CPAPtalk.com

If the moderator was responsible for keeping threads on track, she wouldn't have time to do anything else and her poor little pugs would starve to death.

I think a support team is absolutely essential.

However there is no guarantee of success even if you have excellent support. Sometimes the body doesn't cooperate.

We have a friend who in spite of having an excellent support team as well as an excellent team of medical professionals just transitioned from stage 3 to stage 4 kidney failure. While the future doesn't look bright, we will continue to be part of the support team and wonder if there was more that we could have done.

I am optimistic about the outcome of all of this and I try to make my optimism contagious.

On the positive side, the sleep machine and mask issues have all been resolved giving a high probability of having a restful sleep.

Support teams are a must for us hose heads. You can’t just deal with this on your own.

As a newbie here just would like to say this is a great content with strong sense of harmony. I do believe having a nice support team nothing is impossible to carry on or to be succeeded. Thanks for the article.

I'm approaching the end of my second month, and I can safely say it would have been impossible without a support team. Family involvement has been vital. But even more importantly, this community has provided me with expertise, advise, and help that even doctors could not, would not, or for which the fee would be enormous. If not for this community, I'd be suffering terribly with the physician prescribed mask, and worse, would have inconsistent AHIs and a whole host of unresolved sleep issues. For sure, I'd be one of the non-compliant statistics by now without my support system, instead of going on my 47th day of compliance with a 0.5AHI last night.

The support team's job is vital in empowering the pioneer to lead with focus and success. Your support Team is a network of people you trust and look to for guidance.
Cultivating and maintaining a support team will benefit you throughout each of your life’s endeavors. Support teams do more than offer a sense of community and belonging—they also help you achieve professional success.

A good support team is important because with out it you will probably fail at CPAP therapy. I have been on CPAP since 2013 and I am 41 now and I am doing much better than I did at the beginning thanks to a great support team.

You guys are my support team!

How long did it take you all to sleep throughout nite with mask? I am to point I can finally lay down with cpap but not sleep with mask. I wear it during day

Please start a new thread instead of posting here. You will get more help by doing that.

I think this forum is great as part of my support team. I left my Sleep Study not knowing my next step and not being smart enough to ask pertinent questions. I called my GP who referred me back to my Sleep Study physician and had it not been for this forum, I would still be going around in circles. (I really do have Vertigo) I have found people on this forum to be most helpful and not "talk down" to me when I ask ignorant questions. Were it not for the forum and my spouse, I would be in a fit of depression trying to get CPAP equipment and learn about it. Thanks, folks - good job!

Hi,

I don't know if this is the right spot for my comment but I really need help/support right now and don't know where to turn. In 2011 I bought my first CPAP (Respironics BiPAP Auto) on Amazon, because my Sleep Specialist doctor wanted to sell me one for $4500 (and $500 for the mask); i bought it new on Amazon for $1200 plus GST. Perhaps the best feature of this machine is that it provides a "pressure pulse" to help you breathe if you have stopped. That was back in 2011, after i had been diagnosed with sleep apnea with an AHI of 23 in 2005 in Canada (but refused to purchase a machine or wear a mask). Unfortunately, over the next few years, i deteriorated without the machine, until I was literally dying on my feet from hypoxia and cardiac stress, until i gave in, in 2011. After struggling to use the machine, after six months i was almost fully recovered. I went on to use the machine intermittently until 2020, when i went for another sleep study in Canada, at the same sleep clinic I had gone to in 2005 and I was told I did "not" have sleep apnea (and by the same specialist who first diagnosed me) and she asked me did I want to still purchase the CPAP. Between 2018 and 2020, I hardly used the CPAP and was doing well. However, since about 1997 I have endured a strange "fluttering" or "vibration" in my chest; I believe this is related to the sleep apnea. In 2021, I sanded the floors in my house after my previous tenants turned it into a crack house, and did many renovations, I had little money; so the progress was slow. Unfortunately, as I was doing the floors, my "flutter" came back with a vengeance and was complicated by a new symptom -- severe cramps in my hands, even two months after i stopped the sanding (I did use a hand sander, unfortunately, to do the whole floor). The cramps have eased a lot; but what i want to get support for is the "fluttering/vibrating" feeling in my lower left chest under my last rib, which starts quietly and begins to build. It seems to be associated with high blood pressure (160/90) on waking in the morning, and directly related to the number of central and obstructive apneas i have. I am concerned that i was misdiagnosed and told I do "not" have sleep apnea, when in fact i do and, worse, i have not (after visiting at least 28 different doctors, 6 - 7 cardiologists, and having many echoes, treadmill tests and taking propranalol for the past 17 years) been able to find out what is causing the "flutter/arrhythmia." I am awaiting the results of my latest holter but i am desperately afraid of being diagnosed with Afib, since it can lead to very serious outcomes. My primary doctor is not sympathetic and feels that nothing happening with me is cardiac-related; and i am unable to get a referral to a preventative cardiac medicine clinic which is just 30 minutes away. I am currently taking Taurine and L-Arginine because i read online (clinical study) that these two substances, taken together, can eliminate arrhythmia; however, the supplement bottle says that L-Arginine "should not" be taken "if you are attempting to increase your stamina after a heart attack" so i am worried that i should not be taking the L-Arginine because i might have had a heart attack when i did the floors; (i had some terribly heavy heartbeats followed by a very bad "vibration" when i was doing the floors). As well, my PCP refuses to do a Troponin test since she is a locum under training; so i am left only with my symptoms and enormous anxiety. Summary: i really need support but don't know where to turn and certainly do not have the funds to get treated at the Mayo Clinic. As well, my symptoms, though more severe now and (the new one being hand cramps first thing in the morning, which seem directly related to the arrhythmia) are almost identical to what i experienced PRIOR to starting the CPAP therapy; so i am confident that, with continued use, my data will improve and i will fully recover. I firmly believe that a good CPAP therapy and machine can actually remodel a weakened heart; but, without guidance and support from a competent and caring, non-materialist Sleep Specialist, i will fully recover. Unfortunately, it seems that such specialists (especially after the Covid mess) don't exist.

oklajohn wrote: ↑

Wed Feb 23, 2022 4:12 pm

I think this forum is great as part of my support team. I left my Sleep Study not knowing my next step and not being smart enough to ask pertinent questions. I called my GP who referred me back to my Sleep Study physician and had it not been for this forum, I would still be going around in circles. (I really do have Vertigo) I have found people on this forum to be most helpful and not "talk down" to me when I ask ignorant questions. Were it not for the forum and my spouse, I would be in a fit of depression trying to get CPAP equipment and learn about it. Thanks, folks - good job!

So true oklajohn. This is a great resource and support network for info on your CPAP equipment. Busy doctors tend not to very helpful when it cones to getting the answers you need.