Decided to finally reach out for some help

Hi all

I was diagnosed with Sleep Apnea some three years ago. I'm actually still slightly perplexed at how the doctor arrived at this conclusion, that I needed CPAP therapy, considering that my AHI at the time of diagnosis was only 7.0, and from reading the posts on this forum, that's quite a low number.

Also, as many others have also reported on this forum, my sleep lab session was, in my opinion, a fiasco. I hardly got to sleep, after hours of tossing and turning, that I had hardly been asleep for what I'd say is two hours before the session was over and I got dressed and went to work.

I had two sessions done 1) in a sleep lab in a local hospital, and 2) in my own home. Both sessions were less-than-ideal from the perspective of the number of hours sleep I managed to get. In both cases the wiring and tubing interfered so much with my ability to fall asleep, that I spent the majority of the night awake... albeit in the second session at home I did manage to get about 4 hours of sleep in.

My GP reviewed the sleep study results, and in both cases my AHI was about the same. The reports also showed I had RLS, and also that my pulse ox went as low as 80% for a significant part of the time I was asleep.

About 6 years prior to my diagnosis, I went in for gallbladder surgery and my Anaesthetist came to me post-op where I was recovering to inform me that I had given him and his team quite a "scare" as, during general anaesthesia, my SP02 kept dropping below 90%. He urged me to seek some advice from my GP on this matter, as in his opinion it could be indicative of "deeper issues". Being somewhat of an ostrich, however, I decided to hide my head in the sand in the hopes that these "deeper issues" would just vanish on their own.

A few years after that, again finding myself on the operating table for a different procedure, and again under general anaesthesia, the Anaesthetist (a different person at a different hospital) told me the same thing: My SPO2 went dangerously low during the procedure.

Also, my wife kept reporting to me, since the early days of our marriage, that I appear to stop breathing during my sleep. Again, me being the ostrich that I am, I just hid my head in the sand.

Pressure from my wife finally prompted me to talk to my GP. He ordered the sleep studies... and the rest is history. Frankly, I was surprised three years ago that the reports said that I only had a very "mild" case of Sleep Apnea. I was expecting the severity to be higher. What surprised me even more is that a supposed "mild" case would require me to use a CPAP machine.

Incidentally, I've been using the ResMed Airsense 10 machine for the past three years.

Now for the actual reason for my post today:

I was diagnosed in Jan 2018. I started on CPAP in Feb 2018. For the first 24 or so months I felt the machine was helping me. I'd wake up feeling far fresher and more functional than I'd ever felt. Before CPAP, in fact for as far back as I can remember (including back to childhood) I would seldom if ever wake up feeling bright-eyed and bushy tailed. My head would be spinny and heavy, but I just assumed that this is how everyone wakes up. Any reports of people springing out of bed with full mental clarity and ready to tackle the day was, in my opinion, pure hyperbole. People exaggerating or making things up. But being on CPAP made me a believer that such a condition did actually exist.

That is, until about 6 months ago... when that heavy-headed feeling and fogginess returned.

I naturally suspected the equipment to be faulty. I'd been cleaning the tubing and masks per the instructions on a very regular basis, and had been changing the filter whenever the machine told me to.

At the time of purchasing the CPAP machine from my local Resmed outlet, the nurse/technician working there told me in clear terms that the machine had a SIM card installed and no matter where I was in Australia, my machine would transmit nightly data to them, so they'd be able to monitor my progress remotely. In addition, the same data would be recorded locally on an SD Card. They also told me that if they felt that something was amiss, they'd contact me to ask me to bring the machine in. In fact, I'm sure they also said that they could make changes to my set-up remotely, but I could be wrong.

Naturally, when I starting feeling heavy-headed about 6 months ago, I thought to myself that surely ResMed would have contacted me if they felt something was wrong. The fact is that after grabbing my money in 2018, and sending me home with my new CPAP machine, they never got in touch... ever. The only time I'd speak with them is when I'd go back to the Resmed clinic to buy a replacement nose piece for the mask, as these items appear not to last for more than a year. And even then, I'd only deal with the clerk at the front-desk.

When I took the initiative to go back to Resmed, to consult with them as to why I was no longer feeling fresh waking up, they informed me to my surprise that "somehow" the remote monitoring option on my machine was switched off and thus they'd never monitored me... ever.

My mistake at that time was that I got upset about this "somehow" taking place. I asked them "surely you're not insinuating that I switched the function off, I don't even know how to switch it off"... at which point they told me to leave. So, I never got any answers.

I went back to my GP and he said that I had no other choice but to deal with the people who sold me the machine.

So, I find myself on this forum because I am convinced that the people running that particular Resmed outlet will never be able to help me, as they are either a bunch of crooks, or incompetent, or both... Very happy to sell me things, but not willing to guide me through a territory that I know nothing about.

I've downloaded SleepyHead and imported all my data from the SD Card. I'm now looking at a dozen graphs and have no clue what I'm looking at.

I do apologise for this post being so long, but I feel one more point is worthy of mention:

I recently purchased a Garmin watch to help me understand a few things about my cycling performance, as I cycle recreationally between 50 and 100kms a week. The Garmin comes with a handy pulse ox monitoring and recording function that operates when I sleep. I decided to check the pulse ox graph that it generates, and was shocked to find that a few nights ago my SP02 levels dropped to a low of 79% and remained in the 80's for about an hour. During the day, my SP02 is never higher than 94%.

I'm trying to correlate the low pulse ox readings with the Sleepyhead data for that same time period. But, as I said earlier, I haven't got a clue what I'm looking at.

Where can I find information on how to decipher the Sleepyhead data? Unfortunately their website doesn't make things easy to understand.

This is all very confusing to me, as the Redmed machine routinely tells me that I'm only experiencing between 0.1 and 0.4 apnea events a night... sometimes 0.0 events. But never more than 0.4.

Urgent advice and assistance is humbly requested from all the good folk on this board.

Kind regards

haroonc wrote: ↑

Thu Feb 25, 2021 6:57 pm

Hi all

welcome to the zoo!

haroonc wrote: ↑

Thu Feb 25, 2021 6:57 pm

I've downloaded SleepyHead and imported all my data from the SD Card. I'm now looking at a dozen graphs and have no clue what I'm looking at.

Where can I find information on how to decipher the Sleepyhead data? Unfortunately their website doesn't make things easy to understand.

no big deal, but you might want to download oscar software, which is the current iteration of sleepyhead. you can use what you want, it's just that sleepyhead has been abandoned while oscar is ongoing.

that said. please post your charts here, right here in the forum. folks will be happy to guide you through the process of what these charts mean and how to proceed in your therapy.

good luck!

OSCAR https://www.sleepfiles.com/OSCAR/
http://www.apneaboard.com/wiki/index.ph ... stallation
http://www.apneaboard.com/wiki/index.ph ... rpretation Interpretation

God news! Most folks are convinced that their sleep study results were bogus, but they don't need much sleep to get a fairly accurate diagnosis. Also, the folks who provided you your equipment (DME) are acting "normal". As soon as they sell your equipment, they move on to someone else.

- download OSCAR on your computer... it's free.
- post a couple of typical nights, and lets see what's going on.

We are here to help you thru this...

Sheriff

Thanks for everyone's reassuring replies, and also for pointing me to OSCAR. I've installed it and imported data from my SD Card.

I assume posting screenshots is acceptable? As I have a limit of three attachments, I'll have to pick them wisely.

Thanks again for the assistance.

Kind regards



Pulse Ox graph from Garmin

Looks very good from here...

One possibility is that as of 6 mos ago, possibly from being stuck at home like so many now, you've gained a little weight, and that can contribute to how you feel now, though Oscar looks good. Others will help interpret better than I can, so give them the day to show up. You might also want to ask your GP about other possible causes for not feeling great... not everything is 'apnea'.

Please don't do snippets of the detailed reports...you can get all we need on one screen shot.
And yes..3 attachment limit per post. If you need to do more...do another post.

That said...on paper your report looks really good. Better than mine sometimes.

I don't know what to make of the pulse ox report yet. It isn't something I am familiar with in the format presented. It does look a bit like the contacts came loose at times.

So lets get back to basics since you aren't feeling the good numbers.

How many hours of sleep do you think you average? Not just laying in bed with mask on but real sleep?
Are those hours fragmented with very many wake ups?
Do you take any medications of any kind? If so, what?
Any other physical or mental health issues going on that might impact sleep or how you feel?

If those results from your watch are typical, you might want to consider buying a pulse oximeter that is compatible with Oscar. Here's the information Oscar provides:

OSCAR is currently compatible with Contec CMS50D+, CMS50E, CMS50F and CMS50I serial oximeters.
(Note: Direct importing from bluetooth models is probably not possible yet)
You may wish to note, other companies, such as Pulox, simply rebadge Contec CMS50's under new names, such as the Pulox PO-200, PO-300, PO-400. These should also work.
It also can read from ChoiceMMed MD300W1 oximeter .dat files.

Julie wrote: ↑

Fri Feb 26, 2021 5:50 am

Looks very good from here...

One possibility is that as of 6 mos ago, possibly from being stuck at home like so many now, you've gained a little weight, and that can contribute to how you feel now, though Oscar looks good. Others will help interpret better than I can, so give them the day to show up. You might also want to ask your GP about other possible causes for not feeling great... not everything is 'apnea'.

LOL... thanks Julie. Weight gain occurred in 2020 right after COVID hit... but by September I was fed up with how I looked, so got to work and by January 2021 reached my lowest weight in my entire adult life.

Pugsy wrote: ↑

Fri Feb 26, 2021 7:36 am

Please don't do snippets of the detailed reports...you can get all we need on one screen shot.
And yes..3 attachment limit per post. If you need to do more...do another post.

That said...on paper your report looks really good. Better than mine sometimes.

I don't know what to make of the pulse ox report yet. It isn't something I am familiar with in the format presented. It does look a bit like the contacts came loose at times.

So lets get back to basics since you aren't feeling the good numbers.

How many hours of sleep do you think you average? Not just laying in bed with mask on but real sleep?
Are those hours fragmented with very many wake ups?
Do you take any medications of any kind? If so, what?
Any other physical or mental health issues going on that might impact sleep or how you feel?

Thanks Pugsy... will post the remaining graphs as well (didn't consider submitting multiple posts).

How many hours of sleep do you think you average? --> I'd say between 5 and 7 hours each night (real sleep)
Are those hours fragmented with very many wake ups? --> Yes, fragmented. Three wake-ups are normal for me.
Do you take any medications of any kind? If so, what? --> No prescription meds. Just vitamins and fish oil.
Any other physical or mental health issues going on that might impact sleep or how you feel? --> Well, people say I'm nuts, but I've learned to ignore them . Kidding. Nothing diagnosed mentally. Physically also, for the last few years, have had nothing major to report other than some slightly elevated liver enzymes due to gallbladder removal.

Miss Emerita wrote: ↑

Fri Feb 26, 2021 11:15 am

If those results from your watch are typical, you might want to consider buying a pulse oximeter that is compatible with Oscar. Here's the information Oscar provides:

OSCAR is currently compatible with Contec CMS50D+, CMS50E, CMS50F and CMS50I serial oximeters.
(Note: Direct importing from bluetooth models is probably not possible yet)
You may wish to note, other companies, such as Pulox, simply rebadge Contec CMS50's under new names, such as the Pulox PO-200, PO-300, PO-400. These should also work.
It also can read from ChoiceMMed MD300W1 oximeter .dat files.

Well, it appears in this case that ignorance truly is bliss, as before I owned this watch I was none wiser as to what my SP02 levels were at night. I agree with you that, now that I've gone down this road, it would be best to consider tying into a supported Pulse Ox device. Thanks for the info on the supported devices. Will look into them.

Remaining graphs:

We don't need all those graphs...just the basics along with the usual stuff from the left side.
Examples here. You can get all we need in one screen shot. If anything else is needed someone will ask.
viewtopic/t158560/How-to-post-images-for-review.html

Bright eyed and bushy tailed" is a myth.
It usually means the subject wakes up exceedingly obnoxious.
Who wants to be that guy?

chunkyfrog wrote: ↑

Sat Feb 27, 2021 12:24 pm

Bright eyed and bushy tailed" is a myth.
It usually means the subject wakes up exceedingly obnoxious.
Who wants to be that guy?