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Latest Activity

ZolliStar posted a discussion
Sunday
liz4cps commented on liz4cps's group Prince William Co, VA support group
"I talked to Kimberlie at the Novant Sleep lab last week (at Prince William Hospital) and she said they would not be holding any meetings this year but are planning to start holding meetings again next year.  I'll let you know when we have…"
Jul 14
richard graham posted a status
"I just have mask called the Wisp. Hope it works. Anybody have experience with it. I have an ultra mirage nasal mask and get leaks at brid"
Jul 9
Andy posted a discussion

Resmed S8 AutoSet II - No Longer Collecting Data??

Hi All,First off, my apologies for not checking in for a long time.I've been using my Resmed S8 AutoSet II for almost 3 years! I feel great, have lost almost 30 lbs, am no longer sleepy during the day, sleep through the night, and have my short-term memory back.Yay!I've told my doctors that I'm the "poster child" for Sleep Apnea and CPAPs! It's been, and continues to be, such an amazing experience that I want everyone to know!Everything has been going well in CPAP-land, but in the last few…See More
Jul 7
hifay replied to richard graham's discussion mouth breathing
"What type of chin straps?"
Jul 6
Ginny Edmundson replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"No real improvement in sleep study.  Just not having to use cervical neck color.  What a bummer. Surgeon wants another sleep study in about a month or so (home one) Not sure if will do or not. "
Jun 22
Mary Z replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"Ginny, how are you doing after the tongue procedure?"
Jun 22
Mary Z posted a discussion

AHI finally under five.

I have been on CPAP since March 2008 and had a good AHI when I started therapy (under 5).Then my AHI started getting worse- for a while it stayed in the 20's, then we got it to the high teens.  Nothing we did would help.  My doctor said it was due to the meds I take.  For a couple of years I just tolerated the high AHI.  I did another sleep study and changed to an ASV machine.  For two years I still had a AHI around 11-13.  Then all of a sudden - a month ago I noticed my AHI was running five or…See More
Jun 22
ZolliStar replied to richard graham's discussion mouth breathing
"FWIW, I've been alternating between my mouth device and my APAP. I haven't used humidity at all when I use the APAP -- and don't miss it, either. "
Jun 14
richard graham replied to richard graham's discussion mouth breathing
"I still use humidity but less of it. It seems to be working OK.."
Jun 14
ZolliStar replied to richard graham's discussion mouth breathing
"I rarely use the humidifier. I think it's less necessary during the summer when there is humidity.   I also switch between my mouth device and the APAP.  I like each for different reasons. Not sure with which I sleep better, though.…"
May 21
Mary Z replied to richard graham's discussion sick again
"I've been doing well.  I think you were going to try the cpap without humidity- did that help at all?  I haven't had a cold for a couple of years."
May 14
Ginny Edmundson replied to richard graham's discussion sick again
"CPAP seems to cause stuffiness in many of us.  ANother reason I hate it so much!Do you rinse your nose with saline once a day…maybe before you go to bed for the night? "
May 5
richard graham replied to richard graham's discussion sick again
"I do wake up stuffed up most days"
May 5
richard graham replied to richard graham's discussion sick again
"I do have non allergic rhinitis. Now I'm thinking that's probably it because I only feel that way for a day or 2. Thank you"
May 4
Ginny Edmundson replied to richard graham's discussion sick again
"I have been lucky.  Not one cold past three years. Could some of your problem be allergies?"
May 4
richard graham posted a discussion

sick again

It seems like I am sick with colds more often when I'm on the CPAP. Anybody experience that.
Apr 30
Ginny Edmundson replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"As of now I no longer have to use a chin strap.  I am anxious about the sleep study.  Wondering if I will be able to sleep WITHOUT the CPAP….even thought I hate it it is a part of every night now and is what I am used to.  "
Apr 20
Clueless in Redwood Shores replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"I had it on the same outpatient basis.  Much pain, no long term gain.  I did not have the annual repetition - that might or might not have made the difference. "
Apr 20
Mary Z replied to richard graham's discussion mouth breathing
"glad to hear it, Richard.  Keep us posted."
Apr 13

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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I am disabled and travel is really, really hard, but I needed to make 3 trips this year. Two were by plane and one was in a car. No problem with the car, however, I did not want to pack the cpap ( and it was good because on one trip, some items were stolen from my luggage) and I can't deal with taking it in the cabin. So, I left it at home, with much displeasure because I use it all the time at home, even for the rare nap. The only time during my 14 months on cpap that I did not use it was on those two trips, If I had someone traveling with me that could assist me in carrying the cpap, it would work, but I did not.
Checking a CPAP as baggage is not a good idea. It's too fragile. Take it on the plane as a hand-held carry-one. It does not count toward the carryon limit.
To breath or not to breath, that is the question...for the sleep apneic to decide.
As for me, I prefer breathing.
Hi hugh --- look into buying a d/c to a/c inverter --get a deep cycle battery like the kind they use on trolling motors in boats - give it a good charge before ya leave on that camping trip then just plug the c-pap into the a/c plug or cord comming from the inverter . you can recharge the battery every day off of your car -truck-or suv by simply using jumper-cables and starting your vehicle for a while -- lots of different ones available so have fun shopping .

Hugh said:
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?)
Homeland Security rules (TSA) now demand that c-pap or bi-pap machines MUST be carry-on and NOT checked in as stowed luggage because they need to be checked out by tsa personel . You will be required to take the machine out of it's carrying case and put it in the basket so it can go through the scanner. They will not need to look at the mask or the tubing and although they are wearing gloves there are also plastic bags you can put your machine into before they are handled .Most machines will have the approprate sticker on them ; if you have an older machine it might not be stickered so check with your DME . It also helps to carry a letter from your sleep center doctor . most of them have these letters ready to go for you to pick up --- just ask
I just returned from a trip that required flying and these were the rules in place as of 9-21-2010
Sunnyway said:
Checking a CPAP as baggage is not a good idea. It's too fragile. Take it on the plane as a hand-held carry-one. It does not count toward the carryon limit.
Mary Z

This might sound really stupid but why would you not take and use your CPAP? If you take medication, do you stop taking them on vacation? Maybe we don't want to know the answer, however, your CPAP is medication.

I take mine and use mine for all naps. I love the quality sleep and the idea of not getting an enlarged heart or some Cronic Heart Failure.

Some say it's so difficult and granted I don't know their physical limits but once you realize what the CPAP is doing for you, I think most would or they would find a way to take it and use it.

P.S. I don't know why you posted Mr. Wisdom's message. Lets get out of grade school.
Hello...I take my machine with me whenever I am going to be somewhere overnight. I don't sleep well at all without it. I also don't want to scare anyone near me when I stop breathing...the snoring is awful too. LOL When my family travels, my machine and my partner's machine goes with us. The youngest is awesome about making sure we have them. She kinda likes her Mom to be able to sleep without keeping everyone else up. LOL I don't have any issues with the airport since learning how they need it set up to do their test. I have flown a few times with my machine. I take it as a carry on (they can't hold you to the carry on limit as it is medical equipment) and it is the first thing to come down from the overhead compartment when ready to depart the plane. My husband is awesome about making sure I have it when we fly. My advise is to always use it when ever you are going to sleep...whether it is a nap or regular sleep. Goddess knows I do! LOL Take care and thank you!
Condolences to her family.

Four out of 18? In a heart support group I attend, the NP said half of heart failure patients have sleep apnea. This is an astonishing statement. Possibly others have sleep issues, and just don't know it.

I'd love to see a 30 year study of a large group of people, compared the health results of those with no sleep issues, and those with untreated sleep issues. Of course you could not ethically do such a study -- once you found out someone had sleep issues, you would have to treat them.

I'd love to see the rate of fibromyalgia, heart disease, MS, arthritis, cancer, etc, in both groups.
I always use my machine, taking it with me on overnight stays.

I can't imagine sleeping without it. Several weeks ago we were without power for a few hours and I got the worst sleep ever since I kept waking up and couldn't get into a deep sleep due to the anxiety of not having my trusted friend with me (my machine).
remstar system one
pressure 6-16
no humidifier.... obviously using one will greatly reduce the longevity of battery power.


009 said:
Hello Chris,

What type of PAP device are you using and what is your current pressure? Are you using any pressure release on exhalation? If the heated humidifier was used, what setting was it set at? I would be curious to know as all of these items will have an impact on how long the battery will last!


On a recent vacation my husband commented how much more he enjoyed going places with me. I have more stamina and
mental energy to enjoy a trip to a museum or historical tour. Before I just wanted to crawl into a corner and take a nap between events. Of course I take my CPAP!!!!! I am looking into a battery pack so I can go camping. Any suggestions? Brand/Type ect.
I agree with that suggestion. only makes sense. CPAP is the gold standard/ ideal treatment, but some treatment is better than no treatment.

Bob Crothers said:
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?

Thanks,
Bob

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