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Re: Data Review Request - CAs replacing OAs despite low pressure

Posted: Mon May 19, 2014 5:06 am
by Todzo
Please check out some of the good work by Dr. Stasha Gominak regarding Vitamin D3 and sleep apnea. She has some great web casts and very positive clinical experience.

Please check out at The Vitamin D Council web site the tab entitled “How to get the vitamin D my body needs”. It is a pretty comprehensive documented guide.

Re: Data Review Request - CAs replacing OAs despite low pressure

Posted: Mon May 19, 2014 5:41 am
by Todzo
49er wrote:
Todzo,

With all due respect, there are no double binded studies that have proven that a low vitamin D level causes central sleep apnea. Dr. Gorminik whom you keep referencing regarding vitamin D levels and sleep apnea has consistently said that there are no long term studies that prove that it cures obstructive sleep apnea. And she has said nothing about vitamin D and central sleep apnea.
Dr. Stasha Gominak (Please note the proper spelling - and see: http://drgominak.com/ ) refers to the fact that a part of the brain that is highly involved with breathing is sensitive to the vitamin D3 levels.

I am not so sure that your statement about centrals is correct but she has a lot of materials so I can see how you might miss something.
49er wrote:Of course, the centrals need to be addressed. No one disagrees with that. But to infer that if she doesn't take a megadose of vitamin D to address this which will lead to her death is outrageous. ...
I am asking her to review the issue again with her doctor. Hopefully now with a bit more education.

But perhaps I was a bit passionate about this.
49er wrote:Also, if the trend from last night continues, the issues of addressing the centrals may no longer be relevant. Thankfully, Pusgy, who tortoisegirl should listen to, is monitoring this thread and will provide her usual excellent guidance as far as solving this problem. The great thing about Pugsy is she knows when to offer advice vs. referring someone to a doctor.

49er
I hope your right but know from my own experience and from watching those here and from the research that centrals are not a stable thing. The thresholds tend to move with stress, what you eat, how much you exercise, and probably many other things we would not think of at this time.

And whatever machine is used or whoever sets it arousals are still likely to be very high preventing good sleep and improved quality of life.

I do believe that my recommendation that tortoisegirl should talk with her doctor about a more aggressive approach to correcting her measured low vitamin D3 levels is wise.

Re: Data Review Request - CAs replacing OAs despite low pressure

Posted: Mon May 19, 2014 6:03 am
by 49er
A big fat sigh!

Todzo, again, the good doctor has said her research on Vitamin D and apnea is a hypothesis and needs to be confirmed with more extensive research. To infer otherwise, particularly to newcomers, is totally outrageous and very irresponsible.

And suggesting that someone ask a doctor about a more aggressive approach with vitamin D to correct centrals when there is no research to prove this is even more outrageous.

49er

Re: Data Review Request - CAs replacing OAs despite low pressure

Posted: Mon May 19, 2014 6:14 am
by tortoisegirl
Thanks for the input everyone!

Yes I definitely plan to follow up with my doctor on the Vitamin D. I see dangers in starting an ultra high dose due to the chance of toxicity (it is fat not water soluble), but do agree there are many reasons to get the levels up. Going from no Vitamin D to 5,000 IU per day is progress. Neither me or my doctor is concerned about having these amounts of centrals added since its being monitored and has only been a short period of time (ie. only on CPAP, which has only been 11 nights...three sleep studies showed centrals were not an issue prior to CPAP). My doctor and I do want me to get another sleep study done once stable on CPAP to check on the arrousals and PLMD and such.

I thought I'd post a quick update with last night's data at the pressure of 5. Data not quite as good, with AHI=5.00 (3.85 clear airway, 0.77 hypopnea, and 0.38 obstructive apnea). However, about half of those centrals appear to be while I was awake, as I took longer to fall asleep than usual and there was a big cluster of them in the beginning. I also remember several pressure pulses while awake (which are annoying by the way if you are just about to be able to doze off!). Therefore the numbers are probably only slightly worse than the night before. I've read how these machines can flag events while awake, but my machine seems to really not like my awake breathing. On APAP it was often upping the pressure while I was awake. Todzo may be on to something with my breathing being unstable at times.

Leaks were awesome though (95% was 0.00 and max was 1.20). And I seem to have solved my mask mark issues; I used small pieces of gentle tape with Lansinoh under them at the problem areas. I'd like a bit more humidity since I mouth breathe (have it at max of 6), but my dry mouth is no worse than pre-CPAP. I still plan to gather a bit more data at this pressure. Sleep quality still about the same as pre-CPAP. I'm still doubtful this will help my daytime symptoms, but at least I am comfortable enough to give this a good try now (as is my husband). Best wishes.

Re: Data Review Request - CAs replacing OAs despite low pressure

Posted: Mon May 19, 2014 6:41 am
by Sludge
Thanks for the update, sounds like you're definitely headed in the right direction!

Re: Data Review Request - CAs replacing OAs despite low pressure

Posted: Mon May 19, 2014 12:33 pm
by Todzo
[added]

http://onlinelibrary.wiley.com/doi/10.1 ... 7s221/full Article first published online: 1 DEC 2007

Abstract

The serum 25-hydroxyvitamin D [25(OH)D] concentration that is the threshold for vitamin D toxicity has not been established. Hypercalcemia is the hazard criterion for vitamin D. Past policy of the Institute of Medicine has set the tolerable upper intake level (UL) for vitamin D at 50 μg (2000 IU)/d, defining this as “the highest level of daily nutrient intake that is likely to pose no risks of adverse health effects to almost all individuals in the general population.” However, because sunshine can provide an adult with vitamin D in an amount equivalent to daily oral consumption of 250 μg (10,000 IU)/d, this is intuitively a safe dose. The incremental consumption of 1 μg (40 IU)/day of vitamin D3 raises serum 25(OH)D by ∼1 nM (0.4 ng/ml) [note: this implies 3000(IU)/day to maintain 30 ng/ml but 6000(IU)/d to maintain 60 ng/ml with no sun but people of higher BMI may require twice as much – some will require less – bodies are different]. Therefore, if sun-deprived adults are to maintain serum 25(OH)D concentrations >75 nM (30 ng/ml), they will require an intake of more than the UL for vitamin D. The mechanisms that limit vitamin D safety are the capacity of circulating vitamin D–binding protein and the ability to suppress 25(OH)D-1-α-hydroxylase. Vitamin D causes hypercalcemia when the “free” concentration of 1,25-dihydroxyvitamin D is inappropriately high. This displacement of 1,25(OH)2D becomes excessive as plasma 25(OH)D concentrations become higher than at least 600 nM (240 ng/ml). Plasma concentrations of unmetabolized vitamin D during the first days after an acute, large dose of vitamin D can reach the micromolar range and cause acute symptoms. The clinical trial evidence shows that a prolonged intake of 250 μg (10,000 IU)/d of vitamin D3 is likely to pose no risk of adverse effects in almost all individuals in the general population; this meets the criteria for a tolerable upper intake level.

http://www.mayoclinic.org/healthy-livin ... q-20058108

Taking 50,000 international units (IU) a day of vitamin D for several months has been shown to cause toxicity.

[note: a 350,000 IU dose would be a one week supply of 50,000 IU]


http://ajcn.nutrition.org/content/88/2/582S.short


Although current data support the viewpoint that the biomarker plasma 25(OH)D concentration must rise above 750 nmol/L [300 ng/ml] to produce vitamin D toxicity, the more prudent upper limit of 250 nmol/L [100 ng/ml] might be retained to ensure a wide safety margin.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3313753/

A 67-year-old female was admitted to the hospital with a history of lethargy, memory impairment, confusion, anorexia and gait imbalance for 2 weeks duration...

...After 7 days of admission, a follow-up orthopedic prescription revealed that she was getting inj. Arachitol 6 lac units [600,000 (IU)] every week [so as if 85,714 (IU) daily] for last 3 months. On the 9th day of admission, she was detected to have very high serum 25(OH) vitamin D level (254.70 ng/ml). Patient was discharged after 2 weeks after her serum calcium came down to normal range with the advice of no dietary calcium and vitamin D intake. Her 25(OH) vitamin D level remained high for the next 6 months. Now she is completely asymptomatic and her serum 25(OH) D is normal.

Re: Data Review Request - CAs replacing OAs despite low pressure

Posted: Tue May 20, 2014 6:06 am
by tortoisegirl
Thanks everyone for the continued help! Third night at pressure of 5: AHI=4.26 (0.74 hypopnea, 0.59 obstructive, & 2.94 central). But during 6 of the 20 recorded centrals I know I was still awake (5 minute period at the very beginning of the data), and I slept 6.8 hours, so that reduces the central index from 2.94 to 2.06, which reduces the AHI to 3.38 (0.74 hypopnea, 0.59 obstructive, & 2.06 central). I think that is pretty awesome progress.

Sleep quality still pretty good. Its quite apparent I don't like pressure changes. Even having EPR off seems to help. Leak line was uglier last night, but plenty low enough (0.00 min, 1.20 med, and 3.60 for 95% & max), and I've never remembered waking up due to one. Mask marks fixed with lanolin+tape.

I'm deciding between gathering more data at the pressure of 5, or tweaking it slightly up or down, getting a few days of data in each direction. It looks like I'm very close to an ideal pressure to balance the central and obstructive events. I had a laugh yesterday when I got a SD card in the mail from my DME to update my pressure to what my doctor prescribed (even though she changed it on my card)...so I had to change the pressure back again so I could send in my old card. Best wishes.

Re: Data Review Request - CAs replacing OAs despite low pressure

Posted: Tue May 27, 2014 6:08 am
by tortoisegirl
Another update: Currently at a pressure of 4.8 on straight CPAP without EPR or ramp. Last night was my best data ever with only one event while I was actually asleep, a central, but I missed one dose of pain meds yesterday so I'm guessing its skewed low. Leaks especially awesome last night, 95% was at 0.00. Maybe giving my mask a good wash (vs. just baby wipes) helped, although leaks had always been pretty low (95% at 2.4).

Prior to that I had been averaging an AHI around 2, split between obstructive apneas & hypopneas and centrals. I seem to be getting some benefit, but mostly upon initially waking up (not as much during the day), so it looks like our theory that the pain meds are causing most of the daytime sleepiness is correct. I'm ok with continuing CPAP though.

To summarize my history, my doctor had me on APAP 4-14, then APAP 7-12, with EPR of 3, in lieu of a titration study. I wasn't tolerating the higher pressures, pressure changes, or EPR well, and was getting lots of centrals. So I changed it to straight CPAP at 5, and have tweaked it up and down a bit to see what works best for data and sleep quality. A big thank you to everyone for their continued help!

I'm really curious what a lab titration would show for events at my current pressure, as if my machine is accurate, it seems my pressure requirement to stop obstructive events is quite low. Don't get how it can be doing much. I don't see anyone else here using a pressure this low? The plan is for me to get a lab titration once everything is stable, since we also have to check my PLMD and arrousals. Best wishes.