Still tired

[andy88488]

Hi guys,

I'm 100% compliant. I'm a mouth breather, so I wear a full-face mask. According to Encore Basic, my AHI numbers are very low. Since 1/1/13, my average AHI is 0.5, my average RERA is 0.3. My Flow Limitation is 0.7 and my Vibratory Snore Index is 2.8. No leaks.

But I don't wake up refreshed, and I have little energy. I was thinking about getting a Zeo to see if it would shed any light on this, but now Zeo looks like they are circling the drain. And it doesn't look like there is anything similar on the market.

I have no idea if my issue is sleep-related or some other medical issue. I recently tried a new sleep doctor, and he didn't even look at my sleep study. He listened to my story and prescribed Nuvigil and Provigil. Both of these had a short-term effect, but I quickly developed a tolerance/resistance, so they didn't solve any problems. It's occurred to me that maybe I have an undiagnosed sleep issue, but if I had Central Apneas, for example, wouldn't they show up in my CPAP data?

Any ideas or feedback would be helpful.

[Wulfman...]

What are your pressure settings?

If you're using a range of pressures in your APAP, I would recommend switching to straight pressure CPAP mode and see if that solves the problem.

Den

.

[chunkyfrog]

Agreed. Anything you can check for free, do that first.

[quietmorning]

Andy, it may well be worth the sixty some odd bucks to get a mobile zeo - though it is not a medical device - at least you'll see thereabout's how much deep sleep you're getting - though honestly, the zeo may not tell you nearly enough.

I finally insisted with my doctor that I want another sleep study to see if there are other issues effecting my sleep other than apnea - as I'm also very fatigued most of the time. He bumped my pressure up again and told me to see how that does for a month, and if I'm still fatigued, call to schedule a sleep study. I'm going to schedule a sleep study.

One of the things that might be beneficial with the zeo is the sleep journal they have on the site. Zeo just opened a store front on Amazon and put a lot of replacement parts in the storefront. I immediately ordered several things as back ups. . . so they may just be restructuring. . .who knows. Either way. . . it's a great little device that sheds a lot of information for people who have sleep disorders. . .or not.

You also might want to set up a recorder or something in your room. I found that if I'm in deep sleep and my husband makes even the slightest noise in the room when he comes to bed (he's a night owl), I will leap out of deep sleep into light sleep and feel like I've been hit by a brick the next morning. Some people are super sensitive to stimuli. . .it may help to know what that stimuli is so that you can cut as much of it out as possible.

[andy88488]

What are your pressure settings?

If you're using a range of pressures in your APAP, I would recommend switching to straight pressure CPAP mode and see if that solves the problem.

Den

.

I was titrated at 11. Right now, I'm using 10 to 20, although it stays low. For the last seven nights, for example, only 5.4% of the time was spent above 11. I can certainly try straight CPAP. My experience is that I snore on straight pressure at 11, but right now I'm sleeping alone so it doesn't matter.

[andy88488]

Andy, it may well be worth the sixty some odd bucks to get a mobile zeo - though it is not a medical device - at least you'll see thereabout's how much deep sleep you're getting - though honestly, the zeo may not tell you nearly enough.

I finally insisted with my doctor that I want another sleep study to see if there are other issues effecting my sleep other than apnea - as I'm also very fatigued most of the time. He bumped my pressure up again and told me to see how that does for a month, and if I'm still fatigued, call to schedule a sleep study. I'm going to schedule a sleep study.

One of the things that might be beneficial with the zeo is the sleep journal they have on the site. Zeo just opened a store front on Amazon and put a lot of replacement parts in the storefront. I immediately ordered several things as back ups. . . so they may just be restructuring. . .who knows. Either way. . . it's a great little device that sheds a lot of information for people who have sleep disorders. . .or not.

You also might want to set up a recorder or something in your room. I found that if I'm in deep sleep and my husband makes even the slightest noise in the room when he comes to bed (he's a night owl), I will leap out of deep sleep into light sleep and feel like I've been hit by a brick the next morning. Some people are super sensitive to stimuli. . .it may help to know what that stimuli is so that you can cut as much of it out as possible.

Yeah, it occurred to me that even if I only get a few months of usage out of a Zeo, at least maybe I'll learn SOMETHING. As for stimuli, I'm living alone without pets, so there isn't much I can do to reduce it further. Also, this has been a long-standing issue, so I would think I can rule out environmental stuff.

Re the Zeo, is it better to get the unit which sits by the bed, the one that connects to a smartphone, or are they both pretty much the same in terms of benefits?

[Wulfman...]

What are your pressure settings?

If you're using a range of pressures in your APAP, I would recommend switching to straight pressure CPAP mode and see if that solves the problem.

Den

.

I was titrated at 11. Right now, I'm using 10 to 20, although it stays low. For the last seven nights, for example, only 5.4% of the time was spent above 11. I can certainly try straight CPAP. My experience is that I snore on straight pressure at 11, but right now I'm sleeping alone so it doesn't matter.

So, try a straight pressure of 12 cm. and see if that reduces the snoring. Also, if you're not doing nasal cleansing before bedtime, try that, too. Snoring, by itself, is not necessarily detrimental to sleep, but it will drive an APAP crazy with pressure changes.......and that's what I suspect is disturbing your sleep (even if subconsciously) and bumping you out of much-needed sleep stages......thus leaving you feeling unrested.

Best wishes,

Den

.

[Pugsy]

Same questions we always ask when reports look good on paper and someone still feels "no energy" " not well rested" "need to nap" "hard to wake up in the AM".

Taking any meds, even OTC?
How many hours of sleep do you average each night? Is that sleep fragmented (wake up often)?
Have any comfort issues with bed, mask, body aches and pains?
Have any trouble going to sleep? Staying asleep?
Any other health issues?
You have probably had the usual general physical labs but have you had testosterone level checked? Vitamin D level?
Sleep Hygiene?
Caffeine?
Smoking?
and a bunch of other stuff to look at.

You know there are other things unrelated to sleep apnea that will make us feel like crap. We like to put all of our ailments and complaints into the OSA basket and hope the cpap machine will fix everything but it can't fix something if that something is related to a problem other than OSA.
I wish it were that easy...have cpap therapy fix those other things....we would have a lot more people compliant instead of throwing the machine in the closet "because it isn't working because I don't feel any better".

Then we come on the forum and read about some newbie who slapped the mask on last night and woke up this morning ready to take on all the world's trouble...black and white difference in how they feel....I just want to pinch their nose in the middle of the night...really hard.

[quietmorning]

Andy, it may well be worth the sixty some odd bucks to get a mobile zeo - though it is not a medical device - at least you'll see thereabout's how much deep sleep you're getting - though honestly, the zeo may not tell you nearly enough.

I finally insisted with my doctor that I want another sleep study to see if there are other issues effecting my sleep other than apnea - as I'm also very fatigued most of the time. He bumped my pressure up again and told me to see how that does for a month, and if I'm still fatigued, call to schedule a sleep study. I'm going to schedule a sleep study.

One of the things that might be beneficial with the zeo is the sleep journal they have on the site. Zeo just opened a store front on Amazon and put a lot of replacement parts in the storefront. I immediately ordered several things as back ups. . . so they may just be restructuring. . .who knows. Either way. . . it's a great little device that sheds a lot of information for people who have sleep disorders. . .or not.

You also might want to set up a recorder or something in your room. I found that if I'm in deep sleep and my husband makes even the slightest noise in the room when he comes to bed (he's a night owl), I will leap out of deep sleep into light sleep and feel like I've been hit by a brick the next morning. Some people are super sensitive to stimuli. . .it may help to know what that stimuli is so that you can cut as much of it out as possible.

Yeah, it occurred to me that even if I only get a few months of usage out of a Zeo, at least maybe I'll learn SOMETHING. As for stimuli, I'm living alone without pets, so there isn't much I can do to reduce it further. Also, this has been a long-standing issue, so I would think I can rule out environmental stuff.

Re the Zeo, is it better to get the unit which sits by the bed, the one that connects to a smartphone, or are they both pretty much the same in terms of benefits?

I have the unit that sits by the bed - I don't have the mobile. I really like that I can download the data from the smart card. I don't know if the mobile is better or not, as I have no comparison. I know that the mobile is a lot less riskier for the price. Maybe some of those who have the mobile can chime in here and say what they think.

I know that there is a program you can download so that you can see all your data off line, if you want to, so that you don't have to be dependent on the zeo sleep manager site. I want to get that set up, just in case.

Any who. Please keep us posted as you find out what might be up. . . I'm especially interested since you sound so much like me when it comes to sleep. My self, aside, though, I DO hope you get it figured out for your sake. . .so much depends on getting a good night sleep.

[andy88488]

Same questions we always ask when reports look good on paper and someone still feels "no energy" " not well rested" "need to nap" "hard to wake up in the AM".

Taking any meds, even OTC?
How many hours of sleep do you average each night? Is that sleep fragmented (wake up often)?
Have any comfort issues with bed, mask, body aches and pains?
Have any trouble going to sleep? Staying asleep?
Any other health issues?
You have probably had the usual general physical labs but have you had testosterone level checked? Vitamin D level?
Sleep Hygiene?
Caffeine?
Smoking?
and a bunch of other stuff to look at.

You know there are other things unrelated to sleep apnea that will make us feel like crap. We like to put all of our ailments and complaints into the OSA basket and hope the cpap machine will fix everything but it can't fix something if that something is related to a problem other than OSA.
I wish it were that easy...have cpap therapy fix those other things....we would have a lot more people compliant instead of throwing the machine in the closet "because it isn't working because I don't feel any better".

Then we come on the forum and read about some newbie who slapped the mask on last night and woke up this morning ready to take on all the world's trouble...black and white difference in how they feel....I just want to pinch their nose in the middle of the night...really hard.

Hi Pugsy,

A bunch of good questions.

Meds, not so much. I take blood pressure medication, and I recently started taking Concerta for ADD.
Sleep, usually about 7.5 hours a night. I don't think it's fragmented. I go to sleep and stay asleep. I am going to try to go to bed a little earlier.
No comfort issues with the bed, pillow or mask, no real aches.
No serious health issues. My testosterone is low so I use a testosterone gel. Now, aided, it's quite high. I also have osteoporosis, so I take Actonel once a month, and a lot of Vitamin D, Calcium, Magnesium. Oh, and a small dose of statin at night.
Sleep Hygene is okay. I do drink a fair amount of caffeine. I don't smoke.

Any red flags that you see?

Andy

[andy88488]

What are your pressure settings?

If you're using a range of pressures in your APAP, I would recommend switching to straight pressure CPAP mode and see if that solves the problem.

Den

.

I was titrated at 11. Right now, I'm using 10 to 20, although it stays low. For the last seven nights, for example, only 5.4% of the time was spent above 11. I can certainly try straight CPAP. My experience is that I snore on straight pressure at 11, but right now I'm sleeping alone so it doesn't matter.

So, try a straight pressure of 12 cm. and see if that reduces the snoring. Also, if you're not doing nasal cleansing before bedtime, try that, too. Snoring, by itself, is not necessarily detrimental to sleep, but it will drive an APAP crazy with pressure changes.......and that's what I suspect is disturbing your sleep (even if subconsciously) and bumping you out of much-needed sleep stages......thus leaving you feeling unrested.

Best wishes,

Den

.

Hi Den,

Well, snoring is detrimental to my relationships,but right now I don't have one, so it's okay.

What kind of nasal cleaning do you suggest? Frankly, I am frequently slightly congested, with no apparent reason. I'm not stuffed. I just end up blowing my nose a lot, even when I'm not even slightly sick.

[Pugsy]

Caffeine...can be a no no if it seems to disrupt sleep. You say you don't remember a lot of awakenings so it may not be an issue for you especially if you don't have much in the evening...not asking you to stop or change caffeine right now. Just make a mental note.

One change at a time...and if you want to try cpap mode...that's a change

Look up whatever blood pressure medication (and the statin you take at night) and look for any possible side effects like.. look for the long list and not just the short list of major side effects. I would have looked it up if I knew the name.
fatigue
lethargy
fatigue
drowsiness, somnolence
Excessive daytime sleepiness
insomnia (even though you don't seem to present with insomnia sometimes it is a low level arousal thing that you don't remember)
depression (because sometimes the lack of energy feeling is mislabled as depression....
You get the idea...anything that any of your yucky feeling might be masked as.


Concerta
http://en.wikipedia.org/wiki/Methylphenidate
Nervousness, trouble sleeping, anxiety, depression, lethargy, somnolence http://en.wikipedia.org/wiki/Somnolence (strong desire to sleep), there's more to the list but those stand out.

I know you just started Concerta...so we can't blame all your problems on it but it has the potential to certainly not help.

Not saying change meds....just wanting you to see how meds might impact things and get educated about them.

Note that fatigue is not necessarily the same as drowsiness so make sure you understand what your main complaints are..
you say

I don't wake up refreshed, and I have little energy

are you sleepy during the day..need to nap...or just mainly feeling like dragging ass around all day?

Some blood pressure medication can have side effects like fatigue and drowsiness...again ..not saying to change them but it might explain part of the problem. Educate yourself about your meds.

I have just found out that my Dexilant for my GERD has a nasty side effect...diarrhea...like really, really bad ...took me about 4 weeks to finally figure out the cause...thought I had a bad stomach bug. Now that I know that is likely a side effect of the med...I probably won't stop it but I can accept it and maybe do some dosing changes to limit the problem. Sometimes knowing that so and so may be to blame for why we don't feel so great helps us accept things better and then we can discuss it with the doctor to see if there are alternatives available or just something we have to deal with.

It's a rare prescription med that doesn't have some unwanted side effects.

Statins are known to cause fatigue...google "statin and fatigue"...my sister finally read up on what she was taking and talked to her doctor about it and changed to a different type and she says she feels like a new woman.

So 2 red flags...both your hypertension meds and the statins.
The Concerta...is new but it has the potential to certainly not help matters...so we can't blame it for the long term symptoms but it potentially could make the situation worse.

Meds are one of the biggest culprits for feeling yucky.....we fix one problem and create a new one..damned if you do and damned if you don't.

[Wulfman...]

What are your pressure settings?

If you're using a range of pressures in your APAP, I would recommend switching to straight pressure CPAP mode and see if that solves the problem.

Den

.

I was titrated at 11. Right now, I'm using 10 to 20, although it stays low. For the last seven nights, for example, only 5.4% of the time was spent above 11. I can certainly try straight CPAP. My experience is that I snore on straight pressure at 11, but right now I'm sleeping alone so it doesn't matter.

So, try a straight pressure of 12 cm. and see if that reduces the snoring. Also, if you're not doing nasal cleansing before bedtime, try that, too. Snoring, by itself, is not necessarily detrimental to sleep, but it will drive an APAP crazy with pressure changes.......and that's what I suspect is disturbing your sleep (even if subconsciously) and bumping you out of much-needed sleep stages......thus leaving you feeling unrested.

Best wishes,

Den

.

Hi Den,

Well, snoring is detrimental to my relationships,but right now I don't have one, so it's okay.

What kind of nasal cleaning do you suggest? Frankly, I am frequently slightly congested, with no apparent reason. I'm not stuffed. I just end up blowing my nose a lot, even when I'm not even slightly sick.

I've always had congestion problems, too. Some people use a Neti-Pot. I came up with my own variation of that to loosen up and clear out any "crud" before going to bed (or any other time of the day that I'm feeling congested). When I started out my therapy, my Snore Index numbers were in the HUNDREDS (yes, you read that correctly).......now, they're averaging about 0.2. (two extra centimeters of pressure in my CPAP, nasal cleansing and cool, "passover" humidification)

Den

.

[andy88488]

Caffeine...can be a no no if it seems to disrupt sleep. You say you don't remember a lot of awakenings so it may not be an issue for you especially if you don't have much in the evening...not asking you to stop or change caffeine right now. Just make a mental note.

One change at a time...and if you want to try cpap mode...that's a change

Look up whatever blood pressure medication (and the statin you take at night) and look for any possible side effects like.. look for the long list and not just the short list of major side effects. I would have looked it up if I knew the name.

Note that fatigue is not necessarily the same as drowsiness so make sure you understand what your main complaints are..
you say

I don't wake up refreshed, and I have little energy

are you sleepy during the day..need to nap...or just mainly feeling like dragging ass around all day?

Some blood pressure medication can have side effects like fatigue and drowsiness...again ..not saying to change them but it might explain part of the problem. Educate yourself about your meds.

It's a rare prescription med that doesn't have some unwanted side effects.

Statins are known to cause fatigue...google "statin and fatigue"...my sister finally read up on what she was taking and talked to her doctor about it and changed to a different type and she says she feels like a new woman.

So 2 red flags...both your hypertension meds and the statins.
The Concerta...is new but it has the potential to certainly not help matters...so we can't blame it for the long term symptoms but it potentially could make the situation worse.

Meds are one of the biggest culprits for feeling yucky.....we fix one problem and create a new one..damned if you do and damned if you don't.

Yeah, Concerta is relatively new to me, and this a long-standing issue, so I don't think it's that. I know that Statins can cause fatigue, and I've been on and off them for that reason, but again, this is a long-standing issue. I don't really feel sleepy during the day. I don't fall asleep at night when I read in the evenings, so I don't think it's "sleepiness". I wake up feeling not very energetic or refreshed, and I don't have much energy. If you put a gun to my head, I would guess that this is NOT sleep-related, but since I already know that I have Apnea, it makes me wonder if I am wrong.

I have been on Lisinopril for a long time, and it does say that it might cause fatigue. But the only web page that is specific about it talks about it in terms of sleepiness rather than lack of energy. Still, something to talk to my doctor about.

[patrissimo]

Same questions we always ask when reports look good on paper and someone still feels "no energy" " not well rested" "need to nap" "hard to wake up in the AM".

Taking any meds, even OTC?
How many hours of sleep do you average each night? Is that sleep fragmented (wake up often)?
Have any comfort issues with bed, mask, body aches and pains?
Have any trouble going to sleep? Staying asleep?
Any other health issues?
You have probably had the usual general physical labs but have you had testosterone level checked? Vitamin D level?
Sleep Hygiene?
Caffeine?
Smoking?
and a bunch of other stuff to look at.

Great list Pugsy. Figuring out daytime fatigue when CPAP fixes AHI but not your tiredness is frustrating & difficult, several of us are suffering through it. I think of it as 3 categories of possibilities:

1) You have residual SDB that isn't showing up in your AHI (ie UARS). But your FL is quite low.
2) You have poor sleep quality for another reason (PLMD, insomnia, caffeine, vitamin deficiency, etc). Catalog & rule out these possibilities, it takes time.
3) You are tired despite good sleep. This is something you can go to a mainstream or alternative doc for testing. Thyroid function, hormones, vitamin levels, etc. Not straightforward, and takes time too, but maybe you will get lucky and something will stand out in a test.

Personally I'm still exploring all these options for myself, so persevere. It's your life at stake.