CPAPtalk.com

Feel weak. Mind alert. Blood pressure med may be too much. BP low. Multifactorial issues. Within my capacity to manage without doc’s advice. Time for more coffee.

Totally agree. I believe this unregulated "SoClean" stuff is still extremely dangerous. Generating ozone in a confined space (like a bedroom) is pretty much crazy.

Aside the trouble with counterfeit consumables and ozone poisoning - It's all designed and manufactured in China, and they apparently drop-ship directly to customers with no QA or validation whatsoever. I've seen no evidence of real domestic engineering, testing, or quality control. Lots of venture capital wrapped up in this place (and a new CTO from a VC firm.....right......) so it's ALL marketing, advertising, and fearmongering to push product out the door as fast as possible.

The "headquarters" facility in New Hampshire is 90% call-center working 24/7 to quell the tsunami of complaints and returns that come in daily from around the world.

It's disgraceful. I'm honestly surprised the FDA hasn't shut them down.

M

palerider wrote: ↑

Mon Jun 10, 2019 11:41 am

sila wrote: ↑

Mon Jun 10, 2019 7:54 am

NoClean is crap, they're being sued for false advertising for not telling people they're poisoning them with ozone.

It can cause damage to your machine, and your lungs, and does nothing worthwhile.

Yesterday was 419 days total so far on APAP. Average AHI over that time frame is 3.47446301.

Clearly too high for me, although not too high by the idiotic 5.5 AHI insurance guidelines.

AHI ranged from 0.3 to 15.3. Far too many AHIs of just over 8. Indicates to me that the sleep doc should have been monitoring and should have adjusted minimum APAP pressure from 5 to 8 from within a week of starting therapy.

Five nights in at 10-10.5. AHI of 0.5 this morning. Two centrals, no obstructives, three hypopneas. Feeling ever so slightly but qualitatively better in terms of weakness and fatigue.

Do sleep docs graduate at the bottom of their med school class?

sila wrote: ↑

Mon Jun 17, 2019 9:38 am

Five nights in at 10-10.5. AHI of 0.5 this morning. Two centrals, no obstructives, three hypopneas. Feeling ever so slightly but qualitatively better in terms of weakness and fatigue.

Do sleep docs graduate at the bottom of their med school class?

Ever notice how little time doctors spend with you, including the time it takes to review your charts? Add to that the sparse information they actually get about your therapy (do they even look at the info from the SD card?), and the time between appointments - it’s no wonder we end up coming to sites like this for support and information. It’s not necessarily that they don’t know the subject matter - it’s more likely that they just can’t spend the appropriate amount of time working with us if they want to stay in business.

We have to take charge of our own therapy, but we also require the doctor for prescriptions or machine upgrades. Sucks, but that’s how it is.

My sleep doc’s response to my asking for pressure increase from 5 due to air hunger was, to paraphrase, ‘the machine takes care of your pressure needs.’

My sleep apnea onset goes back 32 years. That was when I had a navel orange-sized meningioma excised from my brain. Meningiomas have a unique proclivity to cause cerebral edema. For five months subsequent to surgery I walked around with what looked like a bag of jello wiggling on the side of my head. I probably slept on my back for those five months. And that was when I began to experience profound fatigue and weakness, my blood pressure went up and I began to experience tachycardia and anxiety as well. The neurosurgeon didn’t suggest sleep apnea due to traumatic brain injury , nor did acupuncturists or any of a series of MDs over the years. And the information probably wasn’t researched yet, but no one mentioned that sleep apnea promotes vascular endothelial growth factor (VEGF) production, which contributes to tumor growth and vascularity.

https://www.ncbi.nlm.nih.gov/m/pubmed/12070063/

VEGF also contributes to red blood cell parameter increase, which is the reversible cause of my secondary polycythemia once my sleep apnea is under sustained control.

So it goes. Glad to have found this forum.

sila wrote: ↑

Mon Jun 17, 2019 9:38 am

Five nights in at 10-10.5. AHI of 0.5 this morning. Two centrals, no obstructives, three hypopneas. Feeling ever so slightly but qualitatively better in terms of weakness and fatigue.

Do sleep docs graduate at the bottom of their med school class?

fantastic!! look for that fatigue and weakness to resolve over the course of time. no one can say how long it will take, but it'll happen.

yeah, every now and then, we have someone who has a good sleep doc. but they ARE rare.

Always happy to help our our moderators.

Sila, although one night does not a trend make—wow, great results! And it’s wonderful to hear you might be feeling a little better. Sometimes improvement is very gradual, almost imperceptible day to day, but no less real for that. I hope you’re on the road to feeling a lot better.

bombayone wrote: ↑

Mon Jun 17, 2019 3:29 pm

Always happy to help our our moderators.

You mean you're going to quit posting?

Yes. Thanks for the advice. Peace to you. Please try to continue to give your helpful counsel in a non combative manner.

bombayone wrote: ↑

Tue Jun 18, 2019 12:23 am

Yes. Thanks for the advice. Peace to you. Please try to continue to give your helpful counsel in a non combative manner.

May the fleas of a thousand camels infest your nether regions.

Can one get the spins/dizziness if minimum pressure is set too high?

palerider wrote: ↑

Tue Jun 18, 2019 1:00 am

bombayone wrote: ↑

Tue Jun 18, 2019 12:23 am

Yes. Thanks for the advice. Peace to you. Please try to continue to give your helpful counsel in a non combative manner.

May the fleas of a thousand camels infest your nether regions.

Good grief! Now that is a good one!

And so deserved.
JPB

palerider wrote: ↑

Tue Jun 18, 2019 1:00 am

bombayone wrote: ↑

Tue Jun 18, 2019 12:23 am

Yes. Thanks for the advice. Peace to you. Please try to continue to give your helpful counsel in a non combative manner.

May the fleas of a thousand camels infest your nether regions.