Hello - I'm tired of being tired!

I'm a 28-year old man who has been using a CPAP machine (a Sefam DreamStar Auto) since September 2016.

In June 2016 I did a sleep study with the British Snoring and Sleep Apnoea Association, which confirmed that I have mild to severe obstructive sleep apnoea (OSA). As of September 2016 I began treatment for this with a CPAP machine and nasal mask. I was told by my GP that my tonsils were large, and I wondering whether this is a key factor behind my sleep apnoea and why breathing through my nose doesn’t feel completely free (which is why I resort to mouth breathing at night without a machine). I
also have a very thick neck – I would like to get my throat and nasal passages checked to see if there are any abnormalities which are likely to impede on my sleeping quality, e.g. possibly checking to see if I qualify for a tonsillectomy.

My (then) girlfriend in October 2012 commented on my abnormal sleeping patterns, and said that I underwent episodes of cessation of breathing during the night and then often waking up gasping for air. This was the first indicator of having some sort of sleeping problem and my housemates at the time were also aware of very loud snoring when I was asleep, including dropping to sleep unexpectedly during social situations. In recent times I have also suffered from depression, particularly in 2013/14 which is when I started taking medication. I thought this was clinical but it could be that my sleep apnoea was a major contributing factor towards my deteriorating mental health in recent years. This led to me dropping out of graduate studies in 2015 due to feeling constantly tired and not making very much progress in my work. My mental health is still affected in part to my incomplete sleep quality and this can take its toll on my performance in my job. I have been using a CPAP machine for almost two years and find that this hasn’t completely rectified the problem as my sleep quality has been somewhat variable. I would have hoped that by now the effect on my sleep would have been transformative rather than marginal and I do often still feel tired during the day.

In 2017-18 I tried the following:

- Setting myself a daily calorie limit of 1400
- Micro-managing my nutrient intake
- Losing 1.5 stone at one point
-Going to the gym 4-5 times a week
- Purchasing special pillows to make my sleep more comfortable
- Trying to get to sleep at 9-10pm
- Trying almost 10 different masks to go with my CPAP machine and having spent almost £1,500 on solutions relating to (and including) the CPAP machine
- Having multi-vitamin and other nutritional supplements
- Restricting caffeine intake and having herbal drinks before going to bed

Despite doing all of these things, sleep problems still persisted (e.g. early awakening). I'm not doing all these things now but the point is that despite having a period of doing a lot of things which I thought would make me healthier, things didn't improve. Especially during the COVID-19 quarantine, where I'm staying back with my family, I've noticed that my sleep quality has become empirically worse and after 3 years of using a CPAP machine I'm at the end of my tether with all the things I've tried over the years to fix my sleep, and it's affecting my concentration during my work (even leading to me dropping out of a PhD because I couldn't concentrate on the work and get enough done). An option which I had considered at the time was to seek a private consultation with an ENT specialist, and I was indeed told that I have a deviated septum and extra lingual tissue. I was also told that there was only a 25% chance that a septoplasty could fix my sleep apnea troubles and that an operation to remove the extra lingual tissue would require removing part of the back of my tongue which would be a risky operation, again with a low success rate.

I'm hoping that through this forum I can find some detailed advice and input which could help unlock how I can address my sleep issues, knock them on the head once and for all, and improve my quality of life for the better.

Please look at an attached PDF with some sleep data since the beginning of March. I moved back to my family house in the middle of March, due to needing to move out of university halls because of the COVID-19 outbreak.

I can't deduce any immediate sleep problems from the data but I've noticed that since moving back home my sleep feels empirically worse (although this could be due to other factors). Would somebody mind having a look at the sleep data and let me know if there is something that doesn't look right after mid-March which could be affecting my sleep without me realising?

Can't get your info to show up beyond a blank pg (at least on my iMac) but download Oscar (see stickies at top of main pg) and follow instructions for formatting and posting so we can see what's what = it's very complete and much better than other software out there.

Folks please note the machine the OP is using.
SEFAM DreamStar Auto
I doubt that OSCAR is compatible with it
It's not a Respironics product
http://www.sefam-medical.com/en/1141-2-2/

OP is welcome to try it though.
OSCAR https://www.sleepfiles.com/OSCAR/
http://www.apneaboard.com/wiki/index.ph ... stallation
http://www.apneaboard.com/wiki/index.ph ... rpretation

I suspect it is going to be like ResMed and Respironics and the only choice is going to be the SEFAM software that will work.

To the OP....your link requires a download of a pdf file. Most people won't download something they don't know anything about.
The best thing to do if you want to share it is take a screen shot of what is shown and post the image for us to see.

Before reading Pugsy's caution, I opened the pdf. (The first page is blank; the data start on p. 2.) The pressure settings are min 18 and max 20. Over a period of time, the index for OAs is 1.3, for obstructive hypopneas is 4.6, with a "FL runs" hourly index of 22.2. There's a fair amount of excess leaking.

All in all, this seems consistent with the OP's experiences of daytime sleepiness. Given the large tongue and deviated septum, I'm a little doubtful whether even higher pressures on a specialized machine would be much help.

Another visit to the ENT would be an excellent idea once that is possible. OP, you are not looking for surgery to "cure" your apnea; you are looking for surgery that would allow PAP therapy to treat your apnea and allow you some decent sleep.

I'm really sorry for all the woes your condition has caused you. I'll be hoping you'll get relief.

restless leg can cause the same issues as apnea. make sure they tested for restless leg.

Miss Emerita wrote: ↑

Sun Apr 12, 2020 10:15 am

Before reading Pugsy's caution, I opened the pdf. (The first page is blank; the data start on p. 2.) The pressure settings are min 18 and max 20. Over a period of time, the index for OAs is 1.3, for obstructive hypopneas is 4.6, with a "FL runs" hourly index of 22.2. There's a fair amount of excess leaking.

All in all, this seems consistent with the OP's experiences of daytime sleepiness. Given the large tongue and deviated septum, I'm a little doubtful whether even higher pressures on a specialized machine would be much help.

Another visit to the ENT would be an excellent idea once that is possible. OP, you are not looking for surgery to "cure" your apnea; you are looking for surgery that would allow PAP therapy to treat your apnea and allow you some decent sleep.

I'm really sorry for all the woes your condition has caused you. I'll be hoping you'll get relief.

Many thanks for your helpful response! My main goal was to keep my OA as low as possible, but even with numbers at around 1, I would still feel sleepy. What do the other figures that you've quoted mean?

With my Brevida nasal mask (the option that I've found works best for me) as well as a chin strap and micropore-taping my mouth shut, I can't think of any possible reasons why leaks would occur (would the diffuser cap being moved result in this?), which baffles me a bit.

It looks like your report shows an overall average of 13% of the time with leaks above their red line number which appears to be reported like Respironics machines report leaks...total leaks which include excess leak. The red line appears to also increase as the pressure increases which is also like Respironics reports leak.

When did you start taping your mouth shut? Recent nights show no excess leak. I don't think leaks are the cause of your problems. The 13% overall average is elevated because the first few nights your leaks were very bad but they aren't bad at all now.

I downloaded your report and I am reviewing it right now....if I am correct in what I think I am seeing...your treatment is far from optimal at this point. Give me a little bit to look at it more closely.

Pugsy wrote: ↑

Sun Apr 12, 2020 5:54 pm

It looks like your report shows an overall average of 13% of the time with leaks above their red line number which appears to be reported like Respironics machines report leaks...total leaks which include excess leak. The red line appears to also increase as the pressure increases which is also like Respironics reports leak.

When did you start taping your mouth shut? Recent nights show no excess leak. I don't think leaks are the cause of your problems. The 13% overall average is elevated because the first few nights your leaks were very bad but they aren't bad at all now.

I downloaded your report and I am reviewing it right now....if I am correct in what I think I am seeing...your treatment is far from optimal at this point. Give me a little bit to look at it more closely.

I must have started using tape around a year or so ago, yet I still manage to wake up with a mouth that's on the drier side.

Some clarification of the terminology seen on your report.

It appears this report is for date March 5, 2020 through April 12, 2020.

Your machine apparently flags central apneas and obstructive apneas as well as central hyponeas and obstructive hyponeas....and flow limitations.

Flow limitations are reductions in air flow that don't meet criteria for apneas or hyponeas...they are bad also. FL index or hourly average is 22...that's awfully high.

Your overall AHI for that period of time was 20.2....that's awfully high to be on the cpap machine.
It is broken down into
OBS AH...obstructive apneas and hyponeas...5.9...this is too high
CNS AH....central apneas and hyponeas ....14.3....this is way too high

roughly 75% of your AHI is central in nature.
Central apneas/hyponeas.....reduction in air flow but the airway is open...but no effort to breath
Obstructive apneas/hyponeas....reduction in air flow because the airway is either fully or partially blocked by collapsing airway tissues.

What are your pressure settings? It says minimum of 0.0 but I wasn't aware that any auto adjusting machine would go to 0.0.

Are you using any form of exhale relief? If so what setting?

The detailed graphs from March 5 do point to large leaks but later reports show much less leaking.
The pressure graph appears to go to around 15 or 16 with some excursions up to 18 and 19. You never see the pressure drop which makes me question the 0.0 minimum the report is saying.

Your therapy is far from optimal and no wonder your feel like crap. How to fix it....I don't know if it can be fixed with this machine.

If your tape is secure in the mornings then you are at times having substantial mask movement leaks.
If the tape is loose in the mornings then you might be having some mouth breathing leaks which can dry the mouth out.

Other causes for dry mouth....medication side effects or other health issues.

In what position do you sleep? For some people it doesn't make a difference, but for others it does.

Pugsy wrote: ↑

Sun Apr 12, 2020 6:19 pm

What are your pressure settings? It says minimum of 0.0 but I wasn't aware that any auto adjusting machine would go to 0.0.

I have my minimum pressure set to 18 right now, and the maximum is 20 (as high as it will go).

Pugsy wrote: ↑

Sun Apr 12, 2020 6:19 pm

Are you using any form of exhale relief? If so what setting?

I'm not quite sure what you mean...

I think it's also probably worth mentioning that I currently take 30mg of citalopram to treat depression. I have heard from one or two sources that this can interfere with sleep apnea. Could this be having a negative effect on my treatment?

citalopram....you might want to read all the side effects....fatigue is a major side effect
Here is one source. I suggest you google it's side effects and read up on it from multiple sources.
https://en.wikipedia.org/wiki/Citalopram
Also it belongs to a classification of drugs called SSRI and all of those types of known to mess with sleep and some even suppress REM stage sleep. Your can google "SSRIs and sleep" and read up on the studies done.

So while it is well known to mess with how we feel and mess with our sleep it isn't likely to affect sleep apnea itself. It isn't known to make airway tissues more floppy which could make OSA worse and it isn't well known to suppress respiration which might be a factor in central apneas. Usually drugs more in the opioid or pain management class are thought more likely to maybe cause centrals because they are well known to suppress respiration.