Does anyone ever just give up on cpap?

ChicagoGranny wrote: ↑

Wed Jul 18, 2018 12:36 pm

HoseCrusher wrote: ↑

Tue Jul 17, 2018 10:03 pm

It appears that most here only focus on CPAP and are unable to think beyond that.

I beg your pardon? This forum is an excellent resource on sleep hygiene, diet, exercise, diabetes, nasal congestion, nasal surgeries, drugs, drug side effects, drug interactions, anxiety, depression, mattresses, pillows, sleeping positions, reflux and GERD, allergies, alcohol consumption, digestive issues, pain, oral health, RLS, PLMD, REM disorder, narcolepsy, cholesterol, weight loss, posture, hypertension, AFIB, heart arrhythmia, blood-oxygen levels, hyperventilation, oxygen supplementation, hernia, headaches and migraines, PMS, CHF, pneumothorax, tobacco use, ghost blood vessels, third-shift sleep schedule, rotating shifts and backpacking! All of these have been discussed in the last thirty days!

You left out politics, religion, pets, and sky diving - without a chute. I'm sure I missed a few too. Jim

And nose-ballooning and tea gargling.

An update...

I met with a member of the clergy of a nearby Episcopal church who happen to be the brother of the lady who eliminated the root cause of her sleep apnea (and a host of other issues) and he filled me in on the story.

About 10 years ago his mom was having difficulty with cancer treatment. The sister was very close to her mom and decided to move in and act as caregiver. Over a period of roughly a year the brother watched not only his mom degrade but his sister went from vibrant health and being full of energy to extreme illness.

The list included, the development of high blood pressure, high cholesterol, problems with digestion, anxiety, depression, heart irregularities, muscle cramps, cognitive decline, and sleep issues. Medications were given to lower blood pressure, lower cholesterol, deal with gastric problems, deal with anxiety, deal with depression, the blood pressure medication was changed to deal with heart irregularities and an anticoagulant was added as a caution against stroke. Sleep issues were addressed with drugs until the cardiologist finally suggested a sleep study. This resulted in CPAP treatment.

Mom continued to decline. This was extremely difficult because sister and mom had been very close and as mom lost cognitive ability she looked at sister as a stranger. This broke the sisters heart and while brother tried to comfort her it didn't help much.

Mom finally passed and brother stepped in to help his sister out of the downward spiral that she was in.

With the stress of dealing with mom gone, sister started to improve. Over the next 2+ years her health improved. As she overcame each condition she no longer needed the medications to deal with those symptoms and she continued to improve. Finally the only symptom left was sleep apnea. It sounds like she tried sleeping without the machine for a few nights before doing another sleep study. The sleep study showed an AHI of 0.82, no irregular heart beats, the lowest oxygen desaturation was 92%, no restless leg issues, and basically decent sleep. This is when she officially tossed the CPAP machine.

Unfortunately most of us do not have a sudden stress imposed upon us. Our stress comes on gradually and is probably difficult to identify. In addition the brother (a man of God) pointed out that there was most likely some divine intervention involved in the recovery because he had the whole church praying for her. If you couple divine intervention with lifestyle and diet changes you have a very powerful force for healing.

While this demonstrates that removing the root cause can eliminate the symptom of sleep apnea and a lot of other issues, I think it is an outlier. The stress came on suddenly, she degraded suddenly, the stress was removed suddenly, she recovered quickly. Most of us try to put stress into perspective and don't get totally wrapped up in it.

The one person that is dealing with something similar is Pugsy. Her mom is declining, but I don't see Pugsy in any form of downward spiral. She is as feisty as usual. I am sure the circumstances are different.

On a side note...

The brother asked me what my interest in his sisters story was. I told him about this thread and about how I asked my friends if they were diagnosed with sleep apnea and if any were continuing to use their CPAP machines. Sister was a friend of a friend and shared that she once and sleep apnea but got over it. Several of my friends were not using their machines and I was in search of the "root cause" and what could be done to help my other friends come to grips with their treatment.

When I mentioned "rood cause" the brother broke out laughing uncontrollably. He laughed so hard he had tears streaming from his eyes. I asked him if he was alright and he told me he was working on a sermon and was unable to get it to gel. He never considered the "root cause" and this was the part he was missing. He told me it was divine that I showed up to ask about his sister.

I told him that I wasn't totally to "blame..." There was a whole group of people on the forum that guided me to meet up with him. I guess this means that everyone here is part of divine inspiration...

HoseCrusher wrote: ↑

Sat Jul 21, 2018 8:45 pm

If you couple divine intervention with lifestyle and diet changes you have a very powerful force for healing.

AAAAND onto the foe list.

IF YOU BEEELIEEEEEEEVE, YOU TOO CAN GET OFF CPAP!

HoseCrusher wrote: ↑

Sat Jul 21, 2018 8:45 pm

The one person that is dealing with something similar is Pugsy. Her mom is declining, but I don't see Pugsy in any form of downward spiral. She is as feisty as usual. I am sure the circumstances are different.

I know the root cause of my OSA....menopause. I had zero symptoms until Mother Nature gave me that little gift.
Everything starts to sag...boobs, butt, belly and airway tissues.
Hormone therapy out of the question even if it would help the airway tissue patency. No way will I ever do any hormone therapy with the cancer risk in our family.
My mom's issues do impact me but mainly mental stress which sometimes causes insomnia...not OSA related at all.
Just sleep quality in general which I would probably have even if I didn't have OSA.

The root cause in my case I think is the combination of a large tongue, ugh!!! (I've had a scalloped tongue for as long as I can remember), a family history of OSA (my dad) and when I hit 50, I was off to the OSA races .... thanks to menopausal changes. Luckily, I was sent for a sleep study due to an arrhythmia, otherwise I would have just assumed all my symptoms were due to menopause and left it at that. I hate to think just how wrecked my health would be now had I not been prescribed CPAP.

I wish we could get the word out, peri and post menopausal women need to be checked for OSA and not just dismissed as being "hormonal" if they are experiencing bad night sweats (especially in the absence of hot flashes during the day) and waking up night after night with a racing heart.

Even though this is not medical "news" and has been known for quite some time I just don't think there is enough awareness of this, still.

Several women I have spoken to battle terribly with sleep, years into menopause and have horrible night sweats, and naturally are quite anxious and depressed about this. However, they are fobbed off with blood tests and then if those are in the normal range they are either prescribed anti-depressants or told to take melatonin. For some reason OSA is still not on the radar.

HoseCrusher wrote: ↑

Sat Jul 21, 2018 8:45 pm

If you couple divine intervention with lifestyle and diet changes you have a very powerful force for healing.

"Well the preacher kept right on saying that all I had to do was send
Ten dollars to the church of the Sacred Bleeding Heart Of Jesus
Located somewhere in Los Angeles, California
And next week they'd say my prayer on the radio
And all my dreams would come true
So I did, the next week, I no longer needed CPAP"

- With apologies to Richards/Jagger

Another update...

I met the lady who recovered fully from the symptoms of sleep apnea through the introduction by a friend. This friend was instrumental in setting up the meeting with the brother. She also happens to be one of the group that had been diagnosed with sleep apnea and gave up on CPAP.

As a result of all of this she has reconsidered her position and she called me this morning stating that she is digging her CPAP machine out and is going to give it another try.

"Does anyone ever just give up on CPAP?" Yes, BUT they may reconsider if provided some education, engagement, compassion, and reaching out a helping hand. I have offered any support and insight that I have to my friend and also mentioned that there are people much more knowledgeable in all of this on this forum. This is a start... and I hope she will continue to follow through and find improvement in her health.

HoseCrusher wrote: ↑

Sat Jul 14, 2018 6:38 pm

Jeff, my opinion is that the only time sleep apnea is a condition is if you are born with it. In all other cases you earn it.

Choices in diet, lifestyle, exercise, and the luck of the draw as far as physical damage from accidents goes all contribute to earning the symptom of sleep apnea. After noticing the symptoms you may be able to achieve more restorative sleep by focusing on the root causes and trying to deal with them.

Treating the symptom using CPAP is an excellent start, but what about the roughly 50% that can't tolerate CPAP? Perhaps improvements could be made by digging a little deeper.

There is most likely a point of no return where you have damaged the body beyond it ability to repair itself, but I am not sure where that point is. If you "believe" you are there, then you probably are there. In my case I believe I may find more improvement.

I believe there are lifestyle choices that can make sleep apnea worse. But I was clearly born with physical attributes that lead sleep apnea. I have the classics - small chin, narrow jaw (4 teeth removed as teenager), narrow airway (also have asthma and trouble swallowing pills).

Was I born with sleep apnea? Not enough to notice it, so probably not. Looking back, the symptoms probably started when I was in college. I wasn't diagnosed until I was 38. The narrow throat was obvious as a kid as I always struggled with pills. Even if it went down, it would often stick partway down and then dissolve there. I chose liquid medications even as an adult, even when they tasted awful. My allergies cause congestion which narrows my airway further. So, long before i heard of sleep apnea, I would have trouble breathing at night and would have to sleep sitting up.

When I was 19, I was diagnosed with asthma, and I have never managed to blow enough air to be considered normal. Even on a good day, even when medicated. Not even close. One doctor said my airway was 30% smaller than normal. I have no idea how scientific that was since I didn't ask back then. But even this past December, I did the breathing test, and after failing it several times, my doctor requested an xray to make sure there was nothing blocking my airway.

I am not aware of any medical procedure that would increase my airway to the point of normal. And it is far too late to enlarge my jaw. I was not born with sleep apnea, but I was born with the physical characteristics that usually cause obstructive sleep apnea.

Also, I disagree with your statement, "what about the roughly 50% that can't tolerate CPAP?"

I believe you are basing that on the common statement that 50% of cpap users fail. That does NOT mean that they cannot tolerate cpap. It doesn't take into account the reasons at all. And we know that a LOT of machines go to new patients set for 4-20 or 5-20 with very little followup help. Or they have ramp starting at 4 and going 45 minutes. These new patients are doomed to fail with settings like that. They feel claustrophobic and rip off the mask, unaware that they need to raise the starting pressure. So, they quit before any chance at success. Other new people are sent home with the wrong mask, and lied to about getting a different mask. Most of the cpap failures are due to bad settings and less than helpful followup. Most people, if they find help like this forum, CAN find success. Yes, there are some who really can't. But it is is far less than 50%.

I tried a larger version of the original mask assigned to me. My AHIs jumped, so I parked it. Haven't gone mask hunting, otherwise. Hmmmm, maybe I should while I still have a little disposable income!

I agree re the DME model. I find it frustrating that I have to have a prescript for certain things. It's like you become captive and they then milk you. I've taken to using Amazon where I can because my insurance company, BlueChoice, just tosses everything under my $1500 deductible so it's like having no insurance at all.

Cheers.

zoocrewphoto thank you for your comment. I have edited my original comment to provide clarity on this.

I was using "CPAP" in general to include both the machine and therapy combined.

I believe that the body's natural state is health. If you pile up stresses (emotional, physical, and/or chemical) the body adapts to those stresses in an effort to heal. When the pile gets large enough, change is initiated. This change can work toward illness but also can work toward health.

Lifestyle, diet, and emotional state are things we can control. Sometimes these are enough to initiate a change for health, other times they are not. Sorry to hear about your asthma.

Thinking back on root causes... If your asthma is caused by an obstruction in your airway, a medical procedure may help. On the other hand if the asthma is caused by inflammation that results in closing off your airway, a medical procedure most likely will not help.

Another update...

A friend of mine and I volunteered to help paint a shed. We got set up and put on our full face masks to filter out the fumes and paint spray along with our protective coveralls. When the job was completed I approached my friend and asked him if the CPAP mask was easier or harder to use compared to his full face protective mask.

He shook his head and told me he was going to take his machine out of the closet and give it another try.

HoseCrusher wrote: ↑

Fri Jul 27, 2018 4:44 pm

paint spray along with our protective coveralls

The root cause of apnea is coveralls.