Minimal AHI ... Still DEAD Tired! - 10 years in.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
deadtiredcanadian

Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by deadtiredcanadian » Sun May 24, 2015 7:47 am

Hi,

I need some guidance from the experts in this board. I was diagnosed with Severe sleep apnea and had an AHI of 45.

For the past 565 days my average AHI is 1.67

I wake up, every single day, dead tired. Like a Zombie. As if a truck has just ran over me.

Last night I slept 7.5 hours (wow) and yet woke up in a pretty bad place -- so much that here I am posting for the first time here.

I have replaced machines and masks, and currently have one with a great mask fit and I use it every single night.

My case is not one of "stick with the therapy". I've been using a machine for over 10 years, getting closer to 15. I comply with the therapy.

It is very disappointing. The minimal AHI suggests that the therapy is working, but if so, why do I feel so bad?

I really dread doing another sleep study, is that the only solution? I will do it I guess, but there's got to be something more here.

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LSAT
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Re: Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by LSAT » Sun May 24, 2015 7:50 am

Have you had a complete physical with blood work ups to rule out other possible causes of your fatigue?

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deadtiredcanadian

Re: Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by deadtiredcanadian » Sun May 24, 2015 8:10 am

Yes, my last two physicals have shown that I am very healthy (lol)... I've even done cortisol levels, iron, vitamin D and B, etc. and all normal.

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Julie
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Re: Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by Julie » Sun May 24, 2015 8:14 am

What are your pressure settings?

Do you use SleepyHead (free software DL from the forum) so you can see what's going on?

deadtiredcanadian

Re: Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by deadtiredcanadian » Sun May 24, 2015 8:17 am

I have an APAP set from 4 to 20; the average pressure (over 560+ days) to get me to 1.67 AHI is 7.5; this is automatically calibrated throughout the night. Yes, I have the software and that's how I've been able to tell all this. I've looked for any other obvious things that can explain why I am so dead tired but nothing jumps at me (I'm an engineer so I'm can make some sense of the data).

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Julie
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Re: Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by Julie » Sun May 24, 2015 8:33 am

The first thing I suggest is bumping your low pressure (4) to 7 and see how that goes over a few nights... because your machine's having to work too hard to play catch up when anything happens. 4+20 are the default machine settings, not prescribed ones, and too many MDs are either too ignorant or lazy to prescribe based on your sleep study results, so we have to do things on our own, take control of our therapy and learn as we go.

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Pugsy
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Re: Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by Pugsy » Sun May 24, 2015 8:50 am

Having a nice low AHI doesn't guarantee that we are going to feel those good numbers. Wish it were that simple because getting a nice low AHI is actually pretty easy to do. Unfortunately that's not the way it is in real life for some people.

Some things to consider when we aren't feeling as good as those numbers seem to say we should feel.

1..Look at sleep quality...and not only hours of sleep but the overall sleep quality as in are those hours of sleep fragmented with multiple wake ups?
2..Look at medications taken along with possible side effects of those medications being a factor.
3..Look at the leak reports as well as the AHI itself...if leaks are a problem it could be masking sub optimal therapy.
4..Look at sleep hygiene in general.
5..Look at other potential health issues and this includes mental as well as physical health issues.
6..Look at maybe trying fixed cpap pressure or a tiny range in apap mode just in case the changing pressure of auto adjusting mode maybe being a factor in overall sleep quality. Some people find they sleep better and feel more rested in cpap mode than in apap mode.
7..Look at bed comfort in general.
8..Insomnia....either sleep onset or sleep maintenance

Lots of things affect how we feel during the day and impact our energy levels during the day...and not everything can be fixed with optimal cpap therapy and having a nice low AHI number. Takes a lot of detective work to sort it out and fix or try to fix.

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deadtiredcanadian

Re: Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by deadtiredcanadian » Sun May 24, 2015 8:52 am

That was my first impulse this morning, to bump the low pressure to something higher -- however when I look at my average AHI for such a long time it seemed that the pressure is working for me; otherwise I should have more AHIs, no?

It also seems that the most the machine gets to is 7 or 8 throughout the night.

I can definitely try that and if there's no other option will do that. I am aware that the 4-20 is the default setting and would gladly change it, I'm just wondering if the problem is the pressure, why are my AHIs so low?

GTOJim
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Re: Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by GTOJim » Sun May 24, 2015 9:03 am

I had your exact problem, 10+ years using CPAP, low AHI, and dead tired. Had a sleep study and discovered I have PLM which was causing 30 arousal's per hour. Medication for PLM has been a big help.

Based on my experience I would suggest having a sleep study done if you haven't had one recently.

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deadtiredcanadian

Re: Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by deadtiredcanadian » Sun May 24, 2015 9:05 am

Here is where I stand on these:
1..Look at sleep quality...and not only hours of sleep but the overall sleep quality as in are those hours of sleep fragmented with multiple wake ups?
This is pretty bad for me. I have vivid dreams and toss and turn a lot. Naturally is an area where further inspection must be done but I have no idea what else to do (see below).
2..Look at medications taken along with possible side effects of those medications being a factor.
I take no medications whatsoever. I would take vitamins (like B6) which would, at times, improve the quality of my vivid dreams. I've tried Niacin and Melatonin and they just make me sleep longer but I still wake up tired.
3..Look at the leak reports as well as the AHI itself...if leaks are a problem it could be masking sub optimal therapy.
This is quite good, very low leaks. I've had some 5 different masks over the years and quite happy with my current one in terms of comfort and leaks. This took me many years to figure out.
4..Look at sleep hygiene in general.
This is something I've been improving over the years. I used to sleep only 5.5 hours a night now I am approaching 7. Low light in the room, leave computer behind before, blindfold, etc. --- sure I can do more, and yet very little to no improvement over the past several years. Which is why I was suspecting I would still be experiencing tons of apnea incidents, but I can rule that case out it seems.
5..Look at other potential health issues and this includes mental as well as physical health issues.
For the past 3 months I've been exercising lots and modifying my diet. I've experienced dramatic weight loss and gains over the past, and I wish I could tell you "I felt better when I was 30 pounds lighter", but I can't. So far, for me, weight loss or gain and exercise seem to have very little to no correlation to my sleep quality. In other words, my sleep quality is pretty BAD regardless of what I do. Hence my desperation.
6..Look at maybe trying fixed cpap pressure or a tiny range in apap mode just in case the changing pressure of auto adjusting mode maybe being a factor in overall sleep quality. Some people find they sleep better and feel more rested in cpap mode than in apap mode.
This i haven't tried and I guess it's a remaining choice. When I look at the low AHIs I would suspect that I am having no trouble with the therapy but the results are not there.
7..Look at bed comfort in general.
I've improved my mattress and I am really happy with what I have --- tempur with 10+ pillows. I travel a lot and have tried hundreds of beds in 4 and 5 star hotels and can tell you that my bed at home is by far my favourite.
8..Insomnia....either sleep onset or sleep maintenance
I now fall asleep way easier, but do wake up a few times a night when I toss and turn so much. Unsure what to do about this based on the above.

Guest

Re: Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by Guest » Sun May 24, 2015 9:06 am

GTOJim wrote:I had your exact problem, 10+ years using CPAP, low AHI, and dead tired. Had a sleep study and discovered I have PLM which was causing 30 arousal's per hour. Medication for PLM has been a big help.

Based on my experience I would suggest having a sleep study done if you haven't had one recently.
My wife reports that I twitch a lot during the night. Can you please elaborate more on what medication have done for you and what you've taken?

GTOJim
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Re: Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by GTOJim » Sun May 24, 2015 9:21 am

Per my wife's description once in a while would shutter while sleeping. It wasn't something she noticed nightly. As for medication I'm taking pramipexole .35mg, and about a year ago started taking Nuvigil 125mg which helped with alertness, clearing the brain fog.
Guest wrote:
GTOJim wrote:I had your exact problem, 10+ years using CPAP, low AHI, and dead tired. Had a sleep study and discovered I have PLM which was causing 30 arousal's per hour. Medication for PLM has been a big help.

Based on my experience I would suggest having a sleep study done if you haven't had one recently.
My wife reports that I twitch a lot during the night. Can you please elaborate more on what medication have done for you and what you've taken?

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Re: Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by avi123 » Sun May 24, 2015 9:31 am

what about more medications that you take especially the psychotic ones? Please list them
Nuvigil 125mg
pramipexole .35mg

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Last edited by avi123 on Sun May 24, 2015 9:36 am, edited 2 times in total.
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Re: Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by Guest » Sun May 24, 2015 9:34 am

avi123 wrote:what about more medications that you take especially the psychotic ones? Please list them
I am not taking any medications whatsoever.... have tried for a few days taking some B6 which improves the quality of my dreams but that's about it.

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Re: Minimal AHI ... Still DEAD Tired! - 10 years in.

Post by Pugsy » Sun May 24, 2015 9:37 am

What model machine and software are you using?

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I may have to RISE but I refuse to SHINE.

If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.