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Hi. I am new here and confused about my diagnoisis
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swilson Offline

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Posts: 26
Joined: Feb 2012

Machine: Remed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: Zest Standard
Humidifier: Resmed H5I
CPAP Pressure: 5-12
CPAP Software: SleepyHead

Other Comments:

Sex: Female
Location: Canada

Post: #11
RE: Hi. I am new here and confused about my diagnoisis
Hi Archangle. Looks like you are a dog person too. You're right, the numbers that I gave were when I was on the CPAP machine. The only thing I have pre-CPAP is the graph from the oximetry. I'm going to ask the specialist for the summary report for that first test. Insurance is going to pay 80% of the total. I guess because a real full test would cost a lot of money, so if the patient is complaining about not being able to breath out, that's a good indication of a blockage and maybe can get away with using the cheaper Oximetry test. It does feel odd that they want me to buy this cpap machine without knowing exactly what's wrong. If I am to be diagnois with sleep apnea, I'm glad that it is in this time period. The machine I have I would call a smart machine. I don't need to fight with too much pressure or having to turn the machine back on when I come back from the bathroom. Just breath in and it starts. If this had happened to me 5 years ago, I would not have been able to put up with the machine and mask. I'm glad I didn't have to go through that hell. I don't feel much better. I am able to sleep flat without my lips flapping in the wind, I think. It would be hard to tell. My throat is not as dry as it was before. Still feeling quite tired but not as much as before. I found that when the sleepiness becomes almost impossible to resist if I get up and do a different task at work where I am standing it's better. Have alot of people here downloaded that SleepyHead software? Is it safe?
03-02-2012 12:56 AM
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iSnooze Offline
Apnea Board Proofreader
Advisory Members

Posts: 239
Joined: Feb 2012

Machine: Respironics PR System One C-Flex+
Mask Type: Nasal mask
Mask Make & Model: Resmed Mirage Micro
Humidifier: System One Heated Humidifier
CPAP Pressure: 11
CPAP Software: SleepyHead

Other Comments: also use a Comfort Gel Full Mask by Respironics

Sex: Female
Location: Indiana

Post: #12
RE: Hi. I am new here and confused about my diagnoisis
Yes! The SleepyHead software is safe. Download it from sourceforge and you shouldn't have any problems.

I didn't have a blockage when I breathed but when I complained of extreme fatigue, my doctor ordered an oximetry test. The only result I got was that my oxygen dipped down low enough to order a sleep study in a lab. Unfortunately I don't know how low it got until I had the sleep study done. Yours might have been so low that the doc knew you needed cpap therapy from the get-go. Although I find it quite odd that you have pressure settings for the cpap without having a sleep study done. I see that you have an Autoset and that will determine how much pressure you need.

It takes most people a few weeks before they stop feeling tired during the day. I still take naps on days when I'm not working and I've been on cpap therapy for 10 weeks now. The improvement in my health was gradual but there was improvement.
03-02-2012 06:46 PM
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swilson Offline

Preferred Members

Posts: 26
Joined: Feb 2012

Machine: Remed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: Zest Standard
Humidifier: Resmed H5I
CPAP Pressure: 5-12
CPAP Software: SleepyHead

Other Comments:

Sex: Female
Location: Canada

Post: #13
RE: Hi. I am new here and confused about my diagnoisis
Hi guys. Back again. I finally got my hands on my first oximetry. The CPAP has made a big difference. However, I still feel very tired and I am struggling with it at work. Can't concentrate and I am so tired I'm making mistakes. Last time I was at the sleep specialist I told him I do feel a little better but not very much so he is sending me for an over night sleep study in a hospital.

My 1st oximetry. Highest O2 98%, Lowest O2 82% (not good), Mean 93.7%. Time with 02 < 90%, 27 min. , Time with 02 < 88% 8 min., Time with o2 > 80% but < 90% 27 min. Longest continous time with saturation <88% was 2 min. 52 seconds (not good).

My 2nd oximetry (after therapy). Highest 02 98%, lowest 02 84% (still not good), Mean 02 94.7% (not much change). Time with 02 < 90% 55 seconds (wow), Time with 02 < 88% 28 seconds (wow), Time with 02 > 80% but < 90% 56 seconds (wow) Longest continous time with saturation <88% was 16 seconds (fantastic).

First oximetry. 12 desaturation events over 3 min. (long time). 75 desaturation events under 3 min. mean high 95.5% mean low 88.7% (yikes, not good).

Second oximetry. 6 desaturation events over 3min. (getting better). 19 desaturation events under 3 min. (big difference). Mean high 96.5% Mean low 90.4% (getting there).

First. Desaturation event index >10 seconds per hour 8.8.
Second. Desaturation event index > 10 seconds per hour 2.7.
03-15-2012 12:57 AM
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PaulaO2 Offline
Wiki Editor
Moderators

Posts: 8,067
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #14
RE: Hi. I am new here and confused about my diagnoisis
Just to make sure you understand (and I know that you understand): the oximeter is measuring the oxygen levels in your blood. I assume you used the typical fingertip style. You wore it at night (but not during the day, right?) and it measured your blood oxygen levels as you slept.

Low blood oxygen (saturation) is just one of many symptoms of sleep apnea. It is also the symptom for a LOT of other illnesses, conditions, etc etc. Looking in your throat with a camera is good but does not diagnose sleep apnea. It can point toward the diagnosis (small airway, small mouth, etc) but unless they are looking in there while you are asleep, it does no good in diagnosing sleep apnea. What they ruled out was an obstruction from perhaps a tumor or something else that pressed against your airway or blocked your airway such as nasal polyps. This is how my brother was diagnosed with his. When he had a cold or allergy symptoms, he could breath out through his nose but not breathe in. The polyp enlarged due to the virus/allergies and blocked his nose. The doc used a small camera to see it.

Knowing your blood oxygen levels during sleeping is good but, really, does not indicate sleep apnea. The fact it got better with the machine also does not indicate sleep apnea. It indicates you breathed better, yes, but not because the CPAP kept your airway open.

Diagnosing you due to the single test of the oximeter is rather odd. It is like diagnosing you with MS because you stumble. Or with brain tumor because you have migraines. The data your CPAP collects each night is also rather worthless since there is not anything to compare it to. You cannot say today was warmer than last Tuesday if you don't know the temperature from last Tuesday. You can guess going by memory and deduction but it is not enough.

Personally, I would demand (strongly request) a sleep study. You want to know what your numbers are without the machine and then with. Then you will know if you truly have sleep apnea. AND, better yet, you will know which sleep apnea you have. Obstructive means the throat closes/collapses and blocks the airway. Central means the brain is misinterpreting the CO2 and O2 levels and telling you not to breathe (basically). Some people have both (called mixed sleep apnea). Each type requires different treatments. Each would result in low blood oxygen but, without the sleep test results, you don't know which one and why.
03-15-2012 01:53 AM
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