CPAPtalk.com

kteague wrote: Your "toe curling and leg stretching" description of your movements sounds nearly textbook for PLMD, which is no surprise. And it is equally non-surprising that your movements would worsen as your xpap treatment improves, as that is a common pattern in PLMD.

I think there just might be a fair number of confounding sleep factors at work.

Thanks for kicking that PLMD reminder in, Kathy. That makes very good sense IMO.

Here is my latest draft of the summary: http://users.adam.com.au/sixsome/the_plan_00.txt

Thanks again echo for the feedback. I am actually starting to feel like I can own this plan. Still waiting to see what Muffy thinks...

dsm wrote: Bipap Auto SV, it measure the pressure at the machine end of the hose & makes an allowance for losses that naturally occur when air flows down a tube (vs is static in a tube). When I put a dial manometer on a Bipap SV, the pressure at the mask tends to be approx 1 CMs less than what the machine & data from the machine report

I did make a little mental note when the sleep equipment provider (SEP) just set the Bipap ASV at the closest settings to that of the Adapt SV titration because, as you point out, the pressures are measured in different places and the algorithms are different. As an aside, when I quizzed the SEP about whether or not the S9 recorded ventilation data the reply given was "oh, I don't know all we ever look at is the AHI." Bit of a narrow range of monitoring I thought.

dsm wrote: I used to notice more leg & foot cramps when I was on my Vpap SV than when I was on my Bipap SV. I strongly suspect what you are describing may be CO2 related. Raise this issue with your doc & see what he says. I have come to believe that CO2 retention/loss can be impacted by the gap set between Epap & Ipap (the pressure support (PS)). I have done some experiments where I was able to reduce the cramps when using my Vpap SV by adjusting carefully this PS. Of course there is nothing to say that the cramps I experience are related to what you are describing. But I do think it can be related to CO2 levels in the blood.

Bigger gap (up to a point) increases loss of CO2 from the lungs, right? -SWS suggested that I have my CO2 monitored day and night as a test.

-SWS wrote:

kteague wrote: Your "toe curling and leg stretching" description of your movements sounds nearly textbook for PLMD, which is no surprise. And it is equally non-surprising that your movements would worsen as your xpap treatment improves, as that is a common pattern in PLMD.

I think there just might be a fair number of confounding sleep factors at work.

Thanks for kicking that PLMD reminder in, Kathy. That makes very good sense IMO.

Yes, thank you Kathy. "Confounding sleep factors at work": Talk about a slap in the face to teach me to pay more attention to my self management. I think I must have been dragging my body through thick and thin most of my life. Time to stop and listen. Tune in. Certainly a new skill set to adopt.

BTW: "movements would worsen as your xpap treatment improves, as that is a common pattern in PLMD"; Great.

blizzardboy wrote:Still waiting to see what Muffy thinks...

Muffy thinks that

Muffy wrote:IIWY, the first thing I would do is figure out exactly what it is I was trying to fix.

and in the list of things you've compiled, that is not quite clear. Streamline/organize/familiarize.

Are you still tired? Or is it really fatigue (there's a difference)? What is your Epworth score? If it's like "2", then your guy could very well say, "Yeah, but your tired is not a problem".

Are you chasing AHI numbers? Are you trying to get to "0"? You show him that 2.9, or maybe even the 7s (and since this is the 3rd machine) and he could say, "Well, we're on the right track, give it another 6 months".

Are you fixing PLMs? Again, if the PLMs do not create arousals and/or your Epworth is normal, PLMs may not need to be fixed.

Heart rate, BP, sleep architecture, world hunger? What EXACTLY do you want to accomplish?

While all the "Techno-Flash" looks and sounds impressive, if your overriding problem is a 2-hour block of Wake every night, by the time you finish explaining übersyllogism you could very well end up walking out of there with nothing accomplished.

Where's that sleep diary?

I don't know how long you're going to have with your guy, or what his mindset is, but I think you should get like 3 general points you want to make, and then make them. Tighten your whole presentation up a little bit.

Somewhere along the line I would be looking for:

• Explain the discrepancy between the ETCO2 on PSG, which says pCO2 is in the low 30s in NREM, and the lab -HCO3, which implies that the pCO2 is 50.
• Review the activity of fluoxetine, and consider if it is damaging sleep architecture by contributing to a hyperaroused state, sleep maintenance insomnia, and increased intensity of PLMs.
• List all the symptoms of hypothyroidism you presently have and ask if it's merely coincidental.

Muffy

Sleep Disordered Breathing Issues:

• Unstable breathing when asleep on ASV
• Hyper- or hypocapnia? ABG, PFT and/or electrolytes
• Given location of centrals, truly CompSAS, underlying CSA or plain OSA (centrals are benign)?
• Origin of atypical treatment response: Neurological (meningitis as a 7-month old); Pulmonary (hypoventilation on D/L); Cardiac (not likely)

PLMs:

• Cause - fluoxetine, electrolyte imbalance, "pure" PLMs
• Should they be treated and how?

Sleep architecture:

• Sleep-maintenance insomnia
• Fluoxetine-induced?
• Long-acting sleep aid (e.g. eszopiclone)

Underlying medical disorder(s) e.g., hypothyroidism, FBM:

• Touch and hearing sensitivity
• Body aches
• Bradycardia
• Hypoventilation
• Low body temperature
• Hypotension

Muffy wrote:

Muffy wrote:IIWY, the first thing I would do is figure out exactly what it is I was trying to fix.

and in that laundry list of things you've compiled, that is still not made clear. Streamline/organize/familiarize.

I had an inkling that my summary had not quite achieved figuring-out-exactly-what-it-is-I-am-trying-to-fix. To be honest, its because I don't know with certainty.

Muffy wrote:Are you still tired? Or is it really fatigue (there's a difference)? What is your Epworth score? If it's like "2", then your guy could very well say, "Yeah, but your tired is not a problem".

My Epworth score is currently 9 which is an improvement since the PSGs but apparently I should still be going directly to Dr Sleep.

Muffy wrote:Are you chasing AHI numbers? Are you trying to get to "0"? You show him that 2.9, or maybe even the 7s (and since this is the 3rd machine) and he could say, "Well, we're on the right track, give it another 6 months".

Well I would love to be 0 but am satisfied if I am less than 5.

Muffy wrote:Are you fixing PLMs? Again, if the PLMs do not create arousals and/or your Epworth is normal, PLMs may not need to be fixed.

I would prefer to have reduced PLMs. Hence why I want to discuss changing my ADM.

Muffy wrote:Heart rate, BP, sleep architecture, world hunger? What EXACTLY do you want to accomplish?

I originally queried my GP about my sleep when I was wanting to fall asleep on my desk at work. I had lost interest in doing anything with my kids because I just wanted to lie down on the couch and go to sleep. I wanted my mojo back. So it turns out that someone tells me I have moderate OSA after an at-home study. I'm told that I am sleep deprived. I read about the detrimental effects of sleep deprivation. After more than 2 months sleeping with this S8 autoset machine they gave me I felt a bit better but still not functioning as well as I would hope. My AHI was never less than 5 during this time. Instinctively something doesn't seem right with my diagnosis. I have no clue really what is going on with me. Who can I turn to for answers? The 1st sleep doc didn't want to see me for another year. GP was amazed that I had OSA. So I get on the internet/phone and track down a sleep tech who runs a hospital-based PSG service. He arranges for me to spend a night there and I am then told that I have CompSA with PLMs and that an ASV titration is next. OK, who am I to question these well trained people. I'm off to buy an ASV because I am told it will treat my medical condition - just give it a bit of time. Being a physicist I love to make measurements so I buy some gadgets. One tells me my heart rate and SPO2 while the other records my blood pressure. I want to understand what is going on with my body and record changes. I guess I am not totally convinced with the measurements made during one night of interrupted sleep (nurses coming in, other people snoring, uncomfortable pillow, etc). The body is a complex multivariate dynamic organism. I need a reference point for my data so I log onto this forum and pose the question to the world: CompSA, Hypoventilation, PLMs, Bradycardia and Hypotension? What does it all mean. I don't know. I just have a handful of plots, numbers and comments.

From this forum I learn that my breathing is irregular. I don't know why but I'd like to fix that. I have lots of PLMs but I don't know if they are the cause of my problems I just know that 5-7% cause arousals and I think that arousals means degrading of sleep architecture. I guess that it would be better to have uninterrupted sleep architecture so I'd like to fix that too. The sleep clinic told me that I have clusters of centrals, so I get it into my head that my brain is not telling me to breathe as well as my airway becoming obstructed. My heart is problematic? My head is awry? Or is it really just that all these centrals are normal, simply a part of the natural wake-sleep transition? I don't know but I sure would prefer to not stop breathing in the last part of my sleep cycle, so let's fix that too.

Putting the summary together was very helpful and definitely gave me a clearer picture of all the contributions in this thread. However, my experience of sleep disordered breathing is only some patchy reading of the literature, some PSG reports and now some plots produced by a machine that I really have no idea as to how accurate its results are. My list of potential diseases has grown during this thread. Maybe I am suffering from some kind of autoimmune thyroiditis. I don't really know if I can rule it out or not. Maybe I really do have raging Silent GERD. Maybe my heart valves are leaking, or my metabolism is hypo, no idea. All possibilities seem feasible to me. I don't know what exactly it is that I am trying to fix.

Muffy wrote:Where's that sleep diary?

Please find the most recent post here: http://users.adam.com.au/sixsome/ASV/04 ... 042710.JPG

Muffy wrote:I don't know how long you're going to have with your guy, or what his mindset is, but I think you should get like 3 general points you want to make, and then make them. Tighten your whole presentation up a little bit.

Somewhere along the line I would be looking for:

• Explain the discrepancy between the ETCO2 on PSG, which says pCO2 is in the low 30s in NREM, and the lab -HCO3, which implies that the pCO2 is 50.
• Review the activity of fluoxetine, and consider if it is damaging sleep architecture by contributing to a hyperaroused state, sleep maintenance insomnia, and increased intensity of PLMs.
• List all the symptoms of hypothyroidism you presently have and ask if it's merely coincidental.

Muffy

Nicely put Muffy. I think I get what you were after now.

Cheers,

Muffy wrote:Sleep Disordered Breathing Issues:

• Unstable breathing when asleep on ASV
• Hyper- or hypocapnia? ABG, PFT and/or electrolytes
• Given location of centrals, truly CompSAS, underlying CSA or plain OSA (centrals are benign)?
• Origin of atypical treatment response: Neurological (meningitis as a 7-month old); Pulmonary (hypoventilation on D/L); Cardiac (not likely)

PLMs:

• Cause - fluoxetine, electrolyte imbalance, "pure" PLMs
• Should they be treated and how?

Sleep architecture:

• Sleep-maintenance insomnia
• Fluoxetine-induced?
• Long-acting sleep aid (e.g. eszopiclone)

Underlying medical disorder(s) e.g., hypothyroidism, FBM:

• Touch and hearing sensitivity
• Body aches
• Bradycardia
• Hypoventilation
• Low body temperature
• Hypotension

Very kind of you indeed Muffy. Always nice to have someone complete my homework for me. Thank you.

What just hit me, BB, is that surely you aren't the only person in the world with such complexities to their sleep issues, but what happens to those who don't have the wherewithal you have to press deeper for answers, and don't have the skilled and experienced support team you have here? Scary thought. You are in a good position to at some point reach the answers you pursue, and reading your thread is somehow comforting just knowing the resources that are available here.

kteague wrote:What just hit me, BB, is that surely you aren't the only person in the world with such complexities to their sleep issues, but what happens to those who don't have the wherewithal you have to press deeper for answers, and don't have the skilled and experienced support team you have here? Scary thought. You are in a good position to at some point reach the answers you pursue, and reading your thread is somehow comforting just knowing the resources that are available here.

Hi Kathy, I guess maybe that is symptomatic of any emerging field of medicine. I am very grateful for the kind people of this forum. A lot of time, patience and energy is given by some people here.

My head would be exploding without the interaction and input that I have gained here. Let's hope someone else apart from me can benefit from this thread as well.

blizzardboy wrote:My head would be exploding without the interaction and input that I have gained here. Let's hope someone else apart from me can benefit from this thread as well.

If nothing else, we're all enjoying the comedic interludes parts of this thread have provided

I know what you mean bb, at least the discussion and brainstorming help one organize their thoughts. The 2x4's of reality that some dish out also help. For one poster there's probably another 100 lurking so somebody, somewhere, is learning something (or just getting more confused like the rest of us ).

Hope you get it all sorted out. Muffy made some great suggestions (not that she needs _me_ stroking _her_ ego!)

echo wrote:Hope you get it all sorted out.

Hi echo, Well maybe a step closer to Nirvana:

http://users.adam.com.au/sixsome/ASV/0410/042910/

Last night's data with Epap increased to 10 from 8, as indicated by -SWS and DSM. Obvious improvement in respiration stability. I also wrapped some tape around the nose pieces of the Mirage Liberty in attempt to stop them popping out of my nares. Seems to have worked given the leak rate data.

D-day.

Yay Are you using a chinstrap with the liberty to help with that mouth leaking (to stabilize the chin, so jaw doesn't fall, etc, you know the drill). I couldn't get my liberty to work without a chinstrap (rather, pap-cap), my mouth would be forced open and jaw would drop, no nasal breathing, and leaks all over the place.

Gosh, your respiratory rate was really high on some of those previous days I don't understand any of the pulmo stuff so I won't even pretend.

So instead I'll comment on your avatar. TELL ME that YOU changed it! You feel like you're "flying high" today?

echo wrote:Yay

Yay


I echo echo...

echo wrote:Yay Are you using a chinstrap with the liberty to help with that mouth leaking (to stabilize the chin, so jaw doesn't fall, etc, you know the drill). I couldn't get my liberty to work without a chinstrap (rather, pap-cap), my mouth would be forced open and jaw would drop, no nasal breathing, and leaks all over the place.

Gosh, your respiratory rate was really high on some of those previous days I don't understand any of the pulmo stuff so I won't even pretend.

So instead I'll comment on your avatar. TELL ME that YOU changed it! You feel like you're "flying high" today?

Well I always used to use a chinstrap with the Liberty to keep my jaw in place - I can get big-time mouth blowout. For some reason I have been trying it without a strap lately. Why was that now...hmmm...probably just because I handed my trial strap back and haven't got around to buying another. Oh, also because I was trying to get the Quattro to work but I just haven't been able to stop the bridge of my nose from getting sore. Maybe time to again get a chinstrap for the Liberty and try a thicker liner for the Quattro. Pap-cap , eh? (busily Googles for info...YouTube video digested...web pages consumed) Looks good. Does your Papcap lift your jaw more up toward your nose rather that back toward your ears? That loop on top would be great for the Liberty - I used to tape my hose to the head gear to reduce tugging on the mouth piece. Hang on...CPAP.com want USD77 for shipping to Oz (BB gets out sewing machine and starts trying to make Papcap...)

I was happy to see the improvement in stability of my respiration rate. Maybe a couple more iterations in settings will have me humming...?

Yes, I changed my Avatar. That's me up the top of a 50-m tower, hanging back on a lanyard and snapping myself with a fish-eye lens. One of my fave fotos.