I breathe too shallow to "trigger" my oxygen regul

Anyone else have this problem?

Along with all my other problems, my wife watched me breathing today and my attempt to breathe was too shallow to trigger the regulator on my M-6 bottle. It was set at 2 LPM. I did ok on continuous flow.

Have any of you ever heard of a condition like this?

Luckily my SV forces air in me, breathing or not.

with your condition, I would think you would want continuous flow anyway?

and there probably won't be many like yours, your case is the screwiest case we've ever seen (just kidding!)

but that shallow breathing makes sense.

You are right, and I am not offended, my case is beyond weird.

I have emergency calls into 3 specialists right now. Another Echocardiagram with agitated saline to check my heart.

A Ventilator I can take with me. I am considering putting my SV in the car.
My Avalon has a built in inverter, so I can run the SV while driving...hmmmm,
wearing the mask might cause some funny looks.

I DO need continuous oxygen, but we only had a small bottle (M-6 I think).

I had the best nights sleep (last night) .... the best in a couple of weeks. My
Apnea was 1.0 --- I have had Apnea scores from 12-14 to 47.2. So 1.0 looks great to me.

I will let you know what happens.

What is the smallest ventilator made? Portable I hope.

> my attempt to breathe was too shallow to trigger the regulator on my M-6 bottle.

What model of *pap machine do you have?
What pressure?

You may need bipap.

dllfo wrote:You are right, and I am not offended, my case is beyond weird.

I have emergency calls into 3 specialists right now. Another Echocardiagram with agitated saline to check my heart.

A Ventilator I can take with me. I am considering putting my SV in the car.
My Avalon has a built in inverter, so I can run the SV while driving...hmmmm,
wearing the mask might cause some funny looks.

I DO need continuous oxygen, but we only had a small bottle (M-6 I think).

I had the best nights sleep (last night) .... the best in a couple of weeks. My
Apnea was 1.0 --- I have had Apnea scores from 12-14 to 47.2. So 1.0 looks great to me.

I will let you know what happens.

What is the smallest ventilator made? Portable I hope.

You mean after what you have been through, your cardiologist has never performed a TEE on you in the past to check for a PFO??

That was one of the very first tests my Cardiologist performed, they knock you out for that test due to discomfort and gag reflex. They feed a transducer down your esophagaus and image the heart from the back side, then they inject a saline solution into a vein in your arm and can see the bubbles created as they pass through the heart, if you have a PFO (Patent Foramen Ovale) those bubbles can pass thru the atrial septum. If you do have a PFO, UCSF Cardiology helped develop the CardioSeal a little parachute device inserted to seal the hole.

Here is more on the procedure:
http://www.clevelandclinic.org/heartcen ... al/pfo.htm

Maybe you need to check out the Cardio group in San Ramon (San Ramon Medical Center) part of Cardiovascular Consultants, they have only top-notch Cardiologists on their staff, their Cardiology Director is one of the leading Cardiologists in the nation.

When I went there the first time, an elderly couple came driving into the parking lot and the elderly gentleman was driving for a lady who had a cardiologist appointment, we he missed the brake and hit the gas, estimate was he was doing nearly 80MPH on impact, he drove my Cardiologists BMW off the cliff and wrecked a half dozen other cars in the parking lot.

I went into my appointment as scheduled as the tow trucks were hauling off the wrecked cars, I said man what happened? They explained, my Cardiologist was laughing yeah that was "my" BMW that went off the cliff, well not exactly mine, it was a loaner or "rental", my BMW was in the shop getting serviced and they loaned me that BMW LOL.

I have read before where patients with similar symptoms as yours had a pace maker put in place and their central symptoms nearly diminished.

Here is the group I went to, I seen Devane, he is pretty good, I heard Krouse is also pretty good.

http://ccmgonline.com/our_physicians.htm

dllfo,


If you are connecting the oxygen to your SV it needs to be on continous flow. Using a conserving device (which it sounds like you are using) on a M6 tank will NOT work reliably while connected to a xPAP machine. You really should be using a stationary home concentrator that provides continous flow if you are connecting it thru your SV.

Yep, what akcpapguy said. And check w/your 02 DME they should be able to advise you on what equipment you need to make that drive - and then PROVIDE it! It would seem there should be SOME way to provide adequate power to a 3L concentrator to run in your Avalon. Maybe? Hopefully?

dllfo, what about this???

The SeQual® - Eclipse 2 Portable Oxygen Concentrator:
The only small, lightweight, low maintenance system that provides both continuous flow and pulse dose oxygen therapy consistent with accepted standards of care. The internal auto-recharge power cartridge enables easy movement between AC power outlets without interruption of oxygen therapy.

The Eclipse means extended travel without the fear of running out of oxygen. Just plug the Eclipse into your auto accessory (lighter) outlet and go as far and as long as you like. Not only can you take the SeQual® - Eclipse 2 Portable Oxygen Concentrator in your car, but you can also take it on airplanes, cruise ships, trains, buses and every other mode of transportation.

The SeQual Technologies customer service number is (800) 826-4610.

Memory is gone....too much morphine.

While at the National Jewish Hospital last summer, they found the hole/tear in my Atrial and put in the "Occluder".....PFO they may call it. I had it tested twice since I have been here and it was looking good both times.

I am on the Respironics SV unit but did not have it with me. I have CCHS. My problem, found at NJC and a Sacramento hospital is that when I quit breathing, my brain does not tell me I am not breathing or that I don't have enough oxygen. In Denver, they did a test where they ran my Pulse ox down to 18. At seal level the test is down to 15.

SeQual Eclipse 2 Portable Oxygen Concentrator. Thank you. I have the Platinum XL at home so I can take the small bottles with me. If I had a real light weight Concentrator, that might work ok.

I have all the proper hook ups for oxygen on my SV. Before Monday I did not take the SV everywhere I went unless I plan on spending the night. I goofed.

I will contact Apria tomorrow. I have 5 tooth aches right now. I have the meds to stop all 5 teeth and not hurt, but my breathing tonight will be ....
bad. On nights like this I run an AHI of 14 or so. 13 will be Apnea. My record was 47.2 right after the oral surgery. Morphine and Oxycodone will do that to me.

I run my Platinum XL on 2 LPM continuous. I have ALL the proper fittings.
Snoredog, , see above. As for Cleveland Clinic ... make sure the doctor you speak to is really doing the procedure.

XYZ - I use the Respironics BiPap Auto SV. My pressures vary. I was at 10 on EPAP, 14 on Min IPAP and 30 Max IPAP. I may be on 8 EPAP and 11 Min IPAP. I am trying to keep the pressure down right now. If you heard my machine fire off, and felt the pressure you would know what I mean. Long story. My body is tired. I even set the ramp to 40 minutes in an attempt to lower my initial pressures.

My sleep studies have diagnosed me as having everything but hang nails.

I apologize for any whining and sniveling, I am just tired. If left alone I would sleep 10-12 hours a day. My shallow breathing won't trigger my Pressure Demand Regulators. If on continuous I am ok. If I sit here watching tv, relaxed, I will have a pulse ox of 83-86 and a heart rate of 41 to 44. I was in the Critical CAre Unit about 18 months ago and the EMT had given me too much Nitrolingual. My heart rate fell into the 30s, so they put a nurse at the foot of my bed the whole day. There must be a cut off rate for that, but at least I was being watched.

There are other items but I can't remember them. RG or DSM may remember them. Thanks for your help...Dave

How about these Concentrators at

John Bunn Oxygen Concentrator
1 to 5 liters available, works best under 4 liters.

Retail Price: $1,495
Our Sale Price: $625


Invacare Home Concentrators

Platinum 5 Liter: $675


Invacare Perfecto 2 Oxygen Concentrator
5 Liter Unit

Retail: $1,495
Sale Price $695


Sequal Integra 10 Liter Oxygen Concentrator
Rated #1 of all 10 liter concentrators!

Retail Price: $2,895
Our Price: $1,275!!

I did not find the SeQual unit. I would hope for a refurb to keep costs down.

A deviated septum or nasal congestion can also make you not trigger the M6 conserving device. If you were my patient I would reccomend always being on continuous oxygen. I think that oxygen conserving devices are too risky for you. Liquid oxygen can get you more time that bottles away from your house. I have read about you condition and I must say you are truely textbook material.

KansasRT -- Hi, long time no hear........EDIT: No deviated Septum, etc. I think I told you I am on continuous flow below this post and...what else? I am truly hoping that this will at least partially go away after the last oral surgery. Man....this tooth ache has been with me a LONG time...ten day maybe. Regardless, I am having to take way to much Oxycodone. I hate that stuff but it works fast.

My Pulmonologist has been researching adult onset CCHS. I keep telling him I was born this way, but he has no proof of that, just what my mom told me. He has published a lot of articles.

I just want to know what it is.

I am on Continuous oxygen now, 2 LPM seems to work.

If anyone doubts that Pain Meds can adversely effect their breathing, I can send them my Encore Pro from last night. I got up to use the bathroom about 5:45am and my right hip and thigh would not accept any weight load. The pain was too bad to walk on that side. (A new item for me to ponder) so I grabbed the crutches I keep by the bed and went. While there I took some oxycodone and the pain subsided pretty fast, but my Encore Pro shows I was in Apnea most the night the next 3 or 4 hours.

I was doing better until the oral surgery. One more trip there and I am through, thank goodness. I think it would be more fun to floss with a
weed eater.

I am trying to keep track of the goofy things that keep happening to me, like my right hip not working last night. I keep a journal under each medical category. Speaking of each category, I gotta run. The Cardilogist is doing the Echocardigram with agitated saline.....again. He is quite concerned that it took a half hour to wake me up. Did the Occluder tear out? I doubt it.
Did it tear loosed in one corner? Maybe. Since I also have an earache with this Root Canal Tooth Ache, I will be most happy to get home today.

I was told by a good sized player in your field that one company is pulling out of the CPAP/BIPAP area. Too much liability for the profit involved.

I have orders not to nap or sleep without a ventilator being hooked up from now on.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): Encore Pro, CPAP

dllfo wrote:My Pulmonologist has been researching adult onset CCHS. I keep telling him I was born this way, but he has no proof of that, just what my mom told me. He has published a lot of articles.

Well, if he thinks it may be Congenital Central Hypoventilation Syndrome (CCHS), then he clearly suspects that you were born that way. But perhaps he suspects that your CCHS symptoms are adult-onset (or simply aggravated with adult onset).

There's a basic facial-phenotype screening test he can use that returns accurate CCHS screening results eighty-some-percent of the time. There's also a genetic PHOX2B screening test to determine CCHS as well. Below are three CCHS links that you may already know about:

http://www.cchsnetwork.org/

http://www.ncbi.nlm.nih.gov/pubmed/16327002

http://www.cchsnetwork.org/articles/CCHS%20Chen.pdf

Dllfo, I am unable to trigger my portable concentrator on pulse flow about 75% of the time. It is a pain because the battery lasts a shorter time period on continuous flow. I have some sort of neuromuscular thing where my phrenic nerve is damaged bilaterally. (it took 5 years to diagnose). The first time I flew with a portable concentrator it kept alarming and I had NO idea why. It was an absolute nightmare!

Last spring I had some pulmonary function tests that are not part of the usual package of PFT's. They are called MIP's and MEP's. Mine were way off, like 40% of predicted and thus got a diagnosis of respiratory muscle weakness. That is why I can't trigger the pulse flow, not actually shallow breathing. In your battery of testing have you ever had those done?

I now have a Sequal Eclipse to make it easier to travel. I can bring it on planes with me and know that I will have it at my hotel, whereas about 90% of the time it was never there even after careful advance ordering and double checking and all.

The Eclipse is the ONLY portable concentrator that can run on continuous or pulse flow. If you have it in pulse flow mode and don't breathe strongly enough to trigger it, it will automatically kick in to continuous after so many seconds. I think it is about 9 pounds, which is really too heavy for me, but oh well. It's not as loud as my regular concentrator and is easy to wheel around. It was quite pricey. It is still the first generation so when they come out with the next model you may be able to get one used.

It seems that you do know you have to have the O2 on continuous flow to run a cpap or bipap.

Today I went out and took my concentrator as I need O2 for some outings and prn in the evening sometimes plus at night. I tried the pulse flow and actually was able to trigger it, but I really think it wears me out much more. Maybe that is contributing to your fatigue. You also may need bipap if you aren't already on it. Cpap is contraindicated for problems like mine.

I hope this helps some and maybe you will be happy to find another pulse flow failure!

Margaret

Hi Dave,

Glad you are still posting - lets us know you are still doing your best & I think we all admire battlers.

Keep it up & I hope you get the flow sorted out soon - you need that 2 ltr/sec (maybe more ?)

DSM