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Want/need to give up cpap


#1

I’ve had sleep apnea for 11 years. Haven’t used the c-crap in a long time UNTIL the last couple of months after I broke my wrist. Now, and I know this might sound weird, but I don’t want to use it any more. Has this ever happened to anyone here? It does nothing for me. Still tired. I’ve never embraced or accepted that I have this problem. Now. I don’t want to be bothered with it any longer.


#2

I’ve tried to give it up a few times but eventually it always feels like I’m going through the day without any sleep. Still hope for the day I can wake and take on the day like I was younger, but we all have to take what we are given in life and do the best with it. Always keep that in mind.


#3

Have you been evaluated by an actual Sleep Specialist M.D. & had any sleep studies done. The information obtained in these intensive sleep studies is invaluable in being able to prove whether or not you actually do have sleep apnea or if perhaps you need to have your thyroid checked (low thyroid is notorious for low energy), or you possibly have Chronic Fatigue Syndrome, or another medical condition(s) instead? Personally, I have all 3 of the above conditions plus several others, but especially Fibromyalgia, that leave me feeling pretty tired much of the time, but I still wouldn’t dream of not using my CPAP at night because both sides of my family tend to die in their 40s/50s unexpectedly in their sleep (sudden cardiac death, which can be caused by sleep apnea, BTW) & also because even though I’m still pretty tired much of the time, I do feel more energetic upon rising when using a CPAP machine & this affords me at least a few hours to get some things done, a little exercise in my day & the ability to run an errand or two, even if my energy begins to flag later.

The other thing that was useful is that when I was given the results of my sleep studies (I’ve had quite a few over the years), my doctor was able to pinpoint some abnormal brainwaves that answered my neurologist’s questions regarding why I was falling asleep when driving distances lately (obviously, putting myself & others in harm’s way. In fact, the last time I tried to drive more than an hour, I almost ran off the road into a concrete wall. Thank goodness another driver behind me blasted his horn & woke me up). It turned out that I have narcolepsy on top of the previously mentioned conditions (and with narcolepsy you aren’t even aware that you have dropped asleep & that’s what is really scary about this condition).

I also knew that I have chronic insomnia, which I’ve had all my life & also fall asleep & sleep better during the day & prefer to be awake at night & no matter how hard I tried “good sleep hygiene” methods & setting a schedule, my natural biorhythms just wouldn’t allow me to maintain the schedule. My doctors in the past even tried sleeping pills to see if that would help, but they didn’t really work the way we hoped they would; my biorhythms stayed the same. Well, it turns out that I also have Sleep Rhythm Disorder (sometimes also called Sleep Cycle Disorder). You’ve probably have seen the tv ads for this disorder & how it especially affects blind people, but even sighted people can have it. And it took perseverance on my & my doctors’ parts to pinpoint each & every one of these conditions & a lot of unnecessary at times of trial & error with incorrect diagnoses & treatments. So now, my sleep doctor monitors my sleep & performs sleep studies periodically & monitors my CPAP usage, while my neurologist has me on several medications to address the other sleep disorders. They communicate very well with each other & to me in coordinating tests, treatments & sharing information. I feel as if I finally have found a great team to address my sleep problems that have plagued me throughout my life. I’m 63 so it’s taken a very, very long time to have the correct medical tests in order to get properly diagnosed & also importantly, to find the right team & medications/treatments, & I’ve had quite a number of doctors of various specialties & many attempts at treatments over the years [that turned out to be ineffective because a lot of general doctors tend to oversimplify everything & say “It’s probably nothing” or jump to an incorrect diagnosis & prescribe medication without doing the lab tests to rule out conditions, or because specialists tend to be tunnel visioned to see only what their specialty points them to, & I am so greatful to finally have found the right doctors (that think outside the box - neurologists are good at that BTW) & effective treatments]. I think it’s important for people to be patient, but not too patient, & also to not give up in their quest to find out what’s actually going on with them to make them feel so bad & then find effective treatments & a good medical team. And you really have to advocate for yourself if you’re not getting the answers to your health problem or the results you expect. Sometimes feeling tired all the time might be diagnosed with just one test, but there are times it’s much more complicated (as in my case & possibly yours).

I hope you follow-up & get some lab tests done along with a proper sleep study if you haven’t done these by now & that your doctor(s) can determine whether or not you actually have sleep apnea &/or other condition(s). I wish you the very best in your pursuit for good health.


#4

Hi Mike - I have just begun researching sleep apnea treatments and I can’t stand the thought of wearing the cpap machine… I have been diagnosed with sleep apnea but really haven’t treated it yet… but I have to start… (by the way, I also have high blood pressure and was denied having some teeth extracted… was already in chair and was asked to leave till I can get it under control… I’m 53 … just to give you a bit of background… you and I have some things/experiences in common).

Anyway, I was doing research and came across this as an alternative to cpap. I have not tried it yet and cannot vouch for it, but read the article as it may be a good alternative for both of us.

https://well.blogs.nytimes.com/2012/04/09/treating-sleep-apnea-without-the-mask/?src=me&ref=general

http://www.proventtherapy.com/index.php

Let me know if you’ve already tried it or what you think. All the best!

Larry


#5

Hi Larry. Thank you so much for your kind post. Sorry I haven’t responded sooner. I happened upon your email and wanted to read through the thread at some older posts as well. I don’t visit this blog much. I did see that our circumstances are similar. I had the same experience with a dental situation. The dentist found out I had sleep apnea and there was no way that they would put me out for surgery. I tried to lie about it but he looked through my chart and found the sleep apnea thing. I was pretty mad at the time. I’ve been fighting with the Cpap for a long time. I just decided that I don’t want to deal with it any longer. It’s done and over for me. I had an endoscopic ultra sound a couple of days ago and the anesthesiologist told me straight out that I needed to use the Cpap that night because I had general anesthesia that day for the endoscopy. I smiled and nodded and seemingly agreed that I would. Later that night I didn’t use it. I don’t care who tells me or what the circumstances are. I simply refuse. I don’t want to become dependant upon it. My wife gets mad at me, because she wants me to use it.I sit there and nod in agree that I’ll use it. But it’s this simple. Don’t like it. Not using I it… I just don’t want to be bothered with it. I don’t care about the so called benefits and don’t believe they exist. I have high blood pressure all the time no matter meds, osa or whatever. It’s a decision I made because I feel like it’s the right one. I hope it works out for you though. It’s a difficult scenario no matter what the issue is. I wish you the best though I sincerely do.


#6

I stopped drinking and try to get lots, and lots, and more lots of physical exercise either thru just doing stuff that needs doing or through physically-intensive recreation. I’ve lost significant weight, probably due to the cessation of alcohol. As confirmed by a sleep study, these steps enabled me to go from cpap to sleeping on a wedge pillow.