Mr Bill's ASV adventure

[Mr Bill]

Since so many of you are sharing data. I thought I would show some of mine. First is the pulse oximetry I showed my doctor to convince him I thought something was wrong with my breathing at night....

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I realized in July of 2010 that I was not sleeping. It was freaking hot summer, humid, and I started sleeping out on the couch on my back and then eventually sitting up because I felt like I was not breathing. I kept waking up realizing that I had not been breathing and it did not feel to me like I had been making any effort to breath. I decided I would bring it up with my Doctor at my annual physical and ordered a pulse oximeter from Amazon. Well, my pulse oximeter data showed alternating one hour of good oxygenation then an hour of ~40 second pulses down into the 70% and as low as 60% oxygen saturation with synchronized heart rate swings. So, my doctor looks at this and says classic sleep apnea and you have just the body type for it. I thought he meant I was fat, but I found out later from a tech, that he was referring to my 18-19 inch neck. I told my doctor I was sure I had central sleep apnea and he scoffed. Its about 5pm on a friday 9/19/10 and he turns me over to his physicians assistant be scheduled for a sleep study. He is a very upbeat guy and said he has a ton of people on CPAP's and soon I would be right as rain. The physicians assistant calls the sleep lab and the next available slot is over a month away. I am desperate for sleep at this point and so I ask if there is possibly a cancellation list. She says sure, do I want to be on it? She does some typing and then says, can you be there tonight? Yippee!

Green line is SPO2 (blood oxygen saturation in percent), below 90% is very bad for brain and heart.
Blue line is heart pulse rate.

The sleep lab here is in the Mariott Residence. Its very nice, I get the complete wiring up chest and belly bands, nasal cannulas, microphones, cameras, leg electrodes, heart, head, face, electrodes pulse oximeter and the whole works, and we start me trying to sleep. After a few hours he comes in and tells me he know what is wrong but we have to try this nasal mask and attempt to fit me for CPAP or BIPAP even though he is sure I will have to have something called an ASV. I am like h3ll no! but give me a few minutes, let me put it on loosely and get used to I wearing something that looks like it will suffocate me in my sleep. He tells me its always the big guys who are the ones to react this way. He also tells me then its my neck size that makes me the typical CPAP candidate. I have mild asthma and have become sensitive to confined spaces, which make me fear I may not be able to breath. So we strap on and try all the settings. After hours of sleeplessness. He comes back in and tells me the diagnosis. I have profound, severe, complex, sleep apnea. I would need to come back for a second sleep study to fit me for an ASV.

During this first study, there was an observation period of 4.5 hours during which I actually only got 75 minutes of no REM sleep (24% sleep efficiency). I was having a respiratory disturbance index of 76 events per hour and apnea/hyponea index of 67.7 events per hour. 59 of the 84 events during actual sleep were central events and persisted during the titration period between 7cm (51 CA/hr) and 10cm (68 CA/hr) of CPAP. Lowest oxygen saturation during that first study was 81%.The next sleep study was scheduled for 11/12/10, so I had a couple months to survive till then. This was a low point for me. I was super tired and not at all sure there was any hope. Now, I have no idea if my little wrist pulse oximeter was accurate and I did not wear it that night. But at home I was seeing desaturation down to less than 60%.

I've since wondered, why "profound, severe" I know these words have slightly different meanings but do they have medical meanings? The sentence really stuck in my head.

[Mr Bill]

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So the next sleep study with the ASV was 11/12/10. This time, I show the tech my pulse oximeter data and he opines that it looks like REM specific sleep apnea which is typically obstructive rather than central. Its a trying night, he felt we had to try titrating oxygen first. This was because I brought along a sleep study from my mother (done in that lab a year before) which showed that she also had central apneas and that an oxygen cannula was sufficient to fix her problem. He said we had to spend the first part of the night trying oxygen. I get all wired again and this time I brought a camera so I could get a picture of at least the wiring job. I was praying at that point that a simple oxygen cannula would be all I needed. But after a couple hours the tech comes back in and tells me there is no setting that does not make it worse.

So, its mask on and try try to fall asleep for the second half of the night using the ASV. So uncomfortable, and the ASV kept waking me up as it tried to learn my pattern. It would get ahead of me or fall behind me and finally it began to gently puff air just as I stopped breathing but without waking me up. So, in the wee hours of the morning, I finally fell fully asleep. The tech was elated, he got 1.5 hours of data, including REM sleep, which he needed to be able to make the final diagnosis. I can't tell you how profoundly good I felt for the next whole week. Um, I don't know much about stages of sleep but 26% was stage N1, 28% was stage N2, 36% was stage N3, and 10% was stage REM. That was more rest that I had gotten all fall! The tech apologized for being excited about me but said not only is central sleep apnea rare but I seem to have a rare response he said the brainwaves showed I have full arousal from each central event and that they become worst during rem sleep. He said most people are unaware they are having central events But that because I was having this arousal after each event, was not surprising that I was aware I had not been attempting to breath. He tells me that my apparent good pulse oximeter data is the reverse of what a doctor would think looking at it. When I have good oxygenation and heart rate, I was lying there awake, each time I fall into rem sleep, the apneas start and they are almost all central events.

Here is what is now a pretty typical ASV night for me. Only, I typically get only 6.5 hours a night. This was a holiday so I got to sleep in till I woke up. Note the minor instability as I start to fall asleep and then the ASV catches me and sleep pretty well. But not so far very deeply. I am easily awakened. So I just breath along until I fall asleep again.

[JohnBFisher]

Sometimes awakening easily is just part of getting older. So far, I've not found a prescription for that. That is, most people prefer it to the alternative.

It's also possible you are not attaining very deep sleep. Did your sleep studies seem to show that? Have you considered medication to help improve sleep? For example, I have a very similar problem due to my neurological issue. My doctor prescribed the generic of Remeron to help promote sleep. The side effect of this anti-depressant is that it makes you very sleepy. With it, I can get a fairly normal night of sleep. Without it, I feel as if I am just skating over the surface of sleep.

No doubt there are different medications that can help that.

[BrianinTN]

My doctor prescribed the generic of Remeron to help promote sleep. The side effect of this anti-depressant is that it makes you very sleepy. With it, I can get a fairly normal night of sleep.

+1 to Remeron (mirtazapine). I started it about three weeks ago and my AHI has plummeted since then. There have been a couple studies showing it to be an effective off-label treatment for apnea, although that isn't why I began it.

One of the downsides to Remeron is that for the first few days in particular, you may feel like you've been hit by a freight train and want to sleep all the time. I still have quite a bit of residual daytime sleepiness, which was the case before I started the Remeron too...so unfortunately it isn't clear whether that's my ASV continuing to be unable get the whole "job" done or the lingering side effects from starting the Remeron. Regardless, it has proven useful in a way that clonazepam, Lunesta, and zolpidem all haven't.

[Mr Bill]

Remeron (mirtazapine) sounds interesting but I really don't want to be taking a tricyclic ADP if I can avoid it. I took one for a few months while recovering from my year of extreme hypothyroidism and I did not like how it made me feel.

I do sometimes "feel as if I am just skating over the surface of sleep" but I think I will keep trying just the ASV for now. I am up over 6.5 hours a night and if I can get the average closer to 7 or 8 hours a night; that might do the trick.

[rested gal]

I do sometimes "feel as if I am just skating over the surface of sleep" but I think I will keep trying just the ASV for now. I am up over 6.5 hours a night and if I can get the average closer to 7 or 8 hours a night; that might do the trick.

Bill, I've followed your saga when you posted in some other threads -- always such interesting, articulate descriptions of what you've been going through. The progress may be slower than you'd like, but you're certainly going about working on your therapy in an intelligent, methodical way. "up over 6.5 hours a night" sure is sounding much better now. Continued good luck to you!

Your posts (and not just about ASV matters) have been helping a lot of other people "learn."

[teknomom]

Bill, I'm just beginning this journey - soon to get my ASV - so reading about what others have been through really helps give me a realistic idea of what's ahead. Thanks for sharing your experiences. Teri

[Mr Bill]

I do sometimes "feel as if I am just skating over the surface of sleep" but I think I will keep trying just the ASV for now. I am up over 6.5 hours a night and if I can get the average closer to 7 or 8 hours a night; that might do the trick.

Bill, I've followed your saga when you posted in some other threads -- always such interesting, articulate descriptions of what you've been going through. The progress may be slower than you'd like, but you're certainly going about working on your therapy in an intelligent, methodical way. "up over 6.5 hours a night" sure is sounding much better now. Continued good luck to you!

Your posts (and not just about ASV matters) have been helping a lot of other people "learn."

I figure I need to work at paying forward. I was in a world of hurt when I first came to this board and I found a lot of help and reassurance. You were one; thank you.

[JohnBFisher]

... I figure I need to work at paying forward. I was in a world of hurt when I first came to this board and I found a lot of help and reassurance. You were one; thank you. ...

Like you, I have gone through all sorts of problems before I found a doctor who actually listened, tested and helped. It is not just paying it forward when we help others. It helps wrestle meaning and purpose out of a bad situation. It makes it easier when I have to go to see yet another doctor to know that I am doing all I can to help others avoid such a situation - or at least deal with it as best as possible.

Keep up the good work. I definitely agree with Rested Gal. You are doing a great job helping all of us learn.

[Mr Bill]

Whew its embarrassing to get complements

I just spent thanksgiving at 8300 feet elevation compared to my home elevation of 4500 ft. I was a bit shorter of breath falling asleep, and sleeping on a couch. I'll post a report later.

[FeelingBetter]

What is ASV? I hear people talk about it but I haven't a clue what it is.
Thanks.

[ameriken]

What is ASV? I hear people talk about it but I haven't a clue what it is.
Thanks.

Click on the machine in my signature.

CPAP is usually the device for obstructive sleep apnea, ASV is a device for complex sleep apnea, central sleep apnea, and other more complex and serious breathing disorders. The machine follows your breathing pattern and when it detects abnormalities, it responds with pressure as well as a backup for BPM (breaths per minute). When the patient stops breathing altogether, the machine keeps you breathing a minimum of 10 BPM.

[Mr Bill]

What is ASV? I hear people talk about it but I haven't a clue what it is.
Thanks.

ASV stands for Adaptive servo-ventilation. Both Respironics and Resmed make ASV machines. They are used for treatment of people who have complex sleep apnea where central events are either predominant in their sleep studies or they are induced by the pressures of CPAP and VPAP. They are also use for people who for various reasons have their sleep dominated by central apnea events. An obstructive apnea event happens because the airway has collapsed. A central apnea event happens when the body makes no effort to breath due to several underlying causes. The most common is when the body has an improper response to CO2 regulation in the blood and waits too long to start a breath. CPAP and VPAP machines are unable to treat central apneas and the ASV is the best current solution which can treat them.

[chunkyfrog]

"These patients know too much--and they're sharing their knowledge!
Our jobs are in jeopardy!"