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Latest Activity

Brendan Duffy posted a status
"How did you slhttp://blog.aastweb.org/winners-and-losers-food-for-thought-sleep-and-athletic-success?utm_campaign=subscribers&utm_source=hs_"
Jul 9
Pat Kniel updated their profile
Jul 7
ZolliStar replied to Fred's discussion CPAP - cure worse than the disease
"I'm wondering: what prompted you to consider whether you have sleep apnea in the first place? Also, waking throughout the night isn't uncommon especially as we (*sigh*) age.  I seem to every 90 minutes or so. This pattern probably…"
Jun 27
ZolliStar replied to ZolliStar's discussion New mouth device on the market
"You can try this website:  http://zyppah.com/ I have a MAD (mandibular advancement device). Dr. Steven Park evaluated my mouth and throat (not everyone can use a MAD, it turns out) and pronounced me a candidate for it. The truth?  I…"
Jun 27
Mary Z replied to ZolliStar's discussion New mouth device on the market
"The link didn't work so me so I couldn't see the product.  I do have experience with a supposedly reliable boil and bite device.  I should know by now I have a small mouth and nothing regular size fits.  I don't think…"
Jun 27
richard graham replied to ZolliStar's discussion New mouth device on the market
"If I thought something could work other than this lousy cpap that would be awesome"
May 22
richard graham posted a status
"I moved and have been sick a lot and can't use cpap because of cough and I'm depressed a lot"
Apr 26
Fred posted a discussion

CPAP - cure worse than the disease

It's ironic that before I was diagnosed with sleep apnea in 2000, I had no problem sleeping 8-9 hours a night. If I did wake up during the night, I had no problem falling right back to sleep, and I wasn't tired during the day.From the first night I brought home the CPAP I haven't had one decent night's sleep. Not one. I don't have any problem falling asleep, but I can't stay asleep. At first I was waking up after 4-5 hours and couldn't get back to sleep for a couple of hours. Now it's more like…See More
Apr 13
Fred updated their profile
Apr 13
ZolliStar posted a discussion

New mouth device on the market

I've been hearing advertising for this product over the past few days.  It's sold as something to help snoring, but as I look at the information it seems to me that it would work just as well as my mandibular advancement device (MAD).In other words, this could help some of us with sleep apnea.Read about it here.Anybody have any thoughts about this?  See More
Mar 31
99 replied to Mary Z's discussion AHI finally under five.
"Hi Richard I mainly use an empty humidifier as it reduces noise"
Feb 16
richard graham left a comment for richard graham
"When I can afford it I'd like to get New machine with heated tube"
Feb 10
richard graham replied to Mary Z's discussion AHI finally under five.
"I would like to see this forum active again as well. I will be more aware of what's going on"
Feb 10
ZolliStar posted a discussion

If you have trouble falling asleep....

I thought that when I got my sleep apnea diagnosis, that -- at last! -- all my sleep problems had come to an end.Ha!I have trouble falling asleep. Indeed, I rarely feel sleepy at night although I do feel tired. I even cut back on computer at night, etc., etc. (and installed f.lux on my computer) but I still had trouble. Now I'm doing something different: wearing special glasses (Uvex S1933X Skyper Safety Eyewear glasses). They block out the blue -- and they're making a difference! First I tried…See More
Feb 1
99 replied to 99's discussion colloidal silver
"i have purchased some silver the make my own colloidal silver"
Dec 21, 2014
99 replied to 99's discussion colloidal silver
"just add to the distilled water it is antimicrobial eg cleans your machine and is beneficial for keeping you healthy  from bugs germs viruses you get the picture and when you need to clean the humidifier out, put water on your plants the silver…"
Dec 21, 2014
Mary Z left a comment for richard graham
"If the heated tube works with your machine I would try that.  They also make covers for your tubing which may help some.  I think the heated tube may be your answer.  Keep us posted."
Dec 21, 2014
Mary Z left a comment for richard graham
"Richard, some folks just use the humidifier in a Passover mode.  They just don't turn it on, but let the air pick up moisture without heat."
Dec 21, 2014
Mary Z replied to 99's discussion colloidal silver
"99, where have you been?  Do you add the colloidal silver to your humidifier?"
Dec 21, 2014
Mary Z replied to Andy's discussion Resmed S8 AutoSet II - No Longer Collecting Data??
"I Andy, I realize I'm months behind your post.  I have no idea why your S8 would stoop collecting data.  I'm glad to hear  you're having such improvement with your apnea.  I have made great strides since I changed…"
Dec 21, 2014
Joan
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  • Chesterfield, MO
  • United States
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Joan's Discussions

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

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. …Continue

Started this discussion. Last reply by Diana Slater Mar 12, 2012.

 

Joan's Page

Latest Activity

Diana Slater replied to Joan's discussion New to forum...Anyone else have OSA and Sjogrens Syndrome?
"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…"
Mar 12, 2012
Mary Z replied to Joan's discussion New to forum...Anyone else have OSA and Sjogrens Syndrome?
"Maybe a humidifier in the room,oo.  I understand about not tolerating CPAP because of the dryness.  Good  luck"
Mar 12, 2012
Rick Thompson replied to Joan's discussion New to forum...Anyone else have OSA and Sjogrens Syndrome?
"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…"
Mar 12, 2012
99 replied to Joan's discussion New to forum...Anyone else have OSA and Sjogrens Syndrome?
"i live in uk and was wrong to suggest you hang on to machine as there are different arrangements for different countries "
Mar 11, 2012
Kathy Mason replied to Joan's discussion New to forum...Anyone else have OSA and Sjogrens Syndrome?
"Why? It's costing me about $85 a month for 12 months. "
Mar 11, 2012
Mary Z replied to Joan's discussion New to forum...Anyone else have OSA and Sjogrens Syndrome?
"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…"
Mar 11, 2012
Kathy Mason replied to Joan's discussion New to forum...Anyone else have OSA and Sjogrens Syndrome?
"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…"
Mar 11, 2012
Joan replied to Joan's discussion New to forum...Anyone else have OSA and Sjogrens Syndrome?
"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…"
Dec 19, 2011
Kathy Mason replied to Joan's discussion New to forum...Anyone else have OSA and Sjogrens Syndrome?
"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…"
Dec 19, 2011
Joan replied to Joan's discussion New to forum...Anyone else have OSA and Sjogrens Syndrome?
"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…"
Oct 16, 2011
Andrew M replied to Joan's discussion New to forum...Anyone else have OSA and Sjogrens Syndrome?
"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…"
Oct 14, 2011
Joan replied to Joan's discussion New to forum...Anyone else have OSA and Sjogrens Syndrome?
"Thanks Mary.  I do keep my equiptment clean and also soak in vinegar solution weekly.  Appreciate your input.     "
Oct 9, 2011
Joan replied to Joan's discussion New to forum...Anyone else have OSA and Sjogrens Syndrome?
"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…"
Oct 7, 2011
Andrew M replied to Joan's discussion New to forum...Anyone else have OSA and Sjogrens Syndrome?
"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?"
Oct 6, 2011
Joan posted a discussion

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!See More
Oct 6, 2011
Joan is now a member of SleepGuide
Oct 6, 2011

Profile Information

My Interest in Sleep Apnea
I have Sleep Apnea
Treatment Being Used, if any
Bi-Level
If Machine Being Used, What Type? (e.g., Respironics M Series with A-Flex Auto-Adjusting CPAP)
Respironics RemStarPlus M-Series
If Mask Being Used, What Type? (e.g., ResMed Activa Nasal Mask)
ResMed Swift Light for her

Comment Wall (2 comments)

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At 9:42am on October 7, 2011, Mary Z said…
Joan,  as a fellow member of the forum and on behalf of the SleepGuide Crew I would like to welcome you to SleepGuide.   I hope you find the information on the site and the discussions to be helpful.  I have been on APAP for 3 1/2 years and we have complete newbies to people on the machine for many years.  I hope you will feel free to post comments, suggestions, and questions.  You never know what will help another user.

Glad you are already posting. 

 I hope you get some answers to your question. Sjogrens is not something I know about.

Mary Z.

At 12:02pm on October 6, 2011, Mary Z said…

Joan, as a fellow member of the forum and on behalf of the SleepGuide Crew I would like to welcome you to SleepGuide.  We have members from all over the world from complete newbies to those who have been on therapy for many years, and Sleep Professionals.  I hope you find the information on the site and the discussions to be helpful.  Please feel free to lurk or jump right in with feedback, support, or questions.  We value your input.

Mary Z.

 
 
 

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