Turning Point - Took a While, But I'm There

jnk wrote:

Madalot wrote: . . . hat . . .

I assume it stands for Be Insistent, Take Charge [of one's own] Health.

Actually, no. As a former member of heartless-bitches.com I can attest to the fact that it stands for Being In Total Control of Her/Himself.

Madalot wrote:

DoriC wrote:

BlackSpinner wrote:Congratulations!

I the meantime, I need to figure out what to do about the daytime issue of fatigue and naps. I think one thing that did come out of this was absolute proof that recliner napping is bad, but I still haven't figured out a good way around that short of going to bed, which I still have a major problem doing. I am considering trying to find a used bipap (good one) just for napping. I think for that short time, it would be better than nothing if I feel I just have to sleep in my chair. But, I hate to spend the money if there's any hope of resolving this daytime sleeping problem.

I was just thinking the same thing. I understand about not wanting to actually go to bed in the afternoon but a nap in your recliner isn't unreasonable given that you do have health issues and other stresses that may require you to rest. Even some healthy non-cpappers need a nap. Looking for machine to put next to your recliner might be a solution.

DoriC wrote:

Madalot wrote:

DoriC wrote:

BlackSpinner wrote:Congratulations!

I the meantime, I need to figure out what to do about the daytime issue of fatigue and naps. I think one thing that did come out of this was absolute proof that recliner napping is bad, but I still haven't figured out a good way around that short of going to bed, which I still have a major problem doing. I am considering trying to find a used bipap (good one) just for napping. I think for that short time, it would be better than nothing if I feel I just have to sleep in my chair. But, I hate to spend the money if there's any hope of resolving this daytime sleeping problem.

I was just thinking the same thing. I understand about not wanting to actually go to bed in the afternoon but a nap in your recliner isn't unreasonable given that you do have health issues and other stresses that may require you to rest. Even some healthy non-cpappers need a nap. Looking for machine to put next to your recliner might be a solution.

That's my direction at this point, but financially it's going to be an issue unless I run across a really good deal.

I still believe that SOMETHING is interrupting my nighttime sleep, thus creating this fatigue in the afternoons that I can't get around. I was never like this before the ventilator. Sure, I got tired in the afternoons and would rest sometimes, but this is really not the same as just being a little tired and feeling like a nap. This is a debilitating NEED to sleep, and I mean REALLY sleep soundly, that I can't stop.

Madalot, you're so thorough in responding to all posts, and I don't need a response to mine, but wanted to be sure you saw it. If there's no contraindication, you may benefit tremendously from a drug like Provigil, which is prescribed for other conditions associated with fatigue, such as MS.

SleepingUgly wrote:Madalot, you're so thorough in responding to all posts, and I don't need a response to mine, but wanted to be sure you saw it. If there's no contraindication, you may benefit tremendously from a drug like Provigil, which is prescribed for other conditions associated with fatigue, such as MS.

I will definitely keep this in mind. Thank you. That's something I probably need to bring up to my neuro, but since my pulmo is supposed to be contacting him about this, I don't know. But the way I'm figuring it now, my pulmo will probably "forget" to email my neuro to ask about the limb movements and I'll sit here waiting to hear for a week with nothing being done. That will be about par for the course.

I DID get the reports from my sleep lab today, along with a DVD containing the raw data (supposedly). I don't have the right software to look at the DVD but did see a TON of video files which I tried to open. I couldn't access the video part, but I DID access the audio portion and was a little surprised to find that our conversations, both when I first arrived and during the hookup, were recorded. Not a big deal, but a little surprising to hear. However, it might be nice to have since my doctor ordered watching for desaturations, but now I have it on tape that I told the tech that I might not desat at all, that I have my own recording monitor so I know about it, and that from MY perspective, we were supposed to be looking for why I wake up so much and/or why I'm so tired every day.

I wanted to mention, too, that I never experienced this level of fatigue until after I got on the ventilator/AVAPS.

With that, I've looked at the reports for all three of my sleep studies and found something *I* thought was interesting. Total awakenings (after sleep onset). First study (diagnostic) there were 19, Second (cpap titration) there were 18, Third Study (AVAPS) there were 28.

I'm sure it's possible I'm missing something and/or just don't understand everything I'm looking at, but come on...that's what I'm complaining about!! Wake ups!!

# of awakenings (i.e., arousals) are not interpretable except as indices (arousals per hour of sleep). Then they can be compared to norms.

SleepingUgly wrote:# of awakenings (i.e., arousals) are not interpretable except as indices (arousals per hour of sleep). Then they can be compared to norms.

Interesting. Well, let's look at those full numbers and see if anything seems obvious to anyone. Studies 1) Diagnostic (no equipment); 2) Titration on CPAP; 3) Omni-lab using AVAPS, 2L Oxygen (mimicking what I do on my ventilator)

#1 Diagnostic
Total Recording Time 481.9
Sleep Period Time 468.4
Total Sleep Time 445.0
Sleep Efficiency 92.3%

Sleep latency (in min) 13.4
Total Stage Changes
(after sleep onset) 76
Awakenings 19

REM Periods 4
REM Latency (min) 125.5
Rem Latency
(Less wake Time) 113.5

#2 CPAP Titration
Total Recording Time 421.2
Sleep Period Time 441.3
Total Sleep Time 366.0
Sleep Efficiency 79.4%

Sleep latency (in min) 19.9
Total Stage Changes
(after sleep onset) 54
Awakenings 18
WASO (min) 75.0

REM Periods 1
REM latency 345.0
REM latency
(less wake time) 277.0

#3 AVAPS w 2L Oyxgen
Total Recording Time 458.1
Sleep Period Time 435.3
Total Sleep Time 314.5
Sleep Efficiency 68.7%

Sleep latency (in min) 22.7
Total Stage Changes
(after sleep onset) 76
Awakenings 28
WASO (min) 120.8

REM Periods 2
REM latency 222.5
REM latency
(less wake time) 185.5

This may not mean much of anything, but...who knows? I sure as heck don't.

I also wanted to point out that that there WERE limb movements on all 3 studies, especially during REM sleep. This was never mentioned on any summary.

If I may have a sarcastic moment...

Are you suggesting that "dancing" in your sleep wakes you up and wears you out to the point where you lack energy the next day?

Perhaps you should consider dancing all day and sleeping at night...

It is good to hear that you received your data. You may be able to find someone that has access to some way to read the data. From there you can look for interesting patterns that you can ask questions about.

Divide the total sleep time in minutes by 60 to get the number of hours slept. Then take the number of awakenings and divide by the number of hours you slept to get the arousal index. For example, 314 minutes of sleep divided by 60 minutes = 5.23 hours slept. You had 28 awakenings so 28 divided by 5.23 means you had 5 awakenings per hour.

The only confusion here is that I don't know what they mean by "awakening" vs. "arousal". On my sleep studies it was always called arousals, so by awakening do they mean something over and above an arousal? I don't know. Also another caveat is how long you're awake for each one. 5 or less arousals per hour is normal, and even more could be normal. But again, I don't know about an "awakening", particularly an extended one, although keep in mind that a sleep lab is not a "normal" night's sleep.

Some limb movements are also "normal" and need to be compared to norms to know if they are exceeding normal rates. Even if they are, if they aren't associated with arousals, there is a controversy as to whether those are meaningful.

SleepingUgly wrote:The only confusion here is that I don't know what they mean by "awakening" vs. "arousal". On my sleep studies it was always called arousals, so by awakening do they mean something over and above an arousal? I don't know.

"sleepydave" on another board is the same person as "StillAnotherGuest", Muffy, NotMuffy, and deltadave" on cpaptalk:

sleepydave wrote:
An arousal is simply a 3 to 15 second break in sleep continuity, and an awakening is 15 seconds or more. It's usually to an alpha pattern. You may be aware of awakenings (not to be confused with really being "awake") but you won't be aware of arousals.

A hypopnea needs either an arousal and/or a desaturation to be scored as such. In adults, virtually all respiratory events will be terminated by an arousal (the rule kind forces that issue).

http://www.apneasupport.org/viewtopic.php?p=27820
________________________________________

Stage changes occur normally (not caused by arousal) about 7 times per hour, 40-50 times per night in a "normal" night's sleep, perhaps a few more in the first 90 minute sleep cycle, let's say 11 and maybe a few more after that due to "lab effect". I've seen the number 70-75 stage changes as "normal" during a first-night sleep study.

An arousal will often cause a stage change, but that's not a requirement, and there's plenty of cases where that won't happen, so you can have a bunch of arousals not reflected in the stage changes.
sleepydave

Madalot wrote: But the way I'm figuring it now, my pulmo will probably "forget" to email my neuro to ask about the limb movements and I'll sit here waiting to hear for a week with nothing being done...

What exactly do your reports say about the limb movements?

Madalot wrote:...I wanted to mention, too, that I never experienced this level of fatigue until after I got on the ventilator/AVAPS.

The frustrating part is not knowing why. Is it because the sleep deficiency is finally reaching a point you can't tolerate? Is the treatment itself not therapeutic? Is the treatment getting better and revealing more of a limb movement issue? Sorry to hear you are still searching for answers. Hope that changes soon.

The reports I have list Awakenings like I posted, but later on (on my last study anyway) they have a section about Arousals. Unfortunately, this is too much for my brain to absorb and understand -- right now anyway.

This is very hard for me to post, but I've hit a point where I am about ready to give up. This just isn't worth all this aggravation. I told my husband yesterday that I don't want to do this anymore.

I sleep better (without waking up so much - whether we call them "awakenings" or "arousals") WITHOUT the ventilator. The only problem *I* have with that is it's a struggle to breathe. My chest hurts and I am very aware of the fact that it's an effort for me to breathe without the machine. But WITH the machine, I wake up A LOT and only get about 6-8 hours of usable time in the morning to function.

On top of that, I found out last week that my Mom & Pop DME, the one that I have worked with and struggled with from the beginning AND finally gotten into a good routine and understanding with -- was sold to a major home health care chain. While this may be good on some counts (they have a lot of RT's on staff), I had some one-on-one understandings with the OWNER of my DME about how we work together. He basically sold the company 6 weeks ago (I just found out) and has totally abandoned the respiratory side of any of it.

This news has hit me like a ton of bricks. You take a stressful sleep study that came up with a solution of "tennis balls" -- And I'm about done.

I understand the medical community (I'm referring to doctors, sleep labs, DME's, etc) has their own set of issues and problems that make providing good care difficult, but damn...it shouldn't be this hard to get answers, especially with a patient like me that can really tell them A LOT about what's going on.

My husband agrees and is VERY upset all around. He knows that my neuromuscular disease has compromised my ability to breathe and the ventilator is necessary to combat that, but with all the side issues and problems -- I've told him I don't want to do it anymore. And I'm serious.

We went to bad last night and I did not use the machine. He said to me "I don't hear any noise" to which I replied "And you're not going to. It's just the way it is." And he decided not to argue with me.

But I woke up about 4:20 and I'm guessing my cat sensed something amiss because he wouldn't leave me alone (he never does that). I tried to go back to sleep, but found the breathing difficulty uncomfortable and finally gave up around 5:00 and decided to get up.

:::sigh:::

Kathy,
I believe that from the day we are born till we the day we die, sometimes consciously, and often unconsciously, we struggle to give ourselves a good quality of life: in our bodies, in our relationships, spiritually.
Your struggle for a quality of life is harder, more intense than for most of us, And it's so difficult to keep on that struggle, knowing you have to struggle so much when you body is betraying you so badly.

I have no suggestions about you can or should do with the ventilator at this point. But I am pretty sure that exposing yourself to desaturation the way you did last night is not going to make things easier for you.

It seem to have become an either or situation: either you don't desaturate, or you don't sleep.

There has to be a mid-way.

When necessary therapy becomes too painful, or disruptive, doctors do take measures to alleviate the noxiousness.
Maybe there's some type of medication that will help you sleep despite the vent -- Maybe you can discuss with your doc some vent settings that will let you sleep, albeit with imperfect saturation.
You are not a body in need of oxygen, you are a human being in need of a reasonable quality of life.

O.

ozij wrote:Kathy,
I have no suggestions about you can or should do with the ventilator at this point. But I am pretty sure that exposing yourself to desaturation the way you did last night is not going to make things easier for you.

I've come to the same conclusion. I just told my husband, who is cautiously ecstatic, that even though I hate it and am just about as unhappy as I have ever been, the struggle to breathe is more upsetting than the awakenings and resulting daytime fatigue.

So, I promised him I would use the ventilator tonight and keep using it, despite how I feel about it.

Maddie, what are the file extensions on that CD???

"We" may be able to download the necessary software free. One of my sleep studies was usuable w/my 'puter. The other I had to download a free software from the net.