What if...???

Nurofen · Post by **Nurofen** » Fri May 18, 2007 6:48 pm

Hi

I was interested in a recent Post where the question of how had CPAP made things different for people was raised. There were several responses I saw from CPAP users talking about how their lives had dramatically improved since starting CPAP therapy and how they were more active and alert, less tired and there were some wonderful stories of people whose lives had turned around completely for the better.

This got me asking - what if you were using CPAP and the results were showing a significant drop in apnea episodes - meaning a better sleep quality, but you were still feeling the same effects of tiredness, sluggishness, drowsiness, brain fog and a lack of energy that you were feeling before you started therapy?

This is what is happening to me. I use APAP with a Comfort-Lite mask and a Remstar M Series machine. I don't use C-Flex. The machine is giving me the following stats (over the past 30 days);

90%cm H2O - 9.3cm
LPM - 30.0
AHI - 0.7

If I have it right, the AHI Indicator would be the crucial one here - and I believe a 0.7 result is very good. Isn't this showing I should be feeling good?

So why do I wake up groggy, have restless sleep, suffer daytime drowsiness, have bad brain fog and a lack of energy?

Should I be looking outside the realm of sleep apnea for reasons?

I'm interested in people's thoughts on this.

Many thanks.

TerryB · Post by **TerryB** » Fri May 18, 2007 6:59 pm

It is certainly possible that there are external factors at work, possibly limb movement like RLS or PLMD. But, my problem has always been interruption of sleep. APNEA causes low level arrousals which are needed to increase the muscle tension and open the airway. Mask leaks, hose tugs, noises, etc. can cause high levels of arrousal which I found even more destructive to good sleep. I can see a few of these because Ihave to get up for the toilet. But the majority just mean I roll over and go back to sleep so the arrousals aren't indicated in the software reports.

Nurofen · Post by **Nurofen** » Fri May 18, 2007 7:07 pm

Thanks for your response.

I should add also that I get up for toilet visits anywhere up to 6 times a night, ocassionally more. I'm careful not to drink too much (water, not alcohol) at night, but it doesn't seem to make a difference.

Again, I'm not sure if this is related to the apnea, or to something else.

But I know it isn't normal.

RAINSUX · Post by **RAINSUX** » Fri May 18, 2007 7:21 pm

Sure it's possible that something unrelated to the apnea is at work here, but a couple of thoughts come to mind.

It seems that frequent bathroom visits are sometimes due to your waking up because of the apnea and just going to bathroon because you are awake. Of course you don't realize this is happening. How long have you gone this many times at night? Do you go this frequently in the daytime?

The other thought is the concept of "sleep debt". When you have gone untreated for a long time it can take a longer time for your body to respond to the CPAP. Like a credit card that has built up a high balance over a long time can equally take a long time to pay off. I've been on the hose for about five months and I know that I do feel better, but it has been a gradual process.

Hang in there!

Sam

Goofproof · Post by **Goofproof** » Fri May 18, 2007 7:36 pm

You have a few things stacked against you, your machine can't use the software, you are using a Nasal interface and may be mouthbreathing and as said, Rome wasn't built in a day. You may need a lot of repair to make up for the damage that's been done.

Some of us have so much damage already , if we can hold our own we are doing good. Lifesyle also factors into things. You just have to do everything the best you can, and hope for the best. Jim

Wulfman · Post by **Wulfman** » Fri May 18, 2007 7:45 pm

Where are you getting those stats from? The machine in your profile doesn't give anything more than hours slept.....yet you say you're using an APAP.

However, based on your numbers, your mask "leakage" is a bit high.

http://www.internetage.com/cpapinfo/leak-rates-1.html

I'm guessing that you're leaking air out your mouth.
If you're leaking air AND the pressure setting are not properly set on your machine, you are most assuredly having events that are not being treated.

Den

blarg · Post by **blarg** » Fri May 18, 2007 7:49 pm

Since you're listing 90% pressure, I assume you have an auto.

What's the pressure range set to? Most likely you're leaking air out your mouth, and then there's the issue that many people feel worse before they feel better. You'll get this all figured out!

SleepySandy · Post by **SleepySandy** » Fri May 18, 2007 9:12 pm

I'm going to jump in here with a completely different answer.

Nurofen wrote:Should I be looking outside the realm of sleep apnea for reasons?

YES!

Just because we have apnea and have excellent CPAP stats does not mean all of our fatigue troubles will necessarily be fixed.

People with apnea can have many, many other health issues that can leave them feeling exhausted regardless of how great the CPAP stats are.

In your case the first thing I would investigate is overactive bladder. Getting up 6 times a night is definitely not normal and perhaps the overactive bladder alone is affecting your sleep. Waking up and actually getting up 6 times a night is not restful. Drinking less isn't going to do much to alleviate that problem.

I am very familiar with the fact that CPAP is not the ultimate fix for fatigue because I'm one of those people. Here's my situation:

I went for a sleep study because I had been diagnosed with depression and my mood had seemingly been stabilized with meds. Unfortunately, the fatigue did not improve. I was always SOOO tired. I had my sleep study and was diagnosed with apnea. I was excited because I was sure CPAP would make me feel great in no time. When CPAP didn't prove to be the miracle I had hoped for my sleep doc sent me to a psychopharmacologist to have my meds evaluated.

Not only did the psychopharmacologist evaluate me and my meds, he ordered dozens of blood tests that could lead to my level of fatigue. I mentioned that no other doctor had ever ordered so many tests and he said most doctor's practices aren't set up to be as thorough as he was being.

In terms of evaluating me, there was no question I had depresson. However, he also diagnosed me with anxiety. He said people with anxiety have fatigue issues because we don't sleep well - our minds don't stop which makes it difficult to stay asleep. I had often said I wish my brain had an off button so I could turn it off and sleep.

There is also a question about one of my antidepressants suppressing or delaying REM. We've discussed that, but I'm staying on that med for now. He has made some other med changes and I'm dreaming now. I realize some studies are showing it's possible to dream in NREM, but I'm choosing to believe dreaming = REM for me.

As I said, separate from evaluating me and my meds, he did bloodwork. All in all I think I had 25 blood tests. He tailored the choice of tests to my history.

The most significant blood test result for me was I am severely deficient in Vitamin D. The low value of the normal range is 34. I don't remember what the high is - maybe 150. Anyway, my value is 8.4. Vitamin D is starting to be recognized as a contributor in the fatigue / depression / anxiety. He's aggressively treating this and my level will be re-checked in a month.

Treating my Vitamin D deficiency is not going to fix everything. It's a slow process for me: treat the Vitamin D deficiency, treat the anxiety, optimize the treatment for depression, and finally continue with the CPAP. Hopefully, that combination will leave me feeling rested.

I wish CPAP were the answer for all that ails us, but that isn't always the case and sometimes I worry new folks may be left feeling like they're doing something wrong in terms of their treatment if they don't feel better like they expect.

Nurofen · Post by **Nurofen** » Sat May 19, 2007 1:00 am

Thanks again for the responses, I really appreciate your thoughts, suggestions and encouragement. It has so much more impact when it comes from people who have been through what you have and understand.

I'll try and answer the questions asked or raised....

I've been going to the bathroom several ocassions a night for a few years now. And no, I don't go as frequently during the day than I do at night.

I've been on CPAP for about 6 years now, every night. So Sleep Debt wouldn't apply, unless I guess quality of sleep on CPAP has been poor. As in, it has not been treating my apnea as well as it should. I have mostly used in the past an older Remstar Auto but after it recently broke, upgraded to the Remstar Auto M Series model. So, the 'gradual process' of adjustment someone referred to probably doesn't apply to me, being a regular user over several years.

I don't believe I am mouth breathing, as I don't suffer from the dry-mouth effect. Maybe I'm wrong - besides having the dry-mouth, how do I tell if I am?

The stats I provided I get from from the machine. It does actually provide more than just the hours slept.

If my mouth leakage is high, how does it explain the low AHI? Am I getting this right? Shouldn't there be some sort of parallel correlation between the two indicators rather than opposite-correlation?

On my Auto M Series machine, the pressure range is 8.5cm to 16cm.

And finally SleepySandy, thank you for your reply. You have confirmed in my mind the answer to my question of whether to just relying on treatment for sleep apnea when it might be masking something else that should be treated.

Once again, thanks to all who replied to my post.

I wish you all well.

sharon1965 · Post by **sharon1965** » Sat May 19, 2007 8:16 am

nurofen

i've only been on cpap since january 2007, but after reading and hearing about how great i'm going to feel, the results have been disappointing...i did take a month off after septoplasty, but other than that i've been 100% compliant since day one...

at my six week check up with the sleep doc, he told me that my periodic limb movement was quite severe and started me on 'requip'...i know it has addressed the restless leg component, since i'm awake when that happens, but i don't know about the plmd...i do know that the severe pain i had in the involved leg has almost completely disappeared...but he did say that the arousals from the leg movement (approx. every 25-30 seconds) could be causing the extreme daytime tiredness, also...he said, too, that low iron could be contributing to both the tiredness and the plmd, so we had that checked...the normal ferritin level on a blood test should be between 10 and 250...mine was 7...so he put me on prescription iron...i also have fibromyalgia, which i was hoping was caused by the arousals due to osa and plmd, but so far, the symptoms have not begun to diminish...plus, i'm tired, foggy, exhausted and have had a headache almost constantly for 3 weeks now...by the way, i suffer from overactive bladder, but can't tolerate the medication...since cpap, i have decreased bathroom trips from 3-4 down to 1 every night, so that's a positive
so yeah, i hear ya, although i haven't been at it as long as you have...it's so frustrating--i had accepted that it wasn't going to happen overnight like it does for some people, but i'm actually feeling worse since going back on after my surgery, than i was before
it would definintely be a good idea for you to check into other issues...i don't know whether you're male or female or how old you are, but there are obviously hormonal influences at work for women of a certain age...i'm 41 and already experiencing the problems that come with perimenopause

...i hope you are able to get some answers...i guess you can at least feel good about not doing further damage to your heart and certainly by remaining compliant you are reducing the risks of stroke and heart attack, but i'm sure you already know all that...best of luck to you

Goofproof · Post by **Goofproof** » Sat May 19, 2007 10:42 am

You need to correct your profile, If you really have the Remstar Auto, you need the software and reader. the screen data is hard to follow and is unreliable on the "M"agic machines. Jim

rested gal · Post by **rested gal** » Sat May 19, 2007 8:45 pm

LPM - 30.0

That doesn't seem like a high leak rate to me -- not with a Respironics machine. Seems like a rather normal leak rate, isn't it?

I agree with TerryB, sharon, and Sandy that there can be MANY other reasons -- other health issues, med side effects, etc. -- for continuing to feel fatigued and/or sleepy, even when CPAP is doing its part of the job fine.

Wulfman · Post by **Wulfman** » Sat May 19, 2007 9:12 pm

rested gal wrote:LPM - 30.0

That doesn't seem like a high leak rate to me -- not with a Respironics machine. Seems like a rather normal leak rate, isn't it?

I agree with TerryB, sharon, and Sandy that there can be MANY other reasons -- other health issues, med side effects, etc. -- for continuing to feel fatigued and/or sleepy, even when CPAP is doing its part of the job fine.

RG,

I was basing my initial response on the "Leak Rate Chart" (web link) for that mask and pressure. At a pressure of approximately 9, the typical leak rate is stated to be about 25-ish. The leak rate of 30 corresponds with a pressure of 12......or about 20 percent higher than the leak rate at a pressure of 9.
Applying that percentage to MY mask and pressure would put my leak rate in the high 40's.....instead of 38 - 42 where it typically is. Main difference being is that I don't have mouth leaks with a full face mask, but I'd be looking for the leaks if mine was that much higher..

Den