Updated: Whoa! Adjusting to 18 breaths per minute?

[Naranjadia]

I have been switched from a Bipap ST to a Bipap AVAPS, because a combo PFT and blood gas draw indicated that I was holding on to too much CO2, thanks to weakening breathing muscles.

In addition to higher pressures, and a tidal volume backup (?), my pulmonologist increased my breathing rate to 18/min. My new settings are VT: 550, Ipap max 25, Ipap min 16, EPAP 6, T1 15.

I am having trouble adjusting. I feel like I am filling with gulps of air. I can barely keep my mouth shut, even when I am consciously trying.

I remember it was adjustment when I started the Bipap, so maybe this is just a normal adjustment period. But how long do you try before you say you can't hack it at these levels?

[unadog]

That is a dfficult question.

I have found with all of my Respironics machines that I have gotten good therapy with, that within 1 week or so, I find periods of time when I am not sure that the machine is on, the breathing rate and pressure and volume become so natural feeling. When I am tweaking setting, there is usually a point where that happens as I dialing in settings. My pressures, volumes, and BPM seem fairly consistent from machine to machine.

That was not true of the Resmed AVS though, that thing is a bit of a "beast." I also had trouble dialing in the breath rate on the Bipap S/T. Luckily the Bipap ASV has an "auto" setting for BPM.

My average BPM is usually around 14. But it is higher when I first lie down, so letting my body adjust before I put the mask on helped me in feeling comfortable when I had a fixed rate. Does it seem more out of sync at specific times? My BPM also goes higher in cycles during the night, probably wth REM?

Do you have data from the S/T on your actual breating rate? Did you have settings there that felt more natural? How did they decide on settings for the AVAP? Lab titration, home test, previous settings?

Madalot may be able to advise on her current status with her AVAP and whether her cmfort has improved. She went through a lot of struggles.

I do know that adequate pain meds, and the use of relaxation tapes and meditation tapes, help me to relax more and fight the machine less when I can't fall asleep for 1.0 to 1.5 hours, which is common for me. Progressive relaxation also helps me to ignore discomfort from the machine, mask, or pain so that I can sleep.

Michael

[Naranjadia]

Thank you, Michael!

On my S/T my breathing rate was set at 6/min - so this feels like a radical change to me. But as you say, there is that element of time with new settings and machines - perhaps I need to give it more time.

With the AVAP, the pulmonologist said he was going to increase pressures and have me on a machine with tidal volume. I'm not sure I know what a lab titration would be like. I've had adjustments in the past based on pulse-ox overnight at home. But in this case, he just phoned it in based on my previous settings.

My C02 was 56% in my blood-gas, so he clearly really want to jack up my expiration. I just don't know if I can sleep very well at this rate!

[unadog]

OK, so the S/T rate was just a "worst case" at 6, where it would kick in if you didn't breath at at least that rate.

Did you ever download your S/T data to Encore Pro on your own computer? I don't remember if the ST reported your actual BPM. My ASV gives me a nice graph where it tracks my actual volume and actual BPM through the night.

A "lab titration" would be where they had you sleep in a lab while they adjusted your settings. Just trying to figure out where your doc got the starting numbers from?

Si either the BPM setting or the volume setting could make you feel like you were getting "too much air." Do a search on "Madalot" and read some of her recent posts where she was trying to get her RT and doc to adjust her AVAPS. She had a combination of "these settings don't feel right", "I hate this machine", making some changes, and also trying to settle in and see if it felt better over time.

I am just trying to fill in a bit until the experts chime in!

Do you have an RT who could tweak the settings a bit to see if any felt more natural? I know trying to find the right settings on the ST was hard. When I did find what felt right when awake it wasn't right fir sleeping. But I was not as dependent on the machine, and tge risks to me from incorrect settings were small. It gets more complicated with the AVAPS!

Hang in there - there are great folks on this board who can help! You might PM Madalot if she doesn't chime in, or post for her, -SWS, etc. in one of her threads if you dint get more info.

When does the rate feel worst? Are you sleeping much with the AVAPs, or really struggling? Good luck!!

Michael

[Naranjadia]

Thanks again. I am combing through Madalot's threads - she does seem to have recently dealt with a very similar situation.

I have to admit, despite being on a Bipap for 7 years - I am a total newbie in some senses. How do people learn that they can download their data on their own computer? In my experience, the data and the settings (other than the heat setting and ramp) are all hidden behind a mysterious curtain. I wonder if it's because I'm not primarily an apnea patient?

I do know that my breathing rate on the ST used to be higher and then after a night-time pulse ox showed some desaturation, it was slowed to 6 - that was about 2 years ago. I don't recall a follow-up re-test. Now it seems, because of the CO2, my pulmonologist is taking the opposite tack.

I was lab titrated once, 7 years ago at Mayo - when they connected my desaturations to my muscle myopathy. That's when I got my original settings.

My RT did tell me to call if it wasn't working. I have switched back to the ST because I haven't been able to fall asleep on the AVAPS. I'm going to try again tonight and try to figure out when the rate is worst so I can describe it better. I'll call her tomorrow. She thought this was going to be difficult adjustment, based on the difference in the settings.

[dsm]

Naranjadia,

The AVAPS is a challenge when it is set to deliver an assured volume and at a fixed RR (respiratory rate).

The machine has the ability to slowly vary the Ipap pressure (approx 1 CMs per minute) to bring you onto target for the set volume to be delivered.

If the RT set your machine to 18 breaths per minute, I am sure you can go to him and ask that he lower the rate as IIRC, the machine works on the principal that it will raise ipap pressure to ensure you breathe in the required volume and at a particular rate. IIRC lowering the respiratory rate means the Ipap gets set higher so as to maintain the required minute volume.

18 as a constant RR is going to be frustrating.

Good luck

DSM

[Madalot]

Naranjadia,

Michael (unadog) pointed me to this thread in one of mine! I wasn't online much last night and didn't see it.

I'm trying to imagine my machine being set at 18 BPM and it makes me shudder just thinking about it! I'm set at 7 BPM and even at that rate the machine sometimes kicks in a breath on me and I don't care for it much. I changed my Inspiratory Time to 2.7 and am finding it works a little better for me. But I'm still "tweaking" a bit with comfort settings (per my doctor's approval).

Because my doctor has not done an ABG (and I plan on asking her if we should), it's hard for me to understand the reasoning behind the settings you've been put on.

I know for me, a tidal volume of 550 was way too high for me. My RT was only dropping that in small increments and I was still having issues. My doctor finally dropped it to 400, which has worked out reasonably well for me.

If I may ask -- what is your medical condition that has caused the weakened respiratory muscles?

[Madalot]

Thanks again. I am combing through Madalot's threads - she does seem to have recently dealt with a very similar situation.

My RT did tell me to call if it wasn't working. I have switched back to the ST because I haven't been able to fall asleep on the AVAPS. I'm going to try again tonight and try to figure out when the rate is worst so I can describe it better. I'll call her tomorrow. She thought this was going to be difficult adjustment, based on the difference in the settings.

I have a bit more time right now and noticed the above comment. I know when my tidal volume was set at 550, I felt like the machine tried to kill me during the night! They had me at a BPM of 10 (at that point anyway) and we all agreed that the tidal volume of 550, plus allowing it to use pressure up to 30 to maintain it was way too high for me.

I obviously don't know what kind of relationship you have with your RT & doctor, but I would recommend that you quickly get in touch with whichever one can authorize changes and try to get things modified in a way that works better for you.

Like I said in a previous post, I know that for me, if they had me at 18 BPM, I'd be miserable.

For me, my DME left the clinician's menu open for me and let me make the changes myself. That made making the changes a little more quickly, but still getting the authorization was a little frustrating.

[Naranjadia]

Well, another failed attempt last night. I switched to the ST after an hour. I am calling my RT when they open this morning.

Madalot - that's interesting that you say that you felt like the machine was trying to kill you, because I was wondering last night if it were possible to choke to death on air last night. I do okay for a few minutes of breathing, and then it feels like my windpipe is getting overloaded with boluses of air - I don't know if this is possible, that's just how it feels like. Then I choke, open my mouth and the process starts again. I am glad to read that you got an adjustment to your tidal volume - it gives me hope that I will get some movement on my settings too.

Luckily, the RT I am dealing with now is a gem. She has none of that "it's supposed to be that way" mentality. She also seemed genuinely surprised at the settings, so hopefully she'll be a good advocate. On the other hand, as a whole, this DME supplier as a whole has a keep the patients in their place attitude. (I've used both in town, due to insurance changes - similar attitudes).

DSM - Thank you for your comments. So I wonder if it's a case of my pulmonologist knowing the effect he wants to achieve, but not being familiar with the machine? Or maybe he just set the target for breaths per minute at 18 in the hopes that I could do it.

Madalot asked about my underlying condition - I have multicore myopathy - which is a congenital condition that affects all the trunk muscles, including the diaphragm and some of the supplementary breathing muscles. When I was younger, the only effect was that I was the weakest kid in gym class - but when I was in my thirties, I developed respiratory failure, pulmonary hypertension, and an inability to breath while lying down, especially sleeping. That's when I was diagnosed. A doctor at the sleep lab at Mayo discovered that when I entered REM, I desatted ~30% which made me wake me up. Evidently in REM, all our supplementary breathing muscles don't work and it's up to our diaphragm to do the job - except mine was too weak. I am lucky in that it was so mild when I as a kid, but I feel a little unlikely in that I have the progressive kind. :p

[Madalot]

Madalot - that's interesting that you say that you felt like the machine was trying to kill you, because I was wondering last night if it were possible to choke to death on air last night. I do okay for a few minutes of breathing, and then it feels like my windpipe is getting overloaded with boluses of air - I don't know if this is possible, that's just how it feels like. Then I choke, open my mouth and the process starts again. I am glad to read that you got an adjustment to your tidal volume - it gives me hope that I will get some movement on my settings too.

Madalot asked about my underlying condition - I have multicore myopathy - which is a congenital condition that affects all the trunk muscles, including the diaphragm and some of the supplementary breathing muscles. When I was younger, the only effect was that I was the weakest kid in gym class - but when I was in my thirties, I developed respiratory failure, pulmonary hypertension, and an inability to breath while lying down, especially sleeping. That's when I was diagnosed. A doctor at the sleep lab at Mayo discovered that when I entered REM, I desatted ~30% which made me wake me up. Evidently in REM, all our supplementary breathing muscles don't work and it's up to our diaphragm to do the job - except mine was too weak. I am lucky in that it was so mild when I as a kid, but I feel a little unlikely in that I have the progressive kind. :p

After the first night on my ventilator with the tidal volume so high, I told my RT (and my doctor a few days later) that there was no way I would go back on that thing like that. It woke me up and I thought I was being killed. I ripped my mask off as fast as I could and was borderline hysterical at what had happened. It was awful. You have my sympathies on this and I truly hope that between your RT and doctor, they can get the settings more comfortable for you.

I have to say that I believe we are getting closer and closer to optimum settings for me. But I don't think I would have gotten here as fast as I did without the help of people here. The insight and advice I got here helped me become my own advocate. If not for this forum, I'd probably still be using the bipap machine that wasn't working for me at all!

I am really sorry for your myopathy. It sounds very similar to what I'm dealing with, but with a few differences. But your description of your breathing problems sounds exactly like what's happened to me. The first sign of any trouble was difficulty breathing at night. My Pulmonologist says the same thing that yours does -- in REM sleep, the diaphragm muscles must do all the work and if those muscles are compromised (like mine are) breathing becomes a serious problem.

Please feel free to ask me any questions either in a post or a PM if you'd prefer. It sounds like our situations are very similar and hopefully having someone that can relate to it from personal experience might make it easier for you.

[unadog]

Thank you so much for helping, Madalot!

Your experience is much more direct and powerful and heartfelt than anything I could provide.

Plus, I have memory and cognition deficits that limit my usefulness even on things I should know well. For example, I bought a coffee at the food store yesterday while shopping. It took me quite a few minutes to realize that what I needed to do next was get milk and sugar into the coffe! I knew there was **something**!

Naranjadia, it is good that you still have the S/T available. It also sounds like you have an RT that you can work with, even if you have to be a little less direct than you would like! You will also need to decide how much you want to learn technically, and how active you need to be in mobilizing the RT and doctor to get the machine set up to make you more comfortable.

I would say that while many of us here have taken over total management of our own machines, your case and Madalot's require much more direct involvemant of your health care practicioner. Do what you need to do, but don't let us lead you too far down the "do it yourself" path if that isn't appropriate for your condition, needs, or for your professional relationships. I have tried a few diffeerent machines taht I bought myself, I have backups, and I really don't need to se my health care provider on this for quite a while. Your cases are much more specialized!

I am sorry to hear about your coindition, and that it is progressive. Good sleep is so healing and restoritive. I hope you can reslove the larger issues soon so that the machine is more useful, then "tweak" the smaller comfort settings after that.

You might be able to estimate your correct tidal volumes by comparing to others of the same height, weight, sex, and age. As well as comparing breating rates, etc. That will help you to check any settings to make sure that they make sense before the machine gets set up one way or another.

Good luck!
Michael

[Madalot]

Thank you so much for helping, Madalot!

Your experience is much more direct and powerful and heartfelt than anything I could provide.

I don't know about that, but it's nice to try to offer something back. If I can help anyone benefit from my experiences, I'm all for it!

I would say that while many of us here have taken over total management of our own machines, your case and Madalot's require much more direct involvemant of your health care practicioner. Do what you need to do, but don't let us lead you too far down the "do it yourself" path if that isn't appropriate for your condition, needs, or for your professional relationships. I have tried a few diffeerent machines taht I bought myself, I have backups, and I really don't need to se my health care provider on this for quite a while. Your cases are much more specialized!

I am going to second this wholeheartedly! I think it's very important to educate yourself about your condition and the machine that you're using. But it's also very important that you not take your treatment into your own hands based on information you're getting here. Learn what you can, then ask questions of your healthcare team. I found that sometimes I was getting advice based on something I had said, but I was not able to explain or validate certain things and the advice wasn't totally appropriate for my situation. Always run things by your RT and/or doctor.

In my situation, I earned the trust of my DME and doctor and while I have full access to the menus on my ventilator, I don't make any changes unless approved by my doctor.

[Naranjadia]

I spoke with my RT on Thursday and she agreed to talk to my pulmonologist. She asked me "Were these settings decided based on a sleep study or was he guestimating." Um. Guestimating.

Long story short, I heard back on Friday that they had a new card for me to try. Everything is the same, except the breathing rate is now 10. This seems a bit more manageable. I was able to stay on it all night. My only issue last night is that even with a chin strap, occasionally I am still bursting out air through my mouth. I woke up a few times as a result.

Still, much better!

[Slinky]

I think I've read that the "normal" breaths per minute can vary from 12 to 20 bpm. It stands to reason then that those w/impaired breathing for whatever reason is going to fall near to the extremes of this range or somewhat outside of this range. I have COPD and my respiratory rate tends to fall in the 18 to 25 range during sleep.

[Madalot]

I spoke with my RT on Thursday and she agreed to talk to my pulmonologist. She asked me "Were these settings decided based on a sleep study or was he guestimating." Um. Guestimating.

Long story short, I heard back on Friday that they had a new card for me to try. Everything is the same, except the breathing rate is now 10. This seems a bit more manageable. I was able to stay on it all night. My only issue last night is that even with a chin strap, occasionally I am still bursting out air through my mouth. I woke up a few times as a result.

Still, much better!

I'm glad they've listened to you and have lowered the breath rate. Even 10 was too much for me, but might be much better for you. Let us know how it goes!