Anyone else hitting 30 cmH2O?

[dllfo]

I asked this question a couple of years ago and no one else had hit it. I am going in for another sleep study and maybe back to Denver for more testing, but this group is quite varied and if you have hit 30, do you know why?

My personal record was about a month ago where I hit, and held 30 for over an hour, with the Patient Triggered Breaths at, or near zero during that time. Later the same night I hit 30 again and stayed there awhile. Wish I knew why.........

[6PtStar]

30 cm/h2o ouch, that is a bit high. Hard for me to imagine since mine only goes to 20. I hit 17 one time and it blew my mouth open. I wish you luck!!

Maybe some one put super glue on your tongue and it took 30 to break the seal!! Sorry, but it is the only thing I could think of that would make it go that high.

Jerry

[dsm]

I asked this question a couple of years ago and no one else had hit it. I am going in for another sleep study and maybe back to Denver for more testing, but this group is quite varied and if you have hit 30, do you know why?

My personal record was about a month ago where I hit, and held 30 for over an hour, with the Patient Triggered Breaths at, or near zero during that time. Later the same night I hit 30 again and stayed there awhile. Wish I knew why.........

Dave

That is because you really need 2 ASV units wired in parallel & possibly 2 more placed in series with the 1st two

You just stop breathing, & the machine works its tail off trying to keep you inflated - you really are amazing
that you can get by with just an ASV.

I suspect that during those bouts of 30 CMs max Pressure, the machine is doing all the breathing.

DSM

[Breathe Jimbo]

Wow, that's high! Do you need to lose weight?

[dsm]

Wow, that's high! Do you need to lose weight?

Dave has an amazing story starting with swallowing a bottle of 'drano' as a kid.

His lungs would be a respiratory specialist nightmare (trying to figure out what works & what doesn't).
But Dave just keeps keeping on (he is no spring chicken) - doesn't need to lose any weight, just needs
to keep breathing.

Dave is inspirational to any of us who feel hard done by with our SDB challenges.

DSM

[dllfo]

Jerry, I weigh around 200 pounds, 5'9" to 5'10" depending on who is measuring. USAF Flight Physicals had me at 5'10". Could I stand to lose weight? You bet, but the Prednisone and other Corticosteroids mess me up on weight control.

My Respiratory system is bad enough that when I pulled my right bicep muscle off the bone (Distal Tendon Rupture I think they call it), the anesthesiologist refused to sedate me so they could sew it back on. After talking with the surgeon (I was on the gurney at 5am, ready to go), they said the "Incremental increase in functionality is not worth the risk of sedation or even a local in that area...", so I have a messed up right bicep. Frustrating. BTW, I took over 300,000mg of antibiotics between Feb 2007 and Feb 2011, including lots of Levaquin and Cipro....add corticosteroids to that and the USA FDA said I was at risk for damage to the tendons. Quinolone antibiotics are being watched carefully. http://www.medicationsense.com/articles ... 52205.html I take the time to mention this because of my lung infections. This is just one article. Be aware of the problem.

DSM, I have now hit 30cmH2O on at least 3 different SV units, so it must be correct. And the number of breaths drops from my usual 18 to around 8 per minute, which I think is where the SV is supposed to take you. I look at the pressure, number of breaths per minute and Patient Triggered Breaths for verification on what kind of night I had. Odd thing is, I don't know about it until I check the smart card the next day. No pain, etc.

While I don't wish these numbers on anyone else, it would be nice to hear some input from others as to why they are so high. DSM is correct, after many weeks of testing at the National Jewish Hospital in Denver, CO ---- I have some unusual characteristics. They ran my pulse-ox down to 18, which I am told is 15 when adjusted to sea level.......and I did not know I was low on oxygen. My chest felt warm, but other than that I carried on a normal conversation with the room full of doctors. See CCHS.

How many members do we have now? 20,000+ on the forum? Seems like someone would have a similar problem and maybe have found a cure. Thanks for your time.......Dave

[Breathe Jimbo]

Dave, I wasn't suggesting you are fat. (I am.) I was just thinking that since you are maxing out on pressure, you might need to do something else to need less pressure. (My pressure needs have decreased a little as I've lost about 22 pounds; another 80 to go.) Just thinking out loud.

[archangle]

Geez, what do the bilevel/ventilator machines do when you reach the top of the range? Or when the leak rates get so high, it's obvious they've blown the mask off? It seems that at some point, they should have some sort of "alarm clock" feature that says, "Hey, wake up and breathe, you're about to suffocate."

[dsm]

Dave

Just as a reminder can you post your recent charts. Also - the software should support your Bipap AutoSV Advanced. If you were using a new PR1 ASV I think you need the latest version of the software.

Cheers

DSM

[dsm]

Below is one of Daves charts (the really bad one - hitting 30).

It is interesting in that Dave is not exaggerating at all about how long the machine stays at 30 CMs trying to keep him breathing.
It should produce some interesting discussion. There are some unusual aspects to the settings and the data.

As a reminder, Dave is under specialist treatment so the intention here is not to get him dial-winging, but to raise questions he can ask his specialists.

DSM

[dsm]

Daves chart 2 - a lot better than chart 1. But still hitting 30 CMs for extended time.

DSM

[dsm]

The 1st thing that is clear from Dave's 1st chart is that the Bipap Auto SV allows raising pressure by a far larger margin than the Resmed S9 ASV. The S9 ASV is I believe, capped at 15 over epap. If anyone has any info that shows this can be set higher, pls post it.

Dave has his min ipap set at 8 but max set at 30. That allows the machine to ramp up 22 CMs of pressure from the low of 8 CMs. That is a fair whack.

DSM

#2 Changed '15 over ipap' to read '15 over epap'

[dsm]

Questions I have asked Dave re his settings include, did your doctor *really* set your epap to 5 & ipap to 8 ?
Did you change any settings suggested by your R/T ?

Reason I ask is that Dave can clearly handle 30 CMs & survive, so why such a low epap & ipap. If Dave
himself set those values my advice would be to check immediately with his R/T as to the validity of them.

If it was Dave's R/T who set those values it would be informative to hear the rationale. In Dave's case
any thing is possible, but the fact he can be hit with repeated pressure cycling bursts of 5CMs (breathing
out) followed by 30 CMs (breathing in) is just extraordinary.

DSM

[dllfo]

DSM, I am not functioning 100% right now, have had an attack of Atypical Trigeminal Neuralgia, and I have taken 600mg of Tegretol so far, trying to mitigate the pain. For those of you who are not familiar with ATN, it could be compared to have 15 tooth aches at the same time. 5 on the upper right, 5 on the lower right and 5 in the upper left side of your mouth. Being really candid with you, sometimes I just sit and cry until the Tegretol "catches up" with the pain. It is intense.

The lower pressures, if I remember correctly, were from our original SV settings back in 2007. When my DME got my prescription they told me they could not get the machine for me because they were not trained in it. I told them to honor the prescription and my doctor and I would set the pressures. I gave them a blanket waiver, signed in blue ink, that they were NOT liable for the settings on my SV because my doctor and I were setting them. I got my machine the next day. I think we used the great info from you, RG and ..... maybe some one else. We worked on it and got reliable settings for me. I can change the settings any time I deem necessary, but will sit down with my Pulmonologist first. He is reknown world wide. If you googled his name, you would get thousands of hits. He travels world wide giving lectures. I think I am his pet project. We love him a lot.

Back to your question about setting the EPAP and lower IPAP, can do. Will try it. BTW, if you think these readings are challenging, you should have seen those I got in my first few days at Lake Tahoe. We camped at about 6250 feet. I was on oxygen almost 24/7 the first ten days or so.

I am hoping at least one person reading this might have an answer for us. You guys have been a big help.

[dllfo]

Oh yeah, sleep at night? My normal cocktail is 328mg of Quinine for Nocturnal Leg Cramps, 400mg of Tegretol, 15mg of Oxycodone for rib pain and coughing, 8mg of Rozerem and some nights, 400mg of Celebrex. With luck I can sleep over 4 hours. Some nights I get 29 minutes, or 9 minutes before I am wide awake.
I usually wake up from the ATN. It is really awful. If I REALLY want more sleep, I switch to Lunesta and throw in a couple Flexeril. For rib pain I take up to 60mg of Oxycodone, then go to bed and don't move. On the McGill Pain chart of 1-10, I put the Rib Pain and ATN at 8-10. If the house were on fire I am not sure I could get out. I would hope the Adrenalin would over ride the pain, but I don't know that for sure.

Thanks again for your help.....Dave