D/
Wife & I became hoseheads 30 days apart O:)
I also got a "I TOLD YOU SO" nine years in the making. :roll:
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Postby Vicki » Mon Mar 08, 2010 8:51 am

I was diagnosed with "fibromyalgia" before I knew I had OSA. I was in so much pain, I collapsed and was taken to an urgent care. I also developed a rare arthitis (as seen by symptomology and positive blood work). Both gradually went away after treatment for my OSA and 11 years later, have never returned. We do hear stories like this all of the time, especially for fibromyalgia.

The peripheral hypoxia probably does damage and sleep disruption causes increased pain sensitivity. People with "mild" apnea can be as symptomatic as those with severe. Mild, moderate, severe only tells you how many times an hour you are having an apneic event. It does not tell you how long those events last, how disruptive they are to your sleep or how much your oxygen levels desaturate (these are also in your sleep study report).

If you had the mildest OSA possible, an AHI of 5 events/hours. Over the course of 7 hours of sleep, you are still not breathing 35 times. That with the factors above can wreak havoc on your body.

Take the above advice and find a mask or dental device that works for you. You can find a dentist who specializes in sleep medicine by contacting the licensing organization which is listed in the top stickies of the "Oral Device" forum.

Surgery may be an option too, but it should be a last resort as to work it should follow the Stanford protocol, which is multiphasic, very invasive, life altering and from the posts here (put UPPP in the Google toolbar on the left) the most extreme pain posters have experienced. Good idea to try other, simple, non-invasive options first.

Keep us posted!!

Vicki
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Vos Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.
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Machine: DeVilbiss IntelliPAP
Mask: Fisher & Paykel Flexifit 431
Humidifier: Rarely as needed
Year Diagnosed: 1999

Thanks

Postby sleeplessinsc » Mon Mar 22, 2010 6:19 pm

Thanks everyone for the advice. I got the report sent over to a dentist, who I will see tomorrow. I will post for advice for that. :-D
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