Going backwards

Sleepless on LI · Post by **Sleepless on LI** » Thu Sep 08, 2005 5:12 am

I recently had switched gears from straight cpap to auto to see how things would go. I blamed slightly higher AHI's and feeling tired to that fact and just figured straight cpap worked best for me. Since going back, though, out of three nights, only one night had a better AHI again (not that what I'm calling higher is high, 1.0-1.8 ) and I am still feeling very tired.
Before I call and make an appt. to start the round robin of doctor visits because yesterday I truly felt almost pre-cpap, no energy and kept yawning, and due to the fact that I can't sleep very well at all, I want to know if anyone else finds that after awhile (for me, three months) their therapy takes a step back or regresses for some unexplained reason. I've seen questions like this before but can't find the posts. Perhaps they've been in the middle of a thread.
I was diagnosed with a lot of PLM's per hour at my study (14+) and it seemed to be under control after going on therapy. I never knew I had PLMD before the PSG, by the way, but they said it was responsible for significantly fragmenting my "sleep architecture."
Has anyone else gone through the same thing and, if so, do you go back to "normal" without medical intervention? I'm just looking for similar situtations from anyone out there.
Thanks.

Hmmmm? · Post by **Hmmmm?** » Thu Sep 08, 2005 2:13 pm

[quote="Sleepless on LI"]I recently had switched gears from straight cpap to auto to see how things would go. I blamed slightly higher AHI's and feeling tired to that fact and just figured straight cpap worked best for me.

Hi Sleepless,

Thanks for your response about large leaks. I'm still thinking about that one. I swithed from FF to Comfort Classic. I've tried it several times and had a hard time getting used to it. For some reason, last night it wasn't too bad. Will use it again this evening. Anyhoo, I checked my Encore data (pg 4) and noticed that all the tics occurred when my pressure started to increase (setting 10-12cm) and remained at above 10cm. Did you notice the same? Using the Classic I had no lg leaks, avg leak was 45, OA = 2.0, H=2.2, FL=0.0 and S=1.2. Tonight I'm thinking of either lowering the upper cm to 11 or going straight 10cm. Hmmmm....do the tics come 1st or the the increase in cm?

Stan

BP · Post by BP » Thu Sep 08, 2005 2:30 pm

Hang in there Lori, it seems like there's always something we have to deal with, with osa. If it's not plm's, it's noisy machines. Let us know what the dr's say. I had 15 plms per hour in my psg as well. I have been reading here that the general assumption is the osa causes the plms in many cases, and they generally subside with cpap therapy. But, I'm sure you knew that already. Others have to take medication for their plmd. Hopefully, you just going through a bad spell right now.

Take care,
BP

Guest · Post by **Guest** » Thu Sep 08, 2005 3:26 pm

Lori, since up to 5.0 AHI is considered normal even for people without OSA, I would hardly think your AHI increase to 1.8 is a downward trend that is causing you to be tired.

Maybe you should look for other reasons why you might now be feeling like you are in a slump. Doesn't sound like an AHI problem to me.

Sleepless on LI · Post by **Sleepless on LI** » Thu Sep 08, 2005 3:32 pm

Thanks to all for your replies.

I have to say, Guest, I am starting to think you are right. I have been a bit stuffy today and it may be a cold coming on, which always knocks the you-know-what out of me. I just feel totally drained, like before CPAP therapy. And that is scary since I've been so compliant since day one.

I guess I will just hang in there and wait and see how things go. I thought about the PLMD aspect and it probably isn't that at all. I just don't know why I'm up so many times a night and not sleeping. Do we go through these stages even when we've become accustomed to sleeping with the machine and mask? It's a bit disheartening when you are so compliant and then, out of nowhere, feel like you haven't been diagnosed yet.

But you're right that even a 1.8 wouldn't cause me to feel like I'm not getting treatment. The question still remains, what is wakping me up so many times a night? I guess it just gives me that horrible feeling like before, when I never could sleep well, together with not feeling well the rest of the day. It certainly feels like I'm going backwards, actually back to the very beginning.

deltadave · Post by **deltadave** » Thu Sep 08, 2005 3:37 pm

Hi all:
PLMS and OSA are entirely separate entities. A leg movement that is caused by the termination of a respiratory event should not be scored as a PLM, but rather an LM (Limb Movement). The disappearance of PLMS following successful CPAP titration would undoubtedly mean that the PLMS were not PLMS at all, but simply part of an overall body jerk accompanying the respiratory arousal. Actually, PLMS often increase in successful CPAP titration as the body is able to enjoy continuous sleep and the PLMS allowed to come to full fruition.
Since PLMS can be medically treated, it becomes important to be sure to differentiate them from LMs, which can not.
Further, PLMS by themselves are harmless. It is only when they cause arousals (listed in the sleep study as PLMAI, Periodic Limb Movement Arousal Index) that they need to be addressed. Usually we're looking at an index of >5.0 for treatment, and/or certainly, a complaint of excessive daytime sleepiness.
deltadave

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CPAPopedia Keywords Contained In This Post (Click For Definition): Titration, Arousal, CPAP

Fatigue Fighter · Post by **Fatigue Fighter** » Thu Sep 08, 2005 3:48 pm

Hi Lori,

I just feel totally drained, like before CPAP therapy.

Since you started something new (going to an APAP), your tiredness could just be anxiety combined with allergies or, as you say, the start of a cold. I'd give yourself more time before calling the doc.

It's a bit disheartening when you are so compliant and then, out of nowhere, feel like you haven't been diagnosed yet.

I'll say! I know exactly how you feel since I have been dealing with this since day one of treatment (June 3, 2005).

Our bodies are constantly changing, so I would expect that we'll have a string of bad days along with the good. Hang in there, Lori. Tonight is a new night!

FF

Sleepless on LI · Post by **Sleepless on LI** » Thu Sep 08, 2005 3:58 pm

Hang in there, Lori. Tonight is a new night!

I'm hanging...I'm hanging. I just hope I don't choke.

I am so not used to feeling this way anymore that it really makes me remember what pre-CPAP felt like and I don't want to ever go back there again.

Unfortunately, at the PSG, my study report said, regarding PLMD:

There are numerous periodic limb movements throughout the study. These appear to be significantly fragmenting her sleep architecture and efficiency.

I hope these are not what is the cause of arousals all night long again. But why now, out of nowhere? And, by the way, I went back to straight CPAP three nights ago. Two of the three nights had the higher than normal AHI's, which I KNOW are not considered high by standards. But it is possible, since I am so in tune with my body, that I feel the change. This is more than I'm used to being disturbed during the night since getting therapy.

But I guess over the next few days I'll find out if there is some other underlying cause on the horizon. Thanks for your input.

TXKajun · Post by **TXKajun** » Thu Sep 08, 2005 4:05 pm

Lori, just a comment from waaaaayyy out in left field, but have you been watching much of the Katrina disaster coverage? Maybe (and it's a big maybe) your subconscious is kinda in an uproar about that and that's causing you to not sleep well.

Anyway, just a thought.

This therapy WORKS!!!

Fatigue Fighter · Post by **Fatigue Fighter** » Thu Sep 08, 2005 4:22 pm

Oh, I forgot to mention this. If after a few more days/nights, you are still quite fatigued, have your doctor check your blood for low thyroid (hypothyroidism). I understand that this is common with OSA (especially in women). I get mine checked every 6 months.

FF

Sleepless on LI · Post by **Sleepless on LI** » Thu Sep 08, 2005 5:29 pm

TXK,

No, I have been avoiding watching too much of the Katrina disaster. I keep abreast of the latest, but don't over watch every piece that's on. Thanks for the thought. It was a good one, one that most wouldn't have picked up on.

FF,

I will keep the hypothyroidism in mind, but that would be too wonderful as it would mean as soon as they fixed it, I would lose weight faster. Only kidding. Thanks for the heads up on this. I will keep it in mind. Hopefully, I'll start to feel better soon.

ozij · Post by **ozij** » Thu Sep 08, 2005 10:52 pm

I just don't know why I'm up so many times a night and not sleeping

Another (additional) possibility:
What do you mean by "up"? Do you mean lieing there in bed and wondering why you can't sleep? If that's what you mean, then it's beginning to sound like insomnia symptoms.

It happens to me sometimes, for example when I'm very busy thinking of my sleep patterns, changes I made to the machine, "what's it going to look like in the morning, is this morning already" etc.

I've learned to do a number of things if I'm awake, tossing and turning, etc.:
* I get up and go to another room

* While there, I write down the thoughts troubling me - disregarding them always makes my nights worse. Writing them is a way of assuring my unconciuos that they will be taken care of - no need to interrupt my sleep. By the way, you can also try this before you even go to bed at all.

* I decide not to do anything about the results reported by the machine, not even look at them for about a week, since this hyper vigilance about the results is making them into a tremendous issue.

* I do something relaxing, for as long as it takes (it's been know to take an hour and a half or more) until I feel tired enough to go to bed again.

* And if I can't sleep, I'll get up again.

Sleep is a natural process. The aim is to let it happen. Not force, it, not do it, not manage it. Give it the best conditions to happen, and if it doesn't - so be it. Managing and micromanaging sleep doesn't work, since it's the manager in us that has to fall asleep in order for sleep to occur.

O.

deltadave · Post by **deltadave** » Fri Sep 09, 2005 4:41 am

Hi Lori:
Are PLMS and PLMAI listed on the CPAP report? That would "put that issue to bed." (Bet nobody ever used that line before!)
Great summary by ozij. Since this is moving a little towards sleep maintenance and hygiene, let me toss in the "watch out for too much caffeine, or when you drink it" line. One day I grabbed the wrong Pepsi at about 8 PM and was awake for 3 hours after bedtime.
deltadave

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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP

Guest · Post by **Guest** » Fri Sep 09, 2005 5:08 am

Ozij & Dave,

Thanks for your replies. Yes, O, great narrative. Thank you so much.

Here is the good news. Out of sheer desperation last night and my inability to sleep, which, by the way, O, is not me lying there unable to go back to sleep, but rather mutliple awakenings to just wonder what woke me up and right back to sleep, like a tossing and turning...however, as I was saying, out of sheer desperation to get a good night's sleep, I went and readjusted my settings, yes, again, and instead of straight 10 went to 8-12. What a great night. Not even counting the better AHI, even though my snores were high, I feel wonderful already just from last night's rest. Only woke twice the whole night. Haven't slept that well in weeks. I already feel my energy level back, which is amazing. I did, however, use the Tegaderm patch instead of Dr. Sue's device, which even, with the differences in pressure, lowered my leak rate to a 25. I think between the lower pressure and the Tegaderm, and the mask fitting really well last night as I redid all the adjustments before bed, I finally fixed (for now) the problem (phew).

And, Dave, yes, PLMD was listed, as I quoted, on the sleep study report as being responsible for significantly fragmenting my sleep architecture. I will never forget that line.

Have a great day. I'm sure I will...or at least my energy will be back. So if it's not, I'll handle it better .

Sleepless on LI · Post by **Sleepless on LI** » Fri Sep 09, 2005 5:20 am

Guest was me. Sorry...wasn't signed in.

Going backwards

Going backwards

Re: Going backwards

PLMs

One more thing...