Background info re: fatigue and sleep study results

Greetings all,

After reading all of this, does anything stand out? Do you think I’m barking up the wrong tree? Any tips for increasing mask comfort or do I need to pursue a different one? Anything to note or change on my CPAP machine?

Some background information.
Not taking any medications.
Thin as a twig.
Male.
Mouth breather.
Deviated septum.
Family history of sleep apnea.

I’ve had issues with fatigue since around 18 years old and now I’m 30. Since about 21 my sleepiness, mental fog, lethargy, daily headaches, and concentration have seemed to worsen each year. Some days are not too bad (very few days). Most days feel like I’ve been hit by a train and wake up completely exhausted. Honestly, the fatigue is controlling, limiting, and ruining my life. I’m so tired of being tired and missing out on life.

I’ve set up a camera to record my sleep and see if I uncover anything. I’ve noticed it seems I wake every 4-12 minutes, depending on the night, and the arousals usually follow the same pattern - I seem to stretch my legs or back, let out a loud sigh, and change positions. I also capture myself snoring which seems pretty rhythmic and no chocking sounds.

I’ve had 5 sleep studies in the last 4 years - one at home, and 4 in the lab (3 polysomnography and 1 MLST). My first in lab study said I had periodic limb movement disorder at a rate of 68 movements per hour - definitely could be the cause of my fatigue and unrefreshing sleep. After trying several medications to help, nothing helped and I quit all the medications. My two following sleep studies did not detect PLMD. My thoughts were that the PLMD was a side effect of the antidepressant I was on during my first sleep study. In regards to sleep apnea, all have stated I do not have sleep apnea except for some borderline results on my most recent one.

Most recent sleep study results:
-AHI 4.6
-AHI during REM 13.6
-Sleep efficiency 67.5%
-Sleep spent in rem 22.7%
-REM latency of 165 minutes
-No significant PLMD
-61 spontaneous arousals which equates to 10.4 per hour

The doctor said he doesn’t believe I have bad sleep apnea based on all the data results and said I could try an oral appliance if I’d like. I declined and was diagnosed with idiopathic hypersomnia and was provided a script for Nuvilgil. He said to schedule an appointment for a follow up. I have an appointment at the end of this month to discuss CPAP options and masks to see if he thinks it could help or be the answer I’ve been needing.

I did my own research and decide to purchase a CPAP and see if it would help. I purchased a Autoset ResMed 9 and a medium Mirage Quattro mask but have only used it 4 times. I can’t seem to keep the mask on for more than 1-4 hours before it wakes me up or is too uncomfortable. My guess is I need a mask that is more comfortable. I have it set to auto and the pressure range is 4-20.

After reading all of this, does anything stand out? Do you think I’m barking up the wrong tree? Any tips for increasing mask comfort or do I need to pursue a different one? Anything to note or change on my CPAP machine?

Thanks for your time!

Welcome to the forum.

I'm not an expert, but some will be along shortly.

I also had trouble convincing my doctor that I had a problem. However my sleep study showed more significant problems.

Hang in there until some one with more expertise comes along to advise you.

Welcome Doce.

You will some great help here as soon as some of the more experienced members are around.

At the top of the main page are some links on some helpful information for newbies that will help you help them give advice.

Welcome to the forum.

Until you can actually sleep decently with using the cpap and the mask....not much chance of ever even remotely seeing if cpap helps or not.
Is there anything wrong with your nose in terms of moving air? Do you have a physical need to breathe through your mouth because the nose is chronically congested and you can't clear it up and that's why you chose a full face mask?
A deviated septum doesn't always mean a person can't use one of the other masks that has less of a footprint on the face.
Please read this from Perrybucsdad who also thought he was a mouth breather and just had to use a full face mask.
viewtopic/p663440/Mouth-Breathers.html#p663440

If you just have to use a full face mask....there are FF masks out there that have less footprint than the Mirage Quattro and would be more comfortable most likely.
Respironics DreamWear full face mask....or the ResMed F30
If a person isn't comfortable with a mask they aren't going to sleep so great...and we have to sleep decently to give the machine any chance in helping....so it all starts with the mask and getting sleep in the first place.

The machine you got does offer data to help us see what it is doing or wants to do but you have to again get good solid blocks of sleep to evaluate first.

I have no idea if cpap will even help your sleep issues but since you have opted to at least try it and see....get your mask issues sorted out first because if you can't sleep with the mask and use the cpap....no way to give the machine a chance.
I see it all the time...people have crappy sleep for some reason (and the number of spontaneous arousals reported means crappy sleep) but cpap doesn't fix spontaneous arousals. CPAP only fixes arousals related to breathing issues. People expect or want their spontaneous (means we don't know what is causing the arousal but it isn't breathing related) arousals reduced by cpap and cpap can't fix bad sleep that isn't caused by airway or breathing issues.
But to even give it a chance people have to sleep solidly as much as possible and having a mask that isn't comfortable isn't going to help the sleep quality at all.

Find a different mask that doesn't annoy you so much....even for people with documented sleep disordered breathing issues....the right mask is absolutely key to having successful therapy.

Thank you for the welcomes and the replies. I’m going to look into purchasing a dreamwear mask but without a script, it’s going to take me some time to find one.

The SD card is in the machine and ready to gather data once I’m able to actually keep the mask on for awhile. I’ll report back once I have my mask and some data.

Feel free to keep the replies coming.
Thank you

Check Amazon and EBay for masks. Replacement parts don't require a RX anywhere and sometimes you can build a mask out of parts. Just have to know which parts you need.
Sometimes Amazon has some good deals on complete mask packages and no RX is required.

Ask on the forum....often members have masks that they tried and just didn't like and will let them go to a new home for not much cost.
I have some parts to the DreamWear masks that I might could part with but I loaned out the headgear and it was supposed to be returned to me....but alas...I guess the person forgot that I either needed it back or money to replace it.

Maybe between what I have and some others might have we can build a mask for you with some slightly used stuff...unless slightly used freaks you out.

Pugsy wrote: ↑

Tue May 07, 2019 7:44 am

Check Amazon and EBay for masks. Replacement parts don't require a RX anywhere and sometimes you can build a mask out of parts. Just have to know which parts you need.
Sometimes Amazon has some good deals on complete mask packages and no RX is required.

Ask on the forum....often members have masks that they tried and just didn't like and will let them go to a new home for not much cost.
I have some parts to the DreamWear masks that I might could part with but I loaned out the headgear and it was supposed to be returned to me....but alas...I guess the person forgot that I either needed it back or money to replace it.

Maybe between what I have and some others might have we can build a mask for you with some slightly used stuff...unless slightly used freaks you out.

Depending on the size I have some pieces for a Dreamwear. I might have extra ff headgear. I also have a standard size Activa with two unopened cushions. Willing to pay it forward and send out to someone who needs it.

babydinosnoreless wrote: ↑

Tue May 07, 2019 8:42 am

Pugsy wrote: ↑

Tue May 07, 2019 7:44 am

Check Amazon and EBay for masks. Replacement parts don't require a RX anywhere and sometimes you can build a mask out of parts. Just have to know which parts you need.
Sometimes Amazon has some good deals on complete mask packages and no RX is required.

Ask on the forum....often members have masks that they tried and just didn't like and will let them go to a new home for not much cost.
I have some parts to the DreamWear masks that I might could part with but I loaned out the headgear and it was supposed to be returned to me....but alas...I guess the person forgot that I either needed it back or money to replace it.

Maybe between what I have and some others might have we can build a mask for you with some slightly used stuff...unless slightly used freaks you out.

Depending on the size I have some pieces for a Dreamwear. I might have extra ff headgear. I also have a standard size Activa with two unopened cushions. Willing to pay it forward and send out to someone who needs it.

I greatly appreciate both of yours generosity. I’d gladly try it out to see if t helps. Unfortunately, I’m definitely a mouth breather, even without a clogged nose, so it would definitely need the full face mask.

I located a dreamwear full face on amazon but it’s a medium wide. I’m not sure what size I would need but it doesn’t appear to come with different size cushions and I’m not sure if the frame is universal for all of the cushion sizes.

The frame is universal...if you can afford it get the medium wide and if that size cushion won't work well...I got some other cushion sizes you can just have.
There's not a huge difference in those cushions anyway unless you are like me with a tiny face/head. Even I can use the small and medium....most people have some leeway with the sizes.

There is a printable sizing tool...mainly the sizing is the width of the nose thing.


https://5faacd0c97cf0d23c6dc-064f3cd61b ... -guide.pdf

You didn't say if you routinely sleep on your back all night... that can definitely provoke more events and people go to great lengths to avoid doing it, something to consider if it fits.

The dreamwear frames fit all the cushion sizes. (Nasal, pillow and full face) Be careful though there are several different sizes of the frames too.

I was told I need a full face mask. Thankfully pugsy talked me into trying the nasal. It was surprisingly more comfortable. And I didn't breath through my mouth. Which is weird because I sometimes do in the daytime. Even if you do breath through the mouth there are tricks you can try. Some people use soft foam cervical collars others use tape or scrunchies or a combo of all to keep their mouths shut at night so they can use nasal masks. Zonker has a picture of his nightly rig in this thread. viewtopic/t175368/How-tohome-made-ideas ... t=Pictures

Good luck!

If your settings are 4-20, that might be part of your problem. Anything under 6 or 7 makes me feel like Im smothering. I have a brand new F20 air touch kit in Medium I would be willing to send you. I ask if it does not work out for you, send it to Pugsy for the donation box.

Couple of thought you probably have covered.

I assume your oxygen stats are good and you are not short of breath - yes?

I too am a mouth breather and had horrible dry mouth every morning. Since I have used CPAP it has stopped completely. I am using the DreamWear nasal cushion (not pillows) and have great success with it. If you do open your mouth the machine tries to shut it for you because the air will escape out of it instead of keeping the airway pressurized. It will take a week to get accustomed to it as well.

The DraemWear gear: Frame is in 3 sizes and medium fits perhaps 80% of the folks. I am 6'1 and 250# and use a medium. The small is REALLY small and the large is huge.

The cushions: you need to measure with the link Pugsy gave - important. I started with the "kit" and used the medium-wide but quickly discovered that it was much too wide for my face. I use the medium now. Again the small is real small and the large is for monsters.

Since you say you don't have any issues I would start the machine at 5-15 and Use the ramp feature with a 20-30 minute interval if it has that feature. Heated humidifier is desirable also.

I also have a small dish and use a cotton ball with a citrus essential oil to "freshen" the air in the unit - very pleasant indeed.

None of the CPAP supplies require a script that I am aware of. eBay has a lot of pieces but said and done you will likely end up close to the actual cost. I would jump all over the offers from other members however.

Good luck with the journey.

With the movement issue that certainly doesn't sound like a sleep issue. Possibly ask the doc about some mild muscle relaxer meds.