CPAP is effective... but now what?

[dianem]

I recently had my second night at the sleep lap and got the results. The CPAP almost completely eliminates my apneas -- AHI 1.4 at a setting of 5; however, I still have severe sleep fragmentation and non-restorative sleep. I still feel awful, maybe slightly improved from before CPAP therapy but it's hard to say because my exhaustion level varies anyway.

My post-CPAP sleep architcture is virtually unchanged from before. Second study results below.

Sleep latency: 9.5 min
Rem latency: 74 min
Sleep efficiency: 88.3%

Wake: 40 min
Stage 1: 35.5 min (9.1%)
Stage 2: 302.5 min (77.5%)
Stage 3: 13.0 min (3.3%)
Stage 4: 0 min (0%)
REM: 39.5 min (10.1%)

The arousal data shows no restless leg activity or bruxism, but under movement arousals, I have:

Movement arousals:
- Spontaneous: Total 113, Index 17.4
- Respiratory: Total 8, Index 1.2
- Leg movement: 4, Index 0.6
Total Movement Arousals:
Periodic EEG arousals: Total 243, Index 37.3
Number of Awakenings: Total 29, Index 4.5

Alpha EEG Rating (1-5): 3

The high "periodic EEG arousals" did not show on the previous test (only 10), although the spontaneous movement arousals were there (Total 151, Index 25). Not sure why, but perhaps the apneas masked something? First study AHI was 14.3 overall, 57.5 supine. (I do typically sleep on my back more than that number would indicate; when I had the first test I was suffering from a shoulder injury and was forcing right-side sleeping as much as possible to aid in healing.)

The interpretation for the second study says: "The sleep EEG showed difficulties in maintaining sleep with changes in sleep architecture consisting of occasional periods of wakefulness, frequent spontaneous arousals, a moderate alpha EEG sleep disorder and a severe periodic EEG sleep disorder (cyclic alternating pattern) with impairment in sleep efficiency."

I'm not sure where to go from here. Basically I have non-restorative sleep. I've looked around online and this kind of profile seems to fit someone with fibromyalgia or chronic pain, which I do not have.

The only advice the doctor gave me was to exercise more. I do not find that particularly helpful. I'm in good shape, a competitive masters athlete, thin, fit, non-smoker, etc. etc.

I'm at a loss of how to improve my sleep from here. I'll continue with CPAP anyway -- my husband says it eliminates my snoring, which is great, and I'm hoping it will help my high blood pressure too -- but there must be something else.

Any similar experiences or advice?

Thanks,
d.

[brain_cloud]

If this was the titration study of your first night on cpap, I wouldn't make so much of it. My titration study looked worse than this and after 3 weeks of cpap I am having good results. If you've been using your machine for some weeks or months now, that's a different story.

[dianem]

I've been using CPAP for 6-8 weeks now and I'm quite comfortable with it now.
d.

[Scarlet834]

If you've been treated a while and are still feeling wretched, if I were in your shoes I would try to find another doctor to discuss this with, as well as continue online research.

Your pressure setting is low compared to most of the ranges that appear on these boards. You don't mention the type of equipment you have, but again in your shoes I'd find my way to one of the recommended data-capable machines to see what's really going on, every night, in my own home. My own sleep studies say treatment took my AHI from a whopping 1.2 to zero without touching my total arousal index (35). In my home significant apneas did register on my equipment, dropping to "normal" only after a later upward pressure adjustment (and more important, I now feel pretty darn good). I believe you'll be better able to understand next steps if you can get to your nightly data.

Next, you might read up on the standard sleep hygiene recommendations. I got the exercise recommendation from my doctor too, by the way, but I'm much less fit than you are. What I notice about exercise recommendations is timing, not too close to bedtime, later in the day seeming better than early morning with respect to inducing sound sleep. Also exposure to light during the day. Anyway, recommendations that typically go to individuals with insomnia might have an impact on any non-OSA sleep issues you have.

Finally, my primary care physician started treating me for acid reflux not because of overt symptoms, but because it has the possibility of disturbing sleep without the individual realizing that was the cause or feeling symptoms in the day. So, I'll throw it out there. (I still don't think I have GERD, but I'm taking acid blockers at the moment and sleeping on a wedge pillow to elevate my upper body, as instructed. I'm just as positive about the GERD as I originally was about not having sleep apnea )

I wish you well. I'm sure more suggestions will be coming.

[dianem]

Hmm, GERD is an interesting thought. I do get reflux from time to time but generally it's because I've done something stupid (e.g. eating or drinking far too much, or something I'm sensitive to, within a couple of hours of bedtime). I have about 3 weeks of Nexium on hand from when I was taking a strong antibiotic, so perhaps I will give that a try. (A wedge pillow would be a problem since I prefer to sleep on my side. Throws my back out of whack.)

I have a rental setup right now, going to purchase tomorrow. It's the M Series Pro C-Flex with humidifier and Mirage Swift LT. How/where do I buy a smartcard reader? I presume that the place that sells me the CPAP will not provide it, since they want me to come back to them for analysis...

Thanks,
d.

[Scarlet834]

I've only had the wedge pillow a few days now and the jury is still out on sleep comfort. But I want to be able to say I have given my doctor's instructions every chance. He wanted me to elevate the head of my bed--but I have a waterbed.

I bought my smart card reader on CPAP.com (the brand is INFINEER). I believe there are more cost-effective sources if you search the forum or on-line. I'd just wanted to support the site where I've found so much help. You can search the word "encore" on CPCP.com to find the card reader and viewer software.

[dianem]

I've used a wedge and slept otherwise propped up in the past when I've had upper respiratory infections. It just doesn't work for me, unfortunately.

I do see that CPAP.com ships outside the US, which is great. I'll look into it for the software.

As for the rest, well, who knows. My husband is a neuroscientist and former medical researcher-- so the up-side is that he can read and understand all the scientific studies on the EEG stuff. (The down-side is that he's suggesting making a home EEG monitor so he can track my progress <@@>).

d.

[jweeks]

I've only had the wedge pillow a few days now and the jury is still out on sleep comfort. But I want to be able to say I have given my doctor's instructions every chance. He wanted me to elevate the head of my bed--but I have a waterbed.

Hi,

My sleep doctor asked me to try a wedge during one of my sleep studies. It seemed to help quite a bit in combination with sleeping on my side. Since then, I have found that simply keeping my neck in line with my spine is enough. To accomplish this, I use one pillow under my shoulder to elevate my upper body just a bit, then 2 more to raise my head up enough to keep my neck straight. It is more comfortable than the wedge, and I still see the same kind of event numbers either way.

-john-

[kteague]

Hi and welcome. It took me a minute to sort out which parts of your test results were from the report and which were your commentaries, but I think I've got it straight. Please correct me if I'm wrong.

#1 The report did not literally say you did NOT have any restless leg activity, it just did not say that you did, right? I would want to specifically ask the doctor if the data regarding the arousals could be indicative of Periodic Limb Movement Disorder, and if not, to explain in detail why not. One reason I'm asking is that your titration showed the ability to get 39.5 min of REM sleep and only 13 min of Stage 3/4 (Deep) Sleep. PLMD generally compromises deep sleep more so than REM.

#2 "...perhaps the apneas masked something?" Good point. Having a diagnostic study not show movement arousals then having the titration show movement arousals is also a characteristic of PLMD. When OSA and PLMD coexist, they can vie for prominence, and whichever causes the arousal first wins. On CPAP, with apneas not causing arousals, there can then be enough sleep to give the movements opportunity to fully express themselves. (My diagnosis was the reverse of this - PLMD was seen first. Treated it then OSA showed. Same principle.)

#3 "... but there must be something else." Do keep in mind that IF it should be determined that you do have PLMD, treating it could then allow more apneas to manifest. You may even end up needing more pressure if they didn't capture your worst case scenario. Glad you'll have a data capable machine to keep an eye out for that.

I am not a medical professional, just someone with a dual diagnosis speaking from my own experiences. Surely there's any number of other causes for your specifics, just throwing out one to consider. It may be that the EEG technicalities (which I have NO knowedge of) totally blow my suspicions out of the water. If so, hope you do get answers though. I'm wondering what yur husband says about your movements. If he would describe them or record them, the answer might become more apparent.

Best wishes.

Kathy

[dianem]

Thanks for all the info!

#1 The report did not literally say you did NOT have any restless leg activity, it just did not say that you did, right? I would want to specifically ask the doctor if the data regarding the arousals could be indicative of Periodic Limb Movement Disorder, and if not, to explain in detail why not. One reason I'm asking is that your titration showed the ability to get 39.5 min of REM sleep and only 13 min of Stage 3/4 (Deep) Sleep. PLMD generally compromises deep sleep more so than REM.

I'm going to set off the actual report info this time. Both reports, first and second, stated:
------------------------
PLM Events/hr:
- Total: 0.0
- NREM: 0.0
- REM: 0.0
Restless Leg Activity: No
-------------------------------
For some reason there is a summary noted under "movement arousals" that is separate from the PLM Events data, and they list the EEG arousals there. This I do not understand, since EEG arousals do not equal movement arousals, but it's not PLMD.

#2 "...perhaps the apneas masked something?" Good point. Having a diagnostic study not show movement arousals then having the titration show movement arousals is also a characteristic of PLMD. When OSA and PLMD coexist, they can vie for prominence, and whichever causes the arousal first wins. On CPAP, with apneas not causing arousals, there can then be enough sleep to give the movements opportunity to fully express themselves. (My diagnosis was the reverse of this - PLMD was seen first. Treated it then OSA showed. Same principle.)

#3 "... but there must be something else." Do keep in mind that IF it should be determined that you do have PLMD, treating it could then allow more apneas to manifest. You may even end up needing more pressure if they didn't capture your worst case scenario. Glad you'll have a data capable machine to keep an eye out for that.

It was the Periodic EEG arousals that turned up on the second study, not leg movement arousals. They were minimal on the first study.

So what I have is unclear, and I am not really sure how to proceed, given that the only advice from the doctor is exercise. Sure, I seem to sleep better if I've spent 8 hours hiking. But a flat out 2-hour swimming practice doesn't seem to improve my sleep, and I can't imagine doing more than that on a routine basis. Life does tend to get in the way!

I'll try picking away at other things -- allergens, food and drink, and so on -- and see if I can make some incremental improvements. That's all I can do at this point, I think.

Thanks for your help!

d.

[Muse-Inc]

If I were in your situation, I would have a good long chat with my doc, whichever one shows the most likelihood to spend some time explaining your sleep study results and helping you chart a course of resolution. First, use CPAP therapy to eliminate as many apneas & hypopneas as possible and get as much restful sleep as is possible; with events reduced some arousals will be eliminated. If they recommend exercise, ask how much; do it to see if it helps. Then, figure out what the next step is. Sleep disturbed breathing is one "thing" but you have more complicating your journey to getting restful sleep. You will have to be captain of the journey and get some into from your medical consultants (doctors) to plot a reasonable course. One thing at time, one step at a time; remember the quote (which I'm probably mangling ) The journey of 1000 steps begins with one step.

I had a sizeable number of arousals and terrible numbers in my sleep study, but I didn't sleep very well or very long (65 mns in the first part) with no REM sleep. I have slowly improved all aspects of my sleep hygiene and every improvement translated to better sleep. Perhaps the best was covering all light sources and LEDs...I am apparently very sensitive to light. I now respect my night owl-ness and need for 8 hrs of sleep. This has all helped me achieve more restful sleep; it's no simple walk in the park to get it. Good luck; keep us posted, lots here have more than just SDB complicating their journey to restful sleep.

[peppi]

I also have a shoulder injury actually a Titanium shoulder from bones that snapped when I contracted Tetanus back in 95.
I do notice if I take one Alleve in the evening before bedtime I get a better nights sleep.
This is due to the pain in my shoulder waking me up when I move in my sleep.
So try that and see if it helps.

Also, if you are taking vitamins, try stopping for a week or so. This caused RLM for me with 67 leg events/ hour in my tests.
I now take a 1/2 dose of GNC for men.

Good luck!

Phil

[dianem]

If I were in your situation, I would have a good long chat with my doc, whichever one shows the most likelihood to spend some time explaining your sleep study results and helping you chart a course of resolution. First, use CPAP therapy to eliminate as many apneas & hypopneas as possible and get as much restful sleep as is possible; with events reduced some arousals will be eliminated. If they recommend exercise, ask how much; do it to see if it helps.

Yes, the strange thing is that the doctor at the sleep lab asked me how much exercise I get, I told her (team workout for 2 - 2.5 hours once or twice a week, yoga once a week, 20 minutes brisk walking home from work two or three times a week) and her response indicated to me that she thought that was pretty good already... but she had nothing else to offer so exercise was it. She didn't even mention that my sleep architecture and overall arousal levels were unchanged, just told me that the apneas were under control; I wouldn't have known if I hadn't asked for a copy of the report as I left. So I think she's kind of an idiot.

There is one other doctor at the sleep lab, perhaps I can try to do an end-run around doc #1 and get an appt with him at some point instead.

The only information we can find about the EEG arousals is that they are typical of someone with a chronic pain condition. But I think I'd have noticed if I had chronic pain!

(Peppi, I had a separated shoulder, but it's all healed now. Hope I do not fall on it again -- when I'm really exhausted I tend to just go down from time to time and find myself staring up at the sky. I've gotten pretty good at rolling to avoid injury, but that one time I was carrying too many bags to manage the fall and landed really hard on the shoulder. Ow.)

[secret agent girl]

.

[dianem]

Could (peri)-menopause be a factor?

A good question, but probably not. My doctor considered that before sending me for the sleep tests, but I have no symptoms. In fact, if family history is anything to go by, my perimenopause is likely to begin very late and go on for ages. (Oh joy.)