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Thanks much for the reply Gary. Yes, initially it was because of loud snoring. The first sleep study itself was not nearly as bad as the second one it seemed, so I think they did get some usable data from it. Again, the term was "severe" to describe the degree of the condition. That first one though was the one that tainted me due to the follow up visits. I tried so hard to tell the female provider that I simply could not sleep with any type of mask about my face or nose. You are right - I did get the feeling of smothering as well with the mask on. After a few weeks for trying it, I was a literal mess. The lack of sleep and associated anxiety (fed on each other, I think) was taking me down. Yet, the provider was harshly telling me that nobody else has this problem and I just had to do some things I didn't like. I tried to tell her that it was not that I didn't like it, I could not use it. She did not buy that one moment. I think on the second study, I was so uptight knowing what had happened before that it was a total failure. When I could not tolerate the machine again, I gave up after about two follow up visits with the different doc on this one. He said either use the machine or lose weight. So, knowing that I would fail at both of those, I gave up. That was about 4 years ago. Today, because I have been so tired, I begain to look at machines online, which sent me into a terrible anxious state complete with sweaty hands, trembling, and fast breathing. I had to stop that quickly. No, nobody has offered any alternative to the CPAP at all. I enquired about other things several times, and the doc would not discuss them. He simply said the CPAP is the gold standard and that I what I needed. So, I remain deeply shamed over not being able to do it as I must be a failure at it due to the provider's harsh lack of trying to understand (mostly that first one).
Replies to "Thanks much for the reply Gary. Yes, initially it was because of loud snoring. The first..."
I am so sorry about your late husband. I have obviously not been successful in describing my issue. CPAP is not an option - Period. I have spent much sleepless time trying. I disagree with your assessment of the docs. I was made to feel much shame and that there was something wrong with me for not trying it. Thank you all for meaning well -- perhaps there is just something wrong with me. I had hoped for alternative suggestions. Trying to find a way to withdraw from the group. Apologies for bringing my issue here
@bax, I assure you that what she told you about no one having the problem, she is terribly wrong. I know many people who struggle with a CPAP and may get used to it, or may simply put it in the closet. I know the importance for me, but I am a sound sleeper once I get there and it removes my anxiety of not resuming breathing when I stop. You know what you have to do for your body.
Hello @gman007 Gary...
Are you referring to my post?
Darlia
Thank you for the condolences. I hope you find a happy solution to this.. it's no fun to suffer. I do too . . I'm hoping that to post about the positive side of the Dr care vs the negative side will be encouraging. I would suggest looking for help from going to the Mayo Clinic or a new Neurologist in your area. Does anyone have a recommendation for a sleep Neurologist? Where do you live Bax?
We all have Drs who don't listen to us or make us frustrated at times and I'm no exceptions .. so posting the positive view is encouraging while the negative brings us down more! Who agrees with this?
Darlia
I think I was referring to tbaxter's post as mine was made 3 days ago.
Yes, I am positive, because I had not read your post until just now. Sorry for any confusion.
Go to different doctors until someone listens.
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Good Day Bax~ I read through your posts and I want to ask you... Has anyone taken the time to watch you put on the mask and make sure that you are positioning it properly and/or make sure that you are wearing the proper head gear size and/or size of the mask or cushions? I am using now the cushions. MED size and also this is after many changes. I started out with the full face mask and regular hose. Didn't work. I switched to the Amara View which is considered full face mask but fits under your nose.Regular hose. That wasn't good because I have Gastroparesis and GERD so sometimes I have issues where I have regurgitation and if that happens while I am sleeping and it comes up into my throat, it can choke or suffocate me, especially with a full mouth mask covering my mouth because as you are asleep and if you aspirate which means to breath in after vomiting. ..(sorry for the graphic) you will then not be able to breathe!. So I convinced them that I needed to switch to the Respironics cushion. There is also what is called the 'pillows' which actually fit inside of each nostril, but I asked the Sleep Central specialist about this and she said that the cushion fits under comfortably your nose, so I opted for that one. It has been a couple of months now and I seem to do okay with it. One downfall is that sometimes I wake up with lots of burping because lots of air has filled my stomach. I think this is due to still having some snoring but not entirely certain. It's all a science. It depends on how you position the head gear just right or not. It depends on the pressure for the beginning when you first put it on and how long it is set up to be on that pressure before it switches to a higher one.. depending on how long it takes you to fall asleep. I wait until I am really ready to go to sleep before I get into bed. If it is midnight or if it is 4 am.. I wait until I am absolutely ready to fall asleep before I go to bed and put it on. That way I am so tired that I fall asleep within a few minutes tops. I used to have the beginning pressure set at 4 and then set to not change to 8 for 20 minutes. Well, that was too long inbetween the time I started and the time I fell asleep because I fall asleep quickly and need to have that pressure more IMMEDIATE. So I changed that ramp time by turning off the ramp and that way it starts out at the 8 immediately when I start so I have enough pressure for falling sleep. The great thing about the cushion is that the air is only going into your nostrils and as long as you have the little cushion positioned just right, you don't feel smothered or any problem with it, in fact it is barely noticeable. I've also switched to the HEATED HOSE.. this is an improvement too.. I do wake up some nights after only being asleep for about 2-3 hours and yank it off... but I think this is on the nights when I am having more gastro distress and I don't really consciencously think about it. I have nights when I take it off because I am just uncomfortable but not due to the CPAP itself and I just get lazy to put it back on. Some nights though I have worn it for 6-7 hours so I know that I CAN do it.. LOL.
My advice would be to ask questions of your DME, in person if you can and tell them exactly the obstacles that you are facing so that they can specifically address them. Or better yet... call the company that manufactures the CPAP device that you are using. For me it is Respironics. I called them once to ask for help to sync my device with my tablet or phone to get the updates daily on my usage and how many times I have apneas. It can be connected to the app so that you can keep track daily. But I was having trouble with it connecting. So that is the best resource probably because they actually make the equipment and they know it even better than the DME who has to LEARN how to use the equipment themselves and then TEACH you how to use it. They don't always know. They fake it.. LOL. I know for a fact because I've had this happen to me. Some reps or nurses will say, Oh, I am not so familiar with that yet and I need to find out.. just let me check.
As for using it or not using it and having that feeling of being shamed into using it. I don't believe that any Dr. or nurse or DME provider is trying to do that.. they just think that if they tell you why you benefit from using it, then the benefits will outweigh the discouragement you are having about wearing it at all. I have to say though that it is up to you and it is kind of comparable to using a cane or walker. I have to use help to stand and walk sometimes due to Peripheral Neuropathy and if I don't because I am thinking that it is a bother or takes extra effort to use a cane or rollator, then the consequences could be that I would fall and then have an injury. Another example would be that I have to eat a certain way because of Gastro diseases and the consequences if I do not is that I will have pain, discomfort, regurgitation and bowel/gastro issues too that are not pleasant. Another one is that I have to make myself excersize regularily for Fibromyalgia, Osteoarthritis and neuropathy for the benefit of helping to COPE with these diseases.. but in doing this, I have to suck it up and make myself go to the gym to do the excersize bike and elliptical like 3-4 x a week, even when I have pain or I am so extremely fatigued. Because why?? Because the inconvenience of it all as much as I don't like it or don't want to do it is more positive than letting the diseases take over and WIN!. I refuse to not try. I do also get the constant direction from my MANY specialists and dietitians to do this and don't do that and just yesterday, my neurologist for the sleep apnea wrote me after reviewing my numbers to say, I need to increase my average of the use of wearing the CPAP because it is just around 4 hours average. He is in effect saying, DO this because it will benefit you, NOT DO THIS because I say so!. So when a DR tells you to do it or else, they are not really shaming you, they are giving you the facts and then you have to make the effort. I had a late husband who had COPD and he would just refuse to wear his oxygen of which he was told to wear for sure when he was sleeping. It was for his benefit, not the doc's. Well, it was to the point where I had to tape it to him at night because he would wake up and rip it off of his face and then this would cause him to have really low oxygen level in his blood so this was affecting his heart and lungs and brain. Even knowing that this was the facts and the Dr. telling him how it affected his whole body, he chose to do it anyway. Got to the point where we just let him make the choice as even taping it to him for his benefit while sleeping didn't work. He also chose to eat the wrong food and not always take his injections of insulin that he needed for his type 2 diabetes, nor even check his sugar level like instructed to do. He eventually died from the complications of the COPD and diabetes while being treated for stage 4 gastro/esophageal cancer and receiving chemo. It wasn't the cancer that killed him because the chemo was working, ... It was the COPD because his last days were spent in ICU and even while on life support his brain and heart could not get enough oxygen to support life.
I am not telling you this to put a sad note on my story, but to show that it is all the way you look at it as to how you attack the problem. Like my neurologist for the Peripheral Neuropathy says, "This is your new norm". So, embrace your new norm...take it on and do the best you can!
Just keep swimming, Just keep swimming!
Stay well!
Darlia ~