Ruby

I’m just responding first to the issue of adjusting your own machine. Unless you are a doctor I wouldn’t think you would want to do that. What is the reason for changing the setting? How do you know that the change you make is correct? If it isn’t, then you aren’t doing yourself any good which is the purpose of using it to begin with. It’s like having a medication you need. Not taking it or taking less won’t help you get well. Taking twice as much may make you sick for another reason.

As for SleepyHead or any program that you might use, just make sure that the information you use or receive is accurate. I believe that if we had a reliable support system (whether doctor or other professional) we wouldn’t need any of these. The problem in large part is that we are given this “stuff” with minimal information and then sent on our way. No wonder adherence is low. I love support groups and forums as you can learn much. But we are all different so what works for one may not for another. Educate yourself with reliable information before making changes.

The only way to get the help we need is if we are part of the plan. Doctors, researchers, clinicians and other patients need to hear what we need. We need to let them know how we are affected by sleep apnea, what works and does not work, what problems we have with machines, appliances, insurance issues and finding good doctors--just to name a few things. There are all sorts of medical issues out there. The ones that know the most about it is the patient. Patients should be the driving force behind finding treatments, medicines, cures! The working relationship in most cases is the doctor having 95% of the input and the patient 5%. This isn't true in all cases and may be an exaggeration but for so many of us, we still feel the doctor knows best. In regards to treatment, that may be true. But all treatments and information should be founded by the input of the patient.

So this is a great opportunity for us to take some control of our health. We have the chance to help "shape the future of sleep apnea care!"

If you have found this forum then you either have sleep apnea or suspect that you do. You have found a place to ask questions and find answers as well as support. However, misdiagnosed sleep apnea is a huge problem, especially if you are a woman. 1 in 5 women have sleep apnea. 9 in 10 women who have sleep apnea do not know it. That's why the new brochure "Women and Sleep Apnea" can be so useful. You can download it to use yourself or to share with another woman you suspect might suffer with undiagnosed sleep apnea. You can also use the flipside to take to your health care provider.

There is a blog with more information about the brochure and a link to download it. Check it out. https://myapnea.org/blog/2017/12/swhr-women-sleep-apnea-tooklit

This is an excellent way to start a conversation with your health care provider. It is simple to understand and use. I am very grateful for the work done on this and hope that it will be used to the benefit of both women and their doctors.

Having patients involved in such a conference as SLEEP 2017 is a new experience. We first attended as a group from the patient engagement panel for MyApnea in 2016. This conference is for doctors, clinicians and researchers and is of immense importance to that group. For patients to be able to participate in any form is a tremendous step forward for both patients and the medical community. To find that doctors share our frustrations was very enlightening and surprising.

Having a dialogue between doctors and patients should be the natural order of things but it seldom happens. Building a working relationship is truly needed in order to get the best outcome for the patient. When the problem is highlighted at a conference like this, the first steps in building that relationship begins. We need more interactions like this and the ideas, concerns, suggestions and problems then need to be shared with other patient and doctor groups.

I thank everyone involved in getting this together and hope that it is the first of many collaborations.

Can you call your provider to see if they have any answers? It seems like we just get something to work and then it goes to pot. I hope you get some answers but I would start with your provider.

There are a lot of variables in answering this question. It depends on the type of appliance and what insurance is involved. Maybe someone else will have a better answer for you.

There is no reason that you cannot contact your doctor and press for a quicker response. This is your life and you have a right to expect treatment on a timely basis. With that said, there is also no reason to panic. In all probability, this has been going on for awhile. I had the same problem with my oxygen levels and although there is no way of knowing for sure, I think that I had the problem for a long time before finding out what was going on. Yes, you need to be treated but if you can't get in for a couple of months, it will be fine. If it bothers you that much, push for quicker treatment.

An oral appliance might be what you need. A friend of mine had the same issue with claustrophobia. When that horrible feeling hit he would open his eyes and wave his arms around to remind himself that he wasn't confined. I have no idea if that would help you or not and I wish there were a better answer for you. All the best to you!

Sorry, I missed what type of mask you use. So the above reply could be spot on by trying a different mask. Best of luck to you!