Exploring A.W.A.K.E. and Other Available CPAP Support Groups

January 28, 2015 | CPAP Tips & Tutorials |
apnea-support-forums

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.

Chris Vasta

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…


34 Comments Leave new

  • jim morris

    Like others I get 3 or 4 hours sleep and wake up with a dry mouth leaks at various places and yes I have to tighten to stop and really cant get back to sleep. I wear a full mask airfit 20 my therapist said that is probably best for leaks. I have had one good nite sleep in 2 months it is taking its toll. Anyone had good results with the Amara full face mask? Thanks I will try the liner

    • Chris Vasta

      Please contact our customer service team at 866.414.9700. They can provide you with alternative recommendations for masks that might work better for your needs.

  • Ralph Lloyd

    I’m using Philips Respironics for ASV therapy for several weeks.
    I religiously log my sleep hours with number of central apneas, obstructive apneas and hypopneas.
    The Dream Mapper app is going down this weekend for “maintenance”. I get this data from the app on my phone which connects to the PAP machine via Bluetooth.
    The only data I see on the machine itself is hours of sleep. what buttons do I push to get more information from the main machine while the app is down?
    Thanks in advance.

  • Pat

    I have been using the F20 with memory foam since 2019 and have developed huge bags under my eyes. I am always seeing remarks not to over tighten the mask, but to be awakened with air blowing into my eyes as well as the hissing sound is very frustrating. The only way to stop the leak is to tighten the mask. The pressure used for my therapy is too high to use a nasal mask. Any suggestions would be helpful. My sleep therapist is useless.

    • Chris Vasta

      You should not have to over tighten the mask to make a good seal. You may want to make sure you have the correct size regarding the ResMed AirFit F20 Touch mask. To stop minor leaks you can incorporate a mask liner, such as the Silent Night Mask liners. It is also important to maintain a regular replacement schedule to ensure the equipment therapy remains effective. If you have not replaced your cushion recently, that would be a good place to start. Another thing to consider is the airflow of the room and humidity. If you are currently using a humidifier, but the air in your bedroom is dry, perhaps incorporate a stand-alone room humidifier to add more moisture to the room.

  • Paul St. Jean

    Had been using an F20 full face mask for several years with favorable results with AHI numbers well within the desired ranges. Then, out of the blue, my numbers began to rise consistently into double digits with leakage. My therapist switched me over to a F30 nasal type mask about a month ago and the results have been nothing but disastrous ever since. I check my AHI every morning for the previous night. With the new mask I’ve only had two readings that were below 10, with last night’s reading bein a whopping 23.8. Machine report shows the leakage symbol (red face) almost every night. I went to the therapist last week for a mask check and refitting, but the high numbers and leakage continue. I’ve been a compliant user since 12/12/12 and have never missed a night of theraphy. My machine is a Resmed S10. What do I do?

    • Chris Vasta

      Perhaps ask your sleep therapist why they decided to switch up masks. A mask liner may help reduce the minor leaks, but if you were having success with the ResMed F20 mask, I would suggest sticking with that mask.

  • damien

    It don’t matter how tired i am i have taken sleep aids in hopes of sleeping at least 6 or more hours with my mask on but i still wake up within 2 hours it never fails..i told the therapist and she don’t wanna do anything about it.it has taken a toll on me mentally and physically and i really need help please any suggestions ?

    • Chris Vasta

      You want to make sure you are keeping up on the maintenance of the mask cushion and that you are not over tightening your mask headgear. Clean the mask cushion daily, and perhaps try wearing the mask for a bit while you are awake to get used to wearing the mask.

  • Charlette Davis

    i have used a cpap machine for 3 years now. Every day when I wake up I have to wait for all the marks and lines in my face to disappear before I can leave the house. Have tried several masks types and sizes. Does anyone else have this problem?

    • Chris Vasta

      A mask liner may help prevent some of the lines and indentation from occurring. Also, keep in mind to not over-tighten the mask headgear. If the headgear is too tight could be causing the imprints on your face. You only want the mask to be tight enough to create a good seal.

    • Phyllis

      Have you tried the mask that fits under your nose. That worked for me

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