Ventilator - Status (Update)

[robysue]

Madalot,

I think one thing that you should continue doing is using those backup "secondary" AVAPS settings when ever the current experimental settings create problems. In other words---backing out of the BiPAP trial and using the AVAPS as soon as the current trial on the BiPAP settings led to problems was exactly the right thing to do.

But you need to document in your written data exactly what led to your decision to switch to AVAPS, how much of a sense of relief you had once you switched to AVAPS, and how long you lasted on the BiPAP settings before making the switch---even though the time you had the settings on BiPAP was very, very short.

Remember that "negative data"---in the sense of what DOESN'T work and WHY it didn't feel "acceptable" is as important as documenting the "positive data" concerning the stuff that appears to be working. It's the only way you'll be able to remember what DIDN'T work at all given your complex situation.

All the best

[JohnBFisher]

... Remember that "negative data"---in the sense of what DOESN'T work and WHY it didn't feel "acceptable" is as important as documenting the "positive data" concerning the stuff that appears to be working. It's the only way you'll be able to remember what DIDN'T work at all given your complex situation. ...

As usual, great advice from robysue.

There's an old Chinese proverb that is appropriate:

The palest ink is better than the best memory.

[John puts away his soapbox and puts away his inscrutable sayings notebook and wanders off stage ....]

[Madalot]

I have a notebook and I am documenting everything daily. When my doctor okay'd my doing this, we agreed that I would maintain the AVAPS settings on the Secondary Prescription and if something went wrong, I could easily and quickly switch to them, which is what I did last night.

I also emailed her and told her exactly what happened, what I did and how the problem was resolved immediately when switching the settings.

As I've told a couple people, it was like being in a fire, in a room filled with smoke...I just couldn't breathe. Then somebody slapped an oxygen mask on me -- the relief at being able to breathe was immediate.

That's exactly how it felt last night once I switched the settings and the pressure jumped up. Exactly.

What is so weird is that a few years ago (long before all this crap) I had a dream of being in a fire, not being able to breathe and being rescued and put on oxygen. I still remember the feeling of relief (in that dream) of the oxygen mask after being so scared when I couldn't breathe.

I think my subconscious was telling me something even back then.

How strange that the feeling of relief last night was identical to that dream.

And even though I have no clue how to fix it, I feel last night's issue IS a significant piece of the puzzle.

[Madalot]

After Friday night's issues, I wasn't sure what to do last night, but made a decision and ran with it.

I went back to basic bipap s/t settings, but increased the ipap to 14 (from 13). All other settings left the same. As usual, AVAPS settings remain on Secondary for easy switchover.

I was VERY, VERY tired when I went to bed (had dozed off twice watching TV, but was watching a movie). I slept reasonably well, waking up a few times, but not pressure related awakenings since it wasn't going much higher than 14.

Download is consistent with what it has been. PTB's is back over 99% (at IPAP 13 that was down slightly to just under 99%). Tidal volume still a tad lower than on AVAPS at Max IPAP at least 18, but it's not so low that my doctor is very concerned.

Overnight pulse ox had 2 desats (first time in a while), but low is 90% so it' still acceptable.

I feel okay today. Not great, but not horrible (but I just got up).

So, if the day is tolerable, I'll try to leave these settings again for tonight.

[Madalot]

Oh Boy...How do I feel today?

My husband and daughter are leaving in about 30 minutes to visit family. I am too tired and nauseous to go, so they are going to get me settled on the couch, covered with a blanket and hooked up to my "friend" so I can try to sleep. Hubby has agreed to cook chicken on the grill and my daughter agreed to fix everything else so we can eat when they get home.

I am getting really tired of staying home alone because I feel too lousy and fatigued to participate in anything.

But..it is what it is..so couch, here I come.

[Lori Dawn]

Let your family pamper you and let their love wash over you! I know you want to go with them, but try to see the glass half full... Your family absolutely loves and supports you, and so do we!

Lori "QF" Dawn

[Madalot]

Let your family pamper you and let their love wash over you! I know you want to go with them, but try to see the glass half full... Your family absolutely loves and supports you, and so do we!

Lori "QF" Dawn

Awwww....thanks Lori! I agree with you and try, but it's hard sometimes.

Probably just as well I did NOT go with them yesterday. They did a few other things while they were out and didn't get home until 7:30. I would have been wiped out.

As it turned out, that nap on the couch went from 2:20 - 5:40 -- LONG nap, which I slept a lot. I woke up about 4 times, but I slept. Must have been tired, I suppose.

And the dreams I have during my couch naps -- wow. Vivid and I can still remember pieces of dreams I had a week ago from a couch nap. So bizarre.

Long nap messed me up for last night though. I suspected it could be problematic so I took an OTC sleeping pill, but that didn't do squat. I could not get to sleep, getting irritated at every little thing -- I was hot, my feet were sweating (weird, I know), the mask was hurting my face and that pulse ox monitor was feeling too tight on both my finger AND my wrist -- OMG. I finally ditched the monitor (so no data for last night), but FINALLY fell asleep after laying there and tossing and turning for almost two hours.

But once asleep, I slept reasonably well. I'm back to using bipap s/t settings (14/9, RR 7). Too bad I don't have data for the pulse ox monitor (I really should keep an eye on that) but something had to give and that got sacrificed in the effort to sleep at all...

[Madalot]

With my neuromuscular disease, things can be variable from day to day, so it seems logical that my breathing issues can be variable from night to night as well. Based on Friday night's scare and how switching to AVAPS helped so much, it seems logical to conclude that either BIPAP S/T or AVAPS may be appropriate on any given night. It also may not be very obvious which is better when I start out. If we take this as a given fact, it's now a matter of fine tuning BOTH sets of settings to give me the best possible sleep and next day outcome. Not perfect, but best possible.

The current settings I am using are:

Primary: Bipap S/T, Ipap 14, Epap 9, RR 7. Trigger type, sensitivity settings have not been altered. 2L Oxygen.

Secondary: Bipap S/T, with AVAPS, Ipap min 13, Ipap max 16, RR 7, Target Tidal Volume 400. 2L Oxygen.

Neither of these settings is able to keep an average tidal volume at 400 (I need a maximum IPAP up to 18 for that to be consistent), BUT, my doctor has said that as long as the RR and Min Vent fall within her guidelines, she isn't worrying about the tidal volume falling below 400.

Also, the pulse ox tests are showing a slightly decreased oxygen level on the BIPAP S/T settings. Not below 90% (yet???) but definitely a bit lower than at higher IPAP levels. Need to keep an eye on this.

It may seem that this is a worse situation working with two different sets of settings, but it is actually a bit easier, knowing that on any given night, one may work better than the other.

My doctor has suggested that even though she does NOT like doing this, medication may be necessary to allow me to sleep through the pressure increases. Even on bipap, the pressure can fluctuate between 14-15 and does go up to 15 - that machine really thinks I need higher pressure, which I probably do. She has recommended, at this point, taking a benedryl every night. Took one for the first time last night. I slept soundly, waking up once or twice, but NOT the wakeups I get with the AVAPS at higher max IPAP. But, I'm foggy and shaky this morning, probably from the benedryl.

Download is consistent. Overnight pulse ox from last night looks good, but there is a fair amount of artifact where my finger slipped out, but aside from that, looks pretty good to me.

I'm thinking, now, that BIPAP S/T (at my current settings) is pretty good MOST nights. The IPAP still wakes me some, but not as badly as on AVAPS. So I think we're getting closer to better settings.

I STILL do not have my ventilator back - this is getting comical really. They've had it since May 17. I am hoping that some of the upgrades to it might include more flexibility with some of the settings.

Insurance wise, I've gotten my answer from the insurance -- it WAS a capped rental and I can own it (or not), but either way, I can't be billed monthly rental on it anymore. The new DME has been told the same thing, but they are disputing it, saying this never should have been a capped rental. So, on and on that goes.

Are we having fun yet?

[jbn3boys]

Are we having fun yet?

Isn't that what this is all about? Having fun? No? Oh well....

My doctor ... has recommended, at this point, taking a benedryl every night. Took one for the first time last night. I slept soundly, waking up once or twice, but NOT the wakeups I get with the AVAPS at higher max IPAP. But, I'm foggy and shaky this morning, probably from the benedryl.

Sleeping soundly is wonderful!! As someone who has often taken Benadryl to sleep, the fogginess and shakiness should ease as you "wake up". If that doesn't happen another option is taking a half a tablet each night, instead if a full tablet. My niece, who works occasional nights, actually takes a quarter of a tablet when she gets home in the morning and needs to sleep. That is enough for her, and she doesn't get the fogginess when she wakes up.

[Madalot]

Sleeping soundly is wonderful!! As someone who has often taken Benadryl to sleep, the fogginess and shakiness should ease as you "wake up". If that doesn't happen another option is taking a half a tablet each night, instead if a full tablet. My niece, who works occasional nights, actually takes a quarter of a tablet when she gets home in the morning and needs to sleep. That is enough for her, and she doesn't get the fogginess when she wakes up.

I have found that taking anything that makes me more sleepy (Nyquil, sleeping pill, benedryl) allows to sleep through the pressure increases, but I'm not fond of taking stuff like this - I always feel so groggy the next day. But, if that's what is needed to get a decent night's sleep, so be it. But I DO know that after a few days on any of these medications, I tend to adapt and they don't work as well as they did in the beginning. But...I'll give the benedryl a try and see how it goes.

We still have the issue of the movements during REM sleep, but as is so typical with everything in my life, it's been a month since it was first suggested that I get another opinion from a sleep neurologist, yet no appointment/referral has been made yet (that I know of). I'm not sure it's worth worrying about at this point.

[jbn3boys]

I have found that taking anything that makes me more sleepy (Nyquil, sleeping pill, benedryl) allows to sleep through the pressure increases, but I'm not fond of taking stuff like this - I always feel so groggy the next day. But, if that's what is needed to get a decent night's sleep, so be it. But I DO know that after a few days on any of these medications, I tend to adapt and they don't work as well as they did in the beginning. But...I'll give the benedryl a try and see how it goes.

Could you maybe start with a low dose, say a quarter tablet, and then increase as needed? Maybe if you change the dose occasionally, you could fool your body? Or maybe switch between two different sleep aids? I'm just throwing out ideas, because I think if you could get some good sleep on a regular basis, you might be better able to deal with all the other "stuff" a little better.

jbn
(please excuse the brief replies...still typing one handed)

[DoriC]

Benedryl has the same effect on Mike and me too. And I've heard the same thing from other people. Yet we can take Ambien 5mg during some stressful times and it doesn't make us groggy or shaky in the morning.

[Madalot]

I could start out at a smaller dosage or change the dosage sometimes.

I remember something Muffy asked me last year and at that point, I was so lost and clueless that I couldn't give a decent answer -- but basically -- what are you treating?

There's no doubt I have breathing issues and first priority was treating those. For the most part, I think, we have got those adequately treated. But a consequence (side effect if you will) is badly disrupted sleep with so many awakenings that it affects my fatigue level and ability to function during the day.

Drugs have been suggested to me -- drugs to help me sleep through the pressure changes as well as drugs to help me feel more alert during the day. I have resisted these solutions because I already take enough drugs and really want to find ventilator settings that will adequately treat my breathing issues WITHOUT the other consequences.

For me, adding more medications to solve this is giving up on finding better ventilator settings. I think I've come a long way in the last few weeks with my trials with the different vent settings. Am I 100% there yet? No, but I think I'm a heck of a lot closer than I was before.

Right now, I am continuing my trials and using the benedryl will be a part of it (being documented in my journal) but I am not ready to say that I want to take medications, full time, just to sleep more soundly through the night. I'm just not ready to accept that as the best we can do.

[Madalot]

I am finally getting around to updating and this will probably be my last update for a while, unless something unusual occurs.

I have been doing this a week now (my starting over) and except for one night, have used Bipap S/T settings, with the only real modification to the settings increasing the IPAP from 13 to 14. Everything else has stayed the same.

Per my doctor's instructions, I added Benedryl to my situation, hoping it will help me sleep better through the night. I'll give it that -- I sure do sleep more soundly. Yesterday, I was shaky and feeling awful all day, falling asleep in my recliner (no equipment - bad me) for 2.5 hours. Yuck. Went to lay in bed EARLY last night, taking the Benedryl earlier, hoping the effects would subside earlier. I slept soundly again last night, but it was all I could do to drag my butt out of bed this morning, finally forcing myself up at 8:30 (I think I could have SLEPT all day if I let myself).

Download and overnight pulse ox are about the same as they have been. My fingers are starting to get a bit sore from having this thing on every night, so I think I'll give my fingers a few nights off and just look at the downloads.

I will continue on this path/test for at least a week (if circumstances allow it) and see how I'm doing at that point.

I STILL have not heard about an appointment with the sleep neurologist. I am "see-sawing" back and forth about whether it's worth the trouble. I think there IS something more going on, causing my sleep to be disrupted and even though the Benedryl seems to be helping (for now anyway), I am NOT fond of taking stuff like this. So, I think getting a fresh opinion from a sleep neurologist is probably sensible. So, I'll call AGAIN to ask of the referral.

Cross your fingers and toes -- I have been told that I should get MY ventilator back by Friday. I'm anxious and excited to see what kinds of changes (if any I CAN see) will be available now that it's finally been upgraded.

Anyway -- unless something unusual happens, I will continue my Bipap S/T (with AVAPS as a backup in case of breathing problems) and Benedryl and see how it goes.

[redjoe]

Good luck!