No help from cpap

Sorry, I am new to the site and was a little confused about how things work. This is a repost now that I have my member data filled in.

I was diagnosed with sleep apnea 2 years ago following a sleep study. The study showed that my AHI is 1 but I had 21 RERAs an hour (my RDI was thus 22, which classified me as having sleep apnea). In my titration study, they did not measure RERAs, but my arousal index was 20. In my following sleep study, they did not measure RERAs or give an arousal index, so I am having trouble telling if my cpap has actually improved my sleep apnea (meaning something else is causing the sleepiness). However, during this study I only spent 13% of my time in REM sleep and in all of my studies my rem latency was about 4 hours (240 minutes). I have used my cpap, with a pressure setting of 7 and a full face mask, for the last 2 years but if anything I am only getting sleepier. I have only occasional leaks and they are always small. I am 19 years old, weigh 120 lbs, and have been checked for every other possible cause of daytime fatigue and sleepiness (thyroid, addisons, vitamin d deficiency, anemia etc.). I use a humidifier, and tried increasing the pressure to 8 and then 9, but this did not help my sleepiness and only increased the pressure in my ears (I have been having problems with my Eustachian tubes for the past few months). I have seen two ENTs neither of whom see any problem, however when I lie down my adenoids swell, obstructing the nostril on the side I lay on. I am hoping to get an ENT to fix this (through ablation or a turbinectomy) but my sleep doctors tell me that my cpap should still work despite my nasal problems and my high arching palate (which I think leads to my tongue obstructing my airway). I have tried all kinds of nasal sprays, nasal strips and nasal cones and nothing helps. I sleep with my head elevated, but wedge pillows give me back problems. Despite using the humidifier I still frequently wake up with a dry mouth and drool in my mask. What else can I try? At this point, my sleep apnea is affecting every aspect of my life and is leading to all kinds of problems in other body systems. Also, I currently just view my AHI, hours used, and leak data on my cpap. Is there a way I can use my data card to find out more? I was never told about that. Thank you in advance for your help.

Why have you posted this same note in 3 different places? I was tempted to delete two of them, but as they're not 'spam' I didn't, however you're also sort of hijacking other people's threads by doing it and it might be best to just stick to the one for now... it will still be answered. Your note may help others though, and welcome to the forum.

mlawsonca wrote:I currently just view my AHI, hours used, and leak data on my cpap. Is there a way I can use my data card to find out more?

You can use SleepyHead software to see more detailed data.
https://sleep.tnet.com/equipment

As to why you are still sleepy during the day...is that your primary complaint? Or is it fatigue which is different?
How many hours of sleep are you getting? Are those hours of sleep fragmented with a lot of wake ups, if so, about how many?
And do you take any meds of any kind for any reason?

Sometimes all our problems aren't related to sleep apnea despite us wanting them to be.

For the drool in the mask...and dry mouth...mouth breathing causes the dry mouth and the humidifier can't always add back enough moisture to prevent the dry mouth. Some people just find that their mouths dry out more easily than others...perhaps adding one of those products designed to help with dry mouth.
The drool...not much you can do other than add maybe something just inside the mask to absorb the drool and make it less annoying or maybe use a mask liner to help absorb some of the moisture.

mlawsonca wrote:I have seen two ENTs neither of whom see any problem, however when I lie down my adenoids swell, obstructing the nostril on the side I lay on. I am hoping to get an ENT to fix this (through ablation or a turbinectomy)

Adenoids are between the back of the nose and the throat. You may be thinking about the turbinates (nasal concha) which are within the nasal passageway. https://en.wikipedia.org/wiki/Nasal_concha

When a person lies on their side, it is normal for the turbinates on that side to swell. Gravity pulls blood down to the lowest side. If the turbinates are enlarged or the nasal passageway is narrow, this may cause significant blockage in the "down" nostril.

If this is a significant problem for you, a consultation with an ENT should be scheduled. During the visit, the ENT should perform an In-Office Nasal Endoscopy & Laryngoscopy (http://www.tampaent.com/treatments-nasa ... el-fl.html) - it only takes a few minutes. The ENT may also want to test for allergies on this visit. At the end of the visit, the ENT should make a recommendation, if necessary, for treatment and/or surgery.

Did the two ENTs you saw perform this scoping procedure?

As to the first comment, you can take down the other post. I posted that before I was a member and someone commented I should post as a member so people have access to more information. But since the post wasn't tied to my account, I can't take it down.

As to the second, sleepiness during the day is my primary complaint. I am also suffering from fatigue, but the sleepiness is more disruptive. I sleep about 10 hours a night. These can be fragmented with me remembering up to five or six wake ups (often having trouble falling back asleep), but frequently I wake up feeling exhausted and like I haven't slept at all despite not remembering waking up. And the only med I take is birth control due to hormonal imbalances. I have never been fully convinced that sleep apnea is causing all of my problems, but all kinds of specialists have tested me for everything they can possibly think of, and have found no reasons for why I am constantly sleepy.

As to the third, yes, thank you, I meant turbinates not adenoids. Both scoped me but neither saw a problem. I have been checked for allergies (negative) and have tried Flonase for a period of over six weeks on two different occasions. I'm going back to see an ENT shortly because my sleepiness has gotten a lot worse since having a very persistent sinus infection (which is when I started looking at my turbinates). But my doctors think even difficulty breathing through my nose would be solved by a cpap. So I really am not sure where to go with that.