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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Mozart22
 
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Brand New User: APAP makes me MORE Tired!!

Postby Mozart22 on Mon Dec 10, 2012 5:15 pm

Hi everyone, I'm a brand new CPAPtalk user and a brand new APAP user. I'm 26, male, and about 65 pounds overweight.
I used to take Paxil for several years, but then tapered off it because of side effects and it was losing its effectiveness.
Unfortunately I gained a LOT of weight while getting off it. I currently do not take any medications and feel fine without them.

However, I've had low energy levels for several years. At my age, I should be at my prime, but instead I'm often tired and sleepy and
sluggish. If I do anything physical like take a long walk or play sports, I get even more tired and might have to nap.
I got my thyroid and glucose levels checked, they came out normal. Blood pressure normal too.

Being very tired all the time, I can only manage to work part time. I just don't have the energy for a full time job. As such I have no
health insurance. Sometimes I would notice that I snort when sleeping, and have to gasp for air. The snorting and the frequent fatigue
made me suspect I have sleep apnea, so I got a home sleep study which is what I could afford.

According to the home sleep study my total AHI is 21.1 and RDI 21.2 I did not sleep well that night. I was wired up and did not feel too comfortable.
Anyway, they said I have moderate sleep apnea when I sleep on my side, and severe sleep apnea when I sleep on my back. At age 26 this is NOT what
I want to hear, but I figured that if I use an APAP like they suggested, I might have plenty of energy and be able to live a normal life where I can
actually work full time and have a social life. Right now I have almost no social life because I'm just so tired most of the time. I have to turn down
offers to hang out with friends or go to events because of my fatigue. Now, there are a couple days a week where I feel somewhat better and can
do things, but most of the time I'm quite tired and sluggish.

Anyway, long story short, I got my APAP. It's a PR System One REMSTAR Auto CPAP with A-Flex. It's one of those newer 560P models (60 series).
It came with a Respironics humidifier attached to it.

I was sad that I have to sleep with this thing every night, but was eager to get my energy back.
After 5 days, I am sad to say that I feel either no difference or actually I feel MORE TIRED.
For example, last night I used my APAP for 9 hours straight. I woke exhausted, as if I need to sleep another 3 hours.
I forced myself to get out of bed since 9 hours of sleep should be plenty and I had things to do. Now, here I am,
typing this but feeling quite tired. It really feels like my APAP has made me MORE tired not less :(

Can you please help a total newbie out? I have done a fair amount of reading on this forum. I was shocked to read that some users have been using
their APAP or CPAP for MONTHS and still feel tired. I think I even read about someone who found no improvement after a full year of CPAP!
I don't know if I want to wait that long. If sleeping with a mask on my face and air blown into me does nothing to help my energy levels, and sometimes
makes them worse, then count me out! I'd rather be tired but sleeping naturally instead of being tired and sleeping unnaturally on top of that.

Important points:

1. This is NOT a mask issue. I am quite pleased with my Respironics True Blue nasal mask. It's not about me trying different masks or mask sizes, the one
I have is fine and I'm able to wear it all night. I haven't noticed any leaks from it.

2. I try my best to sleep with my mouth shut, to avoid any leaks. I think I've done well so far, but on occasion I do open my mouth to cough. Most of the time
it stays closed. I've heard about chin straps, but I don't think I need one really, and furthermore, the thought of adding yet another thing to my face is not
appealing at all. Those chinstraps are not small, if I add that along with my nasal mask, my whole head will seem covered. If I do feel that I need one tho,
I'll get one. By the way, I got one of those Contour CPAP pillows, and it helps. It allows me to sleep on my side much easier while wearing the mask.

3. My brand new 60 series APAP is not compatible with Sleepyhead yet. I tried the whole SD card thing but SH needs to add compatibility to this new model.
I'm aware that there are other options for my APAP, notably EncoreBasic... but I think you have to pay for that? As a young broke guy I already spent a lot
of money out of pocket for this APAP and hesitate to spend more. But anyway, since SH doesn't support my model, I'm unable to analyze any data. I don't even
know my AHI, it doesn't come up on the LCD, but I might be able to change that if I go into clinician settings on my APAP

4. There was no titration, the APAP has a range of 4 - 20 cm H20. I talked to the sleep technician and told him maybe this range is too large. He said it doesn't matter,
the APAP will use whichever pressure is most suitable at the time. He did say that he might be open to pressure changes in the future, but he wants to wait and see.
(I've only used it for 5 days, he said patients often need 2 weeks to feel better). I know I can change the pressure range myself, but don't want to do this yet. Too soon.


Anyway, I've included all relevant information so please help me!! I'm only 26, I want to work and socialize like all my friends do, instead of being tired all the time.
Like I said, I feel like my APAP is making me even MORE tired. What a cruel joke! After my 2nd night, I took my APAP and stored it away in a drawer, out of frustration.
I couldn't believe I was feeling more tired, not less. But a few hours later I took the APAP out of the drawer and forced myself to stick with it anyway. Now after 5 nights I continue to be more tired. I'm going to try and stick with this anyway, but my patience is limited. I do not want to end up in one of those situations where for the next 6 months I use my APAP every night, full compliance, and all I have to show for it is more fatigue on top of an already fatigued body and mind.

I have heard of sleep debt, but didn't realize sleep debt can increase fatigue. If you had an illness, and a doctor prescribed a pill, and after taking that pill for several days, your illness got worse, would you continue taking that pill? I really want this to work but I'm scared I'll be like those unlucky people you read about who go for months and months with no improvement. For now, I can't even count on that, because not only do I have no improvement, I have an actual increase in fatigue. My sincere hope is
that by losing 60 pounds and being more active and sleeping on my side and never my back, I can one day get off APAP for good. I know for most people it doesn't work like that, although occasionally you do hear about people who lost a ton of weight and with proper changes (side sleeping, no alcohol, no sedatives, proper exercise) they manage to "beat" their apnea.

For now, I need serious HELP to make this APAP work. My mask is fine, but the APAP is making me more tired. Thank you.

UPDATE: I posted my SleepyHead data from last night about 3 posts down from this one. The AHI is very low it seems. Don't know if the leak rate is good or bad.
Last edited by Mozart22 on Mon Dec 10, 2012 6:09 pm, edited 1 time in total.

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chunkyfrog
 
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Re: Brand New User: APAP makes me MORE Tired!!

Postby chunkyfrog on Mon Dec 10, 2012 5:24 pm

Five days is a bit soon. It is likely you have yet to relax and trust the machine.
Once you can do that, it will begin to get better.
I find that going to bed a little earlier is better than waiting until I'm totally wasted.
Settling down and adjusting the gear takes some energy, then you can relax and sleep better.
At your age, I know it's difficult to hit the hay "as early as a farmer", but it is effective.

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Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Auto 9-13, EPR 2. Autoset for her mode; Sleepyhead; ordinary bed pillow
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MrStein
 
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Re: Brand New User: APAP makes me MORE Tired!!

Postby MrStein on Mon Dec 10, 2012 5:32 pm

Ditto what Frog said...also there is a thread here about the patch to make Sleepyhead work for 60 series.
I use the same machine as you, and Sleepyhead runs great with the patch.
http://www.cpaptalk.com/viewtopic/t83551/SleepyHead-Series-60-Patch-Avail.html

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DoriC
 
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Re: Brand New User: APAP makes me MORE Tired!!

Postby DoriC on Mon Dec 10, 2012 5:49 pm

You could be losing therapy by sleeping with your mouth open and having apneas throughout the night. Having data is essential so hope you can get SH to work for you. Keep us posted.

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Mozart22
 
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Re: Brand New User: APAP makes me MORE Tired!!

Postby Mozart22 on Mon Dec 10, 2012 5:52 pm

I installed the SleepyHead patch for 60 series machines.

It says I used the machine for 10 hours and 12 minutes yesterday, with an AHI of 1.86. That sounds like a VERY good AHI, no?
And yet I feel really tired from the moment I woke up, and as I type this I'm tired despite not doing much today. Anyway could you
please tell me what this data means and if it's good or bad:

For last night, most recent reading:

AHI: 1.86
RERA Index: 0.69
Flow Limit Index: 0.20
Hours: 10:12
Avg Pressure: 16
95% Pressure: 6.60
Avg Total Leaks: 17.18
95% Total Leaks: 24.00

mamagoober
 
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Re: Brand New User: APAP makes me MORE Tired!!

Postby mamagoober on Mon Dec 10, 2012 5:58 pm

I think that in addition to sleep debt, there is also the fact that if you have untreated apnea for a time, you are not as aware of your fatigue in the same way. My husband claims that he's not improving at a fantastic rate and is still tired a lot. I, on the other hand, can totally see massive amounts of improvement in just 3 weeks. He's not 100% yet, but he is so much improved. He doesn't think the difference is as great as I do and I think that is because he was 'used' to that level of fatigue. He still wants to sleep a lot. His nightly average is 9ish hours and still he's tired, but now he wants to sleep because his sleep is restorative. Before he didn't even want to go to bed because he knew he would just feel worse in the morning. So he has the desire to go to bed more now, but that's not a sign that his therapy is ineffective.

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Mozart22
 
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Re: Brand New User: APAP makes me MORE Tired!!

Postby Mozart22 on Mon Dec 10, 2012 6:07 pm

mamagoober wrote:I think that in addition to sleep debt, there is also the fact that if you have untreated apnea for a time, you are not as aware of your fatigue in the same way. My husband claims that he's not improving at a fantastic rate and is still tired a lot. I, on the other hand, can totally see massive amounts of improvement in just 3 weeks. He's not 100% yet, but he is so much improved. He doesn't think the difference is as great as I do and I think that is because he was 'used' to that level of fatigue. He still wants to sleep a lot. His nightly average is 9ish hours and still he's tired, but now he wants to sleep because his sleep is restorative. Before he didn't even want to go to bed because he knew he would just feel worse in the morning. So he has the desire to go to bed more now, but that's not a sign that his therapy is ineffective.


Fair point, and thank you for your feedback, but that is not the case for me personally. I feel MORE tired. After 10 hours of sleep last night using my APAP, I woke up exhausted and ready to just sleep more and more. I had the desire to go bed before, I was never pessimistic or hesitant about sleep. But as of now, after 5 days, I feel worse not better. I posted my SleepyHead results for last night.

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pickuptruck
 
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Re: Brand New User: APAP makes me MORE Tired!!

Postby pickuptruck on Mon Dec 10, 2012 6:52 pm

Is your sleep fragmented. Are you getting plenty of deep sleep. It does make a difference what your pressures are with APAP. you should adjust the pressures for 2 up and 2 down from your 95% level. You need to insure that you have enough room above for any spikes. If your levels are to wide the machine works harder and longer to eliminate problems. It takes the machine longer to reach your 95% number. Some people do better on a fixed pressure because the changing pressures cause interruptions of good sleep.

We also need to remember that APAP/CPAP use does not cause sleep. It only helps the body be able to get sleep. Many other things can cause us to get bad sleep.

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Re: Brand New User: APAP makes me MORE Tired!!

Postby BlackSpinner on Mon Dec 10, 2012 7:10 pm

Your average pressure is 16, which means your pressure has to climb 12 points to get there from 4. Your tech is wrong. It takes time to get from 4 to 16. During which time you are having "issues" with breathing and your sleep is disturbed.

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Mozart22
 
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Re: Brand New User: APAP makes me MORE Tired!!

Postby Mozart22 on Mon Dec 10, 2012 7:24 pm

I just checked the intentional leak rates for my mask, and that leads me to conclude leaks are NOT an issue. My leak rate is normal
for my True Blue mask according to the Respironics website.

Can anyone tell me why my 95% pressure is 6.6 but my average pressure is 16? Why the big difference?
Does that mean 95 percent of the time the pressure is around 6 and a half?

Also, BlackSpinner says that going from 4 cm to 16 cm H20 can cause my sleep to be disturbed. That may well be,
but why was my AHI so low then? Maybe AHI has nothing to do with sleep quality since you can have poor sleep even WITHOUT
any apneas?

Either way what can I do going forward? My AHI is very good, my leak rate is very good, my True Blue mask is comfortable,
my CPAP Pillow is nice, my humidifier is nice, what is left to do?

I suppose the only answer I'm going to get is to just wait a few weeks and see? With such a good AHI and leak rate and full compliance
every night I should not be this tired!


I also want to bring up one last issue: With my sleep apnea, both before I started using an APAP and after I started using it,
I seem to wake up exhausted and stay exhausted for about 3 to 4 hours, then my energy level picks up a bit. (it's not a normal energy
level, still tired, but not as tired.) Anyone know why this is? My assumption is that after being awake a few hours, some adrenalin kicks
in and my body has gotten used to being awake so is functioning a bit better. I'm still tired and not full of energy, but it's not the
deep exhaustion I have during the first 3 to 4 hours.

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Re: Brand New User: APAP makes me MORE Tired!!

Postby chunkyfrog on Mon Dec 10, 2012 7:32 pm

Let me guess: the APAP is a loaner, after which they plan to sell you a straight CPAP,
probably with no data, like an S9 escape. :twisted: :twisted:
Main reason why they are so intent on leaving it set wide open is
because they want to get it back, and stick you with a BRICK!
Wide open is misery. Mine is set for 3 above and 2 under my 95% pressure.
Some people with some machines are OK to use on 4-20, but not all.
Not me and my Autoset.

_________________
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Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
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Re: Brand New User: APAP makes me MORE Tired!!

Postby kteague on Mon Dec 10, 2012 7:38 pm

Mozart22 wrote:Avg Pressure: 16
95% Pressure: 6.60


Is that 95% pressure really 6.60?

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Mozart22
 
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Re: Brand New User: APAP makes me MORE Tired!!

Postby Mozart22 on Mon Dec 10, 2012 7:57 pm

chunkyfrog wrote:Let me guess: the APAP is a loaner, after which they plan to sell you a straight CPAP,
probably with no data, like an S9 escape. :twisted: :twisted:
Main reason why they are so intent on leaving it set wide open is
because they want to get it back, and stick you with a BRICK!
Wide open is misery. Mine is set for 3 above and 2 under my 95% pressure.
Some people with some machines are OK to use on 4-20, but not all.
Not me and my Autoset.


No, not a loaner. Paid for it out of pocket and I own it.
It's actually a pretty cool machine, it's the latest model and I also like the mask.
Maybe I should manually switch my pressure to 2 above and 2 under the 95%,
after waiting until I have 2 weeks worth of data.

But why was last night's 95% pressure 6.6 while the average pressure was 16?
It doesn't make sense to me. If 95% of the time my pressure was at or below 6.6, how
can my average pressure be 16?

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Re: Brand New User: APAP makes me MORE Tired!!

Postby Pugsy on Mon Dec 10, 2012 8:02 pm

Mozart22 wrote:But why was last night's 95% pressure 6.6 while the average pressure was 16?
It doesn't make sense to me. If 95% of the time my pressure was at or below 6.6, how
can my average pressure be 16?


You are correct. It doesn't make any sense.
Can you grab a screen shot of the report and post it so we can see what you are seeing?
You will need to up load the saved screen shot to some place like Photobucket and get the URL address and use the IMG button here to get the image so we can see it.

Need the AHI colored bar stuff along with the pressure numbers below the AHI bars as well as the graphs on the left with event flags, pressure, flow graph and leak.

_________________
Machine: PR System One REMStar 60 Series BiPAP Auto with Bi-Flex
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: S9 Adapt SV being tried now...not available as menu choice

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Mozart22
 
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Re: Brand New User: APAP makes me MORE Tired!!

Postby Mozart22 on Mon Dec 10, 2012 8:15 pm

Pugsy wrote:
Mozart22 wrote:But why was last night's 95% pressure 6.6 while the average pressure was 16?
It doesn't make sense to me. If 95% of the time my pressure was at or below 6.6, how
can my average pressure be 16?


You are correct. It doesn't make any sense.
Can you grab a screen shot of the report and post it so we can see what you are seeing?
You will need to up load the saved screen shot to some place like Photobucket and get the URL address and use the IMG button here to get the image so we can see it.

Need the AHI colored bar stuff along with the pressure numbers below the AHI bars as well as the graphs on the left with event flags, pressure, flow graph and leak.


I gave out data about last night, but right now I'm looking at data from the night before that (Saturday).
Sunday's AHI was 1.86, but Saturday's AHI was 10.42. Quite a difference!! As for Friday, the AHI was 5.56
On Saturday the 95% total leaks were 38, while on Sunday the 95% total leaks were 24

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