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Latest Activity

liz4cps commented on liz4cps's group Prince William Co, VA support group
"BluePoint Medical* holding their next Remedy event on June 4 with Terry Cralle, RN on "Sleep in the Mordern Family".  They will also be checking CPAP machines and providing breakfast. Click on link above for more…"
May 7
Dan Lyons posted a discussion

CPAP & Dry Mouth

In recent months, I have developed extreme dry mouth as a result of the CPAP.  I am a mouth breather when using CPAP.Recently, I saw an advertisement for the symptoms of dry mouth, but as usual, when I need the information to have a discussion with both my primary care  physician and my dentist I haven't seen the ad. Has anyone else seen the ad and can anyone remember the info in the ad?Thanks in advance,DanSee More
Mar 30
richard graham posted a status
"My deductible is double what a machine is online but I can't get the machine set up. Any ideas?"
Mar 10
BeeAsleep posted a status
"Hi all. I am just checking in and saying hi after being gone for a long time. I am doing GREAT! Just got a new machine and mask. Feel like I"
Jan 23
BeeAsleep updated their profile
Jan 23
99 replied to Fred's discussion CPAP - cure worse than the disease
"Do not turn light on as this hinder you from falling asleep or choose red light instead which do not afect your sleep"
Oct 27, 2015
99 left a comment for Joan Williams Rice
"Hi Joan visiting pelham and I have osa"
Oct 27, 2015
99 left a comment for martha crabtree
"Hi maths visiting pelham "
Oct 27, 2015
99 left a comment for Rhonda Harrison
"Hi Rhondda I am visiting pelham and have osa "
Oct 27, 2015
99 posted a discussion

Leaky gut

Do you have a leaky gutHow would you knowA telltale sign for leaky gut is Athletes footI wish to ask do you have or suffer from itThe reason I ask is maybe this is a common denominatorJust text yes or text noAnd if you are the first to text also keep a tallyExample38 yes 0 noYour input would alter the tally39 yes 0 noSo now I will input first1 yes. 0 noSee More
Sep 26, 2015
richard graham posted a status
"For the first time in a while I got a whole night sleep with my machine but woke up beat and left side of my head feels weird, not sure if"
Sep 2, 2015
Brendan Duffy posted a status
"How did you sl"
Jul 9, 2015
Pat Kniel updated their profile
Jul 7, 2015
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, 2015
ZolliStar replied to ZolliStar's discussion New mouth device on the market
"You can try this website: 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, 2015
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, 2015
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, 2015
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, 2015
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, 2015
Fred updated their profile
Apr 13, 2015

I just recently went on vacation with 18 other people.  Four of us are diagnosed with Sleep

Apnea.  I decided to try and talk to everyone about their machines and compliance.  Three of us use our machines regularly and one has put it in the closet.  No one else knew anything about the settings on the machine or had any interest in seeing/tracking their own data. Everyone, except the woman who is not using hers brought their machine on vacation.  I did not get to talk to the woman not using hers any more about why.  Her roommate told me she was not using it, but before I could ask her why, she got a message that her 57 year old brother had died in his sleep and she went home.  I don't know why her brother died, or if he had OSA.

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Replies to This Discussion

Thanks for you welcome note, Mary.

Hate bringing my machine with me but have no choice. In addition to the sleep apnea, my nose is stopped up 24/7 and closes up so much that I can't breathe when lying down. I was offered surgery with no guarantees, tried every med on the market. Then used Zicam (which worked better than any prescription) and lost my sense of smell, now use the Breathe Rite strips with the machine. Was told to lose weight because it would help and I lost 37# with no change in the apnea. I turned down a great opportunity to teach English because the remote village didn't have electricity.
i bring the machine with me every single time i sleep away from home. if i didn't have it one night, i think i would panic at first, then just set up pillows so that i'm as elevated as possible in the bed to counter the force of gravity on the tissue in the back of my throat.
I have seen posts from some people who feel that they shouldn't need to use their CPAP while on vacation, camping, or on a business trip. I have no idea where these people are getting the idea that they don't need to use their CPAP while away from home. Are DMEs telling people that they don't need to use their CPAP while on vacation?
I always take my CPAP with me when I go on vacation. I was diagnosed with Apnea over 10 years ago and have only missed using my CPAP two nights in that time.
I always bring and use it on vacation and I get my BEST sleep on vacations. The distractions of being at home always keep me up later and thinking about commitments for the the next day always wakes me up early or in the middle of the night. It would be such a shame to waste the opportunity for great sleep without the machine. (I love vacations).

But I haven't been camping in the years since my diagnosis and getting the machine (and having two kids)- I'm not sure what I will do the next time I go camping! (What are the options for going camping without an electrical outlet near your bed with a CPAP?)
I do use my CPAP everytime I sleep. Naps, nightime, away from home, they all get me on the hose. I love the sleep I get when I use the CPAP, and I hate the lack of sleep I would get without it.
Simple, I use CPAP when I sleep, wherever I sleep. It is for my health. We camp and go on trips and do all the things normal people do, I just have an extra bag with me. No problem as I see it.

I do hope more people will get the message that if you have OSA, you need to use a CPAP when you sleep.

I just got my cpap in feb. so don't have a lot of experience with it yet but I did go camping with it twice this summer, the second time for a week and a half, and it worked just fine. Slept really well. I brought along a marine battery to power it. I plan on bringing it on all vacations in the future.
1. If one uses a CPAP/APAP machine - it is not for pleasure but rather is for sustaining life and anyone who would go on vacation and not take it with is not thinking straight.
2. Not only do we take our APAP machine with us on vacation; we take our spare as well (but leave the humidifier, etc. at home). If we are going somewhere that has regular power issues/outages, we leave the spare and take a UPS with us.
3. Most folks who put their CPAP machines in the closet have no clue as to the importance (URGENCY!) of using CPAP once diagnosed with OSA/etc. It is LIFE sustaining and is considered by law as such in the United States and most airlines to the extent that it may be brought into the cabin as carry-on without being counted as carry-on luggage. These folks simply don't get it.
4. The gal that lost her brother at 57 in his sleep? I would bet my bottom dollar, barring any terminal illness that was missed, that the brother died as a result of having OSA/etc. and NOT being diagnosed or being diagnosed and not compliant. Regretably, MOST ALL cases of "he died peacefully in his sleep" are the result of untreated OSA. Untreated OSA causes many critical organs in the body to perform below par but the biggest threat comes from SpO2 desaturations during apnea/hypopnea events; when the blood oxygen saturation plummets, the blood pressure can spike sky high, causing heart attack, stroke, aneurism, etc. And as "he died peacefully in his sleep" a post-mortem is rarely done.

I not only have a data recording APAP (ResMed S9 Auto), I also have a fingetip pulse oximeter to provide myself and my MD's with a fuller picture of what is going on with my body even with APAP in use. The use of APAP/CPAP is no guarantee that your SpO2 is remaining in the 'healthy' range. In terms of what paramedics are taught? Any SpO2 below 90% is considered to be respiratory distress and O2 is administered. I would be willing to bet that most CPAP users have no idea of what their SpO2 is on a regular basis. A pulse oximeter (Contec CMS50E for example) is about $120 and can save your life in the long run.

I would not dream of going on a vacation anywhere without one of my APAP machines in tow. Out of the question. Period.
I always bring my CPAP. I travel alot for business and it's always with me. I have the airport routine down.

Ashburn, VA
If I want to sleep comfortable while on vacation, I have to take my machine with me. I hate taking it through airports, because they practically dismantle it to check it out. We usually take driving vacations, so it is no big deal. I have found, however, that I must carry a 3-way plug. Not all motels/hotels have adequate plug-ins.
I would rather miss my flight than get on in without my faithful friend :D Holidays are very precious to me, and no way would I ever ruin a holiday through extreme tiredness/exhaustion. I also take more than one mask with me, just in case...... I agree with Karen too, and am always stressing the importance to people of using CPAP even for daytime naps.
I have been taking my machine on business and vacation trips. However, I have been told that one can mitigate the effects of leaving the machine at home, by substituting an oral (mouth piece) device for short trips.

Could/would anyone care to weigh-in on that suggestion?


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