No Answers Yet For Problems With ASV

BrianinTN wrote:... With due apologies to both Paper Nanny and JohnBFisher for my inability to turn the other cheek...It would be tragic if a new ASV user took some of the things written here as gospel simply because the poster gave his advice using a sure and authoritative tone. ...

My point is to not ignore or agree with disinformation. Rather, to be polite about doing so. You are. And making a clear, logical argument goes a lot farther for that new ASV user than word slinging. Thank you for doing a good job on that score.

JohnBFisher wrote:

BrianinTN wrote:... With due apologies to both Paper Nanny and JohnBFisher for my inability to turn the other cheek...It would be tragic if a new ASV user took some of the things written here as gospel simply because the poster gave his advice using a sure and authoritative tone. ...

My point is to not ignore or agree with disinformation. Rather, to be polite about doing so. You are. And making a clear, logical argument goes a lot farther for that new ASV user than word slinging. Thank you for doing a good job on that score.

You're always polite, John, and I appreciate that about you. The same is true for Brian, and I agree with your statement above. Logic and careful assessment go a long way around here when adjustments are called for, rather than what the impersonator is advising.

As everyone can plainly see, I've not been very polite to the copycat. I'm not going to delete or amend my post, though, nor will I apologize to HIM. I've had it with this imposter, and I didn't stop myself from responding (as I usually do when I get annoyed). I guess I've just seen too much from this stooge lately, and it was time to say something. I apologize to everyone else for what I said and how I said it. It's not like me, and I'll try to do better.

Or maybe I just need to take a break from here...

*Deborah, a personal apology to you for taking your thread off-topic.

Paper_Nanny wrote: I have ms, which has damaged my brain stem. That isn't the only possible cause of the problems I am having breathing while I am asleep.

DeNile is a big river.

JohnBFisher wrote: My point is to not ignore or agree with disinformation.

Your point will be well made when Paper-Nanny comes back with a clean CO2 report.

BleepingBeauty wrote: Or maybe I just need to take a break from here...

Relax. It's the internet. It's entertainment. Keep breathing..

Earlier today...

Paper_Nanny wrote:

StillAnotherGuess wrote:You have MS. MS attacks your brain stem. Your lower brain stem is the center for your respiratory drive. If the logic falls short there is nothing more to discuss. With me anyway.

Yes, that logic did fall short. Nothing more to discuss with StillAnotherGuess

Later in the day...

StillAnotherGuess wrote:DeNile is a big river.

Your point will be well made when Paper-Nanny comes back with a clean CO2 report.

Relax. It's the internet. It's entertainment. Keep breathing..

If you're coming back into the discussion, aren't you supposed to say, "Tag in!" or "Time in!" or whatever is the equivalent in your part of the world??

Deborah

StillAnotherGuess wrote:

JohnBFisher wrote: My point is to not ignore or agree with disinformation.

Your point will be well made when Paper-Nanny comes back with a clean CO2 report.

On 12 April 2011, Paper_Nanny had a Complete Metabolic Panel done, which included a CO2 test. Result value was 30 meq/L. Normal range is 21- 31.

Paper_Nanny wrote:

StillAnotherGuess wrote:Your point will be well made when Paper-Nanny comes back with a clean CO2 report.

On 12 April 2011, Paper_Nanny had a Complete Metabolic Panel done, which included a CO2 test. Result value was 30 meq/L. Normal range is 21- 31.

I "Guess" that once a question pops up that "Increase MinPS by 2" can't be offered as a possible solution, the Oracle goes Silent.

Anyway, CO2 measured in electrolytes as meq/L is not what needs to be looked at here, it is the level of gas, or pCO2. An elevated serum CO2 is suggestive of either metabolic alkalosis or compensated respiratory acidosis. If we use the Henderson-Hasselbalch equation to estimate what your pCO2 is, and make the assumption that your metabolic state is normal (a pH of ~7.40), then we arrive at a pCO2 of ~50 mmHg (normal 35 - 45 mmHg). If we further assume that this elevated pCO2 is due to some level of respiratory insufficiency (although MS is not particularly known to generate that, at least not to the extent of some of the other NMDs), then the suggestion of

StillAnotherGuess wrote:The problem is your MS is progressively decreasing your CO2 below normal levels. Hence, decreased breathing. That is why your patient initiated breathes are so low. You need to raise your CO2 level. Have you thought about plugging the vent holes in your mask and adding 2.0 liters of O2 in conjunction with your ASV "therapy"? The plugged mask holes (re-breathable dead space) allows you to inhale your exhaled CO2, thus raising your CO2 level to normal levels, whereby you will breathe normally on your own. The supplemental O2 prervents killing yourself on your own CO2. This "Re-breather" approach may sound a little draconian, but everybody has a right to breathe.

is so far beyond stupid that it boggles the mind to the nth degree.

Is your MS status re: pulmonary involvement presently being monitored with, for instance, Arterial Blood Gas, Pulmonary Function Testing and/or Pulmonary Mechanics?

NotMuffy wrote: Is your MS status re: pulmonary involvement presently being monitored with, for instance, Arterial Blood Gas, Pulmonary Function Testing and/or Pulmonary Mechanics?

I'm happy you weighed in with my next question.

Hi Paper_nanny,

Pls excuse me cutting in to this thread at this stage but a regular at Cpaptalk was in contact with me this week and mentioned your case and how you needed help.
I have read through all the posts and can see the usual helpful advice being provided by the stalwarts of Cpaptalk (a lot of very kind & helpful people, even if there is the occasional side swiping )

At 1st I didn't think there was anything at all I could add to the help already offered but, today I came across some information that caught my eye & I immediately thought of your situation. So this may be my only post depending on your answer. My question is, do you, or have you, consumed any types diet soda on a daily basis (i.e. Diet Coke etc:) ? - if not then I'll move on, if yes, can you say how much of it you would consume in any 1 day. In fact expand that to any regular consumption of artificial sweeter (like Nutrasweet or Equal or Spoonful).

What ever the answer - cheers & good luck - you are in a good place here.

DSM

Err, while I can't answer for Paper_Nanny, I am a person who generally has had about 2L of diet soda every day for most of his life. As such, and since we are both fighting residual hypopneas on our ASVs, I'd love to know where you're headed with that dsm.

Hi BrianinTN,

I am away from my office at the moment & left a pile of links to related articles on my work computer. I'll post these in a careful sequence tomorrow either here (if applicable) or in a new thread. Some info re this topic is alarmist but the overwhelming negative evidence is hard to ignore. I believe there are some items appearing on the news right now (today, tomorrow ) re some of the potential side effects of Aspamarte. The press is focusing on the issue that some artificial sweeteners cause weight gain rather than weight loss.

Because we here are a collection of people with variations on our SDB, we can be more susceptible to chemicals that can impact our respiration and that can also be the cause of 'shadow' symptoms (with one such prominent one being an MS diagnosis).

If Paper_Nanny doesn't use diet pop or Aspamarte based sweeteners it may be best that we start a new topic on it else we risk hijacking her thread which should be focused on her requests for assistance.

Cheers DSM

Spelling correction 'Aspartame'

DSM

Thanks for your input, NotMuffy. OT-- We had a cat once upon a time who was named Mohandas. We sometimes called her Muffy. When I have seen your name in posts, it makes me think of her. She was a sweet little slip of Meow, fondly remembered. But now I see your avatar and I wonder, is Muffy a reference to a baked goods product?

And back on topic... After reading your post, I did some research into respiratory insufficiency associated with ms. It is more common than I realized. Range across different studies I read was 30- 40% of people with ms who are ambulatory.

NotMuffy wrote:Is your MS status re: pulmonary involvement presently being monitored with, for instance, Arterial Blood Gas, Pulmonary Function Testing and/or Pulmonary Mechanics?

No, that has not been monitored, but according to some of the reading I have done, it should be. Ideally, I would have had pulmonary function testing done at the time I was diagnosed to establish a baseline to which later testing could be compared.

I have an appointment this afternoon with Mister Sleep Doctor. I will bring up the need to have my pulmonary functioning tested. I read several articles referring to specific tests that may not usually be done, but should be done in my case.

Thanks for your post. I feel more prepared with specific requests to make at today's appointment.

Deborah

dsm wrote:Pls excuse me cutting in to this thread at this stage but a regular at Cpaptalk was in contact with me this week and mentioned your case and how you needed help.

No apology needed. And thanks to whoever brought my case to your attention. I appreciate that as well as you taking the time to read over what's going on with me.

re aspartame:

dsm wrote:I'll post these in a careful sequence tomorrow either here (if applicable) or in a new thread.

I chew a lot of sugar free gum. All the stuff I regularly chew now is sweetened with sucralose, but in the past, I chewed sgum sweetened with aspartame.

dsm wrote:Because we here are a collection of people with variations on our SDB, we can be more susceptible to chemicals that can impact our respiration and that can also be the cause of 'shadow' symptoms (with one such prominent one being an MS diagnosis).

I think it would be best to post the aspartame information in a new thread. That way more people will see it. And I can read the information there. The idea that aspartame can cause symptoms similar to ms is well known in the ms population. It has been the topic of more than a few discussions at the local ms support group I attend, especially when people come who are in the midst of the diagnostic process; also many discussions about asparatame on internet forums for people with ms.

OT:

dsm wrote:If Paper_Nanny doesn't use diet pop

I had a funny almost reflexive reaction to that part of your post. Before I married Husband, he called carbonated beverages "pop". I came from a family that called those drinks "soda". One of the premarital agreements Husband and I reached was that he and I, along with any children we might have, would be the kind of family who used the term "soda". When I read the above portion of your post, my immediately thought was, "I drink soda, not pop."

Thanks for your input to my quest to get some better sleep. I hope that you would keep reading and if you have any other thoughts, that you would post them.

Deborah

Deborah,

I'll start a new thread with the Aspartame info. It was good to read that you are well aware of it. Knowledge is power & that is what we need in dealing with our SDB.

I have been (up until yesterday) a daily drinker of Diet Coke. That has now changed as I won't be drinking it any more. I had been researching a few symptoms regarding breathlessness, dizziness & spots before eyes & came across a news item that dealt with Aspartame. Quite an eye-opener. Further research was even more so. This was when I saw the comments re it being not unusual for an MS diagnosis being related to excess (or large intake) of diet soda plus a myriad of other symptoms, all of which I had been looking into separately.

Self uses a Resmed Vpap Adapt for SDB & once I tamed the leaking mask (using an anti-leak strap) it became my preferred ASV. Prior to that I used the Bipap Auto SV & that remains my back-up. Both are excellent therapeutic machines. It took me months to get used to the Resmed ASV as it is a real 'task master' but over time one does adapt & its use now seems totally natural. John B Fisher explains this issue very well.

Good luck with your SDB journey

DSM