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Been afraid to post, but need the help.
#1
Been afraid to post, but need the help.
Hello there.  So I heard about this forum a while ago, but never signed up because I’ve been hoping to just keep on working on my OSA on my own; however, it’s just gotten to the point where I don’t even know how I get through most days because I am just a tired, miserable, foggy mess on a daily basis.  Also, with COVID-19 becoming much more pervasive, I want to make sure I can do what I can to protect myself as it relates to my OSA.

Anyway, I was diagnosed with OSA in February 2018 with an AHI of ~31.  After a massive struggle with the doctor and then with the medical supply company, I got my Philips DreamStation in June 2018.  I was so excited because I’ve been struggling with sleep to varying degrees since I was a child.  I started having sleep paralysis episodes around the age of 8 and have always had issues with falling asleep (still do), but it got much worse once I entered my 30s.  I wasn’t able to stay awake at work no matter how hard I tried and found myself falling asleep even while driving.

Unfortunately, my excitement faded as I have yet to feel any sort of benefit from using the CPAP.  During the summer of 2018 when I was about 2-3 months into my therapy, I was driving more than an hour to work each day and I couldn’t even remember most of the drives into work.  I would essentially blackout and somehow maintain myself on the road.  That had been happening before the CPAP and I was dismayed that it continued to occur.

During that time, I had been seeing a sleep specialist, but only about once every three weeks.  It seemed like the visits were just to ensure my compliance with the insurance company and less about really assessing my progress.  Unfortunately, I lost that job in January 2019 and have yet to find another job that offers benefits; therefore, I haven’t been able to regularly see a doctor that could assist me in this process.  More unfortunate is the fact that I have been feeling worse and worse since starting the therapy.  I want to do nothing but sleep for most of the day (this feeling goes away at night when trying to fall asleep, of course), my mood is progressively getting worse and I’m quicker to anger than I ever have been in my entire life.  It puts a massive burden on my wife as she has seen how much my sleep issues have affected me throughout the years (we started dating when we were 17, we’re now both 35).  The effect it has on her affects me almost as much as the physical symptoms affect me. 

To provide context on me physically, I am a 35-year-old male and have had struggles with weight.  My height and current weight certainly have me well within the obese territory (5’7”, ~260 pounds), but I have been as low as 190 during this time.  Unfortunately, that “low” probably still means that my weight has been a factor into why the therapy is ineffective, but I’m speculating.  My CPAP pressure was set to Min 5 and Max 17 (FLEX 2) when I first received it with my 90% Pressure falling within 15 - 17 regularly.  I found out two months ago how to adjust the pressure manually and because I have been desperate for so long, I’ve tried different ranges.  Unfortunately, the best reading I’ve had in recent memory was a 5.8 AHI sometime last week (according to DreamMapper).  I woke up that morning and did feel a difference, but even with the same pressure range (Min 8, Max 15.5), I had an AHI of 16.9 this past Sunday and felt horrendous the next morning.

I have tried other ranges with the min staying between 7 - 8.5 and the max ranging anywhere from 13 back up to the original 17, but nothing seems to be making a difference.  I’ve tried tightening my mask to make sure it doesn’t leak (which hasn’t been too much of an issue throughout my entire therapy so far), but it just seems to irritate my skin more than anything.

I know I just typed out a lot of words after saying I’ve been afraid to post, but I’m definitely in need of some advice.  My life just feels like a fog and with not having insurance (not that having it would do too much right now with the current COVID situation), I can’t see a doctor to assess my situation.  I’ve read a lot of posts on this forum and the community seems genuine and pleasant, so I decided to finally stop lurking and see if any advice could be sent my way.

Thank you all in advance and I look forward to talking to others who have been in this situation (or who know others who have been).
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#2
RE: Been afraid to post, but need the help.
Do you always use your CPAP machine when you're sleeping?
Sleepster
Apnea Board Moderator
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Been afraid to post, but need the help.
Welcome to the forum.

We can and well help. But we do prefer to see data from your Dreamstation.  The best data is daily screenshots from OSCAR so download OSCAR and post a screenshot.  The organization link in my signature will guide you on which charts to include.
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#4
RE: Been afraid to post, but need the help.
The first step is to get an SD card for your machine and download OSCAR from the forum. Then post the data, I believe a screen shot, in this thread.

It is impossible to know what is going on without any data.

John
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#5
RE: Been afraid to post, but need the help.
Welcome SleeplessinPA. You've come to the right place, and you certainly have a need to roptimize your therapy.  I can't imagine how tough it is to be unemployed and struggling with health and weight at a time like this with the State and country shut down.  If you have a computer, you can access, it will be o great help to you and us if you will download the free OSCAR software.  This provides more detail on your respiration, apnea events and machine response than anything out there.  

My impression is that your machine takes you to relatively high pressure with a 90% pressure from 15 to 17.  The Philips Dreamstation is usually a bit slow to get to optimum therapy pressure when the minimum CPAP pressure is set more than 2-cm below your 90% pressure. Increasing the minimum pressure closer to your 90% results will help to eliminate the many hypopnea and RERA I'm sure you are still experiencing.  Once we take a look at your OSCAR charts, we can probably focus on more fine-tuning and other suggestions.  When you're ready, there are links in my signature to wiki articles that might be useful to you, and how to organize and post OSCAR charts on the forum.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
RE: Been afraid to post, but need the help.
G'day SleeplessInPA. Welcome to Apnea Board.

You've received good advice above - OSCAR is the key to understanding in detail what's happening with your sleep breathing.

I addition, it would be great if you could upload a copy of your sleep test report. We need to see all the charts and tables, not just the summary. Also, make sure you erase any personal ID before you upload the document (don't want your full name and phone number floating around on the world wide web).

I understand the feeling of being afraid to post. Too often we (men) put off health matters, sweep them under the carpet, can't be bothered going to the doctor. It's all because of an underlying fear of what might happen. But you've summoned up the courage and have shared your story among friends. We'll do everything we can to help you over this hurdle.
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#7
RE: Been afraid to post, but need the help.
(03-24-2020, 09:51 PM)DeepBreathing Wrote: I understand the feeling of being afraid to post. Too often we (men) put off health matters, sweep them under the carpet, can't be bothered going to the doctor. It's all because of an underlying fear of what might happen. But you've summoned up the courage and have shared your story among friends. We'll do everything we can to help you over this hurdle.

I really want to second what DeepBreathing has said here.  I was so struck that you put your fear right there in the subject line for your thread.  That's very honest and courageous of you. 

What you've been going through is incredibly rough, but you really are among friends here, and we will all help you as best we can.

Let us know if there are hurdles for you in using Oscar, would you?
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#8
RE: Been afraid to post, but need the help.
I don't have any context in which to place you and your several health difficulties, although I can empathize as I have both sleep apnea and have lately found myself with a bit of a belly.  Well...a fairly large belly compared to just prior to starting PAP therapy myself two-plus years ago.  I have added about 15 pounds.

I think you will get some good care here, and that you will probably figure out how to get the most out of your PAP therapy with some guidance and patience.

Would you be averse to tackling your weight at the same time?  It's not like you have much else to do...like so many millions around the globe.

I am not giving advice.  I'm going to describe me over the past four months, and tell you about my experience.  I'll be to the point, and brief.

I had to struggle and to hold my breath when bending over to tie my shoes.  I hated it!.  I had more heartburn.  I began to get several events of atrial fibrillation per day starting in December.  My AF had been in remission, or well controlled, for the past two years, and now it was acting up.  I knew I was developing insulin resistance, and probably would have metabolic syndrome within a couple of years if I continued to put on weight.

I began to read, and to watch youtube videos on diets, on fasting, on intermittent fasting, ketosis and ketogenic eating, on time-restricted eating.  The more I learned, the clearer it became that we were lied to by the sugar industry and that wretched Harvard PhD back in the 70's who was being paid by the sugar industry to badmouth fats.  In fact, it is clear, oh so clear, that we are more healthy burning ketones.  Our hearts are 20% more efficient using ketones, and our brains LOVE them.  We have less inflammation, and if we fast at times, we'll reverse our insulin resistance, the one problem that makes us put on weight.

So, I started on a 16/8 cycle of intermittent fasting, and soon found that I was perfectly happy at the longer cycle of 18/6.  This means I fast for 18 hours and then can eat to satiety during the next six hours.  Twice now I have fasted for 24 hours, and the gurus say we should do a 36-48 hour water and salt fast about once a month.  What it does is to force us to use ketones after we deplete our glucose reserves (near 12 hours), and it makes our insulin levels tank and stay low because we don't secrete insulin due to ketones...only due to proteins and to carbohydrates. We don't have an insulin response to fats...period.  So the idea is to eat few carbs, maybe 30 grams or less a day, and get the rest of what we need from protein and fats....good quality fats like Omega 3 and grass-fed animal fats.  Avoid plant-based oils like the plague because they comprise linoleic acid and that is inflammatory...and it goes rancid very quickly. 

It's more involved, as you might imagine.  People would go bug-eyed about all that fat, and wonder about hyperlipidemia and cholesterol.  Nothing to worry about at all, as you will learn if you begin to investigate this regimen.  But to continue with my experience, I lost 6 pounds the first three weeks, and have now lost a total of 10 pounds.  I can get back into my dress slacks and easily pull my belt past the hole I have been using since the fall.  This in just seven weeks.  Not bad.

Going without sleep brings on all sorts of problems, not least of which are diabetes, weight gain, suppressed immune system, and so on.  So, we really do need to get you sleeping better, and my friends will help you to at least an extent.  But I really hope you will find the time and motivation to deal objectively and constructively with your weight.  It can be done, and you can eat all the eggs and bacon you want...within reason, of course.  Not 3500 calories worth, anyway.

I hope I haven't intruded.
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#9
RE: Been afraid to post, but need the help.
Welcome to the group.. 

Use the search functions available.. but if you still can't find the answers you seek - NEVER be afraid to post your question/s.

There is a massive amount of supportive information available among the members here.
- They are not spelling/grammar errors.. I live in Australia, we do it differently Down Under  Big Grin -
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#10
RE: Been afraid to post, but need the help.
Following on from Mesentaria's post, my Dr suggested the "800 Calorie Fast Diet" to get my diabetes back under control. The diet we followed is by Dr Michael Mosely, but there are plenty out there. Just check that the author is a real doctor and not a movie star engaging in "wellness".

Following a similar regimen to Mesentaria's I lost 4kg in two weeks. It was tough going and I wouldn't have made it if SWMBO (aka The Boss) hadn't done it with me. After two weeks we had both lost 4 kg and half our clothes didn't fit any more. My blood sugar came down, as did my blood pressure - not cured by any means but no longer on the verge of being out of control.

The thing now is to follow through and not lapse back into bad ways. We eat normally five days a week and have two days on 800 calories (which is not really too hard just 2 days a week). Our late night suppers have disappeared - this is a hard thing for me, as I love some late night crumpets with Vegemite and honey. Licklips
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