Still tired after all these years...

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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avi123
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Re: Still tired after all these years...

Post by avi123 » Thu Mar 13, 2014 7:01 pm

BleepingBeauty wrote:
avi123 wrote:Bleeping, you post that you have CSR. In the past you have used Auto CPAP. Do you agree that those with CSR should NOT use APAPs?
No, I wouldn't make a blanket statement like that at all.

Question,

Bleeping,

I keep posting the following, but in your experience it was not so. Am I wrong?:

As of 2008, according to The American Academy of Sleep Medicine, using Auto CPAP is contraindicated for those who have these underlying medical conditions.

Image


"Patients with congestive heart failure, significant lung disease such as chronic obstructive pulmonary disease (COPD), patients expected to have nocturnal arterial oxyhemoglobin desaturation due to conditions other than OSA (e.g., obesity hypoventilation syndrome), patients who do not snore (either naturally or as a result of palate surgery), and patients who have central sleep apnea syndromes (CSAS) are not currently candidates for APAP titration or treatment. (Standard)"


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BleepingBeauty
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Re: Still tired after all these years...

Post by BleepingBeauty » Thu Mar 13, 2014 7:38 pm

avi123 wrote:Bleeping, you post that you have CSR. In the past you have used Auto CPAP. Do you agree that those with CSR should NOT use APAPs?
BleepingBeauty wrote:No, I wouldn't make a blanket statement like that at all.
Question,

Bleeping,

I keep posting the following, but in your experience it was not so. Am I wrong?:
...
In my experience, usually, yes.

Seriously, I don't know if APAP is contraindicated for anyone. It was not a good fit for me.

As an aside, after more than three years on this forum, I'd think you could use the quote function properly. I fixed it for anyone reading along.

Now, please stop hijacking coffee's thread.
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

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avi123
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Re: Still tired after all these years...

Post by avi123 » Thu Mar 13, 2014 9:00 pm

OK, if so please correct " Velcroe" in your motto to "Velcroed". All words are in the past tense.

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see my recent ResScan treatment results:
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Re: Still tired after all these years...

Post by nanwilson » Fri Mar 14, 2014 8:24 am

avi123 wrote:OK, if so please correct " Velcroe" in your motto to "Velcroed". All words are in the past tense.
I didn';t know you were the language police Avi... we realy don't care if aword is misspelled or used out of contexxxt ... so why should you.
Started cpap in 2010.. still at it with great results.

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Re: Still tired after all these years...

Post by robysue » Fri Mar 14, 2014 1:57 pm

coffee wrote: My compliance is good, I use the machine nightly.
I have succeeded in reducing my AHI from 47 down to around 5-7.
Unfortunately, my daytime sleepiness and energy levels have not increased.
I drink loads of coffee daily with minimal effect. I have been prescribed Provigil and Nuvigil without success.
Forgetting about the PAP and the machine scored AHI for just a minute: How's your sleep otherwise? Do you take a long time to fall asleep each night? Do you wake up a lot during the night? Do you feel like you toss and turn a lot during the night? Does your wife notice any thrashing around at night?

And how is your sleep hygiene? How regular is your wake up time? How regular is your bedtime? How many hours of sleep do you think you get on a typical night? When's the last cup of coffee relative to bedtime? When do you turn the TV off relative to bedtime? Do you read, eat, watch TV, or web browse when you are in bed?

And how active are you in the daytime? Do you get enough physical activity to actually be tired by bedtime?

Are you currently on any medications? (You mentioned Adderall in the past, but it seems as though you're not taking anything now, but I just want that clarified.)

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Re: Still tired after all these years...

Post by robysue » Fri Mar 14, 2014 2:02 pm

coffee wrote: I don't check my computer stats very often. Last I checked, the software for EncorePro would not work on a MAC, so I have to get my data when I visit my sleep doctor and they download it for me.
Before I got my MacBook Pro with Parallels installed, I bought a really cheap netbook running Windows 7.1 from Target for less than $200 and installed Encore Pro and Encore Basic on it. (I also use Sleepy Head, but Sleepy Head is not fully compatible with your machine.)

You might also want to look at installing Parallels on your Mac. Not sure how much it costs since I bought my MacBook Pro used and Parallels was already installed on it. I can say that Encore runs well under Parallels.

But before you buy anything, do check out some of Pugsy's threads. Some or all versions of Encore are NOT compatible with Windows 8 machines. And some versions of Encore may not be compatible with your machine.
I've tried reducing my coffee intake, but it makes it even more difficult to get through the day...
Reducing caffeine is hard. I had to give it up entirely because it triggers migraines.

When is the last cup of caffeinated coffee relative to bedtime?

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Re: Still tired after all these years...

Post by robysue » Fri Mar 14, 2014 2:09 pm

coffee wrote:My sleep doctor fears my failure to recover may be due to the years my OSA went misdiagnosed and untreated.
and
kaiasgram wrote:coffee (love the username!),

I really appreciate your coming back to the forum with your story. I'm not so quick to just dismiss your doctor's concern about the possible reason for your failure to recover since starting PAP therapy. I'm now two years into my therapy and so far my story is the same as yours -- night breathing is well treated, compliance is 100%, lots and lots of tests looking for other causes of failure to improve, and nothing turning up.
I'm inclined to agree with kaiasgram. I'm not as bad off as you or kaiasgram, but 3 1/2 years into therapy, and except for a major reduction in hand and foot pain, there's not been a real increase in terms of my daily energy even though my numbers are good. I'm luckier than you and kaiasgram because my pre-CPAP sleepiness was nonexistent and my daytime fatigue was not at the exhausted 100% of the time level. On PAP, I've developed a lot of daytime sleepiness that simply wasn't there before. But then, I've also been fighting insomnia off and on ever since starting PAP therapy.
There is some research pointing to neurological damage from untreated apnea, some of which seems to improve slowly over time, and some which does not improve. But it's a subject that is not discussed much here, possibly because those who fail (or mostly fail) to recover give up on the therapy, concluding it doesn't work, and they don't stay on a forum like this. Like you I plan to stick with PAP because at the very least it's 'damage control,' but the heavy unrelenting tiredness is tough to deal with. I also plan to keep looking for answers and not give up because I'm not fond of the 'permanent damage' scenario. And there may still be answers and solutions we just haven't discovered yet. I appreciate everyone's ideas here too.
I think there's a lot they don't really know or understand about the long term damage some OSAers experience and how long it may take to start feeling better. I also tend to think the docs don't want to admit that some of us never actually feel much better.

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Re: Still tired after all these years...

Post by coffee » Fri Mar 14, 2014 3:14 pm

I used to have an old pc laptop I used only for checking the encore pro software. After the laptop died I stopped checking the stats myself.
But It looks like there are now a few options for viewing Windows applications on my Mac with minimal effort & cost. Time to get back to self-analyzing the data...
I'll have to check to see if the EncorePro software I have that worked with my earlier Remstar APAP will work for my Remstar AuotSV.

My sleep is fairly regular. About 8 hours a night. No thrashing or tossing and turning. Wake up once, sometimes twice for bathroom. No tv, or computer in bedroom, those activities, and reading, are mostly done in other rooms.
Last cup of coffee is usually around 4pm, sometimes later if there are evening plans...
I'm physically active during the day and relatively fit. I take Hydrochlorothiaz for high blood pressure (which I didn't have until sleep apnea), and Citalopram which seems to help keep me from getting distraught and irritable about my continuing weariness.

It's tough, after years of fatigue and discouragement, it's hard to remain energetic about finding a solution to this problem.
You hear about people who bounce back to life after beginning CPAP, but it's obviously not the case for many of us.

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Re: Still tired after all these years...

Post by Boremc » Fri Mar 14, 2014 6:11 pm

Unfortunately I don't have any solutions to offer you, just some sympathy. I'm kind of going through the same thing, although I haven't been on CPAP nearly so long--only 6 months. But it hasn't helped at all, and I'm still dealing with extreme sleepiness. I've tried Nuvigil and Provigil, and several other stimulants. I'm currently on large, twice-daily doses of Adderall, which I supplement with a lot of caffeine. Doesn't help much. Blood tests have shown nothing wrong, no thyroid problems, vitamin deficiencies or anything like that. I am overweight, which obviously doesn't help, but that alone shouldn't be making me this tired! I have tried cutting all the stimulants out, in hopes that I would then get more restful sleep, but it didn't do anything but make me even sleepier during the day. So I've been combing this forum, looking for answers. I hope we both find some! Good luck, and know that you're not alone.

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Re: Still tired after all these years...

Post by Todzo » Fri Mar 14, 2014 7:44 pm

A recent study[1] found that beyond the obstruction that CPAP is able to treat there may be nonanatomic features that play an important role in 56% of patients with OSA.

The features that they looked at were:

A. hi respiratory control loop gain (a tendency to loose good control of breathing)
B. low arousal threshold
C. minimal genioglossus (tongue) muscle responsiveness

CPAP tends to exacerbate “A” as the pressure tend to be a plus factor for respiratory control loop gain.

CPAP has, in my opinion, high levels of noise, vibration, fast pressure changes, and initial back pressures upon the start of exhale which all tend to result in excessive arousals due to “B”.

The tongue is heavy and tends to swell due to allergic response and for many other reasons. While I do believe that the pressure of CPAP helps shrink the tongue I also think that there comes a point where it is not enough. I have found my own tongue to apparently change in size in terms of how much room it takes up with my mouth closed. I would guess this is common.

“A” seems to be helped by getting vitamin D3 levels above 50 (see The Vitamin D Counsel for information regarding the proper assay). I have found that it is directly related to the stress levels in my life. I have found it helpful to pursue good metabolic health (eat well move well) and that long term exercise is helpful if it contains a bit of good aerobics appropriate for my fitness level.

“B” seems to be most helped by long term exercise. Not high level just “keep it moving” until good and tired by the end of the day. But not too much.

“C” seems to be helped by the pursuit of good metabolic health and anti-inflammatory foods. I believe that all with OSA should be assigned a dietitian and personal trainer for at least three years.

To make CPAP work I believe that you must review the CPAP data twice a week and use it to modify lifestyle or therapy. You will change and that will change how CPAP works for you.

[1] Danny J. Eckert, David P. White, Amy S. Jordan, Atul Malhotra, and Andrew Wellman "Defining Phenotypic Causes of Obstructive Sleep Apnea. Identification of Novel Therapeutic Targets", American Journal of Respiratory and Critical Care Medicine, Vol. 188, No. 8 (2013), pp. 996-1004. doi: 10.1164/rccm.201303-0448OC
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Re: Still tired after all these years...

Post by robysue » Fri Mar 14, 2014 9:04 pm

coffee wrote:I used to have an old pc laptop I used only for checking the encore pro software. After the laptop died I stopped checking the stats myself.
But It looks like there are now a few options for viewing Windows applications on my Mac with minimal effort & cost. Time to get back to self-analyzing the data...
The data can provide some powerful motivation to keep plugging away when it's good. And when it's not, it can provide some ideas on what things might need to be tweaked to help therapy be more effective and less annoying.
My sleep is fairly regular. About 8 hours a night. No thrashing or tossing and turning. Wake up once, sometimes twice for bathroom. No tv, or computer in bedroom, those activities, and reading, are mostly done in other rooms.
Last cup of coffee is usually around 4pm, sometimes later if there are evening plans...
I'm physically active during the day and relatively fit.
It may be a good idea to try to limit the coffee to no later than noon.

It's also a bit unusual that you're still waking up needing to go the bathroom once or twice a night.

Do you know what the data looked like the last time you had the DME check it?
I take Hydrochlorothiaz for high blood pressure (which I didn't have until sleep apnea), and Citalopram which seems to help keep me from getting distraught and irritable about my continuing weariness.
Drowsiness is listed as a side effect of Hydrochlorothiaz.

Sleepiness and unusual drowsiness, difficult with concentrating, and lethargy are all listed as side effects of Citalopram.

So it may be a good idea to check with the docs who prescribed these medicines about whether they may be contributing to your on-going problems with the continuing weariness. And also whether there are alternative meds that may cause less of a problem if either of these meds are contributing to the continuing weariness.
It's tough, after years of fatigue and discouragement, it's hard to remain energetic about finding a solution to this problem.
You hear about people who bounce back to life after beginning CPAP, but it's obviously not the case for many of us.
Yes, it's tough. It's also hard to not get jealous of those folks who find that CPAP makes a miraculous difference almost immediately. But unfortunately we have to play the hand of cards we're dealt with. Good luck with finding some answers.

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Re: Still tired after all these years...

Post by Foulplaytwo » Sat Mar 15, 2014 7:08 am

I have had the same experience. Suggest that you have your testosterone level checked.

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Re: Still tired after all these years...

Post by Sandra_ON » Sat Mar 15, 2014 11:44 am

I am into my second month on CPAP and I had hoped my daytime tiredness would have gone away by now but it hasn't. If I sit in my recliner and try to read, I fall asleep. I often fall asleep in the evening watching TV. I had hoped that by now I"d be raring to go!

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Re: Still tired after all these years...

Post by robysue » Sat Mar 15, 2014 12:10 pm

Sandra_ON wrote:I am into my second month on CPAP and I had hoped my daytime tiredness would have gone away by now but it hasn't. If I sit in my recliner and try to read, I fall asleep. I often fall asleep in the evening watching TV. I had hoped that by now I"d be raring to go!
Sandra,

Have you or the doc or the DME looked at the data on the SD card???? And do you have a follow up scheduled?

Even though it takes some of us a lot longer than a couple of months to start feeling better, you've been at PAPing long enough where it's worth looking at the data to be sure the current pressure settings are enough to bring the AHI down to less than 5.0 on a regular a basis and also to make sure the leaks are under control. If either the AHI is too high or the leaks are too high, that could explain the on-going fatigue and sleepiness.

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Re: Still tired after all these years...

Post by Sandra_ON » Sat Mar 15, 2014 3:03 pm

Have you or the doc or the DME looked at the data on the SD card???? And do you have a follow up scheduled?

Yes, I go to the RT monthly and he checks my card. I started at a pressure of 9, he put me up to 10 and then back to 9 as I was experiencing breathing problems and heaviness in my chest. Everything else looks fine.

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