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Hang in there Member851026. It would be nice if you could get your son to join. Maybe if he read the struggles of others and the successes, he would come to believe it's worth working at treating his apnea. In fact on an outcomes research site, there may be enough others similarly struggling that together we can find answers. Everyone struggling needs his help....one at a time we'll get to 50,000+ members!
Well said StarSleeper! This research network and forums focus on outcomes. In the incidence of CPAP pressures being too high, a community based outcomes study might be to sort the unidentified data from the surveys for everyone on CPAP and look at the range of pressures. Then create a survey to ask about any side effects. If 30,000 people participate and 80% of the ones on a pressure greater than 15 report side effects then the researchers can look further to see what those side effects were. When they get that information they can look at it further to see what the difference was in the 20% of people with pressures over 15 who didn't have side effect. With large numbers of people participating in the surveys there is a lot of strong data that can help direct how treatment is delivered and maintained. APAP machines help keep pressures lower by adjusting it up only when needed then returning to a lower pressure. So already technology is helping CPAP users who need high pressures at times have lower pressures the rest of the time.
The results of surveys and studies like this will be posted here so everyone can get answers to a question like member 144903 asked. You can even propose a question right here on the site. It's cool how that works!
Welcome........keep us informed on your progress. Most CPAP units now have the ability to store and download information about how the machine is working. Your CPAP provider can look at that and sometimes tell if you need a pressure change or some other kind of adjustment. If no change is needed, maybe the shortness of breath is due to something else your doctor should check out..
Welcome Daria! I'm so sorry it took so long for you to find help. It would be interesting to explore why it often takes so long. There must be others out there too. Do you have any idea what the barriers were that kept you from getting apnea diagnosed and treated sooner?
Don't give up on the CPAP. I bet your body is going through a lot of changes getting used to all the great things that go on during sleep. A lot of repairing and restoring goes on during sleep. I think your body will find ways to thank you for restoring good quality sleep. Hang in there!
Good discussion, welcome. I'm wondering if your apnea was mild. Sometimes we don't notice much of a difference. Our heart and brain do but don't have a way to tell us! Anyone else have a similar experience?
Welcome to MyApnea.org. this forum is a little different from others. We look for ways to learn from others similar to us, find common issues and propose questions for researchers. There must be lots of people with apnea and reflux out there. What problems have you run into trying to resolve both apnea and reflux? Research tells us that compared to untreated apnea, CPAP tends to make reflux better . Was that the case for either of you?
I have an idea....How about proposing this topic as one of our first research surveys. Maybe the State sleep societies, AAST and BRPT could help us send out invitations for professionals in sleep, doctors and techs, to find out "WHAT TOOK YOU SO LONG?". As we discuss it here, commonalities will show up like "I thought I was too young" or "I figured I would know when it was time to get studied" or "I really didn't think about it". We could then invite researchers to review the results of our survey and discussions for a larger outcomes study. That would benefit us as professionals (healthier workforce) and help professionals with tools to nudge their patients into action. Thoughts???
Welcome to MyApnea Pam. Your story is similar to many. This is what MyApnea and outcomes research is all about. Imagine hundreds of people who struggled as you have. By comparing your experiences through surveys you can contribute to finding a way to make that journey shorter, easier and more effective. Keep coming to the site and answering survey questions as well as submitting questions you think need answering. Also invite others to join and contribute.
Welcome Barr. You certainly are not alone. The challenge is getting lots of those who avoid diagnosis and treatment to join MyApnea and contribute to the conversations. The more there are, the more likely researchers can find barriers they have in common that kept from seeking help and what they had in common that finally spurred them to action. That information will help define better pathways to get the information they need more effectively and sooner. That could add years of quality living to their life. Why do sleep techs who have more knowledge than the general public take so long to make the connection between symptoms and apnea? What got you to quit rejecting the idea of haing a sleep study?
Can you invite her to join MyApnea.org and explore apnea together? She can help others and researchers figure out why some people have trouble accepting treatment and others do it willingly. Along the way she may learn what keeps her from helping herself. That's why MyApnea exists....to improve outcomes for all those who think they might have sleep apnea and their families. There are probably thousands of people out there like her, together they have a tremendous wealth of answers to contribute.
