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New and in need of help please
#1
New and in need of help please
Hi, I'm based in the UK. I've recently been diagnosed with severe obstructive sleep apnea and been given a CPAP machine and mask. Everything has been REALLY tough and I'm currently getting by on maybe 1-2 hours' sleep each night. I would really value some help just getting back to a functioning level of sleep. 

Here's the story so far ...

I'm 45 years old, male and athletic. I eat a very clean healthy diet and exercise 5-7 days per week. I train as a competitive powerlifter and bodybuilder, and do 3-5 cardio sessions each week. I'm otherwise very healthy, not on any medication, no allergies, no asthma. 

Since one or two months ago I started sometimes waking in the night, gasping for air like I was drowning. I felt as though my airway was getting blocked when my body fully relaxed for sleep. This gradually got more frequent until a couple of weeks ago it was happening every time I drifted off to sleep within a minute or two. It really disturbed my sleep and I became afraid to fall asleep knowing it would be followed by the experience of suffocation.

I googled my symptoms and learned about OSA. I went to my GP who was reluctant to refer me on to a sleep clinic as I didn't have all the usual symptoms: I don't snore, and I'm not obese. I convinced my GP to take me seriously but then the apnea got worse again and I found a private specialist as I was desperate for a peaceful night's sleep. 

The ENT/sleep consultant I saw gave me a sleep study to do at home, and it came back that over 2.5 hours of sleep that night my average AHI was 29.4 (borderline severe). My deep sleep was only 1.9%. During the time when this was being done and waiting for the results, I had to go on sick leave from work, and I don't believe I'm safe to drive my car.

I was given a CPAP machine to try, with a couple of masks. The machine is a DeVilbiss Sleep Cube Auto, and the masks are Philips DreamWear face and nasal masks. I've been using the nasal mask because it feels slightly less claustrophobic.

I've had the CPAP machine almost a week now and I still haven't had more than a couple hours' sleep. I've experienced the following issues:
  • Feeling claustrophobic and anxious with the mask over my face and blowing air into me
  • Feeling like it's hard work to breathe enough air in and feeling lack of oxygen
  • Difficulty to swallow, cough, turn onto side, when mask is on
  • Still having the apnea events and being woken up even when wearing the mask
  • Waking up after a short time and not being able to get back to sleep
  • When resting awake with the mask on, eventually having to rip it off to breathe because I'm suffocating
When I spoke to my consultant again, he told me how to adjust the minimum pressure setting, which was at 5 initially when I received the CPAP machine. Now I have it at 10.5 which feels easier to breathe in, but it means I have to exhale against 7.5 which is still hard work. He also said it just takes time to get used to, and everyone goes through this exactly the same as what I am experiencing. The AHI reading on my device right now is 13.5.

I am SO desperate for some help to be able to get a few hours of restful sleep and be able to resume normal functioning. Please help!! I'm willing to travel, spend money, or do whatever is necessary.

I have cut my calories back substantially and increased my cardio sessions; this means I will lose weight at 2-3 lbs/week. My body fat is currently at 15% so not super high, but I figured this should help. Maybe I developed this sleep apnea because I have gained muscle mass recently through training?

Right now, I have the choice of sleeping or breathing but not both at the same time. If I went to the ER maybe they could tube me and let me sleep for a few hours?

Your experienced input would be awesomely valued. Thank you.
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#2
RE: New and in need of help please
I'd personally cut back on heavy lifting, but that's just me, the more I do physically the more apnea i have, sometimes AHI 100+ 

To be able to help you help yourself you need to download OSCAR from the above menu, put the sd-card from the cpap into the computer and then upload some charts from the program.
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#3
RE: New and in need of help please
(Yesterday, 01:26 AM)crowtor Wrote: To be able to help you help yourself you need to download OSCAR from the above menu, put the sd-card from the cpap into the computer and then upload some charts from the program.

I don't believe my CPAP machine has an SD card or slot.
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#4
RE: New and in need of help please
It is a learning curve, you will get use to the pressure
This may help to see your data
http://www.devilbisshealthcare.com/produ.../smartcode
mask fit http://www.apneaboard.com/wiki/index.php...ask_Primer
For auto-cpap from machine data, or software. Set the min pressure at 'med' median pressure or 90% OR 2cm below 95% pressure. max pressure at 20cm for now. Forum will help you fine tune settings
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#5
RE: New and in need of help please
Here's a helpful video for you about your machine as well. Good luck!
https://www.youtube.com/watch?v=V8pns9BYn64
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#6
RE: New and in need of help please
Unfortunately the data ajack's link provides is only compliance or use data, not efficacy. I suspect your may have a problem that your sleep cube cannot address, but we really don't know anything, because all your current information is based on a home sleep study, which is fine for screening, but does not identify more complex problems like central apnea. You may be someone with complex apnea, which is a combination of central and obstructive apnea. You will need a sleep study, or one of the Dreamstation or Resmed Airsense 10 Autoset machines to see useful data.

Individuals that do not have the usual comorbidities for obstructive sleep apnea, such as weight, neck size, etc can still suffer from either obstructive or complex apnea and perhaps even central apnea. These can be detected in a sleep study, and in the case of complex or central apnea a titration study is important to see your response to positive pressure which can actually make symptoms worse. There are PAP devices that can treat complex apnea if that is your problem, but they are very different from CPAP. Bottom line is, you know you have a problem, now you need to get better diagnostics.
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#7
RE: New and in need of help please
Your situation sounds truly awful, but if you can do as Sleeprider suggests, I believe you will get your life back again. Just to follow up on his two recommendations:

(1). Fuller sleep study. Probably the best kind would be this (from the web):

1. Polysomnogram (PSG)
A polysomnogram will be administered to your patient if there's suspicion of a sleep disorder and they require a sleep study for diagnosis in order to start treatment.

What is a Polysomnogram?

A PSG is a diagnostic tool used to determine if your patient has a sleep disorder. This test is conducted overnight at the sleep center or hospital.

This test monitors your patient's sleep cycles and stages to identify any disturbances caused by their sleep disorder. Your patient will be connected to a variety of equipment to help monitor things like their:

Brain activity
Breathing activity
Muscle activity
Through a PSG, you document the disorder your patient is suffering from.

Who Are the Best Candidates for a Polysomnogram?

The best candidates for a PSG are patients who may have a sleep disorder, such as obstructive sleep apnea (OSA). This is a disorder where the patient has repeated apnea events or an upper airway obstruction that reduces or blocks airflow during sleep.

Diagnoses That Come from a Polysomnogram

A polysomnogram is used to diagnose a wide range of sleep disorders such as:

Central sleep apnea, OSA, sleep-related hypoventilation disorders, and other sleep-related breathing disorders.
REM behavior disorder, or other parasomnias (abnormal actions or behaviors while sleeping).
Idiopathic hypersomnia, narcolepsy, and other hypersomnolence disorders.
Non-24-hour sleep-wake syndrome, delayed sleep phase syndrome (DSPS), or advanced sleep phase syndrome and other circadian rhythm sleep-wake disorders.
Bruxism, periodic limb movement disorder (PLMD), restless legs syndrome (RLS), and other sleep-related movement disorders.

(2). Data-capable machine so you and the experts here can look in detail at what is going on, via data downloads to the Oscar software. Many people report a preference for the ResMed Air Sense 10 Autoset. There is a For Her version that provides an additional option some people (both men and women) like.
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#8
RE: New and in need of help please
This may be entirely irrelevant in your case, but my cardiologist asked me what the girth of my neck was when I first met him.  We later learned I have severe apnea, and I have since learned that there is a surprisingly high correlation between neck girth and obstructive (not central) apnea.  I told him mine was just under 16", and he let on nothing.  I learned later that girths higher than 17" (43.2 cm) are often problematic.  The idea is that thicker necks are more likely to cause occlusion of the airway when tone is lost, and/or when the head tilts/chin tucks during sleep (especially on one's back).  Something for you to consider if you are...uuhhh...beefy.
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