CPAPtalk.com

I'm not posting to convince people that are happy with CPAP to change their therapy. I'm posting because I know there's a lot of people like me that have a lot of trouble getting that therapy to work well for them.

I've been on the Dr. Gominak plan for just under 90 days now. I sleep 7-8 hours a night without interruption & that started within a week of starting this therapy. I have had an awful experience with CPAP (very expensive, become WIDE awake 2-3 times a night, get blamed by the sleep professionals for the poor results I'm getting).

The reason I'm typing this at 4 a.m. is that I spent another $170 on a new mask & couldn't return to sleep after the third time I woke up. I still keep trying to fix my problems with CPAP therapy because I have put over $5,000 into it and just don't want to write that off. However, I think I'm done with it now.

Update:

I had expectations that the Oura ring would answer my questions about my sleep cycles and also provide me a way to download the data for additional study. The Oura ring does some of this, but like everything else there are limitations.

One thing I am totally excited about is that I now have a handle on my monthly temperature cycles... Not sure what I am going to do with that.

My sleep cycle graphs indicate that my amount of REM sleep is a little short. The problem is that I don't know if this information is anywhere near accurate.

As a check I installed the Sleepscore App to compare results. On my particular phone this was a major pain in the backside. If you can get it to work, it looks good, but I had issues starting from filling out the initial personal information, on to freezing up after a night of monitoring, and then some nights it recorded nothing even though it was running.

You would think ResMed could do a little better...

I finally un-installed it.

I was able to get a few nights worth of data and it was very similar to the data recorded from the Oura ring. I doubt if either is totally accurate but at least I have some data to go on.

My pattern is showing that I have basically no REM sleep during the first couple of sleep cycles. In the morning I finally move from deep and light sleep to REM sleep. I don't know what to make of this but am working on it.

My shortest period of REM sleep was 1 minute followed 4 nights later by 5 minutes...

Overall I am getting about 8 hours of sleep a night. About 1:10 in Rem, 1:30 in Deep, and the rest in Light.

I am still on my B supplements on M W F and still remain pain free upon wakening. I think this may be optimal for me.

HoseCrusher,

I just found this thread. A year ago, I started the same vitamin D protocol. I am very interested to see how things go for you. I have been trying to find others that have done it to see if they have any improvements. It will be interesting to see your progress.

Here's what folks had to say about Dr Gominak's theories in a thread from 2011:
viewtopic/t69331/Low-Vitamin-D-level-ap ... apnea.html

Personally, I give some credit to better sleep, after correcting SDB, to raising my Vitamin D3 level from 30 to 60 by taking daily morning 2000IU doses. In addition to D3, I also take magnesium glycinate, 200Mg morning and evening, which seems to calm my PLMD.

Overall, I give major credit to obtaining restful, restorative sleep, after correcting SDB, to the strict adherence to the principles of good sleep hygiene (which include testing for deficiencies and supplementing as necessary).

From the referenced thread:

Jay Aitchsee wrote: ↑

Thu Dec 27, 2012 3:22 pm

Lazer, when I had my D3 checked, it was around 30. I started taking 2 X 2000 IU gelcaps daily (4000 total) for 3 months; afterwhich, I had it checked again and it had risen to around 60. Then I dropped back to 1 gelcap daily (2000 IU) and have continued with 2000 since, getting tested about every 3 months. After more than a year, my level has stayed just about 60. Now, after more than a year, my deep sleep has improved as well as my daytime fatigue. However, I can not attribute that strictly to D3. During the year, I also worked very hard at improving my AHI and sleep hygiene as well as making sure other factors, like B12, were optimized. In the beginning though, there did seem to be a very high correlation between taking D3 and increased deep sleep as measured by Zeo.

BTW, there are a couple of posts in the thread which suggest that higher serum D3 levels, over 80ng/ml, could cause disturbed sleep. IMO, anytime supplements are taken, results should be monitored by periodic testing to see that optimal levels are maintained.

Jay Aitchsee wrote: ↑

Wed May 08, 2019 6:00 am

IMO, anytime supplements are taken, results should be monitored by periodic testing to see that optimal levels are maintained.

Unfortunately, blood tests for serum ferritin (iron) levels are not indicative of ferritin levels in the brain. A patient can have normal serum ferritin levels with iron deficiency in the brain. An MRI is required to evaluate brain levels of iron. https://jnnp.bmj.com/content/76/7/1009

Whether the same is true for Vit D3, I do not know.

ChicagoGranny wrote: ↑

Wed May 08, 2019 8:54 am

Jay Aitchsee wrote: ↑

Wed May 08, 2019 6:00 am

IMO, anytime supplements are taken, results should be monitored by periodic testing to see that optimal levels are maintained.

Unfortunately, blood tests for serum ferritin (iron) levels are not indicative of ferritin levels in the brain. A patient can have normal serum ferritin levels with iron deficiency in the brain. An MRI is required to evaluate brain levels of iron. https://jnnp.bmj.com/content/76/7/1009

Whether the same is true for Vit D3, I do not know.

I believe the effective level of magnesium is also difficult to ascertain solely by blood test as well. I think serum level tests of D3 are reliable.
My comment regarding testing was primarily aimed at those that take mega doses of this or that without any real basis.

Jay Aitchsee wrote: ↑

Wed May 08, 2019 10:49 am

those that take mega doses of this or that without any real basis.

Yep.

Jay Aitchsee, you mention in that old vitamin D thread you got your levels up to a good range. Have you maintained them all these years or do you not test them anymore? Do you think raising the level has been effective in improving your sleep?

tyrone747 wrote: ↑

Thu May 09, 2019 7:32 am

Jay Aitchsee, you mention in that old vitamin D thread you got your levels up to a good range. Have you maintained them all these years or do you not test them anymore? Do you think raising the level has been effective in improving your sleep?

Yes, based on my studies, I consider a "good" Vitamin D serum level to be 50-60ng/ml, which I try to maintain. One source of information is the Vitamin D Council

To ensure that level is maintained, I continue to test semi-annually. I'm on Medicare and the test is covered. I was originally diagnosed in 2011 as Vitamin D deficient with a level below 30. My last test result, last month, was 58ng/ml. I started supplementing in 2011 with 4000IU daily, testing quarterly. When my level rose to 50+ in 2012, I reduced the dosage to 2000IU and continued to test quarterly. Continued testing reveled a stable level of 50-60ng/ml with 2000IU dosing and I reduced the testing interval to semiannually.

My first polysomnogram (PSG) in 2006 reported Deep Sleep (AKA SWS, Delta Sleep, Stage 3-4 sleep) to be 3.1%. Deep Sleep tends to drop off with age, but something around 20% would be considered optimal. My last PSG in 2014 reported my Deep Sleep at 16.7%, good for my age.

When I began supplementing in 2011 my Zeo Sleep Monitor (which relied on brain waves rather than actigraphy as most monitors today) agreed with my PSG, reporting Deep in the 3% range and I was lucky to get 6 hours sleep a night, waking fatigued and unrefreshed. As I continued supplementing into 2012, the Zeo indicated a steady increase in Deep Sleep which continued into 2014, corresponding to the improved PSG report of that year. Unfortunately, Zeo hasn't been supported for quite a few years and mine has died. However, I do have a ResMed S+ which relies on sound waves to monitor breathing and movement and seems to be as accurate as other actigraphy type monitors. The S+ reports my current Deep Sleep at around 20%.

Over the years, as my Deep Sleep improved, I also began sleeping longer and my residual sleepiness and fatigue decreased, until, today, I feel I am sleeping normally. This improvement correlates nicely with Vitamin D supplementation, but I must stress that this is only part of the picture. Over this same period and continuing into the present, I worked very hard at incorporating the principles of good sleep hygiene into my routine. I do consider Vitamin D supplementation to be part of sleep hygiene, just like exercise and all the rest. Would I have attained normal restorative sleep without Vitamin D supplementation? I don't know. Would I have attained normal restorative sleep without the rest of the sleep hygiene principles being incorporated? I doubt it very much.

Finally, I would like to stress that achieving normal restorative sleep didn't happen for me overnight. It took years. Years, even after my SDB was corrected. Years of study, work, trial and error, log keeping, and patience. It also took several Sleep Certified Doctors before I found one I could work with satisfactorily. So, no magic bullet for me. Just a slow gradual improvement until one day I realized I was sleeping more than seven hours a night and waking refreshed.

Jay,

Thanks for your feedback and pointing out that old thread. My experience mirrors yours to some degree. I followed Dr. Gominak's protocol for seven months, testing my levels as I went. I do think it helped me to get back to sleeping though I don't have any zeo or other data to prove that. Just how I noticed the number of awakenings decrease. I also put a lot of effort into things outside of supplements. I think they have played a big role in reducing the severity of my sleep apnea. I have been at it for a year. I think to succeed at it, you have to see it as a marathon, not a sprint. Measure success in months, not weeks.

Update:

Jay, thanks for finding that link. I forgot that earlier discussion.

Talk about herding cats... Looking at sleep data with the idea of trying to adjust sleep stages is not straightforward.

My sleep data is better than I had before but I still have no idea of how accurate it is. I am working on that... I am seeing a pattern of sorts and have come to realize that there are many things that effect sleep. No wonder sleep study results are many time hit or miss and from the topics started here there may be many more misses.

I have had success in using my data to help adjust to time zone changes. I was able to mostly adjust to an 8 hour change going East in 2 days. Coming back West the adjustment was done in a single day.

When I am active all day my sleep tends to show extended time in deep sleep. When I sit on my ass all day my sleep tends to show a lot of time in light stages with an occasional dip in to deep sleep and some dips into REM sleep. Unfortunately there are times with the relationship is reversed so I don't have a good cause and effect... just a general suggestion.

I am still waking up pain free and am still only taking my B vitamins on M W F. This part actually seems to be working well.

Since my apnea is like a wound that will not heal, cpap is the right bandage.
Like glasses, hearing aids, and preventive dental care.
At least Medicare has not chosen to withhold this--yet . .

chunkyfrog wrote: ↑

Wed May 22, 2019 3:15 pm

Since my apnea is like a wound that will not heal, cpap is the right bandage.
Like glasses, hearing aids, and preventive dental care.
At least Medicare has not chosen to withhold this--yet . .

Just because it's cheaper to pay for a CPAP compared to after stroke care....

palerider wrote: ↑

Wed May 22, 2019 3:25 pm

chunkyfrog wrote: ↑

Wed May 22, 2019 3:15 pm

Since my apnea is like a wound that will not heal, cpap is the right bandage.
Like glasses, hearing aids, and preventive dental care.
At least Medicare has not chosen to withhold this--yet . .

Just because it's cheaper to pay for a CPAP compared to after stroke care....

No doubt money is involved.
Politicians are.

chunkyfrog wrote: ↑

Wed May 22, 2019 3:28 pm

palerider wrote: ↑

Wed May 22, 2019 3:25 pm

chunkyfrog wrote: ↑

Wed May 22, 2019 3:15 pm

Since my apnea is like a wound that will not heal, cpap is the right bandage.
Like glasses, hearing aids, and preventive dental care.
At least Medicare has not chosen to withhold this--yet . .

Just because it's cheaper to pay for a CPAP compared to after stroke care....

No doubt money is involved.
Politicians are.

Where Politicians are involved, any money left fell out of a hole in their pockets. Jim