Help with Ed's Therapy

[SeePak]

Hi Ed.

If you had decent numbers, i would expect you feel something better by now?
But you say largely unchanged symptoms, right?

So what is your next step?

I see tendency towards CA events and still some OA.

With one adjustment, i think these could both be dealt with.

I know where i would be going here.....

and i think your oxygen desats will get better too.

[Expat31]

Hi,

I would suggest that you increase to 11/13, then 12/14, to see if any sign of improvement.

In my opinion, I think the focus really should be in looking into the significant ODI. This link gives a pretty detailed explanation, especially the section  "Other Causes". In this section, three main issues are described, followed by this particulular paragraph:-

 "Other conditions can cause problems with breathing and/or oxygenation during sleep and affect your ODI." , and [i]Several of these conditions contribute to each other, and OSA often coexists with other medical issues that affect breathing, such as COPD. With diminished lung capacity and/or heart function, the collapse of the upper airway may cause your blood's oxygen levels to drop more quickly and to a larger degree than they would if you had only OSA."[/i]

Dealing with your doctor seems to be difficult. It may be useful to ask probing questions (using what you have found from  your own research) on why  this, or that, cannot be considered. After all. you are only being proactive in your own health. 

Bye the way, one DIY thing you could do, is to check your lung capacity, using a really simple peak flow meter, which is just a plastic tube, with a sliding mechanism, not actually a precision instrument, but good enough for a start. My doctor gave me one of these, inexpensive, if I remember correctly only, about €20.

[Grateful Ed]

Having not experienced any symptom improvement over multiple nights with a 10-12 pressure range, I have moved to a constant pressure of 10.4. This is what my sleep specialist has recently recommended. I'm game to try it, and frankly, if I don't try her recommendations then there is little hope for any future dialog.

The data from my first night are attached. The numbers look good, although my leak rate was uncharacteristically high. Interestingly, my SpO2 desaturations were much lower (3.4/hr) than I typically see. This is only one night, so I'm not jumping to conclusions. I didn't think my sleep quality was any better, but I did experience some vivid dreaming, which is rare for me. I'm not sure if this means I spent more time in REM sleep, or again, it was just a one off. 

Expat31, you raised the issue of underlying conditions possibly contributing to my generally high ODIs. I have had lung function tests recently (all normal) as well as cardiac evaluations (also normal). I exercise regularly and have good exercise tolerance. So I think the data suggests there are no underlying pulmonary or cardiac issues.

I'll keep up with the constant 10.4 pressure setting and report back.

Ed.

[SeePak]

Hi Ed.

Glad to hear you are trying the constant pressure as per sleep specialist.

And i think the dreams are a signal you are on the right path too.

I think you will find a much quicker path getting where you got to go with a constant pressure.

I also think you will find you will lower your EPR to get rid of the CA events that crop up, will see.

I think the pressure swings PLUS you have a higher respiratory rate,  is washing out too much CO2.

CO2 is what gets oxygen out of the air that goes to your lungs, transfers it to blood, and then it gets oxygen out of blood and into every cell in your body.

That happens for every human being on earth.

But some of us have finicky systems that can have this process disrupted easier by excess air.

I can tell you are one of them, so am I.

EPR does that for some people, not all, but some.

And when you are one of those people, it is imperative to get this right.

Your limits in your bio suggest that a sleep study showed 8 cm as the point you get rid of OA events.

Anything over that , i think, gets you closer to causing CA events.

And they matter!  For us anyway.

My guess is you can end up close to 9 cm, no EPR, and feel rested, will see.

and i also think your Oxygen desats will normalize when you get there.

I hope we get a chance to see this happen!?

Good Luck, and Sweet Dreams!

[Grateful Ed]

Just a quick update for those who have been helping with my thread.

Mrs. Ed and I went on vacation, which is why I've been absent for a couple of weeks. Of course I used my machine every night and have collected data, but all of the disruptions that come with travel make it very difficult to draw conclusions as to how the new settings are affecting my sleep or my daytime symptoms.

I'm back home now, the jet lag is resolving, and I'm getting back into my usual routine. I'll continue with the constant pressure of 10.4 for now and monitor my symptoms, and report back shortly.

Ed.

[SeePak]

Welcome back!

Get some rest...

[Grateful Ed]

Time for an update, as I have been using constant pressure at 10.4 for about a month now. 

I think I have made some progress, with my daytime/evening sleepiness lessening somewhat. It's not a dramatic change, though I do think there has been improvement. It's still not ideal, but on some nights I am actually able to watch television without falling asleep. Small victories!

Interestingly, I'm not experiencing much of an improvement in my sleep quality. I'm still waking up several times every night, though I'm usually able to get 3-4 hours in one stretch. This similar to what I was experiencing on APAP. Perhaps moving to constant pressure has eliminated small arousals that I was unaware of, but were nevertheless impacting my daytime wakefulness.

For what it's worth, I've attached a few recent Oscar charts. To my untrained eye, they are not noticeably different than what I have had before. Over the past month my AHI has been relatively low (average 0.7, range 0.1-1.6) and my 95% flow limits have been decent (average 0.02, range 0-0.13). On some nights I experience more leaks than I did in APAP mode, which I presume is due to the longer exposure to higher pressures in CPAP mode.

I am cautiously optimistic that I am on the right track. My plan is to stay with my current settings for the next couple of weeks and see whether my symptoms continue to improve.

I appreciate the help I have received, and of course welcome any comments or advice.

Thanks
Ed.

[Deborah K.]

If you haven't yet, you may want to try Standard response instead of Soft response.  A number of folks have found making that change improved their sleep.

Good luck!  

[SeePak]

IMO Looks to my eye like you're getting OA events due to epr3 taking exhale pressure below your obstructive point so you need a minimum pressure raise to maybe 8cm

Thinking...
10.4 cm. EPR2. 

Or

11cm.   EPR3

[Grateful Ed]

Thanks for the suggestions.

@Deborah, I am currently running in CPAP mode, so I'm not sure if the soft vs standard response setting is relevant. I assumed this has to do with how the machine adjusts the pressure in APAP mode, but I confess that I'm rather ill-informed on this topic. I'd appreciate any clarification if I'm off base.

@SeePak, either of those options are my likely next steps.

Ed.