Top Topics
Welcome Kate. Your autism makes your story unique but the challenge to find treatment is one the sleep community is prepared for. Don't give up. Seeking help for sleep apnea is NEVER a mistake. Your autism specialists can likely work with your sleep doctor to find a solution to treat your apnea.
Is there anyone out there who has autism, an anxiety disorder or other similar issues that made treatment especially challenging?
MyApnea and the forums provide a place to share stories, find similar challenges and solutions then study them to provide answers for everyone with sleep apnea to get individualized treatment. Keep posting your story as you progress with your treatment.
Thanks for sharing your story. Are there any others out there trying to help a family member get help for their apnea? How about anyone who finally succeeded in getting a family member to seek treatment? What are the barriers? What helped spur them to action? Does having an untreated family member affect relationships in the family?
Welcome to MyApnea bash. You are a great example of someone who has struggled but focused on your overall health, overcame the struggles and is heading to a good outcome. This website is focused on learning what helps and hinders people from getting good outcomes then using that information to help improve outcomes for everyone. What was the most important thing that kept you from quitting your CPAP ? How about other forum members...what was most important in making you successful with therapy?
Hi Denise. Welcome to MyApnea.org. I wonder how many others have a similar story. Snoring is so common we think it's normal and dismiss it even more if the snorer is young and/or not obese. Glad you felt so much better with the CPAP but hate to see you put up with a poor fitting mask. Sometimes your CPAP supplier can help make adjustments in the straps other parts of the mask or can add a "liner" to help the fit.
If you are reading this and you have a similar story, let's hear it. I'm sure there are important research questions here....what could help people recognize apnea and get treated sooner? how often is apnea independent of obesity? how common is snoring in teens?
Welcome Willjim95 and good for you for taking your health into your own hands and helping your doctor find a solution. Do you think the change in your "miraculous" energy levels are because at first you could immediately compare with the "old you" and now it is becoming your norm? Anyone else have that experience?
Is the company that provided your CPAP helping with the mask issues? Speak up and ask for help. They are there to help you. Sometimes you lose a little puffiness from your face the first few weeks you use CPAP so need to be checked again for a good fit. That will help you AND the rest of your family sleep better :-)
Welcome Dan14! My goodness, you really do a good job of tracking your treatment. I admire you ability to stick to finding a treatment. Your story illustrates how complicated apnea can be and that it's not just one spot in the airway that causes apnea and/or snoring. Sounds like you have your own special mix of trouble spots and you are fixing them one by one. Maybe someday we will have some kind of a scanner that will show all the trouble spots and provide a plan for what to fix first, second, etc..
One day soon, when there are thousands of people in the MyApnea network you might be able to find a lot similar to you and the researchers can ask all of you special survey questions to find answers to your challenging snoring and apnea. Then they can figure out how to get to a solution sooner. It might help if you talk with your doctors about getting their other patients to join MyApnea.org. Thanks for becoming part of the research network!
If you missed it, watch by clicking this link. You can watch it all at once or select smaller sections to watch one at a time. The sleep apnea segment link is after the whole show link. You might have to cut and paste these links into your internet browser.
http://channel.nationalgeographic.com/channel/sleepless-in-america/videos/sleepless-in-america1/
This is the segment on sleep apnea:
http://channel.nationalgeographic.com/channel/sleepless-in-america/videos/a-look-at-sleep-apnea/
Welcome User 22657. One of the goals of outcomes research is to look at the history of people with similar outcomes (like your struggles to get treatment) and those with better outcomes to see what can be changed to improve outcomes. The more people there are with a common problem to survey, the more vivid the picture of what did and didn't work well becomes. It's strong data like that the insurers need to guide them to better diagnosis and treatment guidelines. I think your non-profit might be right here!! Invite your friends with similar struggles to join the MyApnea outcomes research network and participate in current and future surveys as well as questions about research topics. Let's get 'er done!
Congratulations on getting up to 6 hours need2sleep!!! This website and the MyApnea network is here to learn things like what is common to you and others who went from "fighting" diagnosis and treatment to successful treatment. Imagine the strength of that information when there are thousands of network members to survey and ask what made the difference for them. Invite your friends and family to join us if they think they might have apnea or already know it. What made you change your mind?
That's interesting AJ. The exact same thing is true for CPAP, practice with it, wear it a little each night, then a little more and so on until you're a champ wearing it all night every night. The outcomes, decreased risk for diabetes, heart disease, improved memory and performance etc. improve the more it is "practiced". And it takes discipline. Maybe helping people understand the impact and helping them learn about discipline would help them "practice" or be fully compliant with recommended treatments for any disorder. And that would help us all achieve healthier outcomes. Thoughts anyone?
