UARS, low numbers bad sleep, MMA, now on CPAP

[49er]

Jay and Patrissimo,

Unfortunately, I have been unable to replicate what happened the day I felt I was on my way to great sleep. I am now keeping a sleep diary which I should have done months ago.

Interestingly, I raised my dose to 3500 IUs and feel I had decent sleep last night off of the machine as I easily got back to sleep with one wakeup by taking a mag/cal pill. And I took all of it in the am.

Yes, I know I need to use the machine and I am working on it. And yes, I know that vitamin D isn't a cure for sleep apnea.

Patrissimo, I don't mean to sound insulting but are you keeping a diary of everything? As I mentioned in the "change pressure" thread, I should have done this months ago and now that I am, it is really helpful

Anyway, even though I had previously mentioned that I felt straight cpap pressure was best for me, I have noticed recently, that I am starting to find it very uncomfortable. So I am going to run a wide open range tonight from 4-20 to see if maybe I can run a lower pressure than 8.5 and feel comfortable with a decent AHI.

If not, then I will try the ramp feature which I have never used.

49er

Just to interject a couple things. I, too, found Vitamin D taken earlier in the day seemed to be promote deeper, more restful sleep than when it was taken later. To me, this makes sense. Afterall, we would normally get our Vitamin D indirectly from sunlight, which is obviously stronger at mid-day. I also found, through experimentation, that changes in Vitamin D dosages resulted in short term changes in the quality of sleep. Both increases and decreases would be disruptive. Overall, it seemed that some Vitamin D supplementation was beneficial so I decided to supplement with an amount that would hold my serum level at about 60. I now take 2000 IU daily.
The other thing is that I also found CPAP to be more comfortable and just as effective as APAP. I used APAP for titration, switched to CPAP, and gradually lowered the pressure in steps while maintaining the same AHI. I started with an APAP pressure of 10 and I am now at a CPAP pressure of 8. Same AHI - around 2.
J

[49er]

Given that I wake up fully many times a night, perhaps my consolidation is very poor.

Patrissimo, I know this is contrary to most sleep hygiene advice but when I wake up prematurely from using the machine, I am starting to write exactly what was going on in the computer. Otherwise, I totally forget in the am.

Might doing something like that be useful to you or not?

49er

[Jay Aitchsee]

Interestingly, I raised my dose to 3500 IUs

I found, as I noted earlier, changes in Vitamin D did affect my sleep, often short term. I started at 5000 IU and I'm now at 2000. I strongly suggest you get your blood tested for your level of D3. There is some agreement that a level of 50-80 is optimal. Too high can cause sleep disturbances as well as too low. You can have it tested for about $50 without insurance. Google "Walk In Lab" for an easy way to get blood work done - may not be available in your area.

I am now keeping a sleep diary which I should have done months ago.

Absolutely essential! Not only night time, but more importantly daytime events as well, like exercise, supplements, drugs, etc.

Jay

[SleepingUgly]

Most of the knowledgeable people here are not fans of the wide open range (e.g., 4-20). The machine tends to deliver too low a pressure when you have a wide open range like that. Someone else can explain it better.

The computer emits light that disturbs circadian rhythms, and just getting up and doing stuff will interrupt the night. I can't imagine what kind of information would be worth not being able to go back to sleep. 49er, what kind of stuff are you writing down in the night?

[49er]

Interestingly, I raised my dose to 3500 IUs

I found, as I noted earlier, changes in Vitamin D did affect my sleep, often short term. I started at 5000 IU and I'm now at 2000. I strongly suggest you get your blood tested for your level of D3. There is some agreement that a level of 50-80 is optimal. Too high can cause sleep disturbances as well as too low. You can have it tested for about $50 without insurance. Google "Walk In Lab" for an easy way to get blood work done - may not be available in your area.

I am now keeping a sleep diary which I should have done months ago.

Absolutely essential! Not only night time, but more importantly daytime events as well, like exercise, supplements, drugs, etc.

Jay

Hi Jay,

You're absolutely right and I am trying to make sure I include them. Interestingly, whether I exercise or not seems to have little relation to how well I sleep so I am not as prone to record that.

But there could be something I am missing so I will try to start doing that.

49er

[49er]

Most of the knowledgeable people here are not fans of the wide open range (e.g., 4-20). The machine tends to deliver too low a pressure when you have a wide open range like that. Someone else can explain it better.

The computer emits light that disturbs circadian rhythms, and just getting up and doing stuff will interrupt the night. I can't imagine what kind of information would be worth not being able to go back to sleep. 49er, what kind of stuff are you writing down in the night?

Good points SU.

I have an update since I wrote my initial post justifying using a range. After reviewing my data and seeing a 5-20 range clearly didn't work in helping me stay asleep, I am going to back to the 8.5 pressure that almost gave me great sleep last week. It could have been a total fluke but gotto go with the hot hand.

Anyway, because starting with that is now extremely intolerable, I will use the ramp feature for the first time ever at a pressure of 5 for 15 minutes. Stay tuned.

During the nights I had fragmented sleep on the machine meaning I would wake up and be able to get back to sleep in by staying in bed and waiting for a few minutes, I still felt horrible. So actually taking the time to write things down for me will not make things worse.

Also, by capturing what is going on immediately, it really anchors my memory as to what is going on. If I wait until morning, I don't have as great a picture due to my faulty recall.

Last week, because of my problems in staying awake after dinner to the point of feeling comatose and drugged, I decided to take public transportation to the nearby city and take a nearly 2.5 hour outside walk. I still went to bed early but at least I didn't fall asleep prematurely.

I woke up after 3 hours at a straight cpap pressure of 8.5 feeling like I was having a hypoglycemic attack and adrenaline rushes. Writing it down at the moment greatly captured what was going on. By the way, haven't had that since that day but have dealt with other issues.

49er

[blueh2o]

In my experience, Provigil doesn't kick in terribly rapidly (maybe in an hour for me). Maybe you could stay up without going back to sleep if you took caffeine and Provigil immediately upon awakening, with the caffeine helping until the Provigil kicks in?

Just from a straight sleep hygiene standpoint, I'd suggest staying away from both as much as possible. I don't drink coffee (easy for me to say as I never have), and I tried Provigil a few time but it made me feel worse. So, maybe for me staying away from those two things are easier than it would be for others.
As you know, I'm a fan of the sleep restriction, even if not the most extreme hours (7-7.5/night but EVERY night). I'm just now starting to loosen that up to see if another 1/2 hour of time in bed will help. I don't see ever going back above 8.5 hrs/night of time in bed knowing the potential consequences to sleep consolidation.

[patrissimo]

Hey all, an update since it has been a few weeks. I wrapped up a contract a couple weeks ago, and am taking some time to focus on my health, house, paperwork backlog, etc. before applying for jobs. I have submitted a full application packet to Dr. Krakow for a virtual consult, where I will request a titration study on BiPap & ASV at his sleep center, as well as ask his advice on reducing my insomnia and otherwise debugging my stubborn fatigue. Here's how my treatment has been going:

- My AHI has continued to drop, averaging 2-3 in the first couple weeks, down to 1-2 for about 5 weeks, and now 0-1 for the last 2 weeks! Unfortunately my Flow Limitation numbers are usually pretty bad, with 95% of 0.15 - 0.35 (little trend I can see, except association with certain types of sleeping pills that likely relax muscles), and spikes above 0.6 & 0.7 on bad nights. My FL appears to be higher when my min pressure is higher, which is odd. I just discovered that it is significantly lower when I tape my mouth (under my full-face mask), so I will start doing that more regularly.
- My daytime fatigue has had some ups and downs, but there's still no trend over the course of my treatment. I continue to wake up 4-6x most nights.
- I have been having problems with aerophagia that started just a couple weeks ago, at pressures I had been tolerating fine. On several nights, the pain woke me up, and once I felt nauseous, had a dream about barfing, and woke up almost retching (never happened before). Mostly it's just uncomfortable. I've backed off on my max pressure (11-12, vs experimenting in the 12-14 range before), and am doing a mn pressure of 8-9 and a max of 11-12. Unfortunately, at this pressures my machine is at max pressure most of the time except the ramp - my median pressure is almost always within 0.1 - 0.4mm of my 95% & max. So the machine wants to give me more pressure (to reduce flow limitation), but I'm blocked by the aerophagia. I have read up on reducing it a little here, but not a lot, it seems quite hard to do.
- During the past few months, I've often gone back to bed after my partner left for work, because I'm so tired, even though I just doze crappily (w/ xPAP). I have been trying not to do this lately, as a form of mild sleep restriction. In the 2nd half of Jan, I got up & stayed up 4/ 10 weekday mornings. 1st half of Feb, 5/10. 2nd half, 7/9. Getting better!
- My doc had me try sonata & lunesta. As with my prev experience w/ these and ambien, while they are great for knocking me out without a morning hangover, and better than not sleeping (or fretting about not sleeping), they consistently give me noticeably less refreshing sleep. I can feel it the next day - I'm crankier, for example. Sleeping pills are not the answer for me, I'm continuing to work on eliminating them.
- My Zeo Deep + REM sleep has fluctuated quite a bit, usually it's 40%-50%, but it can be as low as 19%. It seems to be higher with more time on the cpap, and with a higher minimum pressure, nothing else statistically significant, or jumping out at me as causing the low days, unfortunately.

So I'm waiting on my Krakow consult, working on mild sleep restriction (getting up and staying up on weekdays), using the lowest doses of sleeping pills in many years, and working through Krakow's book to see if I can improve my ability to fall asleep & stay asleep w/o pills. I'm not feeling any less tired, but I know that my sleep is better with CPAP.

[49er]

My doc had me try sonata & lunesta. As with my prev experience w/ these and ambien, while they are great for knocking me out without a morning hangover, and better than not sleeping (or fretting about not sleeping), they consistently give me noticeably less refreshing sleep. I can feel it the next day - I'm crankier, for example. Sleeping pills are not the answer for me, I'm continuing to work on eliminating them.

I totally agree. I intend to ask my sleep doctor for a prescription to take on an PRN basis, mainly for when I wake up and can't get back to sleep.

But I see it as a totally band aid short term solution and will continue to push my sleep doctor for answers.

Good for you for knowing they aren't the answer.

So I'm waiting on my Krakow consult, working on mild sleep restriction (getting up and staying up on weekdays), using the lowest doses of sleeping pills in many years, and working through Krakow's book to see if I can improve my ability to fall asleep & stay asleep w/o pills. I'm not feeling any less tired, but I know that my sleep is better with CPAP

.

I will be interested in hearing how that turns out. I can't remember where I heard him say this but I thought he said that if someone continues to have insomnia from cpap treatment, the therapy is not optimized. Sadly, he seems to be the only sleep medicine doctor who feels that way.

49er

[NotLazyJustTired]

Patrissimo,

I have read your entire thread with great interest. It seems we may be on a similar path with UARS. I have not had any surgeries (other than tonsilectemy and adenoidectemy as a child), but my sleep study showed only AHI of 1.8 but an RDI of 40.1. There were 137 sleep stage transitions in 5.4 hours of sleep with 43 awakenings after sleep onset. The sleep stage architecture is broken down as:
N1 15.3%
N2 70.0%
N3 0.2%
R 14.6%

I am told that it is the high occurrences of the RERAs that are fragmenting my sleep and causing EDS. This is evident from the high number of transitions and the particularly low time spent in N3 and to a lesser extent REM. I am intrigued by the Zeo and your empirical studies merging the data with SH data and looking for correlations. This kind of analysis appeals to me also. I may look into getting a Zeo, but I am a little cash deprived since I am paying for my S9 out of pocket. Other than the architecture report, does the Zeo provide any other data to show sleep fragmentation (like stage transitions, for example)?

I have only been on the APAP for less than a week, but my SH graphs look a lot like those you posted on another thread. My 95% FL numbers are ranging from .09 to .14 and I do see peaks hitting as high as .50 on occasion. My 95% pressure reading thus far is 7.76. It does look like my snoring is cured (yippie) and I think that is why my pressure isn't climbing very high on the APAP, but the FLs remain.

My doc prescribed a wide range from 5 to 15 presumably to help dial in a titration since my insurance will not cover a titration study with a UARS diagnosis (sucks out loud). I am a little bummed to hear you say that raising your minimum pressure did not knock down the FLs. I was thinking of attempting that after a couple weeks of adapting to the mask/machine. I will probably give this a try anyway and perhaps even move to CPAP mode as well.

I will be interested to hear what Dr. Krakow recommends for you. I hope I don't need the BiPAP/ASV after shelling out for the APAP, but we do what we need to do, no?

[SleepingUgly]

FYI, I think Zeo went out of business, so I wouldn't recommend buying a Zeo.

[NotLazyJustTired]

Thanks for that. I have started a new thread to query for alternatives.

[patrissimo]

Just a brief update:

- I haven't been able to spend as much time on my sleep (or here), due to personal & professional projects.
- I continue to feel that the APAP helps noticeably but not enormously, been using it almost 6 months now. I got lazy after the first few months, when I was feeling a little less tired, and went from 7 hrs/night average to 5.5. But during this period I was also spending less time in bed, not going back to bed until noon as often, which also decreases APAP usage.
- My sleep quality is still fairly low, though better than before APAP. I dream more on APAP, I still wake up several times every night, but I feel panicked w/ a racing heart much less often on awakening. I tracked my flow limitations & breath waveforms through Sleepyhead for the first few months, and it definitely looks like abnormal breathing, presumably UARS.
- I have not been able to get off the FFM, though I've tried nasal masks & pillows a few times, my mouth opens and it disrupts my sleep. The FFM is bulky and I would like to get on nasal eventually.
- I don't have any major xPAP-related problems like rainout, face sores (I get some red chafing on my nose but it's ok), leaks, etc. that need troubleshooting or would prevent my PAP therapy from working. The only exception is aerophagia at higher pressures.
- I've given up tinkering with pressure; I get uncomfortable aerophagia at 12-13 which I don't know how to treat other than by not raising the pressure.
- I am still very tired very often, not as bad as my low in Jan/Feb, and with less time in bed, but still not a sustainable level of energy for someone who needs to work & care for two kids.
- I got off benzos early this year, but quickly switched to Ambien, despite a few successful nights sleeping with very little pills as the benzos tapered off. Historically Ambien has had significant negative impact on my sleep quality, and it still feels like that. I have a variety of reasons for still using it, some good, some bad. Reducing or eliminating this is a clear area for potential sleep quality improvement.
- I still experience sleep onset insomnia, middle of night waking, and awakening early. I would like to do sleep restriction therapy to improve this, but am concerned about SRT when my SDB is not completely treated, and when my body is unbalanced enough to react to sleep deprivation with evening adrenaline/cortisol, feeling "tired & wired" rather than sleeping more solidly. It's a chicken-and-egg thing, SRT could potentially improve my sleep quality & get me off sleeping pills, but I am scared to try it when my body is so messed up.
- I am talking w/ Dr. Krakow's clinic about flying out to do a titration study of BiPap/ASV. Due to the altitude, they prefer people come out for a few days, but I don't know that I can do that.
- I am trying to reduce my evening food, since I get reflux, nasal congestion, and flow limitation that are likely exacerbated by late calories. It is hard because for 5+ years I have eaten most of my calories in the evening, and my body is very used to that pattern.

My hope is that BiPap/ASV will help significantly, and with that improvement I can taper off the sleeping pills while doing SRT, and get to decent sleep. If the fancier machines don't help significantly, I will try the taper/SRT anyway, though less optimistically. It's been a long & frustrating process, and I really wish I had prioritized it many years ago when I had more time, money, and energy, rather than having occasional surgeries, drinking lots of caffeine, and trying to just power through my life despite poor recuperation.

[49er]

Hi Patrissimo,

Thanks for checking in as I was wondering how you were doing. I am so sorry you are still struggling.

If you visit Dr. Krakow, please let us know what happens. I hope you have nothing but a positive experience if you decide to go through with it.

49er

Just a brief update:

- I haven't been able to spend as much time on my sleep (or here), due to personal & professional projects.
- I continue to feel that the APAP helps noticeably but not enormously, been using it almost 6 months now. I got lazy after the first few months, when I was feeling a little less tired, and went from 7 hrs/night average to 5.5. But during this period I was also spending less time in bed, not going back to bed until noon as often, which also decreases APAP usage.
- My sleep quality is still fairly low, though better than before APAP. I dream more on APAP, I still wake up several times every night, but I feel panicked w/ a racing heart much less often on awakening. I tracked my flow limitations & breath waveforms through Sleepyhead for the first few months, and it definitely looks like abnormal breathing, presumably UARS.
- I have not been able to get off the FFM, though I've tried nasal masks & pillows a few times, my mouth opens and it disrupts my sleep. The FFM is bulky and I would like to get on nasal eventually.
- I don't have any major xPAP-related problems like rainout, face sores (I get some red chafing on my nose but it's ok), leaks, etc. that need troubleshooting or would prevent my PAP therapy from working. The only exception is aerophagia at higher pressures.
- I've given up tinkering with pressure; I get uncomfortable aerophagia at 12-13 which I don't know how to treat other than by not raising the pressure.
- I am still very tired very often, not as bad as my low in Jan/Feb, and with less time in bed, but still not a sustainable level of energy for someone who needs to work & care for two kids.
- I got off benzos early this year, but quickly switched to Ambien, despite a few successful nights sleeping with very little pills as the benzos tapered off. Historically Ambien has had significant negative impact on my sleep quality, and it still feels like that. I have a variety of reasons for still using it, some good, some bad. Reducing or eliminating this is a clear area for potential sleep quality improvement.
- I still experience sleep onset insomnia, middle of night waking, and awakening early. I would like to do sleep restriction therapy to improve this, but am concerned about SRT when my SDB is not completely treated, and when my body is unbalanced enough to react to sleep deprivation with evening adrenaline/cortisol, feeling "tired & wired" rather than sleeping more solidly. It's a chicken-and-egg thing, SRT could potentially improve my sleep quality & get me off sleeping pills, but I am scared to try it when my body is so messed up.
- I am talking w/ Dr. Krakow's clinic about flying out to do a titration study of BiPap/ASV. Due to the altitude, they prefer people come out for a few days, but I don't know that I can do that.
- I am trying to reduce my evening food, since I get reflux, nasal congestion, and flow limitation that are likely exacerbated by late calories. It is hard because for 5+ years I have eaten most of my calories in the evening, and my body is very used to that pattern.

My hope is that BiPap/ASV will help significantly, and with that improvement I can taper off the sleeping pills while doing SRT, and get to decent sleep. If the fancier machines don't help significantly, I will try the taper/SRT anyway, though less optimistically. It's been a long & frustrating process, and I really wish I had prioritized it many years ago when I had more time, money, and energy, rather than having occasional surgeries, drinking lots of caffeine, and trying to just power through my life despite poor recuperation.

[Better]

Just a brief update:

- I haven't been able to spend as much time on my sleep (or here), due to personal & professional projects.

Hi Patrissimo,

WOW.

Your first post in this thread and your experience reads so similar to mine it is scary. I have UARS with a majority of RERAS (my RDI=11=AHI+RERA=3+8). CPAP saved my life but it was a two edged sword. I couldn't tolerate the following things about it which I solved in other ways.

1. The Gastric Insufflation (initially I thought it was aerophagia, but there is a difference). At the pressure I need to reduce my FLs (at least 10cmH2O+, it was counter productive as my sleep was getting way too disturbed to be effective.
2. The Autoset/APAP algorithm which would wake me up as it tried autosetting.

So here is what I found has worked in lieu of APAP/CPAP:
In order to get a refreshing sleep I have opted for the following things in order of discovery:

1. Nasal Saline rinse to clean out mucus from nose each night before bed
2. Nasal dilating strips (Breath Right)
3. AveoTSD device to hold my tongue forward preventing it occluding my airway (this offers the BIGGEST benefit). Dental splints still let your tongue fall back.
4. Oxymetazoline (Afrin) nasal spray in each nostril at night (I know the long the side effects which is why I want the turbinoplasty done, and the massive benefits for me outweigh the risks right now)

The first ENT I saw wanted to do many procedures on me so I am getting a second consult, and at this point I anticipate getting at least a turbinoplasty and septoplasty to get off the Afrin, strips and rinse.
I also use a Zeo (mobile) which I willingly bought after they went bust as I thought it was SUCH a great product. It is incredible to be able to sleep so well after not sleeping deeply for more than 20 years. My nocturia has totally gone (you mention it a lot). I had tried benzos, Ambien, Melatonin, Paxil plus 6 other ADs (separately of course !), Valerian, Tryptophan, Magnesium, Calcium, GABA, etc etc and the only thing which worked and restored me to a sense of normality was Paxil as it really reduced the amount of adrenaline/cortisol in my body which let me fall back to sleep faster after the many arousals (one every 5-6 minutes !!). sleep maintenance insomnia and early wakening were all part of my symptoms and a hypersensitive nervous system give one that as my body is too much on high alert to relax instead it wants to guard against the next possibility of being unable to breath ! (I can't fault its logic - whereby it knows that it is better to be awake and breathing than asleep and not breathing !)

regards
Peter