Ever hit an IPAP of 30? Or a 30 minute Apnea/Quit breathing?

[StillAnotherGuest]

http://bipapautosv.respironics.eu/Default.asp



Looks like it does

That's the European model. The US version looks like a plain ol' Auto BiPAP. No proximal pressure line.

SAG

[dsm]

http://bipapautosv.respironics.eu/Default.asp



Looks like it does

That's the European model. The US version looks like a plain ol' Auto BiPAP. No proximal pressure line.

SAG

[StillAnotherGuest]

Why would they vary so dramatically ???

Got me.

When Omni comes out, might be a totally different color altogether, like Shocking Pink.
SAG

[ozij]

[dsm]

Dave,

Does your Bipap Auto SV have an added air pressure sensor line that runs inside or alongside the main air hose ? - none of us seem able to figure this out from the confusion of images & data on the model.

If it does, it may possibly be a source of why your machine inexplicably goes to 30 CMS.

If it doesn't have this auxiliary pressure sensing line then that alone opens a wealth of questions as to just what A Bipap Auto SV really is.

DSM

[dllfo]

I will try to answer some of the questions.....I will use ALL CAPS

Some things that don't sound right are:

- you are on heliox? AS REQUIRED FOR VOCAL CORD DYSFUNCTION.
- you are on supplemental oxygen? AS REQUIRED
- you suspect CSR? ALMOST GUARANTEED,
- you are now on a AdaptSV NO. RESPIRONICS BIPAP AUTO SV

Does your doctor or provider know about all these other items you are using with the machine? (meaning, using the machine WITH heliox and oxygen).
I HAVE NOT USED HELIOX IN LINE WITH OXYGEN YET, I MAY HAVE SAID SOMETHING WRONG, I HAVE THOUGHT ABOUT IT, EVEN TRIED IT ONE AFTERNOON...FOR A FEW MINUTES, COULD NOT DETERMINE IF IT HELPED OR NOT. BUT I DEFINATELY WAS NOT USING HELIOX THE MORNING I HIT 30.

I can easily be wrong here, but it seems use of all those supplemental items combined with the machine would confuse the heck out of your respiration drive and the machine which sounds like what is happening. READ ON DOWN FOR ANSWER

Didn't they give you some setup parameters to use on that machine?YES
Did they provide you with the clinical manual? Is there one? YES, I HAVE IT.

Maybe you need to reset the machine back to default settings and start again? If it is an auto machine it should find the settings it needs on its own. Do you still have one of your old machines? did you not get better therapy with the old one? I HAVE MY OLD MACHINE. I DID NOT GET BETTER THERAPY ON IT. I THINK THERE IS AN ABOVE AVERAGE CHANCE MY FUNERAL WOULD HAVE BEEN TODAY HAD I BEEN ON THE OLD MACHINE. REMEMBER, MY BRAIN DOES NOT RECOGNIZE THAT I HAVE QUIT BREATHING OR THAT I AM LOW ON OXYGEN. NJC USED CARBON DIOXIDE TO PUSH MY PULSE OX DOWN. I NOTICED MY CHEST WAS GETTING WARMER, BUT I WAS STILL TALKING WITH THEM WHEN THE ALARMS WENT OFF, THE NURSE SHOVED A CANNULA IN MY NOSE AND TOLD ME TO BREATHE. I DID. AFTER AN UNDERTERMINED LENGTH OF TIME I LOOKED AROUND AND MY PULSE OX HAD CLIMBED UP TO 64.

I could see increase the EPAP minimum from 4.0 cm to 6.0 cm, but if you have somehow PREVENTED EPAP from increasing I could see IPAP then running up to the maximum. But that machine is different then what we are used to here so it is all greek to us. EPAP 5, MIN IPAP 9, MAX IPAP WAS 14 AND I HIT 14, STAYED THERE A SHORT PERIOD OF TIME. THEN I RAISED IT TO 17 AND HIT 17...IT STAYED THERE, SAME WITH 20, THEN 25, THEN 30 AND I AM STILL HITTING 30...STAYING THERE A MINUTE OR TWO OR THREE, THEN DROPPING SOME...ON THE DATE IN QUESTION IT WENT TO ABOUT 23, THEN BACK UP TO 30...STAYING THERE A FEW MINUTES.

Could also be that the machine has a firmware/software problem and IS wigging out. I don't even know what the EncorePro daily report looks like with that machine. NO. I SENT THE PDF FILE TO RESPIRONICS, ASKING ONLY IF THE PROGRAM APPEARED TO BE ACCURATE. THEY CANNOT COMMENT ON A PROGRAM THEY AREN'T SUPERVISING, BUT THE NUMBERS I SENT THEM LOOKS LIKE THE PROGRAM RESPONDED EXACTLY AS IT WAS DESIGNED TO DO. AFTER TALKING TO A COUPLE OF RTs, READING THE MANUAL AGAIN, IT LOOKS LIKE THE MACHINE AND PROGRAM WERE PERFECT.

Respironics should be able to assist your doctor in setting up that machine properly. NO ONE IN THE SACRAMENTO AREA HAS HAD THE "IN SERVICE", AT LEAST THAT I CAN FIND. BUT I DID HAVE ASSISTANCE IN SETTING IT UP.
If you have data on a SmartCard they should be able to read that data and suggest changes to improve it. I HAVE THE DATA, IT DOWNLOADED AS A PDF FILE. I SENT IT TO JAMES SKINNER, A COUPLE OF RTs AND RESPIRONICS. PLEASE REMEMBER RESPIRONICS SELLS TO DMES AND NOT YOU AND I. ANY ASSISTANCE FROM REPIRONICS IS ABOVE AND BEYOND THEIR OBLIGATION TO ME.

My understanding is that machine's main goal is to stabilize your breathing, by doing so the central apnea associated with your disorder go away on their own. It sounds like now the machine settings are so messed up the machine cannot find that (i.e. put the machine back to the default settings). IF YOU ARE INTERPRETING IT THAT WAY, IT IS PROBABLY MY FAULT, I WROTE SOMETHING SLIGHTLY OUT OF CONTEXT OR SOMETHING. THE MACHINE PUT MY BREATHING RATE AT 7-9...I GUESS BETWEEN THE APNEAS, CSR AND ........
AND I FEAR VCD, THE MACHINE NEEDED 30 TO GET THE AIR IN ME.

I would also be asking the doctor if use of the heliox/oxygen should be used with the machine. Like I said I could be all wrong and you need that heliox because you dive at 1200 feet. MY DOCTOR PRESCRIBED BOTH OXYGEN AND HELIOX. NOT SPECIFICALLY FOR THIS MACHINE. WHILE I AM CERTIFIED PADI, I DON'T DIVE ANYMORE. 80%HELIUM AND 20% OXYGEN IS HELIOX USED FOR VOCAL CORD DYSFUNCTION AND WITH PEDIATRICS. THE HELIOX GETS OXYGEN THRU TIGHT PLACES. I CAN TELL YOU BEFORE HELIOX I WENT IN AMBULANCES TO SPEND THE DAY IN THE CRITICAL CARE WARD.

MY THOUGHTS ABOUT USING THEM WAS HAVING SOME WAY TO INJECT A MEASURED AMOUNT OF HELIOX INTO THE "HOSE" LEADING TO MY SWIFT II.
I WAS STRICTLY BRAINSTORMING. I MAY HAVE UNINTENTIONALLY MISLED SOMEONE, BUT IT WAS BRAINSTORMING ON SOME WAY TO RELIEVE THE HIGH PRESSURES. LET ME SAY IT ANOTHER WAY, IF I CAN GET HELIOX INTO MY VOCAL CORDS, IT USUALLY RESCUES ME AND I WOULD NOT NEED SUCH HIGH PRESSURES.

ALL OF THAT THEORY IS BASED ON VCD KICKING IN, FORCING THE SV TO USE A PRESSURE OF 30 TO GET PAST MY VOCAL CORDS. PURE GUESSING ON MY PART.

OZIJ - THAT PICTURE IS MY UNIT.

DSM -NO SIR, NO ADDITIONAL AIR LINES OR SENSORS THAT I KNOW OF.

By looking at the Encore Pro print out, then reading the manual, then going back to look at it again, I think the machine acted flawlessly. It is designed to put my breathing at 7-9 per minute, it established my Peak Flow very close to previous readings, tidal volumes went up from the 500s to around the 700s...I wish I understood it all.

I felt the same way yesterday as I did Monday...sleepy, groggy, can't stay awake..THEN I remembered Monday night/Tuesday morning and I took 40 mg of prednisone. BANG!! I started breathing better. Darned prednisone rescues me every time.

The only change, other than the prednisone, is a 6 ft hose I now use.

I am hoping something I say here will jog someones memory.

Lung damage is pretty certain....I was exposed to SARS on a cruise ship,
Agent Orange in South East Asia, we sprayed the aircraft down (fogged them) when landing in foreign countries (using DDT)....with my swimming pool empty one day, I poured something like 5 gallons of liquid chlorine on black algae. When that didn't work I poured about 5 gallons of muratic acid on it. I walked around the house for a minute or two. Coming back into the backyard I felt like I was hit in the chest with a 2x4. I fell down, but some instinct warned me to hold my breath and crawl for the corner of the house.
I had created ...what do they call it...sulphuric acid?? No...hydro-chloric acid? I rode my Husquvarna dirt bike in an area with asbestos all over it. The military fogged areas with a machine ...so thick you couldn't see you own hands.

Oh well, some times you eat the bear and sometimes the bear eats you.

[Snoredog]

I will try to answer some of the questions.....I will use ALL CAPS

Some things that don't sound right are:

- you are on heliox? AS REQUIRED FOR VOCAL CORD DYSFUNCTION.
- you are on supplemental oxygen? AS REQUIRED
- you suspect CSR? ALMOST GUARANTEED,
- you are now on a AdaptSV NO. RESPIRONICS BIPAP AUTO SV

Does your doctor or provider know about all these other items you are using with the machine? (meaning, using the machine WITH heliox and oxygen).
I HAVE NOT USED HELIOX IN LINE WITH OXYGEN YET, I MAY HAVE SAID SOMETHING WRONG, I HAVE THOUGHT ABOUT IT, EVEN TRIED IT ONE AFTERNOON...FOR A FEW MINUTES, COULD NOT DETERMINE IF IT HELPED OR NOT. BUT I DEFINATELY WAS NOT USING HELIOX THE MORNING I HIT 30.

I can easily be wrong here, but it seems use of all those supplemental items combined with the machine would confuse the heck out of your respiration drive and the machine which sounds like what is happening. READ ON DOWN FOR ANSWER

Didn't they give you some setup parameters to use on that machine?YES
Did they provide you with the clinical manual? Is there one? YES, I HAVE IT.

Maybe you need to reset the machine back to default settings and start again? If it is an auto machine it should find the settings it needs on its own. Do you still have one of your old machines? did you not get better therapy with the old one? I HAVE MY OLD MACHINE. I DID NOT GET BETTER THERAPY ON IT. I THINK THERE IS AN ABOVE AVERAGE CHANCE MY FUNERAL WOULD HAVE BEEN TODAY HAD I BEEN ON THE OLD MACHINE. REMEMBER, MY BRAIN DOES NOT RECOGNIZE THAT I HAVE QUIT BREATHING OR THAT I AM LOW ON OXYGEN. NJC USED CARBON DIOXIDE TO PUSH MY PULSE OX DOWN. I NOTICED MY CHEST WAS GETTING WARMER, BUT I WAS STILL TALKING WITH THEM WHEN THE ALARMS WENT OFF, THE NURSE SHOVED A CANNULA IN MY NOSE AND TOLD ME TO BREATHE. I DID. AFTER AN UNDERTERMINED LENGTH OF TIME I LOOKED AROUND AND MY PULSE OX HAD CLIMBED UP TO 64.

I could see increase the EPAP minimum from 4.0 cm to 6.0 cm, but if you have somehow PREVENTED EPAP from increasing I could see IPAP then running up to the maximum. But that machine is different then what we are used to here so it is all greek to us. EPAP 5, MIN IPAP 9, MAX IPAP WAS 14 AND I HIT 14, STAYED THERE A SHORT PERIOD OF TIME. THEN I RAISED IT TO 17 AND HIT 17...IT STAYED THERE, SAME WITH 20, THEN 25, THEN 30 AND I AM STILL HITTING 30...STAYING THERE A MINUTE OR TWO OR THREE, THEN DROPPING SOME...ON THE DATE IN QUESTION IT WENT TO ABOUT 23, THEN BACK UP TO 30...STAYING THERE A FEW MINUTES.

Could also be that the machine has a firmware/software problem and IS wigging out. I don't even know what the EncorePro daily report looks like with that machine. NO. I SENT THE PDF FILE TO RESPIRONICS, ASKING ONLY IF THE PROGRAM APPEARED TO BE ACCURATE. THEY CANNOT COMMENT ON A PROGRAM THEY AREN'T SUPERVISING, BUT THE NUMBERS I SENT THEM LOOKS LIKE THE PROGRAM RESPONDED EXACTLY AS IT WAS DESIGNED TO DO. AFTER TALKING TO A COUPLE OF RTs, READING THE MANUAL AGAIN, IT LOOKS LIKE THE MACHINE AND PROGRAM WERE PERFECT.

Respironics should be able to assist your doctor in setting up that machine properly. NO ONE IN THE SACRAMENTO AREA HAS HAD THE "IN SERVICE", AT LEAST THAT I CAN FIND. BUT I DID HAVE ASSISTANCE IN SETTING IT UP.
If you have data on a SmartCard they should be able to read that data and suggest changes to improve it. I HAVE THE DATA, IT DOWNLOADED AS A PDF FILE. I SENT IT TO JAMES SKINNER, A COUPLE OF RTs AND RESPIRONICS. PLEASE REMEMBER RESPIRONICS SELLS TO DMES AND NOT YOU AND I. ANY ASSISTANCE FROM REPIRONICS IS ABOVE AND BEYOND THEIR OBLIGATION TO ME.

My understanding is that machine's main goal is to stabilize your breathing, by doing so the central apnea associated with your disorder go away on their own. It sounds like now the machine settings are so messed up the machine cannot find that (i.e. put the machine back to the default settings). IF YOU ARE INTERPRETING IT THAT WAY, IT IS PROBABLY MY FAULT, I WROTE SOMETHING SLIGHTLY OUT OF CONTEXT OR SOMETHING. THE MACHINE PUT MY BREATHING RATE AT 7-9...I GUESS BETWEEN THE APNEAS, CSR AND ........
AND I FEAR VCD, THE MACHINE NEEDED 30 TO GET THE AIR IN ME.

I would also be asking the doctor if use of the heliox/oxygen should be used with the machine. Like I said I could be all wrong and you need that heliox because you dive at 1200 feet. MY DOCTOR PRESCRIBED BOTH OXYGEN AND HELIOX. NOT SPECIFICALLY FOR THIS MACHINE. WHILE I AM CERTIFIED PADI, I DON'T DIVE ANYMORE. 80%HELIUM AND 20% OXYGEN IS HELIOX USED FOR VOCAL CORD DYSFUNCTION AND WITH PEDIATRICS. THE HELIOX GETS OXYGEN THRU TIGHT PLACES. I CAN TELL YOU BEFORE HELIOX I WENT IN AMBULANCES TO SPEND THE DAY IN THE CRITICAL CARE WARD.

MY THOUGHTS ABOUT USING THEM WAS HAVING SOME WAY TO INJECT A MEASURED AMOUNT OF HELIOX INTO THE "HOSE" LEADING TO MY SWIFT II.
I WAS STRICTLY BRAINSTORMING. I MAY HAVE UNINTENTIONALLY MISLED SOMEONE, BUT IT WAS BRAINSTORMING ON SOME WAY TO RELIEVE THE HIGH PRESSURES. LET ME SAY IT ANOTHER WAY, IF I CAN GET HELIOX INTO MY VOCAL CORDS, IT USUALLY RESCUES ME AND I WOULD NOT NEED SUCH HIGH PRESSURES.

ALL OF THAT THEORY IS BASED ON VCD KICKING IN, FORCING THE SV TO USE A PRESSURE OF 30 TO GET PAST MY VOCAL CORDS. PURE GUESSING ON MY PART.

OZIJ - THAT PICTURE IS MY UNIT.

DSM -NO SIR, NO ADDITIONAL AIR LINES OR SENSORS THAT I KNOW OF.

By looking at the Encore Pro print out, then reading the manual, then going back to look at it again, I think the machine acted flawlessly. It is designed to put my breathing at 7-9 per minute, it established my Peak Flow very close to previous readings, tidal volumes went up from the 500s to around the 700s...I wish I understood it all.

I felt the same way yesterday as I did Monday...sleepy, groggy, can't stay awake..THEN I remembered Monday night/Tuesday morning and I took 40 mg of prednisone. BANG!! I started breathing better. Darned prednisone rescues me every time.

The only change, other than the prednisone, is a 6 ft hose I now use.

I am hoping something I say here will jog someones memory.

Lung damage is pretty certain....I was exposed to SARS on a cruise ship,
Agent Orange in South East Asia, we sprayed the aircraft down (fogged them) when landing in foreign countries (using DDT)....with my swimming pool empty one day, I poured something like 5 gallons of liquid chlorine on black algae. When that didn't work I poured about 5 gallons of muratic acid on it. I walked around the house for a minute or two. Coming back into the backyard I felt like I was hit in the chest with a 2x4. I fell down, but some instinct warned me to hold my breath and crawl for the corner of the house.
I had created ...what do they call it...sulphuric acid?? No...hydro-chloric acid? I rode my Husquvarna dirt bike in an area with asbestos all over it. The military fogged areas with a machine ...so thick you couldn't see you own hands.

Oh well, some times you eat the bear and sometimes the bear eats you.

hate to say it but you are a basket case, you only want to hear what you want to hear.

1. You say you use Heliox for VCD yet you have NEVER been diagnosed with that. I know what heliox is and what it is commonly used for.

2. You increased the pressure limits of your machine and then wonder why it went to 30 cm, all because you "think" you have VCD. Bad move on your part, increasing the pressure probably did nothing but increase the frequency of the centrals seen. Again, you are still trying to fix VCD and you have never been diagnosed with it.

You cannot self-diagnose yourself with VCD. It is not a common disorder, in fact it is probably more rare than common. That has to be done by a qualified and experienced ENT using a fiberscope they also have to examine it without triggering your gag reflex.

My opinion: You completely miss the boat on your disorder, you have no regard for your CO2 retention and how that plays a part with your respiration. Flush out too much CO2 either with mask, oxygen or other means and you will have a central apnea. Why do you think your body stops breathing? Most likely too much CO2 is being flushed out of your system so the body stops breathing so those levels build back up. Why did NJC pump CO2 into you? probably for the same reason.

Have you not absorbed anything from that CSDB thread? Everything you seem to be doing above (use of a swift, heliox, oxygen, machine settings) all seem to be going against the grain of what you should be doing.

You seem to be doing the complete opposite of what you should be doing to control your disorder. Understand one concept, you need some CO2 (not too much) in your system. When those levels get too low you will stop breathing (aka central apnea). In other words, when you want the body to do something you fake it out into thinking there is an imbalance and it will try and compensate for it. Lets say you are flushing too much CO2 out of your system, the body will try and compensate for that with a central apnea (that neurological disorder excuse and we don't know is all BS if you ask me). Your body is functioning the way it should be functioning in the presence of that low CO2 condition, it stops you from breathing so those levels can build back up. One way to reverse that was to manipulate the CO2 levels by use of a mask that retains more and with more dead space. Well the swift exhausts more than most masks, it has NO deadspace to speak of and as I said in the first post will function like a vacuum cleaner to suck CO2 out of your lungs. If it does that you are going to have more centrals.

You should be using the pressures and settings by NJC, they can see things you cannot, if they had your pressure limited it was probably done for a reason, and you are probably seeing that now, it makes your condition worse not better.

You need to talk to your Pulmonologist, if he doesn't know what settings are needed to stabilize your condition the Respironics Regional Manager can contact him and/or stop by and suggest to your doctor what needs to be done. They are more likely to show up and respond to a doctor's request than they are for a RT or a DME.

There is a reason I said in the beginning some things don't sound quite right here, and now I understand why.

How do you know you are having problems with VCD? How do you know if those are not simply central apnea? How do you know that you need pressure up to 30 cm to blow through them?

You don't.

Central apnea generally doesn't respond at all to pressure in fact they usually get worse from it. So what are you doing? You are letting it go higher, all the way to 30 and then wonder why. That's why they have these special new SV machines, they do a better job at avoiding any response to central and concentrate their efforts with ventilation and stabilizing breathing, because when they do that centrals go away on their own.
In other words they manipulate your respiration so they go away. These machines still cannot treat central apnea directly, they can manipulate and/or create the conditions where they go away on their own. It is not like a obstructive apnea where the pressure splints your airway open, and that is your train of thought as I read it in the above thread.

I also wouldn't put a lot of weight in those EncorePro reports. About the only thing you should be taking away from those is the quantity of vents have gone down. If they have gone UP, you may NOT need to increase pressure to get them to go down. Stabilize breathing and the number of events seen on your report should go down. If they go up you may have gone the wrong direction.

You need to talk to your doctor if you truly need that oxygen and heliox, not somebody on the internet. If not mistaken, some studies suggest oxygen only makes that condition worse. Here you are using it for VCD.

You don't need to respond to everything I said, just understand the thought process behind it, because what you are doing clearly isn't working. The reason I asked the questions was I don't think any doctor knows you are using those supplements with the machine, either that or they don't understand the disorder enough to know it is a problem particularly with that machine and what you are trying to accomplish with it. If you need the oxygen for your heart or COPD, then that is fine, but my guess is those items are making your respiration more erratic with use of the machine. Probably by themselves (without the machine) they are fine, but incorporate the machine into the picture and it wants to manipulate your respiration to stabilize it but the supplements may be throwing a monkey wrench into the picture.

I would go back and set the machine to default, bump it up from the Minimum of 4 to maybe 6 or follow the guidelines given to you by NJC. I would also try another mask like a UMFF which has more dead space and won't flush out so much CO2 as the Swift.

Does that machine have a PS setting or Pressure Support setting? If so I'd bet money you have it on 8 or the maximum. Probably the worst setting you could use, if it has it put it down to 3 or 4 maximum It should have a built-in minimum of 2 so there is nothing you can do about that. Next I would limit IPAP to 4 points above your highest found EPAP at either NJC or found automatically by the machine you mentioned above. I would try and limit EPAP from increasing or being pulled up past 9 or 10 cm. That means if you use a PS=4 and a IPAP=13 then IPAP cannot pull EPAP up past 9 cm. If events driven cause EPAP to increase independently it will still do that, but on that machine it will look more carefully at that event (and current pressure and event history) before it increases pressure. So my suggested settings are:

IPAP Max=13
EPAP Min=6
PS=4 (3 or 4, 4 maximum).

If you have a backup rate I would error on the shorter side than longer.

[dsm]

Dave,

In all seriousness you need to be talking to your RT(s), not soliciting amateur opinions from us here.

We will probably kill you faster with our good intentions than all the unfortunate accidents you have already experienced.

You owe it to yourself to not get any more confused by us.

Good luck

DSM

(PS I was really quite a bit concerned about your longevity until I saw your latest reply - glad you are still with us - now just go get the professional help you really need - My friend, please stay with us a lot longer )

[dllfo]

hate to say it but you are a basket case, you only want to hear what you want to hear. BASKET CASE? MAYBE. ONLY HEAR WHAT I WANT TO HEAR? I DON'T THINK SO....

1. You say you use Heliox for VCD yet you have NEVER been diagnosed with that. I know what heliox is and what it is commonly used for. I AM NOT SURE WHERE YOU GET THE IDEA I HAVE NEVER BEEN FORMALLY DIAGNOSED WITH VCD. I HAD NEVER HEARD OF IT UNTIL MY PULMONOLOGIST DID THE BASIC STUDIES, PFT, PST, METHCHLOMINE CHALLENGE TEST, ETC. IT WAS FROM THE METH. CHALLENGE TEST THAT HE FIRST SUSPECTED VCD. I WAS SENT TO A SPEECH PATHOLOGIST WHO HOOKED ME UP AND DID SEVERAL THINGS TO DETERMINE I HAVE VCD. THAT IS 2 FOR 2. AS FOR ME, I AM NOT A DOCTOR, BUT WHEN I FINISHED TALKING TO MY WIFE AND COULD NOT INHALE...TOOK 3 STEPS AND PASSED OUT....VCD WOULD EXPLAIN THAT. ONCE YOU PASS OUT, ALLEGEDLY, YOUR VOCAL CORDS RELAX AND ALLEGEDLY YOU BREATHE NORMAL AGAIN.

2. You increased the pressure limits of your machine and then wonder why it went to 30 cm, all because you "think" you have VCD. Bad move on your part, increasing the pressure probably did nothing but increase the frequency of the centrals seen. Again, you are still trying to fix VCD and you have never been diagnosed with it. SEE ABOVE.

You cannot self-diagnose yourself with VCD. It is not a common disorder, in fact it is probably more rare than common. That has to be done by a qualified and experienced ENT using a fiberscope they also have to examine it without triggering your gag reflex. I DON'T KNOW OR CARE IF IT IS COMMON OR RARE. I HAVE BEEN TO TWO ENTS, DID A BRONCHOSOCOPY
AND SEVERAL OTHER THINGS AT NJC THAT I CANNOT REMEMBER. I NEVER, EVER SELF DIAGNOSE. I ASK QUESTIONS. I TRY TO TAKE WHAT THE DOCTORS HAVE TOLD ME....AND LEARN FROM IT.

My opinion: You completely miss the boat on your disorder, you have no regard for your CO2 retention and how that plays a part with your respiration. Flush out too much CO2 either with mask, oxygen or other means and you will have a central apnea. Why do you think your body stops breathing? Most likely too much CO2 is being flushed out of your system so the body stops breathing so those levels build back up. Why did NJC pump CO2 into you? probably for the same reason. YOU ARE CORRECT WHEN YOU SAY I HAVE NO REGARD FOR CO2 RETENTION. I ASKED THAT QUESTION ONCE AND WAS TOLD I WAS OK AT THAT TIME. YES, I KNOW WE NEED A BALANCE OF CO2 AND OXYGEN.

Have you not absorbed anything from that CSDB thread? Everything you seem to be doing above (use of a swift, heliox, oxygen, machine settings) all seem to be going against the grain of what you should be doing. SNOREDOG, HAVE YOU NOT LISTENED??? I HAVE NOT USED HELIOX OVERNIGHT, NEVER, EVER. I HAVE USED OXYGEN PRIOR TO THE HEART IMPLANT, NOT MUCH SINCE. IF MY PULSE OX IS LOW, I MONITOR IT AND MAY OR MAY NOT ADD OXYGEN TO THE MIX UNTIL IT IS ABOVE 90 AGAIN.


You seem to be doing the complete opposite of what you should be doing to control your disorder. Understand one concept, you need some CO2 (not too much) in your system. When those levels get too low you will stop breathing (aka central apnea). In other words, when you want the body to do something you fake it out into thinking there is an imbalance and it will try and compensate for it. Lets say you are flushing too much CO2 out of your system, the body will try and compensate for that with a central apnea (that neurological disorder excuse and we don't know is all BS if you ask me). Your body is functioning the way it should be functioning in the presence of that low CO2 condition, it stops you from breathing so those levels can build back up. One way to reverse that was to manipulate the CO2 levels by use of a mask that retains more and with more dead space. Well the swift exhausts more than most masks, it has NO deadspace to speak of and as I said in the first post will function like a vacuum cleaner to suck CO2 out of your lungs. If it does that you are going to have more centrals. SORRY, I DON'T REMEMBER WHAT NEUROLOGICAL DISORDER YOU ARE SPEAKING OF.
I HAVE SAID MORE THAN ONCE, A FF MASK DOESN'T WORK WELL WITH ME AS I EXPEL SPUTUM 24/7. I TRIED IT ONE NIGHT AND WENT TO A NASAL MASK.
EVERY TIME THE SPUTUM CAME UP, I WOULD EXPEL IT AND THEN HAD TROUBLE GETTING THE MASK TO SEAL WITHOUT 'WAKING UP" COMPLETELY.

You should be using the pressures and settings by NJC, they can see things you cannot, if they had your pressure limited it was probably done for a reason, and you are probably seeing that now, it makes your condition worse not better. NJC NEVER, EVER, EVER GAVE ME ANY SETTINGS.

You need to talk to your Pulmonologist, if he doesn't know what settings are needed to stabilize your condition the Respironics Regional Manager can contact him and/or stop by and suggest to your doctor what needs to be done. They are more likely to show up and respond to a doctor's request than they are for a RT or a DME. I HAVE TALKED WITH MY PULMONOLOGIST, HE HAS A COPY OF THAT REPORT. I CAN ASK HIM TO CONTACT RESPIRONICS, SEE IF HE HAS TIME. I CAN'T TELL YOU EVERYTHING I HAVE BEEN TOLD BECAUSE I PROMISED I WOULD NOT QUOTE RESPIRONICS PEOPLE ON HERE. I HAVE SPOKEN WITH THEM. I HAVE TRIED TO ...KEEP THAT PART OUT OF THE CONVERSATION BECAUSE THEY DEAL WITH DMES, ETC. THEY ARE NOT SET UP TO DISCUSS ALL THIS WITH CUSTOMERS. I EVEN ASKED IF THEY ARE HAVING AN INSERVICE IN THIS AREA WHERE I MIGHT BE ALLOWED TO "AUDIT IT" NO ANSWER YET.

There is a reason I said in the beginning some things don't sound quite right here, and now I understand why. I THINK EITHER YOU OR I HAVE MISCOMMUNICATED. BASED ON YOUR ASSUMPTIONS ABOVE, YOU HAVE MISUNDERSTOOD A LOT OF WHAT IS GOING ON WITH ME.

How do you know you are having problems with VCD? How do you know if those are not simply central apnea? How do you know that you need pressure up to 30 cm to blow through them? I AM NOT A DR. -- ABOUT THE ONLY WAY TO ANSWER SOME OF THESE QUESTIONS WOULD BE FOR ME TO SPEND SEVERAL NIGHTS IN A SLEEP LAB I GUESS.

You don't. NO, YOU DON'T KNOW. YOU HAVE SOME HOW COME UP WITH A GOOD EXPLANATION, INDICATING YOU ARE FAIRLY INTELLIGENT AND KNOWLEDGEABLE IN THIS ARENA, BUT SOMEHOW HAVE MISREAD WHAT IT GOING ON WITH ME. DO I HAVE VCD? A DR, TESTING AND A SPEECH PATHOLOGIST THINK I DO. I AM NOT SURE IF THERE IS ANY ONE WAY TO SAY A PERSON HAS VCD, ONLY TESTS POINTING TOWARDS IT.

Central apnea generally doesn't respond at all to pressure in fact they usually get worse from it. So what are you doing? You are letting it go higher, all the way to 30 and then wonder why. That's why they have these special new SV machines, they do a better job at avoiding any response to central and concentrate their efforts with ventilation and stabilizing breathing, because when they do that centrals go away on their own.
In other words they manipulate your respiration so they go away. These machines still cannot treat central apnea directly, they can manipulate and/or create the conditions where they go away on their own. It is not like a obstructive apnea where the pressure splints your airway open, and that is your train of thought as I read it in the above thread. MY THINKING MAY HAVE BEEN FAULTY ON INCREASING THE PRESSURE. PARTLY...I WAS CURIOUS AS TO WHY IT KEPT GOING UP. AND HOW HIGH DOES IT HAVE TO GO TO OVERCOME "THE" OBSTRUCTION...----I WILL TRY TO RE THINK THIS AND GET BACK TO YOU.

I also wouldn't put a lot of weight in those EncorePro reports. About the only thing you should be taking away from those is the quantity of vents have gone down. If they have gone UP, you may NOT need to increase pressure to get them to go down. Stabilize breathing and the number of events seen on your report should go down. If they go up you may have gone the wrong direction. THOSE REPORTS WERE DESIGNED FOR MEDICAL PERSONNEL TO USE IN DIAGNOSING OUR PROBLEMS....NO? I WISH I HAD PERMISSION FOR FULL DISCLOSURE ON WHAT I HAVE BEEN TOLD, BUT I SAID I WOULD NOT DO THAT WITHOUT THAT PERSON'S PERMISSION.

You need to talk to your doctor if you truly need that oxygen and heliox, not somebody on the internet. If not mistaken, some studies suggest oxygen only makes that condition worse. Here you are using it for VCD. I AM BOUNCING IDEAS OFF YOU, NOT ESTABLISHING MY MEDICAL TREATMENT. I THINK MANY PEOPLE HERE HAVE A LOT OF INSIGHTS TO OFFER. NO ONE, AND I MEAN NO ONE SETS MY MEDICAL TREATMENT BUT MY PULMONOLOGIST OR THE DOCTORS AT NJC. NO ONE. LET ME REPHRASE THAT, BACK WHEN I STARTED WITH THE BIPAP AUTO, I CHANGED SOME SETTING OF PRESSURE A SMALL AMOUNT, EXPERIMENTING A LITTLE. IT FELT BETTER AND I SLEPT BETTER. I SHOWED THIS TO MY DOCTOR AND HE SAID FINE. HE ALSO TOLD ME WHAT AREAS TO LEAVE ALONE.

You don't need to respond to everything I said, just understand the thought process behind it, because what you are doing clearly isn't working. The reason I asked the questions was I don't think any doctor knows you are using those supplements with the machine, either that or they don't understand the disorder enough to know it is a problem particularly with that machine and what you are trying to accomplish with it. If you need the oxygen for your heart or COPD, then that is fine, but my guess is those items are making your respiration more erratic with use of the machine. Probably by themselves (without the machine) they are fine, but incorporate the machine into the picture and it wants to manipulate your respiration to stabilize it but the supplements may be throwing a monkey wrench into the picture. I THINK YOU HAVE A LOT TO OFFER AND I WILL READ THIS THREAD A FEW MORE TIMES.

I would go back and set the machine to default, bump it up from the Minimum of 4 to maybe 6 or follow the guidelines given to you by NJC. I would also try another mask like a UMFF which has more dead space and won't flush out so much CO2 as the Swift. FF MASK IS OUT FOR ME.

Does that machine have a PS setting or Pressure Support setting? If so I'd bet money you have it on 8 or the maximum. Probably the worst setting you could use, if it has it put it down to 3 or 4 maximum It should have a built-in minimum of 2 so there is nothing you can do about that. Next I would limit IPAP to 4 points above your highest found EPAP at either NJC or found automatically by the machine you mentioned above. I would try and limit EPAP from increasing or being pulled up past 9 or 10 cm. That means if you use a PS=4 and a IPAP=13 then IPAP cannot pull EPAP up past 9 cm. If events driven cause EPAP to increase independently it will still do that, but on that machine it will look more carefully at that event (and current pressure and event history) before it increases pressure. So my suggested settings are:

IPAP Max=13 (I HAVE TWO IPAP SETTINGS)
EPAP Min=6 I THOUGHT IT WAS ON 6, SOMEONE WAS ON 5
PS=4 (3 or 4, 4 maximum). ????

If you have a backup rate I would error on the shorter side than longer.
THE BACKUP RATE, IF I UNDERSTAND WHAT YOU ARE SAYING IS ON AUTO.

GOTTA GO TO CHURCH, BACK LATER...THANK YOU FOR TAKING YOUR TIME TO TRY TO HELP ME....I REALLY APPRECIATE IT.

[dllfo]

RosemaryB, thank you for the kind words, I appreciate them.

DSM,
With the Respironics BiPap Auto I listened a great deal, tried to digest what would help me and used that portion. AFTER coordinating with my doctor or
RT.

With the Respironics BiPap Auto SV, it is so new, no single entity has all the answers. Theories - yes. Answers. No. Most don't even have one answer.

I am trying to research articles like the "Bilevel Positive Airway Pressure Worsens Central Apneas During Sleep." written by Karin G. Johnson and Douglas C. Johnson.

Snoredog either misinterpreted what I wrote, or I expressed myself poorly,
regardless, he is close to the truth for the scenario he described.

Just in case, one more time...I have not used heliox with my SV. I have used oxygen a few times. I wish I could set this machine up so that any time my pressure goes up past 15 (as an example) I could receive a low pressure input of heliox for an appropriate length of time. AND YES, I HAVE BEEN TOLD I HAVE VCD. I have had GERD wake me up in the middle of the night many times. I go get Mylanta & it passes. GERD will bring on VCD...there is a link there. I am trying to say my system perceives acid reflux is coming up from the esophagus, so the vocal cords protect the lungs by closing. If the SV perceives there is "some" obstruction, it puts more pressure out. NO ONE HAS BEEN ABLE TO TELL ME WHY THE SV WOULD GO UP TO 30. NO ONE. The only major obstruction I know of is VCD. I hope that helps explain why I am attributing these high numbers to VCD.

Don't lose sight of the fact I had relatively smooth numbers for about 6 weeks. Then, on Oct 15th the SV earned its keep.

My blood gases were checked a lot in Denver. I don't remember them being "off" at any time. Except when they were deliberately manipulated during a test.

Before I forget, Snoredog really hit the nail on the head, I am a basketcase.
and no one can figure out why. I know why my back and pelvic floor are damaged, I put my Chevy Truck between a small Saturn and 75mph traffic and I got nailed twice. It was worth it, a young mother and her baby are doing fine, otherwise the CHP said they would have been killed. My carpal tunnel comes from a compressed disc in my upper spine if I remember correctly, my hearing is shot from too many years in a KC-135, my teeth and gums are in bad shape because I drank drano when I was 3, I also have GERD from ....the drano I guess. I have never eaten anything spicy, smoked, drank booze or even Robotussin cough syrup. Yes, I am a basket case. I am looking for a top notch spinal surgeon on the west coast, a top notch urology surgeon..oh....did I mention I have to set an alarm so I know I have to relieve myself of the tea I drank? My bladder is inop, probably tied to the time my pelvic floor got messed up. There are other things, but civility precludes discussing them in public forums.

BUT my wife. kids and grandkids love me, my service dog loves me and I am so lucky. So many people feel unloved and they are the ones I feel sorry for. Hey, it could always be worse. (And sure enough, it got worse

Thanks to those of you who took time to read the thread. I guess I was hoping others might have used this machine and discovered a reason for it to hit 30 and stay there. Don't loose sight of the fact the SV kept me breathing for that time. It gets an A+ from us.