Tired of being tired

[Wulfman...]

Thank you

Is it typical for board certified sleep doctors to be of so little use? I was amazed that I was blown off when I told her that I was still tired. Who cares if my AHI's are good if I am still tired. It was an ent that wanted me to talk to my primary about having the bloodwork!!!!!

It seems that the only use I have for the sleep doctor is to have insurance continue to pay for the masks etc. They did buy the machine for me two weeks ago

You gotta take into consideration that a huge number of people who find their way to these support forums have had poor experiences with their sleep doctors. Unfortunately, not nearly enough of the people who have been prescribed this therapy find their way here before they decide to give it up.

I've got my own "horror stories" regarding my (so-called) sleep doctor, but I found this forum in early 2005 before I had my sleep study, so I was a little prepared for what may happen. I bypassed the brick & mortar DMEs and in the beginning worked my insurance provider to my advantage (by purchasing from CPAP-dot-COM and having them reimburse me for most of it, we both saved money).

Bottom line for me is that "board certified" doesn't mean diddly squat. My sleep doctor was my means of obtaining the prescription for my equipment. (and, he also got my pressure wrong)


Den

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[Roxy]

The only good thing with my dme is that they accept my insurance payment as payment in full so I have no out of pocket. The doctor is part of a sleep center affiliated with a hospital near me. They are supposed to be good but I feel that they are so rushed that they don't have the time to even listen. I can't believe that they never even looked at the data using the resmed software. Instead, they only look at the machine and the average. It doesn't show how many times the leaks are above the red line. All the doctor and the respiratory therapist says is that my AHI is good

[70sSanO]

You know there are a couple of things that jump out. You are getting leaks. I imagine your 95% is 2.4 and not 24, but you seem to have constant leaks, not just a maximum spike.

Your 60 day average AHI is 3.2. If have a number of days at 1.7, then you will also have a number of days close to 5.

Finally I'm not sure if 5 - 7 hours is enough sleep time. And I don't know how well you are sleeping, or are you waking up, or even spending some time staring at the ceiling. Any machine time and numbers recorded when not asleep are pretty meaningless.

John

[Roxy]

I fall right asleep within ten minutes but wake two to three times a night. When I wake at night, I fall back asleep quickly. I have tried so many different masks. I tried quattro, quattro fx, amara, flexifit and the liberty.The flexifit is the best asfar a leakage goes but still does leak. When I look at the detailed daily data, I still get lots of spikes aboce the red line!!!!!! I am getting so frustrated. When I speak to the sleep doctor and the respiratory therapist at the sleep center, I get the same response. Your average ahi is good so don't worry. The therapy is effective. They don't seem to see a problem with the fact that I am still tired and that I tell them my leak rate is high. They never have looked at the detailed data on the removable sim card!!!!!! All they do is look at the limited data on the machine and say you are using the machine consistently and your ahi is good. Any suggestions? Does anyone know of a GOOD sleep doctor in Somerset, Morris or Middlesex county NJ? i am doing all of the right things but still am not getting the true benefits from the therapy.



This is the data from last night using flexifit with the padacheek liner and gecko to prevent sore on nose. I changed the setting from auto to a continous pressure of 12

AHI 2.8
leak rate Median 0 % 33.6 Max 63.6

When I was using the mask on a varable setting without the padacheek (just got it yesterday)_ just with Gecko

12/30/2012
AHI 3.1
leak rate Median 10.8 % 54 Max 76.8
pressure Median 11,9 % 13.9 Max 15.6

12/29/2012
AHI 3.5
leak rate Median 15.6 % 72 Max 121.2
pressure Median 11,8 % 14.6 Max 17

12/28/2012
AHI 2.9
leak rate Median 7.1 % 81.4 Max 109
pressure Median 12.5 % 15.1 Max 17.4

12/27/2012
AHI 3.8
leak rate Median 0 % 46 Max 11..3
pressure Median 11.4 % 14.6 Max 16.4

12/26/2012
AHI 2.5
leak rate Median 12.4 % 172 Max 129.6
pressure Median 12.4 % 15.5 Max 17.5

When I have some really high leak rates, why is the AHI still pretty low? Why does the machine show a good mask fit? Does max refer to the highest pressure and the leak rate at that high pressure? What is the difference between median and %?

Please help before I use the machine as a paper weight. I am SO FRUSTRATED

[Wulfman...]

You gotta give this new setup/settings a chance.
One night doesn't mean much in the whole scheme of things.

From what I see in your numbers, last night looked pretty good.

Den

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[Pugsy]

When I have some really high leak rates, why is the AHI still pretty low? Why does the machine show a good mask fit? Does max refer to the highest pressure and the leak rate at that high pressure? What is the difference between median and %?

12/27/2012
AHI 3.8
leak rate Median 0 % 46 Max 11..3
pressure Median 11.4 % 14.6 Max 16.4

12/26/2012
AHI 2.5
leak rate Median 12.4 % 172 Max 129.6
pressure Median 12.4 % 15.5 Max 17.5

Where are you getting the above numbers? Like which software?
Max does refer to the highest reached being it either leak or pressure.

Median is just a median average between either leak or pressure numbers.
Unit of value in leak numbers is L/min and not % though. Where are you seeing % numbers? Only thing PR S1 machines report in leak value with % is time in large leak...
12.4 L/min as a median leak average number doesn't compute because at your pressure and your mask your vent rate would be much larger than 12.4. Vent rate would be somewhere nearing 50 L/min...no way you can have an average of 12...so I assume that is 12.4 % of the time in large leak and that means a massive leak that is prolonged. If leak is over 90 L/min for very long then your AHI could be low because the machine doesn't know what is going on because the sensors are useless...this happens especially when leak is over 100 L/min for very long.

Best way to evaluate the leak numbers might be to look at the leak line graph....see just how much time is spent over 80 or 90 L/min. Short lived spikes likely not a big problem but large prolonged spikes...are a problem.

[Roxy]

I am using the resmed software

[Pugsy]

I am using the resmed software

Using a ResMed machine then your leak numbers are all excess leak numbers...your number to avoid is 24 L/min.
The % number is the 95% number when means that for 95% of the time you were at or below that number. People tend to forget the OR BELOW part of the definition.
So for 95 % of the time your were at or below that number (pressure or leak).
Median is a simple median average.
If your 95% leak number is below 24 L/min then your leak overall is probably not bad. Maximum could just be a quick mask reseating so I wouldn't worry about it.

If you spend much time above 24 L/min though...same thing as the 90 L/min on a PR S1 machine...the machine's reported AHI can be wrong because the machine loses ability to sense, detect and score related events. Things might happen but the machine doesn't/can't report it accurately.

[70sSanO]

I realize that you have been at this for 4 months and by this time you should see some improvement.

I don't know if I have the answer, but you have to figure out how to stop the mask leaks.

10 years ago on another forum, I would read posts of all sorts of things people would do to stop leaks, including using an Ace bandage. I realize the masks have improved over the years, but it is still plastic, silicone cushion, and skin.

My advice is to put the mask on and then take your index finger and press the mask against your face at different points until until you get the right pressure at the right place in the direction you need.

I have a Quattro FX and for me it is a great mask, and it doesn't leak. However, and others may disagree, the FX headgear is the worst I have ever used because it does not pull the mask straight back but up and back.

I am biased because I have used elastic straps I buy from a fabric store even before I got my FX. But all I did to figure out how to stop the FX from leaking was to push it straight back on my face and the leaks stopped... so back I went to the straps. I do use a headband over the straps to provide more comfort to my head and ears.

I am very thankful that this works for me. It may not be the same solution for you, but once you figure out how to stop the constant leaks, you can move forward and see how the treatment works.

John

[Roxy]

Wow my percent leaks are
% 54
% 72
% 81.4
% 172
No wonder why I am so tired still

This is ridiculous

[Pugsy]

Wow my percent leaks are
% 54
% 72
% 81.4
% 172
No wonder why I am so tired still

Yeah, massive leaks and likely for a good bit of the night well above the 24 L/min line.
Number one leaks so bad they will wake you up which itself disturbs sleep and will mess with how you feel.
Number two leaks so bad the machine loses the ability to detect and report and effectively prevent the events. So a nice low AHI could be the machine simply not being able to sense and record the events.
From my past experience I had some leaks at around 40 L/min one night for about an hour....in my case my S9 machine recorded a large cluster of "unknown" events....so it allowed a large number of events to happen and it didn't know what to call them.
I don't think I have ever had prolonged leaks like you are seeing so it could be that the machine simply can't sense anything at those numbers.

If you look at the detailed graphs....not just the 95% numbers you will have a better idea just how much time the data could be questionable. If you have 7 hours of sleep and only one hour in massive leak then things might not be so bad. % numbers might be horrible because of the one hour in massive leak. So look at the leak line graph and that red line for final evaluation.
One hour of massive leak out of 7 hours isn't the end of the world....now if you spent 6 hours out of 7 hours above the red line then we have a different discussion. This is why I like to see the graphs and not just rely on a number unless the number is very low.

And of course any leak that wakes a person up is unwanted (even if very low) because it disrupts sleep.

I haven't followed your mask discussion all that much but it sure sounds like you need a different size mask or even a different mask. I was mainly concerned with identifying exactly what leak numbers we were talking about so we could know for sure how much of an impact leaks MIGHT be making on therapy.
Yeah, it's no wonder you feel like crap....you can't expect to feel better until leaks are well controlled, mask is comfortable and you are sleeping well with minimal disruptions.

[Roxy]

How do I post a copy of the detailed graph?

[Pugsy]

How do I post a copy of the detailed graph?

I use screen shots. We talk about it in this thread...from how to get the screen shots (if someone doesn't know about screen shots) to how to upload them to a photo hosting website.
viewtopic.php?f=1&t=81072&p=737779#p737779

and here is the thread where I show one of my ugly leak lines. This is probably the worst I have ever seen on a report.
viewtopic.php?f=1&t=76445&p=698087&hili ... ne#p698087

[TheCLEANSER]

I some times wake up feeling tired or so I think I do - I also some times feel great until the afternoon (times vary) until I start feeling tired again - took me a while to realize that I am not always tired. What I have in fact is a very small headache which causes me to loose concentration and want to lay down for a nap making me think I'm tired. After popping an advil i perk right up and enjoy the rest of my day. Note - different days have different severity of head aches - some time 1 advil gets me thru the rest of the day, other days I need one every 3 or 4 hours - again took me a while to realize but the headaches are caused by the full face mask putting an inward pressure on my jaw - unfortunately im screwed cause i need a full face mask due the high pressure my machine is set at. I have to sleep on my side with my face and mask side ways making contact on the pillow to alleviate the pressure from the mask - its hit and miss - really suks cause i never know when I'm gona have a bad day as the advil doesnt always work - the head aches are severe some times.
Feels hope less - fix one problem only to have another instantly replace it.

[Roxy]

I have attached some of my more recent charts. Please help