+- Apnea Board Forum - CPAP | Sleep Apnea (https://www.apneaboard.com/forums)
+-- Forum: Public Area (https://www.apneaboard.com/forums/Forum-Public-Area)
+--- Forum: Main Apnea Board Forum (https://www.apneaboard.com/forums/Forum-Main-Apnea-Board-Forum)
+--- Thread: New Member Intro (/Thread-New-Member-Intro--21603)
Pages:
1
2
New Member Intro - BB63 - 04-07-2018
Good day all,
I found the forum through another member who also belongs to an unrelated mailing list that I also subscribe to. I’m glad to be here, this forum looks like an ideal match for me.
I’m a 63 year old male, retired EE, who has lived an incredibly unhealthy lifestyle all my life. My health has improved significantly thanks to a significant lifestyle change, and I’m currently wondering if I really need a cpap machine at all. As of a few minutes ago, my Epworth Sleepiness Scale score = 0. More background info below. I will post my specific questions on the Software Support Forum soon.
I've used a CPAP machine for 20 years.
In mid January I did a major lifestyle change, which bore fruit in 3 weeks, and my health is still improving 2 today! I am diabetic, the weight loss and the avoidance of high glycemic index foods has dropped my fasting BG down to (around) 150 and that's totally without any insulin now! I used to commonly take 200 to 250 units of insulin per day to achieve BG readings of 200 or less!!! My Endocrinologist is still in a state of shock! I now have to see him once a month as he is concerned about the major changes in my body that have occurred in such a short period!
My Lymphedema was severe, it is almost non-existant now, I no longer have to wear compression socks! And the reduced swelling is close to eliminating the custom footwear I used to need! I now fit into standard off-the-shelf shoes! I take 1/4 of the blood pressure med as I took just 2 months ago. I lost 80 pounds between June and March, with the vast majority of the weight dropping shortly after the life style change in mid January. I still have another 100 pounds to lose. No soy, no gluten, no dairy, no added sugar (especially Fructose), no gmo and/or processed grains, no canned or prepared foods. I recently discovered Functional Medicine practitioners and have studied their claims significantly. I soon realized that the American people have been sold out-thanks to the farming mafia, the government, the pharmaceutical industry, the USDA, the American Diabetes Association, the American Heart Association, the American Dental Association, etc....they ALL tell lies to keep us sick and cash flowing into their purses. I do not fear fat now, I've seen the light.
I had 4 toes that were due for amputation, today the swelling is gone and the redness has subsided-my doctor told me I could cancel the amputation appointment for now.
My doctor wants my thyroid hormone reevaluated, my daily dose will probably need to be reduced now!!! I now weigh 300 pounds (5'11"), so I still have another 100 pounds to lose!
High fat, low carb, with proper diet (modified Paleo/Keto) did it for me. Fat is needed to digest protein and the "cholesterol is bad" myth has been busted. Cholesterol is only a problem because it is the body's method of repairing the arteries damaged by man-made vegetable oil, trans-fats and intentionally contaminated foods. Clogged arteries DO NOT happen on a proper diet.
Processed vegetable oil directly interferes with the Mytochondrea in each cell and cells die that would otherwise be healthy. The Microbiomme is the key to immunity, proper nutrient absorption and inflammation in the body! Gut bacteria restoration has actually reversed dementia, Alzheimers and the brain can rebuild and repair itself once the body is free of the effects of the SAD.
Ever wonder why you feel like sh.t all the time? I thought I was the only person that felt so miserable-until I learned that more than half the US population was also afflicted!
My Leaky Gut Syndrome is likely significantly reduced, my white blood cell count is roughly 1/2 of what it used to be just 3 months ago! With the leaky gut repaired, the food particles that used to reach the blood stream are no longer leaving the body in a constant state of distress/alarm/SOS and the body's own defense and repair mechanism(s) can now function during more normalized sleep.
The brain and the body have mechanisms that work to remove toxins and environmental pollutants, but these systems do not function when the patient uses the SAD along with gmo, preservatives, food dyes and all the other poisons that our government still claims are 'safe' (or on the FDA's GRAS list), the GRAS list is the Generally Regarded as Safe List.
My (very expensive) and advanced allergy tests have been tabled (for the time being), these allergies often reverse themselves as the body approaches a more stable and proper condition (without vegetable oil, preservatives, artificial colorings and with a properly working Microbiomme).
GL to all and a special thanks to all who maintain and administer this forum!
BB
p { margin-bottom: 0.1in; line-height: 120%; }
RE: New Member Intro - SarcasticDave94 - 04-07-2018
Hi BB63, and welcome to Apnea Board.
Kudos and congrats on weight loss and other positive changes to your health.
As far as the need for CPAP or not, it would need to be determined by an overnight sleep study in home or at a sleep center of some variety. This will help determine what your AHI numbers are to determine where you're at on this. Check with your primary care physician to see what his/her advisement would be.
RE: New Member Intro - DaveY - 04-07-2018
Welcome to AB. I am newbie too. Got a lot of help, advice and tips here so far.
Dave
RE: New Member Intro - BB63 - 04-07-2018
Finances and lack of insurance prevent more expensive professional sleep studies + related help.
And, just 3 short months ago, I was always tired. I would wake up in the night, look at the clock and go back to sleep again-only to wake up again....over and over. I would go to bed and try to sleep, sometimes never being able to go to sleep. I would drop only when I got so exhausted I couldn't stay awake. I basically had to sleep at all hours by keeping my schedule open. I'd get up and wish I could go back to bed again.
This horrible sleep went on for years, it was running my life. All this changed when I started my new lifestyle.
Now, I only sleep for 5 or 6 hours a night, but the sleep seems much better and I wake up rested. I don't have memories of waking up in the night and going back to sleep. So, based on the previous history and the more recent (perceived) changes in my sleep, I began to suspect I didn't have a sleep apnea problem anymore.
I've studied Functional Medicine and the brains interaction with the sleep cycle. Being a retired EE, I began to wonder about my sleep paralysis and how to quantify it myself. I have been noticing that my blankets don't get messed up and/or end up on the floor during my sleep anymore!
And, I began thinking about detecting REM sleep and measuring brain activity-which is not such a big deal (technically) due to my former occupation. And, I might be able to quantify my periods of apnea with electronics and data logging-or even recording the sound of the sleep with a computer and a microphone. I might be able to tap into the control signals for the turbine and data log them directly-effectively measuring the power consumption necessary for the turbine to maintain a constant pressure.
I also used to have Circadian Rhythm problem that was quite severe. It now appears to be greatly diminished. Ten PM to midnight bedtimes are the rule now.
I used to take 150 uG of Amitryptlene as a sleep aid, now I only need 25 or 30 uG each night. I can now sleep on my back-for the first time in years!
Basically, I am looking for ways to support the hypothesis that my sleep has improved. Only then can I consider expensive professional sleep relayed medical services.
My emphasis from home designed homebuilt hardware has shifted as a result of reading this forum and after realizing independently written open source software can interrogate my cpap machine SD card and possibly answer my questions regarding whether I should seek more expensive and professional sleep studies.
I hope to put my spare laptop into service (linux), just to have a dedicated computer to use with the software to read and evaluate the cpap SD card data.
I have no intention of shutting off the cpap machine without a doctors sanction. I did try to get the AHI reading from the cpap machine directly-but no joy.
Regards, and please follow my journey on the forum and comment if appropriate.
BB
RE: New Member Intro - SarcasticDave94 - 04-07-2018
FWIW If I'm correct, and this is assuming I've seen your correct CPAP is an S9 Escape: that model is not data capable, meaning there's limited sleep info to be gathered off of it. Not being familiar with the machine specifically, it should have a display that can give you basic sleep data that you can share here if you wish. The setting gurus will help decipher, can assist in optimizing, and help you determine how well CPAP is treating you.
RE: New Member Intro - Ron AKA - 04-08-2018
BB, welcome to the forum. I am also a retired engineer, the plumber (ME) type, not the sparky (EE) type. The pain of having apnea aside, I am totally fascinated with the technology in these modern CPAP machines. I suspect the next generation of them using artificial intelligence is probably just around the corner. If I was young again, that is certainly something I would like to be involved in. In the latter part of my career, I had some projects where we were investigating the the use of AI in fine tuning NOx control in large coal fired power stations. Interesting stuff.
But back to the issue at hand. Like Dave my understanding of the ResMed Escape is that it does not capture detailed data and is also not supported by SleepyHead. If so, you are probably limited in what you can get from the machine. However it should at least give you an AHI. If your AHI is low and I see your pressure is at 8.5 cm which is also fairly low, there may be some potential to discontinue use of the CPAP. You might want to consider a more advanced CPAP, although I understand you are trying to actually stop use of one, but it would give you the data to support the decision. Start with finding which machines are supported by SleepyHead, and they start looking around on the used markets for a more advanced model, like the ResMed S9 Auto, and some others.
So what is your AHI? Is the machine in fixed pressure CPAP mode at 8.5 cm? That would be a starting point as to where you are at...
RE: New Member Intro - BB63 - 04-09-2018
Hi Dave,
I'm thinking that a full blown hacking into the cpap is needed-but I'm getting ahead of myself!
I had to retire 20 years ago at age 40 due to arthritis, at the time it was called 'early onset arthritis'. I was unsafe in the Fab area (semiconductor fabrication), because it's a dangerous place. And my mobility issues might mean I couldn't self-evacuate in case a toxic gas line broke, or there was a silane, arsine or hydrofluoric acid release (amongst other nasty stuff). I specialized in plasma deposition and etching machines.
My evaluation of the CPAP machine I have does indeed that it does not collect data in any way. In fact, it does not even provide an AHI (per the manufacturers Clinical Manual). So, I'm back to square 1, and don't need the sleepyhead software at this time. Unfortunately, I cannot ask (on this forum) whether the users might have any used CPAP's for sale-so I won't even go there! Used S9's (from licensed medical sales organizations) that do support data collection are far to expensive!
Home sleep tests still cost to much for my budget.
I'm not sure if I can rent a datalogging CPAP for a month or not. Even amongst the datalogging CPAP's, not all of them record high resolution scans of each respiration cycle-which I believe would be invaluable in evaluating whether or not I still have apnea.
And, in my studying of apnea, I conclude (preliminarily) that I need a BPAP-I'm not even sure why they make CPAP's! The 'hot' setup for CPAP (IMHO) would be a conventional CPAP machine feeding a scuba regulator and used with a scuba mask. The scuba regulator vents exhaled gases into the atmosphere, no constant mask leak would be needed at all! Today's scuba regulators are user serviceable, a big plus. There would (obviously) be some other electronics needed.
And, I believe that a full time pulse oximeter should be used, with the power to wake the user (loud alarms and/or mild shock) if O2(sat) becomes O2(depleted) at anytime during the nights sleep.
I'm still studying the issue, it is quite complex actually.
I'd be interested to hear whether others have undertaken similar hacking efforts. Obviously hacking of the CPAP isn't for everyone and I fully understand the reasons and the risk!
BB
RE: New Member Intro - SarcasticDave94 - 04-09-2018
FWIW Supplier #2 has lightly used CPAP machines you might want to consider. If you're more adventurous, Amazon and Craigslist may have something, just apply more caution. I have attempted to sell items on OfferUp,it's similar to Craigslist IMO.
I feel the pain on the arthritis issue, I have similar difficulties. Best wishes on better CPAP successes.
RE: New Member Intro - Ron AKA - 04-09-2018
The S9 Escape manual indicates there is a SD data card which can be removed and sent to a clinician for data analysis. I suspect there is no detailed data, but there must be summary data like hours of use and AHI. Perhaps you could copy the data from the SD card and send it to someone that has ResMed software to read it?
Another thing you could try is going into the Clinical Menu system. On the other S9's you do that by pushing the menu button and round button together for 3 seconds. That may let you look at some data. Don't know. See this link on how to get into this menu.
S9 Setup
RE: New Member Intro - Melman - 04-09-2018
I believe I saw a comment to the effect that if your AHI is low and since your pressure is low (8.5) you may not need to continue CPAP use. I would be very cautious with that rationale. The AHI you see from your machine indicates the frequency of events when treated. Your untreated AHI could be significantly higher. 8.5 is a low pressure but I was originally diagnosed with and AHI of 29 and placed on constant pressure CPAP at a pressure of 9. My treated AHI was reduced to the range of 2-11. I am now using an APAP at a range of 9-14. My 90% pressure is 10 and my AHI is consistently below 1.0. From my experience, it is clear that a relatively low pressure can be achieve a large reduction in AHI.