6 months into perfect therapy - just as tired

[DankShroud]

I'm an 18 year old male who starting presenting symptoms of sleep apnea at 16, and have been treated "successfully" with CPAP for the last six months. Awhile ago I dialed in my pressure settings (17-20 cm/H2O; maybe a little excessive, but it's comfortable and puts me at ease), found leak-free nasal pillows (less than 2 L/min) and downloaded sleepyhead. A month into treatment, I had a second followup sleep study that confirmed that CPAP reduced my nightly AHI to 1. The study ruled out UARS, narcolepsy, or sleep phase disorders. Every night for the last six months I sleep upwards of 10 hours on my stomach or sides wearing my mask continuously. I also use a flonase nasal spray for the rare congestion. Some nights I sleep 7 hours, others 14 hours. What never changes is my fatigue, brain fog and constant, extremely vivid dreams. I wake up with hours worth of dreams that I can recall. I have loads of false memories and must ask myself whether a memory is "real" or "something I dreamed of two months ago".

The cognitive decline seen in sleep apnea continues. Before this sleep disorder business I had a tested IQ somewhere in the 140s, straight A+s, was a competitive speaker and was set to attend top colleges. Now I'm very stupid. I can't write or communicate anymore etc.; I went off about this stuff on here in detail months ago, if anyone cares to look for it. I'm fighting to get admitted into my local community college's honors program. I have the cognitive-behavioral challenges of an obese premature autistic 8 year old with ADHD and enlarged tonsils - not the svelte strapping 6'1" young adult that I am. My fatigue never leaves. Half the day I'm stumbling, slurring my speech, spacing out and falling asleep. I fall asleep at the wheel, mid-coversation, at meals - you know, like someone with untreated sleep apnea would. Months ago I voiced these concerns on this forum and kept pestering the regulars until my questions were answered and I was sure my treatment was optimized. Now here I am, six months later, and just as exhausted. Iv'e seen GPs, an ENT, a "sleep dentist" and my regular sleep doctor. They each confirmed that my original mild sleep apnea (AHI 7.5) arose from my tongue closing off my oropharynx, that I was an ideal candidate for CPAP, and that sleep apnea isn't the root of my "issues".

Bloodwork shows I don't have hookworms, HPV, anemia, thyroid problems, lyme disease, low testosterone, lead poisoning etc. An MRI showed my brain to be thick, juicy and in perfect shape. Aside from mild sleep apnea, I'm healthy. While I don't have lyme disease, this page lays out my neurological problems very well: http://www.lyme-symptoms.com/1Lyme-Symptoms.html. Read under the heading "Cognitive Disturbances (Neuro-Lyme)". That's me. My constant fatigue, thinking problems, and crazy vivid dreams scream SLEEP APNEA. Nothing else really fits. Chronic Fatigue Syndrome/Myalgic Encephalomyalitis? No - I lack some key diagnostic features. Post Treatment Lyme Disease Syndrome? Not according to my doctor. Poor lifestyle? No. Depression? No more than usual. Carbon monoxide poisoning? Not according to the four detectors I bought.

Is a mild sleep apnea (AHI 7.5) really so life altering? Am I just another overdiagnosed and overtreated pawn in the CPAP/sleep medicine racket? Have the two years of sleep apnea left their developmental/behavioral scars? Is this just what sleep apnea does to a growing person? Is the human body able to cope with mild apnea like it's nothing? Thoughts from smart adults with sleep apnea please?

[Snoregone Conclusion]

There is one variable that jumps out at me that can be readily varied: have you considered the possibility that you’re getting too much sleep for what is healthy for you? Oversleeping can make one not operate at full efficiency, and leaves you groggy, and often more sleepy. The amount of sleep we need varies based on health, age, as well as how hard we’ve pushed ourselves, and we can sleep better when we have enough exercise.

The other question I’d have is if your pressures you’ve set your machine to are the pressures they used for the sleep study, and if you’ve been using SleepyHead to monitor your numbers with your set pressures.

[ChicagoGranny]

There is one variable that jumps out at me that can be readily varied: have you considered the possibility that you’re getting too much sleep for what is healthy for you?

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Teens need about 8 to 10 hours of sleep each night to function best.
https://sleepfoundation.org/sleep-topic ... -and-sleep

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The other question I’d have is if your pressures you’ve set your machine to are the pressures they used for the sleep study, and if you’ve been using SleepyHead to monitor your numbers with your set pressures.

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Awhile ago I dialed in my pressure settings (17-20 cm/H2O; maybe a little excessive, but it's comfortable and puts me at ease), found leak-free nasal pillows (less than 2 L/min) and downloaded sleepyhead.

[ChicagoGranny]

Is a mild sleep apnea (AHI 7.5) really so life altering?

You may be able to answer the question. What were your symptoms before treatment ------>

presenting symptoms of sleep apnea at 16

[TedVPAP]

You feel like you are sleep deprived and your AHI is low thanks to PAP. A low AHI does not guarantee sound sleep.
I would have a sleep study with PAP so that the quality of your sleep can be fully assessed (stages of sleep, arousals, …).

[ChicagoGranny]

extremely vivid dreams

People who are sleeping well don't often remember dreams. So, "extremely vivid dreams" is an indication you are not sleeping well.

Do you take any drugs or supplements? What about caffeine - even moderate amounts in chocolate? Melatonin supplements?

[DankShroud]

You feel like you are sleep deprived and your AHI is low thanks to PAP. A low AHI does not guarantee sound sleep.
I would have a sleep study with PAP so that the quality of your sleep can be fully assessed (stages of sleep, arousals, …).

Oh yeah, if it wasn't clear that "followup" study I had did include PAP. It was so my doctor could see if my sleep was disrupted while wearing CPAP. It wasn't, apparently.

[DankShroud]

extremely vivid dreams

People who are sleeping well don't often remember dreams. So, "extremely vivid dreams" is an indication you are not sleeping well.

Do you take any drugs or supplements? What about caffeine - even moderate amounts in chocolate? Melatonin supplements?

No drugs. I usually have one cup of coffee in the morning.

[Mogy]

DankShroud,
What you describe is usually not associated with an AHI of 7.5. That is more a severe case of OSA.

www.ncbi.nlm.nih.gov/pmc/articles/PMC41 ... o=0.757576

[ChicagoGranny]

"followup" study I had did include PAP

Get a copy of the summary of this study. It's usually one to two pages long. Let's discuss it. It would be good if you would remove the identification and post a copy here.

[DankShroud]

"followup" study I had did include PAP

Get a copy of the summary of this study. It's usually one to two pages long. Let's discuss it. It would be good if you would remove the identification and post a copy here.

I'll see what I can do. I can remember it ruling out UARS, restless leg syndrome, and effectively sleep apnea with CPAP. My doctor was convinced that nothing on the sleep study could pinpoint my fatigue.

[TedVPAP]

"followup" study I had did include PAP

Get a copy of the summary of this study. It's usually one to two pages long. Let's discuss it. It would be good if you would remove the identification and post a copy here.

I'll see what I can do. I can remember it ruling out UARS, restless leg syndrome, and effectively sleep apnea with CPAP. My doctor was convinced that nothing on the sleep study could pinpoint my fatigue.

Your doctor is convinced your sleep is fine, you are not convinced.
Having others look at the report will help.
From what I have seen, many sleep doctors are not very good. Find another sleep doctor to get a second opinion.

[ChicagoGranny]

My doctor was convinced that nothing on the sleep study could pinpoint my fatigue.

Given what I have read in this thread so far, this is my biggest concern --->

DankShroud wrote:
extremely vivid dreams

[kteague]

There is a difference between ruling out and not capturing evidence of the presence of the varying things that might show up during a sleep study. A condition is reliably ruled out only when worst case scenarios were captured during the testing. Just because something wasn't revealed during the test doesn't mean you don't have it. My first study was for classic sleep apnea symptoms, but no sleep apnea was shown on the study. Instead I was diagnosed with Periodic Limb Movement Disorder. However, I continued to wake up with my heart pounding and gasping for breath. It was 7 years later when a test confirmed what me and all my doctors were already sure of - I had obstructive sleep apnea. I had it back then - it just didn't show up the night of the test because my legs were too jumpy to let me sleep enough for it to manifest. If my doctor would have been knowledgeable about the possible interactions of OSA and PLMD, they would have retested me sooner rather than waiting until I deteriorated so far. I am not saying this to say you have PLMD, just an example that a study is not always the final word. As long as you are successfully using CPAP that is one thing you don't have to rule out. If I were you, I'd remain consistent. To not do so would just make going forward murkier.

You said narcolepsy was ruled out, so it sounds like you had an MSLT, or daytime nap study. Were there any intrusions into your nap times that might have prevented you from meeting criteria for a diagnosis of narcolepsy? Like maybe apnea events with arousals or limb movements? Was this early into your CPAP treatment and perhaps the newness of the sensations were an issue with being able to fall asleep? On one of my MSLTs that stood out to me. They wanted to start the count too soon. It always took me a moment to settle in with the equipment, so I had no confidence in their results being definitive. I agree with those who have suggested you post your test results and see if anyone happens to pick up on any clues within.

[DankShroud]

There is a difference between ruling out and not capturing evidence of the presence of the varying things that might show up during a sleep study. A condition is reliably ruled out only when worst case scenarios were captured during the testing. Just because something wasn't revealed during the test doesn't mean you don't have it. My first study was for classic sleep apnea symptoms, but no sleep apnea was shown on the study. Instead I was diagnosed with Periodic Limb Movement Disorder. However, I continued to wake up with my heart pounding and gasping for breath. It was 7 years later when a test confirmed what me and all my doctors were already sure of - I had obstructive sleep apnea. I had it back then - it just didn't show up the night of the test because my legs were too jumpy to let me sleep enough for it to manifest. If my doctor would have been knowledgeable about the possible interactions of OSA and PLMD, they would have retested me sooner rather than waiting until I deteriorated so far. I am not saying this to say you have PLMD, just an example that a study is not always the final word. As long as you are successfully using CPAP that is one thing you don't have to rule out. If I were you, I'd remain consistent. To not do so would just make going forward murkier.

You said narcolepsy was ruled out, so it sounds like you had an MSLT, or daytime nap study. Were there any intrusions into your nap times that might have prevented you from meeting criteria for a diagnosis of narcolepsy? Like maybe apnea events with arousals or limb movements? Was this early into your CPAP treatment and perhaps the newness of the sensations were an issue with being able to fall asleep? On one of my MSLTs that stood out to me. They wanted to start the count too soon. It always took me a moment to settle in with the equipment, so I had no confidence in their results being definitive. I agree with those who have suggested you post your test results and see if anyone happens to pick up on any clues within.

The followup study with APAP reduced my AHI to 1, and also showed no evidence of PLMD/RLS.