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Phil_in_CA wrote:I would like to second:

a different doctor
and
acupuncture


I think that having a doctor who actually listens, and responds in ways that I understand, paramount! I have had doctors who ran the gamut from those who seemed to "blow me off" to those who paid attention, and I gravitate toward the latter, because I think I need a conversation about my health, not an oration designed to impress... or depress.

I have recently started acupuncture and find it be very useful in solving long-term pain issues. I have Cerebral Palsy and have endured much pain over the long haul, so even while the thought of pins and other (alternative?) medicinal techniques to be off-putting, I am glad that I allowed myself to try acupuncture.

Hi Phil_in_CA
I have used acupuncture and many other natural therapies over my lifetime but for damaged nerves unfortunately acupuncture is not a good idea. RSD can travel around your body . I started off with it in my one wrist and after dislocating the other elbow had RSD the as well. I know people in my support group who have developed RSD at injection sites after having bloos taken! IT might move, it might not. Not worth the risk, but anyhow for me I nevere really had any gain for eg when I used it for slipped cervical disc...I do agree with you about do ctors though.

Have a good day.

AVI 123
Please see PM for reply.

Killing time till tomorrow, I have 2 more questions:

Did you ask about the use of ETCO2 in any future studies?

If a new machine is indicated, how would you go about getting it? The ResMed VPAP ST-A has now added the iVAPS option, and the response time of this mode (as opposed to the similar AVAPS technology in Respironics) makes this look very appealing, since what we're trying to do here is control Alveolar (Minute) Ventilation. ASV was designed for a reduced attack during periods of hyperventilation and aggressive attack during hypoventilation or apnea. iVAPS only attacks the hypoventilation/apnea part.

Of course, one might argue that a plain ol' BiLevel ST would work just as well, but if some is good and more is better, then going technologically berserk (i.e., "The Max") makes us "look good" while we're doing it.

zoocrewphoto wrote:

Gillian wrote:I did ask him about side effects and he said there was no known problems in the long term.

Do you mean side effects of oxygen deprivation?

...headaches...

Although when one speaks of headaches, hypercapnia is the first thing that should come to mind.

G., can you describe the headaches- when they occur, how long, when you don't have them (are there days when you don't, times of the day you don't, etc.)?

Yeah, really into the ETCO2 thing, although if they don't have CO2 capability (or, worse yet, don't know) I imagine this is futile.

Oh well, DWing here we come.

Zoom in close on the airflow waveform and see how much air you're getting during the events. Sometimes, the machine triggers on something that's weird, but not that worrying. Even though you have a lot of events, at least they're fairly short in duration.

I suspect you do have a real problems, but zooming in will help clarify things.

Did you ask about the use of ETCO2 in any future studies?

No sorry, didn't know anything about it.

If a new machine is indicated, how would you go about getting it?

The ResMed VPAP ST-A has now added the iVAPS option, and the response time of this mode (as opposed to the similar AVAPS technology in Respironics) makes this look very appealing, since what we're trying to do here is control Alveolar (Minute) Ventilation. ASV was designed for a reduced attack during periods of hyperventilation and aggressive attack during hypoventilation or apnea. iVAPS only attacks the hypoventilation/apnea part.

Because I can only get a new machine every two years I was rather hoping to be able to pick up a 2nd hand one. Def. buy in the US though because it is more than double the cost here in Aus. If the Bi level would work, that would be somewhat cheaper, wouldn't it?

Phoned the spec. This am and they will post it to me after they get doc approval!!! I suggested very strongly that as it was my report I was quite sure there would be no problem!! Hopefully if they post today, I'll get it tomorrow.

With respect to the headaches I generally wake up with one which seems to go away on its own within about an hour. At first thought it could be the heat and humidity which is terrible in summer. But also I have been getting very severe headaches, almost like migraines needing darkened room etc. in the PM. Unusual for me because up until last few months I rarely had a severe headache, always considered myself one of the lucky ones in that regard. They come mainly across my eyes (have had a checkup) and into the temples either side of the head. A dark room, wet cloth and lie down seems to ease it sometimes, otherwise I just go to bed and pray I'll go to sleep quickly and it'll be gone when I wake up! Don't want to take any more meds for it.

Thanks Mollete, have a good day.

archangle wrote:Zoom in close on the airflow waveform and see how much air you're getting during the events. Sometimes, the machine triggers on something that's weird, but not that worrying. Even though you have a lot of events, at least they're fairly short in duration.

Archangle Which graph do I look at? Sorry to be dumb!
Gillian

mollete wrote: The ResMed VPAP ST-A has now added the iVAPS option, and the response time of this mode (as opposed to the similar AVAPS technology in Respironics) makes this look very appealing, since what we're trying to do here is control Alveolar (Minute) Ventilation. ASV was designed for a reduced attack during periods of hyperventilation and aggressive attack during hypoventilation or apnea. iVAPS only attacks the hypoventilation/apnea part.

Above emphasis mine. That's some impressive but somewhat challenging tech info, Mollete. Care to give us some info links or URLs with peer reviewed studies so other folks can do further research on this new technology which Resmed has supposedly developed Also: What is the correlation between Alveolar (Minute) Ventilation and one's Tidal Volume lines?

Sir NoddinOff wrote:Care to give us some info links...

Sure:

http://www.carolinasleepsociety.org/doc ... erview.pdf

mollete wrote:

Sir NoddinOff wrote:Care to give us some info links...

Sure:
http://www.carolinasleepsociety.org/doc ... erview.pdf

Thanks Mollete, that's a good place to start and very interesting. I hope more members give their opinions about this new technology.

Gillian wrote:

archangle wrote:Zoom in close on the airflow waveform and see how much air you're getting during the events. Sometimes, the machine triggers on something that's weird, but not that worrying. Even though you have a lot of events, at least they're fairly short in duration.

Archangle Which graph do I look at? Sorry to be dumb!
Gillian

Sorry about not being clear. The graph that says "Flow Rate" is the one I mean. It shows your breathing, breath by breath, and is sort of the data that everything else comes from.

Gillian wrote:

mollete wrote:Did you ask about the use of ETCO2 in any future studies?

No sorry, didn't know anything about it.

At this point it's water under the bridge, but:

deltadave wrote:BTW you might want to plant the seed of monitoring your ETCO2 when/if you go back for re-titration.

deltadave wrote:OMT, did you tell them you want End Tidal Carbon Dioxide (ETCO2) levels monitored during your NPSG? That will be critical to assess the extent of underlying disease.

Gillian wrote:He insisted that he had not seen any positive studies for other machines helping the centrals and in any case, in the long term, they weren't going to harm me anyway so just to carry on as before. So the end result is that even though my breathing is obviously depressed, and my oxygen sats 'low', centrals still high, I wake each morning with a headache and have many arousals every night, my sleep specialist says, no worries, it won't kill you so just continue as before.

Javaheri wrote:Because both obstructive and central sleep apnea may contribute to the mortality of patients with these sleep related breathing disorders, sleep apnea may also be a risk factor for mortality of patients on opioids. This speculation is supported by the excess mortality of young individuals on opioids who may be found dead in bed, with the cause in several of them remaining unknown.

http://www.aasmnet.org/jcsm/ViewAbstract.aspx?pid=27229

Gillian wrote:Because I can only get a new machine every two years I was rather hoping to be able to pick up a 2nd hand one. Def. buy in the US though because it is more than double the cost here in Aus. If the Bi level would work, that would be somewhat cheaper, wouldn't it?

I believe an ST BiLevel would be effective, but since we're talking some major coin here it will be critical to:

• Determine ideal therapy via NPSG (you could analyze 3 modes in a single night); and
• Test drive the device for 1 - 2 weeks before you commit.

mollete wrote:We must also remember that he (your physician) may be correct in his assessment, and should give him the benefit of the doubt (for about another 24 hours or so).

OK, time's up! Time to whack him upside the head with a shovel!

An iVAPS video:

http://www.resmed.com/epn/assets/multim ... 40x360.mp4