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TimChambers
Unread post  Post subject: CPAP for hypopnea failed with no sleep  |  Posted: Fri Dec 29, 2017 5:33 am

Joined: Fri Dec 29, 2017 4:13 am
Posts: 3
Location: Sydney, Australia
PAP Mask: Tried Nasal pillow then tried full face mask.
PAP Machine: Phillips DreamStation (CPAP Auto? with humidifier)
Pressure Setting: normal 6. 6 to 15 (auto level), ramp from 4 possible, Cflex drop of 3.

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My CPAP trial (late 2017) was a total failure. No leaks, tried different mask/nasal, changed the basic settings, used it while awake, no anxiety with starting etc. I'm still looking for a better diagnosis and treatment so I'm looking at CFS and types of anemia. Not happy with the clinical process or results.

CPAP: I start with trying to breathe with the machine which takes extra effort to breathe out even with soft start (starts 4 to 5; it can go to ~7 when running) and Cflex enabled (drop of 3). I try to relax but when I do the machine hates my slow breathing and tries to make me breathe in before I finished breathing out. Now it's probably set to what it thinks as a "normal" breathing rate but now it feels like I'm hyperventilating (compared to my normally slow/shallow breathing). No I'm not hyperventilating according to normal breathing rates.
I could stand about 30mins by which point my heart was beating harder, diastolic blood pressure had risen (eg. 110/85,65 instead of 105/65,60), light headed, headache, feeling bloated, burping air. It would then take an hour or more for me to get back to normal and be able to sleep.

_________________
Tried CPAP but it failed.
Why am I so unlucky with doctors ? I don't seem to match the textbooks nor the expected norms.


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TimChambers
Unread post  Post subject: Re: CPAP for hypopnea failed with no sleep  |  Posted: Fri Dec 29, 2017 5:34 am

Joined: Fri Dec 29, 2017 4:13 am
Posts: 3
Location: Sydney, Australia
PAP Mask: Tried Nasal pillow then tried full face mask.
PAP Machine: Phillips DreamStation (CPAP Auto? with humidifier)
Pressure Setting: normal 6. 6 to 15 (auto level), ramp from 4 possible, Cflex drop of 3.

Offline
More DETAIL

Sleep study: My AHI was 32 but mostly hypopnea events and only limited sleep time during the PSG study (2nd attempt, 1st was <2hrs sleep, 3months after nasal op). SpO2 was 96% average while awake and 95% average while sleeping with further drops of 3-5% for hypopneas. No snoring! My heart rate stayed a bit higher than expected (sleep avg 64, sleep high 83, awake high 122). BP evening 133/85 after remaking bed with mattress topper (softer than uncomfortable hospital mattress), normal laying down is 105/65, BP morning was 99/70. Had to take medicine through the night to sleep. A long time to get to sleep and no REM sleep recorded.

Now I'm looking at either anaemia, CFS or similar.

http://www.vitality101.com/cfs-fms-checklist
"Your score indicates that you have met the CDC criteria as possibly having CFS (though you did not show signs of fibromyalgia). We recommend that you consult a physician for further evaluation."

Pathology: FBC says my red blood cells are OK, ferritin was high side of normal. Nothings else of significance. Not classed as anemic but hasn't been fully investigated. However, I started taking a multivitamin tablet which includes a form of methylated B12 and other B vitamins. This has improved most of my symptoms from moderate-to-severe down to mild-to-moderate. Creatinine was high side of normal in blood and low in urine so eGFR was low end of normal. Lymphocytes low(1.4x10^9/L), Neutrophils high side of normal (4.5x10^9/L), TSH 2.92, Free T4 16.6 pmol/L, Total IgE high (284 IU/mL, known allergy to dust, no IBS/crohns/coeliac markers).

Heart was checked: no problem.

Vascular: Although I asked about blood flow, all a cardiologist can look at is the blood vessels close to the heart (all clear). It's the cardiovascular system but the specialists only look at half of it.
I've had several episodes of headache, increased clear urine, thirsty, nausea then pass out (vasovagal syncope), then wake up tied, pale, vomiting(1hr) and takes about 24 hrs to fully recover (incl. sleep).

Lungs: appear to be "normal" according to clinical assessment. I think they don't fully inflate. I have 150% of predicted peak flow, low resistance (sRaw 41% of predicted), reasonable pressure, lower FRC/ERV/RV (72/63/79% of predicted, PFT in a gas chamber). Diagnosed with Asthma about aged 5. One of the first instructions from the lab tech (when testing mid 2017) was to breathe normally, the second was to breathe more.
Respiratory specialist doesn't look at the blood flow through the lungs nor the nerves to the diaphragm. They don't look at you breathing unless the PFT results come back "abnormal" for asthma/obstructive/restrictive like conditions. I feel funny if I try to breathe in deep no matter how slow and it takes a lot of effort. It's like I weigh an extra 60kg but I have 18kg of fat (+59.3 lean/bone = 77.3kg TBW, BMI <26 in metric).

Nasal: Deviated septum & reduction to turbinates was operated on in early 2017.

-----
So the respiratory specialist threw up his hands and basically said "Don't look at me, I can't help it if you don't use CPAP or mouthguard". If I'm breathing like the hypopneas while awake during the day and breathing faster is bad for me: then I don't see how these treatments are going to help me!
No, I'm not a hypochondriac! I've been misdiagnosed on atleast 4 other occasions regarding physically testable and non-fakeable conditions (hiatus hernia with reflux, myopia/astigmatism, appendicitis, fractured eye socket).

Thank you for any help.

_________________
Tried CPAP but it failed.
Why am I so unlucky with doctors ? I don't seem to match the textbooks nor the expected norms.


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