Exploring A.W.A.K.E. and Other Available CPAP Support Groups
The challenges to constant compliance when it comes to CPAP therapy are many and varied. Just as every person living with sleep apnea is different, so too is their condition and the challenges that they may experience with CPAP therapy. Many users are able to transition to CPAP therapy with minimal disruption and go on to years of higher quality of life standards. Others, however may need the support of other users and experts. Fortunately, outside of family, there are CPAP support groups that every user can turn to in order to get answers to questions or just provide encouragement that can help them stay well rested, healthy and compliant.
One of the most widespread CPAP support groups is known as A.W.A.K.E., which is an acronym for Alert, Well, And Keeping Energetic. This phrase has been common among sleep therapy professionals and the medical field in general for quite some time and pretty much sums up the goal of CPAP therapy.
A.W.A.K.E. is a national CPAP therapy education and support group with chapters in every state and more being developed wherever the need arises to help people face to face and free of charge. The format of most meetings allows for individuals to ask questions and to share their experiences with treatment.
According to an article in Sleep Review Magazine, the A.W.A.K.E. Network of support groups was established in 1989 by Lucy Seger, with the support of a committee made up of Joyce Black, Nancy Kern, Jean Hardy, and Linda Napierala to provide support to CPAP therapy users. Although the non-profit now operates in full support and cooperation with the American Sleep Apnea Association (ASAA) A.W.A.K.E. actually predates the creation of the ASAA by one year.
The article further states that “Today, the nearly 300 groups around the United States and in British Columbia, Canada, that have signed statements of understanding with the ASAA provide a place for sleep apnea patients and their families to go for three things: mutual support, continuing education, and empowerment.” A searchable A.W.A.K.E. database can help CPAP therapy users find the closest group.
Coordinators routinely find and books speakers that are experts or that can provide unique perspectives on CPAP therapy, sleep apnea or other sleep disorders. This takes the scope of the meetings beyond support and help with CPAP therapy to the many ways in which it impacts daily lives beyond the therapy itself to the working world, family life, relationships and much more.
A.W.A.K.E may be the largest and most widespread of these CPAP support group networks, but it is far from the only one. Most every University hospital, local or regional sleep center, and quite a number of physician and health practices provide CPAP support groups in one form or another. Some are weekly and open to anyone while others are by appointment or by phone. Some are associated with health-oriented non-profits and may provide support forums that are online only.
One of the most popular online forums is known as Apnea Board.com, which is run and started by CPAP therapy users. The board does not have non-profit status and therefore relies on donations from its member users to help keep it going and expanding. Like other support groups, users can find hundreds if not thousands of CPAP therapy users as well as experts that can provide support advice and guidance for all aspects of CPAP therapy and living with sleep apnea. Another is the Free CPAP Advice Forum.
Major manufacturers in this space also are known to provide online forums for their users that bring experienced users and professionals to the table to answer questions and provide support to the users of their equipment. Regardless of the source, all of these CPAP support groups are centered on reassuring patients that there are others just like them and there are strategies for overcoming most CPAP treatment compliance challenges.
Finally, The CPAP Shop continues to do its best to not only educate but provide assistance to users who are having difficulty adjusting to equipment. As experts in the field who have logged thousands of minutes of call time with users, we are uniquely qualified to be a quick and easy point of contact.
Author
Chris Vasta
Over a 10+ year career at PHH Mortgage managing a $100 million portfolio, Chris Vasta learned the ins and outs of the business world. He learned how to establish business relationships, lead a multi-prong team, and implement strategies for long-term growth. In 2007, Vasta used that experience to transition his role into president of The CPAP Shop. Over his tenure, Vasta has been involved in everything from website design to warehouse layout. His hands-on approach with customers has evolved into an in-depth understanding of the challenges of beginning and adhering to sleep therapy. He often provides his insights on product…
I use a Resmed 10 device, and clean it each day with a SoClean device. I have a persistent runny nose with violent sneezing. Does anyone else have the same problem? My doctor and equipment provider are unhelpful. I tried increasing the humidity of the airflow, and that may have helped a bit. Any suggestions welcomed.
Hello, Bob. The Soclean2 Sanitizing machine is only intended to sanitize, but will not clean. Your nose may become dry from CPAP therapy, which can cause sneezing. It makes sense that turning up the humidifier would help. If you have not used the prewash on the mask before you put it into the Soclean for the first time, you could be having a reaction to the manufacturing release agent on your mask. You would want to wash any new mask, or at least wipe it down before you intend to you it. Perhaps switch up what you are currently washing your mask with an alternate cleaner. Lastly, if you have the Philips Respironics Dreamstation using the preheat option may help.
I’ve been on Cpap since November 2018. For the last 4 months or so, I’ve had an issue with acne. I use a SoClean on a daily basis, I switch between 2 different masks and I use mask liners. I’m now on antibiotics. Any suggestions….PLEASE???
Hello, Robin. If you are not already doing so, I would recommend wiping down or washing the mask cushion after each use. You may also be having a reaction to the material the cushion is made up of. You may want to look into a mask liner to act as a buffer between your skin and the cushion. We carry the Slient Night Liners and Remzzzs. I hope you are able to find a solution.
I have issues with Dry mouth, when I use my AirSence 10, with a Simplus full face mask. I also use the humidifier and I just added a heated air line, to see if that would help with my dry mouth. The heated air line is self adjusting for my needs and my humidifier water tank is almost empty when I get up each day. I don’t want to adjust the humidifier settings, because in the morning I am having some squeaking noise from the mask hose rotating connection and the air exhaust on the mask.
Any ideas for my dry mouth?
Thanks,
Steve
Hello, Steve. The heated tube is intended to help prevent rainout, which is term for moisture build up in the tube. However, the heated tube will not help with prevent a dry mouth. If may help to use Somnifix strips or a chin strap with your Simplus mask. It may also help to to drink a bit of water before going to bed. Here is the link for the Sominifix mouth Strips, which are skin friendly adhesives with a vent in the seam of the lips, used to keep the mouth shut:https://www.thecpapshop.com/somnifix-mouth-strips
Chris,
Yes, I was having rainout problems and I have tired setting my AirSence 10 humidifier to 6 and still had dry mouth issues. My Dr. wants me to try Salagen (pilocarpine) 5 mg tablets. But, with the long list of side effects, that worrying me. So, I would like to stay away from that. So, my next step will be to try a chin strap. But, with the level my cpap machine is set at, my wife says I have
blowout (my lips blow out 🙁 ) problems. So, I will try the chin strap and try and make my wife happy 🙂
Thanks for the help,
Steve
Hello, Steve.I can understand why you would want to avoid the side effects of Salagen. I hope that the chin strap or Somnfifix mouth strips work well for you. If you have a higher pressure the Topaz Adjustable Chin Strap or Super Deluxe Chin Strap would likely be your best bet. https://www.thecpapshop.com/topaz-adjustable-chinstrap and https://www.thecpapshop.com/super-deluxe-chin-strap-1
I’ve just been diagnosed with OSA and was given a CPAP just 3 days ago. I have a very small nasal mask but I suffer with claustrophobia and I just cannot keep it on at night. I know it’s very early days but at the moment I just don’t feel that I’m going to get used to it. I keep being told that I will feel like a new woman and I very much want that but I want to ask how on earth do you get used to sleeping with such a big mask strapped on.
Hello, Natasha.
Some things that may be helpful are:
1. Practicing wearing the mask while you are awake, which may start to make it feel less foreign.
2. Try wearing the mask in increments. Wear it for the mask for long as you can and gradually increase the time frame.
3. It may help to try another mask. The masks are kind of like shoes and it may take a bit of trial and error to find the one that works best for you.
The Philips Respironcis Wisp mask or dreamwear are some of the more minimalistic masks.
https://www.thecpapshop.com/respironics-dreamwear-nasal-cpap-mask
https://www.thecpapshop.com/respironics-wisp-nasal-mask-bundle
Thanks Chris. This is the mask that I have
https://www.1800cpap.com/resmed-airfit-p10-for-her-nasal-pillow-mask?quantity=1&size=All%20Sizes
I thought it was as minimal as I could get. What I’m struggling with is breathing with my mouth closed whilst having the mask covering my nose. It goes against natural instincts.
But your suggestions are good ideas so I’ll definitely give those a go.
Thanks so much
After 2 months on CPAP I still feel tired and like I need “air” after waking.
Hello, Janet. There may be an underlying medical issue at hand, so I would advise you to discuss this with your physician.
I’ve been using the CPAP for 5 days and instead of better I feel a lot worse.
Hi Julio
many patients have issues getting used to using PAP therapy. luckily, PAP therapy is extremely effective once patients get used to it. focus on how good you will feel once you get accustomed to it.
I initially go to sleep with my mask on. Within a few hours I wake up and can’t go back to sleep with the mask on.
I have been diagnosed with idiopathic hypersomnia and sleep apnea.
Hi Elaine,
We always recommend consulting with your physician and reviewing your sleep data from the machine. He or she may be able to make some recommendations in your case.
I have been on CPap for 2 weeks now. I am using a full mask. Having trouble getting more than 4 hrs. Sleep. When my face relaxes before sleeping it often starts leaking. Other problems.
Hi Marie,
Congratulations on sticking with it despite the mask leaks! Let’s see if we can help you. We would suggest you check the sizing since a leak is generally a sizing issue. You can also try mask liners to help with the leaks. We’d love to see how you resolve this issue.
I had the same problem because I roll over onto my sides. I tightened the straps on the headgear and it is much better. I have had techs questions about why I have it tighter but it seems to help.