Ruby

OOOH! So happy to! I love twisted humor but sometimes have trouble reining it in. Never apologize for having fun (as long as it isn't at someones expense and yours was not). Life gets completely too solemn at times. I can see a new friendship developing here!

Gremlin, you are so profound in your thoughts and concerns. You aren't alone in this either--most of us need help trying to figure out what is best for us and that road is a rocky one with very few rest stops. This may be a long post but here goes....

I do not like my CPAP. Actually I borderline hate it. Does sit really help? The information that goes to my doctor says yes, my oxygen levels are where they should be and so on. But do I sleep better or feel better? NO. I went to my sleep doctor (who uses a CPAP) and told him this. He looked at my results and said I was doing GREAT, wearing my mask several hours each night. Now, I should just wash my mask each night in lavendar scented Dawn dishsoap and I would drift off like a cloud. I was so dumbfouded that I didn't even think about reminding him that just because the mask was on did not mean that I was in a restful sleep.

I do wear my CPAP faithfully. I've worn it so long that now I can't sleep without it. Yes, I do take naps almost every day. They don't affect my night sleep as I sleep the same when I haven't napped for several days. But maybe I should cut them out.

I have several other health issues: type II diabetes, restless leg syndrome, and afib among the most dibilitating. It is completely overwhelming at times and made even worse with insurance issues that won't pay or make me drive 2 hours to see a doctor. But I like to research and learn as much as I can about the issues I face. Each has it's own set of problems but then each one can adversely affect the others also. I try to keep current on new information but that doesn't always happen. And then I have lots of other "stuff" that has to be done so I don't have time to do as much research as I would like. It's a struggle. That's why I think forums like this can be so helpful. You not only realize others have problems but that there are some good, caring people out there.

The last part of this long post is that I think it is extremly important to learn all you can about the issues you face. Guess that piggy-backs on the previous paragraph. But it is the only way to take charge of your issues. If you KNOW as much as you can then you can go into your doctor and have a quality discussion. Yeah, I know--many doctors still frown on this. And it's easy to say--find a new doctor. Not easy to do. But my opinion is that you have to take control of your health because quite frankly, no one else will. And it can help you feel like you DO have some power over your life.

I was on the board of directors for the Restless Leg Syndrome Foundation for almost 6 years. I am now on two patient boards for sleep apnea. I am a patient advocate (all of this is volunteer work by the way, not getting paid to tell you this) and have spoken in Washington, D.C. to various groups about sleep issues. Now I am focusing on the health care issues in rural areas. I am not telling you any of this to prove what a great person I am (because I'm not that special, believe me) but to show that everyone has ways to deal with their issues. Some don't want to do anything, some want to do a lot. But by telling our stories, we can at least support each other.

I hope you continue looking for answers. I also really hope you find them. This forum can be great but life happens and we don't always check in like we should to help others or find help for ourselves. Hang in there. Keep asking your questions and posting. I kinda like knowing a real Gremlin!

I agree. Something I certainly didn't think about although like Sherry, I don't have those issues. Thanks for sharing. Hope it helps someone!

But reading stimulates your brain, which should make you more alert during the day and that's a good thing, right? Be careful what you wish for--"I want someone to tell me what to do"! In my world, too many people do that already! LOL

I would love to lose the CPAP also! However, my insurance won't cover another treatment option as long as the current one works. You can always ask for another opinion. I will be interested in what you find out or decide to do.

I would say to take it back to the manufacturer or seller. May be a defect, may be something easy to fix.

I agree Gremlin, current research is slow and not always in areas we need. One thing I have found out--research takes money. The people who make CPAP machines and appliances seem to have the money to afford research. Which is good as we benefit from better technology. The bad part is that research like the one you described is seldom funded. Sucks, doesn't it? That's why it is important to have the patient voice heard so all in the sleep field know what we need. Will we get it? Maybe. But the squeaky wheel sometimes does get the grease.

Hey Gremlin! You never know where those grand conspiracies might show up!! Tulip it could be coincidence that you started sinus issues at the same time as starting CPAP but who knows for sure? I will admit that like Gremlin, I don't clean mine like I should. I've been on CPAP for many years and just now have started having sinus issues that I'm pretty sure are from CPAP. Do you have a humidifier with yours? If I keep distilled water in mine with the humidifier going it helps.

Sleep apnea is a very frustrating issue. It sounds like you need to have a good talk with your doctor. Before you go, learn all you can from a reliable source about your condition and the tests you have had and are being asked for. Ask for a consultation. Bring all your information with you. As Gremlin said, don't demand--ask. Tell the doctor all your concerns, especially about being able to pay for all of this. It comes down to this--respect your doctor BUT you are the patient. This is your life, health and well-being. You have a right to be involved in your care. Know what options are out there, including finding a new doctor if necessary.

Good advice about playing it cool and staying focused. My own opinion (for what it is worth) is to not mess with your machine unless you really know what you are doing. I'm glad it worked for you, gremlin.