Sleep apnea and its treatment are usually life-long and all the support available is needed to cope with it. In addition to the guidance provided by experts, peer support groups are important to many.
Sleep apnea is a syndrome that is usually treated without medication with CPAP. There are many different options in device management, the use of which raises thoughts naturally to those who are starting treatment or when problems occur.
Peer support is the best backbone for many, both in anticipation of treatment, at the start of the treatment, and even later, in addition to the advice of experts.
If device instruction is done in a group, there can be supportive peer relationships that will help you move forward. The group can discuss with peers and get support and information on the answers given by others.
Discussions on all kinds of issues – People waiting for treatment are concerned about many things, and they get important information about the experiences of others. As well, things can be raised by more experienced people, because not everyone has acquaintances, with whom sleep apnea could be shared. Or it could be, if sleep apnea was taken as openly as if it was asthma or arthritis. Those who have spoken openly about sleep apnea have often found that others are alike. The feeling of not being alone is important.
Group discussions reveal that access to treatment have been both easy and long and hard. Too many feel that they have had to complain about their tiredness and other sleep apnea symptoms for years without proper attention. Among them are a lot of people under 40 years old. It may also have been difficult for people who themselves have already thought to have sleep apnea, but have not convinced doctors of their feelings. Of course there are also stories of observant doctors and, for example, occupational health nurses who have noticed some symptoms, without the person himself being aware of them. Based on group experiences, you can clearly say that sleep apnea is not yet well known in healthcare. Improvements have taken place in recent years, but there is still room for improvement in diagnostics. There is also a need to shorten the time from diagnosis to starting a device treatment.
The group also clearly shows that sleep apnea is rarely the only discomfort. Group inquiries show that overweight is the most common related disease, followed by high blood pressure, allergies, osteoarthritis, thyroid problems and depression. There are also many people with asthma, reflux disease and type 1 and type 2 diabetes.
The new group members feel that they have joined to the source of information and are eager to inquire about the experiences of those who joined earlier. They look forward to being informed about whether there is any reason to worry about having a sleep apnea syndrome, how long it takes to access treatment, what types of mask options are available and will it get easier. There are no general rules or answers for many questions and care practices, and especially local resources, for guidance and implementation of care vary. However, different experiences provide the elements for building and maintaining your own treatment motivation.
However, it is good to remember in group discussions that sleep apnea treatment is very individual. What fits perfectly to someone may not be suitable for another. Therefore, for example, the best possible mask is not found in the Facebook group, but in search and experiment with the nurse. Excessive comparison can lead to false expectations. The nurse makes an assessment of the most likely mask option for the patient and starts with it. Usage is tested at the reception and then at home. If it doesn‘t go smoothly, the mask type can be changed.
The group repeatedly raises the basics of CPAP therapy – experience with the use of a humidifier, the characteristics of different masks, the maintenance of the equipment, the need for changing the filter, or fixing the straps.
However, peer support is clearly less common as with other common diseases. Poor awareness of the syndrome and somewhat different everyday challenges for patients of different ages can affect it that the local peer groups of sleep apnea have not been widely developed.
Sleep apnea support group experiences
In one small group, it was noticed that everyone had in addition to sleep apnea also other ailments.
Ann, 79, was diagnosed with sleep apnea eight years ago. The health center doctor had doubts about the possibility of sleep apnea due to breathing problems. Ann’s spouse had died a couple of years earlier, so no one was there to notice possible breathing breaks. Snoring was certainly a familiar discomfort.
In sleep studies, in addition to sleep apnea, they wanted to explore the possibility of other breathing difficulties. It took some time from sleep apnea diagnosis to start CPAP device therapy because the device were not immediately available.
“I got used to the device right away, even though I first thought that I would never learn to sleep with it. I first got a nasal mask, later I went to use a nasal pillow mask. I felt a lot lighter very soon and I didn’t sweat so much anymore. I slept better with the mask than before, when I became a widow, I slept really badly. I have experienced that the mask treatment has been very useful, although I am still pretty tired in the mornings. “
Laura, 73, got a CPAP device 15 years ago. Previously, she had some heart problems and she had antihypertensive treatment.
“The doctor discovered the possibility of sleep apnea when I was hearing the results of Holter’s heart examinations and so went to sleep studies. I myself had read an article about sleep apnea at the same time and found that I had all the symptoms. I always slept badly, also because of my asthma. As a shift worker, sleep had suffered anyway. I was working in a hospital and the last year was really hard. The shift work, which didn‘t seem like a big problem at a younger age, seemed very stressful. After the night shifts, I didn‘t recover as I did earlier, and recovery was also otherwise difficult. I got my CPAP device soon after retirement. Now I have been using nasal pillow mask for a year and it feels good. “
Sarah, 74, sleep apnea has been around for 30 years.
“Fatigue and falling asleep was strong at the time, and during the holidays, my roommate changed her room while my breathing breaks frightened her. The first night polygraph couldn’t be done in the hospital because I couldn‘t sleep in the narrow bed of the study room. The tests were then carried out at a private medical center.“
She has also other ailments – a remarkably large thyroid has had an operation, obesity surgery has been made, and asthma and joint problems are everyday troubles. There have been a lot of sinus problems and many operations. She also says she has lost both her sense of smell and taste, and is wondering whether it is due to sleep apnea or sinuses.
Martin, 79, sought treatment for snoring and breathing breaks a couple of years ago.
The nephrologist, a physician specialized in kidney diseases, sent Martin to the examinations. There were many kind of kidney problems, including kidney infections and later adrenal hypertrophy. It is a disease that can be treated with 95.5% of the patients, but Martin‘s pain became chronic. An adverse effect of kidney treatment was the cataract that has been operated. He has also been treated with skin carcinoma. Atrial fibrillation was found ten years before sleep apnea, and has been synchronized several times before a pacemaker was installed. The development of atrial fibrillation could have been prevented if sleep apnea was detected earlier. He has no diabetes.
Sleep apnea treatment has improved the quality of life in many ways.
“I don’t sleep anymore during the day, nor in front of the TV. I dare to drive the car again, I had already stopped because I felt so sleepy on the wheel. I also got rid of night-time toilet visits. I am currently using a full mask and a humidifier. Previously, I tried a nasal mask, but it caused nose problems. My own experience is that the mask size must be large enough to fit as well as possible. I’ve found that I’ve used my device now 7 300 hours and slept with an average of 7.9 hours a night. I’m very pleased with the machine. “
Gary, 74, has had night time breathing problems since the early 1990s. His worried spouse sometimes asked if he was breathing at all. He retired in 2002.
“ I got a CPAP device a couple of weeks after the study, and then the difficulties begun. I first started with a nasal mask, but it didn’t seem to fit. I didn’t get a humidifier on my CPAP. When I traveled to Israel, I had my suitcase-sized CPAP device changed to a much smaller device with a humidifier. Nose problems and mucous membrane dryness were greatly reduced. I already have a third device in use. It has a humidifier, it is remote monitored and has a variable pressure. I always carry it along with my trips. I am currently using a nasal pillow mask.”
Gary’s other ailments have been kidney cancer, with the other kidney removed. After a surprising loss of consciousness when Gary fainted on the kitchen floor, a pacemaker was inserted. Asthma was diagnosed in 2006, and he also has gout and skin- and psoriatic arthritis.
“I was always thinking that sleep is a waste of time. Before I retired, I slept 4-5 hours a night, now 7–7.5 hours and life tastes much better. I never felt asleep on the wheel, and I don’t remember feeling tired.”
Tanya, 64, remembers how a friend told her to go to the doctor for snoring.
“My husband also complained about snoring. I’ve always been a sleepy in the evenings. I received a referral from the occupational health station. In studies, sleep apnea was found to be more difficult than average. I figured that my father certainly must have had sleep apnea, because he had breathing breaks. I got a CPAP device and nasal mask in 2014, but I slept with it worse than without it and I could not use it for more than 2-3 hours. After about a year, at the end of December 2015, I quitted the treatment.”