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robysue wrote:

Madalot wrote:Oh Ugh...
Last night was pretty horrible. I tried to go to sleep BEFORE I was actually falling asleep. That was a mistake as I laid there for over an hour. And I kept waking up, although the environment may have been a factor -- very warm last night - it was 60 degrees when I went to bed. Bizarre for January.

I'd say go back to your pattern of waiting until you are feeling like you're falling asleep before going to bed. I know that it's a pain in the butt, but it's better than lying in bed for an hour waiting for the sleep fairy to come.

I usually go to the bedroom by 10pm and sit up watching TV, playing Words with Friends and reading until I get sleepy. I would stay in the family room, but it's hard for me to get back to bed, plus my rollator makes so much noise it would definitely wake up my husband. Plus, the motion of getting up and moving to the bedroom would totally wake me up.

The main reason I tried to go to bed earlier last night is because my husband had to get up really early today and I know that my sitting up in bed sometimes disturbs him.

robysue wrote:Any clue as to why the machine had to trigger so many breaths after 5:00AM today?

I was having a horrible time with the leaks between about 3:30 and 5:00. I kept trying to stay up higher on the pillow since it supports the bottom of the mask and that's where it was leaking. No matter what I did, I would end up slid down and the bottom of the mask was hanging off. Plus, I wanted so much to sleep on my right side, but my chest was hurting for some reason, forcing me onto my left side where my leg hurts. If I flipped on my back (which I try really hard not to do), the mask REALLY leaked. Couldn't seem to win for losing. Hubby got up at 5:30 and I did fall back to sleep, deep into a vivid dream (that I can still recall). I woke to the mask again around 6:15 and gave up and got up at 6:20.

Perhaps during that brief period where I was dreaming - REM sleep seems to be my biggest problem.

Two more nights down, two more to go before the machine is supposed to go back.

Mask leaking has become a big issue the last two nights and it's danged weird. The pressure the ASV uses (IPAP) is very similar to what the ventilator uses so I don't get why I'm having mask leaking issues.

The last two mornings I've woken with a horrible dry mouth, which also makes no sense since I'm using a humidifier. I guess it's possible I'll be coming down with a cold in a few days (we have one in the house) and that is sometimes the precursor for me.

I DO feel like I sleep slightly more soundly on the ASV than the vent. Is it enough to warrant making the change? I don't know.

One of the things my DME has said that *IF* we change machines, it could be difficult to get the ventilator back down the road (insurance wise).

Ultimately, the final recommendation/decision will lie with my doctor, but I am certain she will take my wants/desires into consideration.

I do like the ASV a bit better, but is it enough to risk the switch? Financially it would be better (IF my insurance will allow the change and do a rent-to-own deal on the ASV).

I just don't know....

Any clue as to why the machine had to trigger so many breaths after 5:00AM today?

My daily reports always show a big dip in PTB an hour or so before I get up. As I go into lighter sleep and doze, I slip in and out of Stage 1 sleep and have many transitional central apneas. This may be happening to you, Madalot. Like you, I don't try to sleep until I'm falling asleep, but I mask up while I'm reading and playing games in bed because I have a lot of central apneas at that time, too. I think I'm awake, but the next days reading shows that my PTB dipped and I was probably nodding off a lot. I don't know if you have this problem or not, but just thought I'd share my experience with ASV.

teknomom wrote:

Any clue as to why the machine had to trigger so many breaths after 5:00AM today?

My daily reports always show a big dip in PTB an hour or so before I get up. As I go into lighter sleep and doze, I slip in and out of Stage 1 sleep and have many transitional central apneas. This may be happening to you, Madalot. Like you, I don't try to sleep until I'm falling asleep, but I mask up while I'm reading and playing games in bed because I have a lot of central apneas at that time, too. I think I'm awake, but the next days reading shows that my PTB dipped and I was probably nodding off a lot. I don't know if you have this problem or not, but just thought I'd share my experience with ASV.

Hmm...this is very possible. Maybe I will mask up tonight while reading/playing and see what happens. Probably wouldn't be a bad idea, since I was having some trouble breathing anyway.

That IS something else I've noticed -- slightly more trouble with daytime breathing since I've been on the ASV. It's not awful, but a bit worse than it was before.

Good morning Maddie,
Just a few thoughts...

On the increased leaks with the ASV, you have a major variable in play right now. The humidified warmed air could be causing or worsening the leaks. Also there could be increased sweating or a change in skin oils related to the change in heat and humidity.

Point being you shouldn't really blame the ASV until you go back and try the Trilogy WITH a humidifier. Then you'll have a fair comparison.

Madalot wrote: That IS something else I've noticed -- slightly more trouble with daytime breathing since I've been on the ASV. It's not awful, but a bit worse than it was before.

I've pondered why an ASV should be worse in this regard then your Trilogy. My only thought is that the increased PTB you're having with the ASV means you are doing more of the breathing...and since you have the Myesthenia syndrome, you have a finite amount of acetylcholine (and thus muscle strength and stamina) available...in any given day.

So (assuming my theory is correct) you're tiring out your breathing muscles at night... while on the Trilogy, you were allowing them to rest more. With time, you may be able to compensate for this, but there's no way of knowing that.

This is a pivotal point that should be discussed with your MD.

Hope this make sense to you...

Take care,
Jamis

jamiswolf wrote:On the increased leaks with the ASV, you have a major variable in play right now. The humidified warmed air could be causing or worsening the leaks. Also there could be increased sweating or a change in skin oils related to the change in heat and humidity.

Point being you shouldn't really blame the ASV until you go back and try the Trilogy WITH a humidifier. Then you'll have a fair comparison.

This never occurred to me but I bet you have nailed it. That said, maybe I will try going WITHOUT the humidifier tonight on the ASV - see if the leaks are better.

jamiswolf wrote:

Madalot wrote:Madalot wrote: That IS something else I've noticed -- slightly more trouble with daytime breathing since I've been on the ASV. It's not awful, but a bit worse than it was before.

I've pondered why an ASV should be worse in this regard then your Trilogy. My only thought is that the increased PTB you're having with the ASV means you are doing more of the breathing...and since you have the Myesthenia syndrome, you have a finite amount of acetylcholine (and thus muscle strength and stamina) available...in any given day.

So (assuming my theory is correct) you're tiring out your breathing muscles at night... while on the Trilogy, you were allowing them to rest more. With time, you may be able to compensate for this, but there's no way of knowing that.

Again, you may be spot on with this as well. I did consider that for whatever reason, the Trilogy gives my breathing muscles a better break at night, thus making them work better during the day.

jamiswolf wrote:This is a pivotal point that should be discussed with your MD.

Hope this make sense to you...

This all makes great sense - and I thank you for it. I agree that this is a pivotal point all the way around and no decisions can (or should) be made until everything is relayed to my doctor and she can evaluate it.

This may be financially not viable but, Could you have the ASV for naps and the trilogy (with humidifier) for night time?

BlackSpinner wrote:This may be financially not viable but, Could you have the ASV for naps and the trilogy (with humidifier) for night time?

Probably not. Insurance won't pay for both and I can't afford to buy the ASV outright.

I agree with JamisWolf and was just going to note the same thing. I'ld been thinking about it this morning/afternoon.

Also as another consideration, the ASV is not intended to be a full time ventilator. My reports show that my patient triggered breathing is not what it should be. And I know that I used up one ASV unit. I'm on my second Resmed ASV unit - the bearings in the first had started to LOUDLY squeal.

By the way, you can sometimes find ASV units on Craigslist and/or here for much less than a new unit.

I didn't read the details, but maybe a higher minimum pressure will help you adjust out mask leaks.

JohnBFisher wrote:I agree with JamisWolf and was just going to note the same thing. I'ld been thinking about it this morning/afternoon.

Also as another consideration, the ASV is not intended to be a full time ventilator. My reports show that my patient triggered breathing is not what it should be. And I know that I used up one ASV unit. I'm on my second Resmed ASV unit - the bearings in the first had started to LOUDLY squeal.

By the way, you can sometimes find ASV units on Craigslist and/or here for much less than a new unit.

True. That's how I got the bipap auto for my husband.

I am going to try the ASV without the humidifier tonight and see if the leaking is better. I am also going to do a pros & cons list of the two machines and see if, written down, one seems better over the other.

archangle wrote:I didn't read the details, but maybe a higher minimum pressure will help you adjust out mask leaks.

Are you talking minimum IPAP or EPAP? Right now, min I is 14 and min E is 7. I can't remember offhand what the PS is set to....

teknomom wrote:

Any clue as to why the machine had to trigger so many breaths after 5:00AM today?

My daily reports always show a big dip in PTB an hour or so before I get up. As I go into lighter sleep and doze, I slip in and out of Stage 1 sleep and have many transitional central apneas. This may be happening to you, Madalot. Like you, I don't try to sleep until I'm falling asleep, but I mask up while I'm reading and playing games in bed because I have a lot of central apneas at that time, too. I think I'm awake, but the next days reading shows that my PTB dipped and I was probably nodding off a lot. I don't know if you have this problem or not, but just thought I'd share my experience with ASV.

My mom gets up at 5:XX am often. She is very quiet but I nearly always see about an hour of sleep disturbance right at that time for probably the same reason.

For what its worth, I think it can take quite a few months of ASV time to really form a judgement. Its been just over a year now for me. Originally I could not sleep on my sides because I just repeatedly stopped breathing but now I can tolerate that somewhat. Also, it feels to me as if my natural breathing is stronger. Perhaps my sleep apnea weakened my diaphram as it did my legs and arms. But I feel much more like my breathing is stronger now. I do not know if such exercise is good for you with your medical condition. I agree with the others that you should discuss that aspect with your doctor.

Mr Bill wrote:Also, it feels to me as if my natural breathing is stronger. Perhaps my sleep apnea weakened my diaphram as it did my legs and arms. But I feel much more like my breathing is stronger now. I do not know if such exercise is good for you with your medical condition. I agree with the others that you should discuss that aspect with your doctor.

My weakness is definitely caused by a neuromuscular disease. Having used the ASV for several nights and downloaded the sleep-related data, it seems as if my sleep apnea is WELL controlled with this machine and probably the ventilator as well. In my mind, this has answered the question about whether my awakenings and daytime fatigue are a result of inadequately treated sleep apnea. With AHI data consistently below 1, I would guess untreated sleep apnea is NOT the culprit.

However, I still am maintaining that one big difference between the ASV and the Ventilator is the varying EPAP. The ASV is moving the EPAP around on me, which may have bearing on the AHI being so low.

It irritates me that the one setting on the ventilator that WILL auto adjust the EPAP results in a constant alarming that cannot be disabled.

Never worry, though. All of this WILL be discussed with my doctor and downloads provided to her before any final decision is made about which machine is better for me. I am allowed to make changes to the machine(s) within the scope of what she and I have already discussed, but I never make major changes without consulting her.

I have been going back and forth with my doctor via email and her initial thinking is that the ASV would be a good solution for me --long term.

I have asked my DME to check insurance to see what would be involved if we decided to make this change.