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Doing everything right and still dead tired??
#1
Doing everything right and still dead tired??
My first post in some time and I hope it will help some people:

This may help answer the question: "I do everything my Doc said to do my sleep apnea is under control YET I am still dead tired most of the day."
I have been treated for sleep apnea sense 2013, and have been 100% compliment. And yet I still had tired days.

I tried to cut this shorter but I feel I need to present the whole story.

This has been the third spring, summer, and fall in about 30 years without major health problem with daily crashes with brain fog and fatigue usually after only a couple of good hours in the morning.

The other two were the year I tried to get in making MPG in cars and spent that spring away from home and shop working on cars in what was a dirtier place along with cats, dogs, ducks, horses, and peacocks (yes he had three…)

The second was the spring after my quad bypass…not that I was feeling great, as I was still recovering from that major surgery.

I am still at a lost to explain my 30+ years of what was chronic fatigue, (Starting in spring 1985) my best guess is that I had the real chronic fatigue up to the first spring working on cars.

During that spring I was treated with a Rife Machine FOR chronic fatigue and these machines may have cured me.

Up until those last years before my surgery I had an odd history: First I seemed to trade my life long hay fever for CF…I would have a big Hay Fever attack which would stop and the CF would take over.

And these attacks of CF would happen mainly in fall and spring with clear good winters and summers…

I had to do most of my model building in winters and summer and rest during fall and spring.

After the surgery I thought my heart conduction WAS the real cause of my CF as it did not return for nearly a year and ½. But my daily crashes did return and became worst and worst and became almost full time year around.

I was going nuts and when we got on medicare and access health care saw a lot of Doctors trying to find help.

After two years with no help and a couple of scary health scares, all reports came back with NO REAL HEALTH PROBLEM.

Nearly every Doctor, every test failed to find anything wrong.

I joked that the Doctors were saying, “You will live until 125, if I don’t mind doing is slow and brain fogged…”

I was nearly at my wits end.

Then Jackie was given a FitBit HR by her mother for Christmas.

When I learned that these can track your sleep, and report on the stages of sleep I wanted one to see if my sleep could be a cause of my problems with CF.

I already knew I had sleep problems as I was told I had sleep apnea during my Heart Surgery, and had tests that confirmed I have bad sleep apnea (complex apnea) and had been using a sleep machine ever sense.

All of this we had to pay for out of our own packets and it was hard doing.

When my first sleep doctor came off as a controlling quack I quit him and when it alone, self-treating and adjusting my machine myself.
He had said I needed a ASV machine which I bought a open box 950 from a great place Secondwind CPAP (You can look them up used and near new machines at low prices)

And BY the current treatment standards I did a very good job and got my reports down to under 5 AHIs and often below 1 AHIs nightly.
But I woke up two to three times a night and often felt tired most of the time.

So from 2013 I had these brain fogs and fatigue daily. With no hope in sight.

Until this year and the FitBit device…it showed that although I was getting 8 to 10 hours of sleep it was NOT GOOD SLEEP.

Like crappie food, food that have empty calories, my sleep was empty quality sleep cycles.

Although the FitBit has major limits and I upgrade to a decaded sleep monitor, (A device that ONLY watches my sleeping made by ResMed a company that Makes Sleep machines, which NOW has disowner them...) Both units still showed that I was lacking real deep sleep (considered the most important part of sleep) and was also lacking good REM sleep as well. Without these sleep cycles I was NOT getting good sleep and refreshing rest.

Here is where the current sleep doctors are failing: they ONLY consider the sleep reports of AHIs and consider a report of fewer than 5 AHIs TREATED!!

There is NO Professional versions of these sleep monitors, none. They do not consider types of sleep cycles in their treatment and the health insurance ONLY look at what can be seen in a sleep study, where there is no monitoring of any cycles other that REM sleep.

And perhaps for most persons treating for Sleep Apnea this may be true.

But for me it was not taking care of my major problems…

When I first was told I had serious Sleep Apnea I was told I needed a ASV Sleep Machine which I bought and used 100% as sleep apnea was pointed at for causing my quad bypass due to years/decades of bad sleep as there was no other found real cause of my blocked arteries.

But two years ago trying to find help for my CF I was retested and told I only needed a simple APAP machine and the insurance provided me with one.

Thinking my sleep apnea was “Treated” I was looking everywhere for help. For TWO YEARS I was crashing daily!!

The FitBit showed that nearly every time I would slip into a deep sleep my apnea would get worst and my dumb APAP machine would react slowly and the over react and thus kick me out of the deep sleep cycle.

I then asked to get a new ASV machine and was told NO, there is no medical reason for it as it does not show up in any sleep study.

SO I did it myself again, and dug out my old ASV machine and did my own treatment settings following guild lines from its maker.

And it began to work and I began have better days and less crashes.

It took time but each month sense January has been getting better and better with the last month being the best yet.

I feel nearly as well as I used to either before CF, I can work full days once again, after it seems to have been 5 years.

So it seems bad sleep has possibly caused my heart bypass and really seems to have been causing my years of chronic fatigue…of brain fogging and fatigue.

Although I seem to be losing ground lately and have returned to using a FitBit Alta HR to again figure out what is happening.

I have complex sleep apnea, and I do get the big three Hypopnea, Obstructive and Clear air (centrals) in fact that seems to be my main scare, I am having bouts of centrals running for 40 or more minutes, one lasted over an hour.

The only thing keeping me from fearing sleep is that my Fitbit is not showing any changes in my heart rate during these things so I believe I am NOT in any major distress.

As I seem to be having these cycles of centrals when my system hits the MAX pressure so I am trying lowering the MAX pressure of some of the setting trying to lower the pressure to stop the on and off cycle.

I also set the apnea alarm so it will wake me if I do get into a non-breathing for longer that 30 seconds. This alarm is a new setting, I feel it is better to be woken that to go into one of these cycles.

For most of last year I was maintaining lower that 5AHIs per 8 hours of sleep.

In face most of last year I maintained readings of under 3AHIs. And I had great energy.

I had made no changes until this week because for the past month 8 days out of 29 I got into a odd cycle of Hypopnea and centrals and obstruction apneas.

I am trying to stop them.

Made the changes.

And for those watching, last night seemly thanks to my changes in the settings, I returned to my more or less normal reading of .91AHIs for 7:42 hours of sleep and by my FitBit 56 minutes of Deep sleep which is great and 62 minutes of Rem sleep all GREAT. (Clue Tony the Tiger Voice!!)

So that is my current story, after about 30+ years of problems I am at last much better.

Hope this helps some people.

Rich


Reposted as success stories may not be seen.
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#2
RE: Doing everything right and still dead tired??
Wow that's a story.... I feel for you and also happy you are getting things under control ... I am having issues with having ahi in the 4-8 range and like you doctors say I am good.... But I haven't woke up feeling that I am rested in years..... So it's nice to hear stories of people that stuck with things and are now feeling better....
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#3
RE: Doing everything right and still dead tired??
I hate REM sleep, it tires me alot. Thanks for the rife machine, i never heard of those before. I'll give them a try. Any protocols or specific machines I should use?
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