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[Diagnosis] Cpap not helping, what should i do next?
#1
Cpap not helping, what should i do next?
Hey, 23M, 72kg weight, around 175 height , I've been experiencing strange symptoms for about 3 years, and over this period, quality of my life has been progressively worsening.
It all began with minor sleep issues. Initially, I'd sleep 8-9 hours but still feel the need to nap during the day due to excessive sleepiness. Currently, after three years, it has escalated to a point where I sleep up to 10 hours and still take short naps during the day, leaving me with no energy to function.

I have ahi of 6/h and tried CPAP but it didnt improve my sleep, since then i got new symptoms regarding my sleep

Concerning sleep itself, I encounter strange hallucinations before falling asleep and during naps. I hear sounds, sometimes see things, as if I'm already asleep and dreaming even though I haven't fallen asleep yet. Additionally, about once every two weeks after waking up, I experience an olfactory hallucination – I smell an odor that doesn't exist. This happens after sleeping and lasts about 30 minutes to an hour (with the smell appearing for a few seconds intermittently during this time). I feel like I recognize the smell but can't name it, and it triggers a peculiar sensation in my body, often followed by slight twitching and intense coldness.

Typically, when this smell occurs, my teeth and tongue ache the entire day (I also wear dental braces). Upon waking up, I frequently have vision problems, as if someone dropped a stone into water and made waves in it, blurring a point in my field of vision. The pulsating blurred spot in vision happens in the same spot in both eyes and subsides after a few seconds.
I've observed that I remember a significant number of dreams (4-5 per night), and they are highly realistic and vivid. Occasionally, during a dream, I wake up to a loud ringing in one ear; it becomes 'quiet,' and I feel faint for a few seconds. All these symptoms, except for the ringing in the ear, occur only during sleep or immediately after waking up.
As the quality of my sleep has significantly deteriorated, I lack the energy to function daily. I constantly feel the urge to sleep, and I'm starting to experience job and relationship losses. I have no idea which doctor to consult or what to investigate.

The tests I've undergone so far include:

  1. MRI and CT of the head – clear.
  2. Vision tests – vision is clear, with no issues in the eye itself and its nerves (the doctor suggested that visual problems might be caused by something else in the body).
  3. Polysomnography – 5 AHI/hour, indicating very mild apnea. CPAP was tested but did not help.
  4. EEG for epilepsy – no abnormalities detected after a normal night's sleep.

I would appreciate any assistance or guidance on where to go or what to investigate. Thank you in advance for any help.
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#2
RE: Cpap not helping, what should i do next?
What meds are you currently taking and what work-ups have the doctors done? What have they recommended?

There is far more here than anything CPAP can likely help with, so getting the big picture is important for those qualified to offer help.

From a CPAP perspective your previous posts implied it was being handled rather well. We will need OSCAR charts to offer further assistance.
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#3
RE: Cpap not helping, what should i do next?
I'm currently not on any medications. I used to take pregabalin for two months previously (150 mg daily). Regarding the CPAP, initially, it seemed to help as my data dropped to under 1 AHI/hour. However, despite consistent use since August with AHI consistently under 1 every night, my symptoms persist, and sleep quality hasn't improved. I've also developed new symptoms in the form of sleep hallucinations, including auditory, visual, and olfactory experiences.

In terms of diagnostic tests, I've undergone MRI and CT scans of the head, which showed no abnormalities. Vision tests indicated clear vision with no issues in the eye or its nerves, although the doctor suggested that visual problems might be related to something else in the body. Polysomnography revealed a mild apnea with 5 AHI/hour. EEG for epilepsy showed no abnormalities. Soon, I'll be undergoing an MSLT test for narcolepsy.

Despite the data from CPAP beeing under 1ahi , I'm starting to think that sleep apnea may not be the root cause of my sleep problems, and there might be another underlying condition.

i attached my data from last nights.


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#4
RE: Cpap not helping, what should i do next?
I agree with you that apnea probably is not at this point what is interfering with your sleep and causing your daytime sleepiness.  You would be wise to treat the apnea anyhow, even though it's mild.  That's one less problem for your body to contend with.

You might like to read this helpful article from a trusted source about hallucination and sleep:

https://my.clevelandclinic.org/health/ar...ucinations

I'm glad you'll be getting followup to explore the possibility of narcolepsy.
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