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Since Lights Out was ~2130, then the initial inability to take sleep must also be counted. With Wake and WASO concentrations marked in red:



Sleep Efficiency classification should be downgraded from SS to RS.

Muffy

Muffy wrote:Interscorer comparison shows Muffy demonstrating more sleep fragmentation (yet this may be somewhat due to the limitations of the original hypnogram, which makes it difficult to delineate stage changes)...Respiratory scoring shows a few dissimilarities, but generally seems pretty close.

Hi Muffy, Thanks for that - good to have confirmation that my Sleep Centre scoring is consistent with yours.

Muffy wrote:Since Lights Out was ~2130, then the initial inability to take sleep must also be counted. With Wake and WASO concentrations marked in red...Sleep Efficiency classification should be downgraded from SS to RS.

Can you please spell out SS and RS? Sort-of Stuffed and Really Stuffed? Short Sleeper and Regular Sleeper? Cheers,

blizzardboy wrote:

Muffy wrote:Since Lights Out was ~2130, then the initial inability to take sleep must also be counted. With Wake and WASO concentrations marked in red...Sleep Efficiency classification should be downgraded from SS to RS.

Can you please spell out SS and RS? Sort-of Stuffed and Really Stuffed? Short Sleeper and Regular Sleeper?

Sorta Sucks to Really Sucks.

Muffy

blizzardboy wrote: My daytime symptoms:

• fatigue
• drowsiness
• frequent sighing
• breathlessness with exertion
• low blood pressure
• acidic perspiration: I was told I have "acid skin" by a fitter-and-turner I used to work with due to leaving visible finger prints on most metal I touched!
• tongue is sensitive to acidic foods, gets painful, red and lumpy
• get small bumps forming at the back of the roof of my mouth from time to time, like little blisters

My nighttime symptoms:

• migrating joint pain (hands, feet, shoulders, neck, ankles, knees, hips)
• morning stiffness (alleviated with movement)
• low body temperature

BTW, I rang my sleep doctor today and left a message - I am starting my push to get a full PFT. Cheers,

This sounds really familiar to me.

I don't know how far you will get with the "fibromyalgia" analysis. To my mind, it is all a black hole of "cause and effect."

I have had chronic pain and insomnia for 30 years that has gotten progressively worse. I have had fibro for 20, "officially" told that 20 years ago. Confirmed by 3 other docs in the past year.

All it really is, is a collection of symptoms. You manage tge symptoms - medications, stretching, exercise, relaxation, CBT. The only thing that has really helped me is xPAP and finally getting an OSA/CompSA diagnosis.

I used to do triathlons, bicycle racing. Now I am back up to being able to walk for 30 minutes a day without too much pain. That is with a fentanyl patch and other meds ...

I guess I can see any diagnosis fitting in with a fibro analysis, and just about any cure! Should keep you busy for a while

My base understanding right now is that fibro symptoms align with what Hans Seyle called the "General Adaptation Syndrome." basically, that is the generalized and cumulative effect on the body of stress - dietary stress, allergies, emotional stress, lack of sleep, etc. Seyle is the one who "invented" the concept of stress. Though his understanding goes beyond the common day-to-day us of the term, as he was an endocrinologist. Some very interesting biological observations on his part, on cancer, etc.

So he recommended yoga, meditation, relaxation to counteract the cumulative general stressors. Those help a lot, cerainly worth persuing, I've been meditating for 30 years, but ...

Macrobiotic or ayurvedic duets might help, acupuncture, etc. But you already knew all that, right?

Sorry, I don't mean to be negative. I'm just not sure where cause and effect come into play, and what is a solution, versus what is just managing symptoms ... Good luck!

Michael

blizzardboy wrote:Maybe I am oscillating between acidosis during the day (hypercapnic) and alkalosis at night (posthypercapnic due to mechanical ventilation on ASV)!

Why not buy some ordinary pH test strips down at the chemist or pharmacist? You can detect those hypothetical oscillations in saliva or urine pH. Alternately you can pin-prick as diabetics do daily to directly measure your blood pH.
http://www.google.com/#hl=en&q=%22measu ... 38f65f938d



Unadog, I'm admittedly a little confused about your recommendations regarding the management of debilitating symptoms. On one hand I think you might be saying there's not much value in managing symptoms here. On the other hand I think you might be saying that you think some of your symptom management techniques are absolutely great. I agree that it makes perfect sense to attempt to address any formidable symptom set's primary cause...

But does it ever make sense to additionally manage symptoms along the way---as the primary problem itself is being pursued? For instance, now that ASV is yielding improvements for you (big congrats! ), do you plan to discontinue your previous symptom management techniques anytime soon? Or do you plan to continue with symptom management as a supplementary treatment regiment? What general guidelines/advice might you recommend for others in similar circumstances? Thanks.

-SWS wrote:Unadog, I'm admittedly a little confused about your recommendations regarding the management of debilitating symptoms. ...Or do you plan to continue with symptom management as a supplementary treatment regiment? What general guidelines/advice might you recommend for others in similar circumstances? Thanks.

Probably because I am so confused myself, -SWS!

On the positive side, as far as tools to manage symptoms - I could not imagine keeping going without them! So I value them very highly. In more or less priority order for me:

1) Sleep with the ASV!

2) Meditation - a minimum of 1 hour am and 1 hour pm. I don't sleep if I don't do my pm meditation.

3) Pain medications. Heavy duty opiates in my case. Also Lyrica for neuropathic pain, sleeping pills, etc.

4) Relaxation tapes

5) Progressive relaxation

6) Meditation tapes (when in bed and can't sleep)

7) Stretching

Walking

9) Yoga

10) Massage

Exercise and sports and swimming in particular were a huge help, before things got worse years ago. I have had a steady, continouis reduction in physical capability/activity over the years. So more active remedies still might suit folks like BB better than me!

I do have chronic mechanical pain - spinal stenosis (nerve pain) in the neck and shoulder on both sides, sciaticaand DDD in the low back (since a bike crash in a race in 1985), a torn shoulder socket. So those are primary "causes" of pain. And they are a "secondary sleep disorder" - I have a lot of arousals because of pain when I don’t take pain medications.

Untreated OSA and undertreated pain have both done a lot of systemic damage for me over the years, so I am hoping that keeping those 2 under control and managed will help my body and brain to heal, and that I will see continual improvement! Both cause long tem and some permanent, brain impacts. One doctor says he can tell just by looking at an fMRI how long someone has been in pain. The brain shrinks up to 11%, by a specific amount per year. Maybe - just maybe - those are the core problems, and sleep and meds are a solution??

My comment was more about trying to figure out what the core problem is, and whether we are really making "progress" in some cases. BB has already posted a rant about having this vaguely defined disease called fibromyalgia:

blizzardboy wrote:I don't like to admit this because I don't want to have a poorly-understood disorder. I just want a meat-and-veg type of problem that is fixed with a not-tested-on-fuzzy-animals-guaranteed-not-to-have-nasty-side-effects-over-the-counter medication, or with an easy-to-buy-setup-and-use device such as an ASV. Tada...problem solved. I don't want to have the ill-defined problem that requires a well-managed, multi-pronged treatment regime including exotic massages, bleeding-edge drugs, sensual massages, ADMs, gentle massages and hours of mind-stretching CBT. Am I really going to end up with a diagnosis of UARS and FM to explain to my work colleagues and try to convince my GP about? Forced to dabble in acupuncture, touchy-feely massages, meditation in a pyramid, and consumption of foods that might as well have been extracted from a worm farm? Get me that PFT...now!

So, um – yeah BB. Lots of touchy/feely acupuncture, massage, CBT stuff.

And BB doesn't want that, so he finds acidosis. Is that a cause of pain? Or an effect of already existing sleep disturbances alpha intrusions? Or an effect of fibro? And does that lead to a solution, or just the knowledge that fibro causes alpha intrusions which cause sleep disturbances? Or sleep disturbances cause pain - maybe via acidosis - which cause fibro?

I **really** believe in treating symptoms, while trying to find the core problem! I just am not sure when we get into circular definitions, or whether a name - "Fibromyalgia" - really adds anything to the diagnosis at certain points? What is the chicken, what is the egg? And what is a tautology that doesn’t add anything to the diagnosis – just another way of saying the same thing??

For example, I have arousals that fragment my sleep. Some of the arousals are caused by pain. I think some of the pain is a primary cause (mechanical pain.) But, it is also an **effect** of fragmented sleep - fibromyalgia pain.

So OSA is a sleep disturbance, great, a primary cause. Threat that! Yeah - about time – I was told for years that physical therapy was a “cure”, but it was worthless without treating the OSA! SOB’s, I told them from 2001 to 2007 that PT didn’t help, it wasn’t just a matter of “strengthening the muscles …”, I used to work out 6 hours a day …

But then I also have centrals. And I am told that opiates can cause centrals. So I try to go off them, but I can’t sleep without the strong pain meds. So I go back on them, and sleep, and guess what – no centrals, even while on opiates! So do they **really** cause centrals, or does the underlying pain cause the arousals which cause centrals? It is very odd to me that that is an accepted tenant of sleep docs, but is clearly false in my case….

And so it goes. People with fibromyalgia are highly sensitive. Does that **cause** arousals, or is it a product of lack of sleep to begin with, so that it is self perpetuating. Acidosis or alkalinity. Is it caused by the sleep apnea, so that you are describing a pathway? Or is it a root cause of pain, and treating it is a cure?

I have heard so many different theories, and I have spent thousands of dollars per year fotr at least 20 years pursuing different solutions, so that I am not sure what to believe, or who to believe, or what avenue to pursue. Physical therapy 12+ times, chiropractic, rolfing, feldenkrais (great tool), Alexander, acupuncture, thyroid medication, vitamins, diet, enzymes, allergies, injecting HGH, Vitamin D therapy, 30 different types of pain meds.

I honestly don’t know what to believe in at all, and each one sounds like another trip down the rabbit hole. Some are mainstream theories, some are whacko theories.

So – certainly use tools that work and help with symptoms! Keep fit, manage stress, lose weight, eat a healthy diet. Certainly keep looking for causation! But …. It is hard to know when you have a solution, or just a different way of describing the same cause and effect. Or a different level of analysis that describes a pathway – “acupuncture clears out the Mu receptors for pain” – that don’t really tell you anything new …. Like the label fibromyalgia …..

Sorry. Long rant. Confused, frustrated. Lost. Now a disbeliever in some “cures” … but I know good sleep is a core need! Hard to achieve, easily disrupted … b y heat, humidity, noise from fans lately …

Cheers!
Michael

unadog wrote:So OSA is a sleep disturbance, great, a primary cause. Threat that! Yeah - about time – I was told for years that physical therapy was a “cure”, but it was worthless without treating the OSA! SOB’s, I told them from 2001 to 2007 that PT didn’t help, it wasn’t just a matter of “strengthening the muscles …”, I used to work out 6 hours a day …

But then I also have centrals. And I am told that opiates can cause centrals. So I try to go off them, but I can’t sleep without the strong pain meds. So I go back on them, and sleep, and guess what – no centrals, even while on opiates! So do they **really** cause centrals, or does the underlying pain cause the arousals which cause centrals? It is very odd to me that that is an accepted tenant of sleep docs, but is clearly false in my case….

And so it goes. People with fibromyalgia are highly sensitive. Does that **cause** arousals, or is it a product of lack of sleep to begin with, so that it is self perpetuating. Acidosis or alkalinity. Is it caused by the sleep apnea, so that you are describing a pathway? Or is it a root cause of pain, and treating it is a cure?

I have heard so many different theories, and I have spent thousands of dollars per year fotr at least 20 years pursuing different solutions, so that I am not sure what to believe, or who to believe, or what avenue to pursue.

Hi unadog, You are a fighter!

Early on in my post-grad studies I developed a theoretical model to fit parameters to experimental data that I was generating, and to my eye it fit the data well. So I took an example plot to my supervisor and declared that I had a sound model. He wanted proof aside from that evidenced by my eye and taught me about statistical analysis of data. I went away to analyse the goodness of fit of the data on the basis of statistics and realised that the fit was not as significant as I had first reasoned by eye. So we dug deeper and realised that diffusion would play a significant role in the experiment. On adding diffusion to the model the fits became statistically significant.

Last night I watched a program about a jet pilot saving a stalled airliner at night inside an advanced flight simulator. To be successful the pilot said that he had to rely on the instruments not on his intuition and feelings. He said that he could feel like he was in a steep bank but the instruments showed that he was actually flying straight and level.

The moral of the story? I would rather rest my hat on what the instruments tell me rather than what I feel, or what others suppose. This modus operandi has served me well as a scientist and a journeyman of life. I try to teach my students that instruments don't "behave mysteriously" (as they might have me believe) but that there is a rational and verifiable explanation for the behaviour of the machine. History shows that people will tend to create explanations for phenomena, regardless of the presence of scientific proof.

Show me the data. Show me the PFT! Cheers,

The first time my health went haywire (I had been recovering from a serious respiratory infection that I could not shake until they dropped a broad-spectrum antibiotic on me), my PCP eventually told me that I fit the definition for chronic fatigue syndrome. He said: "It is my duty to tell you that you now meet the definition for CFS. But I'm NOT going to write that in your chart, and we're going to pretend that you do NOT fit that definition, because I don't consider it a clinically useful diagnosis. My way of thinking is that calling you CFS would be a way of saying that there is no need to keep trying things that might help, since at this point that syndrome has no specific accepted approach for treatment, and I want to continue trying things that could help you."

Sometimes it helps to give something a name. Sometimes it doesn't. It depends on why you give it a name. What does it change? Does knowing other people face similar problems make the situation easier?
In medical science, a collection of symptoms may be given a name for purposes of research and discussion. Calling a collection of symptoms a "syndrome" is a useful thing to do for researching a way to approach a particular set of problems. But when it comes to medical practice, giving a name to the set of problems is only useful if it opens up a treatment approach that would otherwise not be available to the patient for insurance reasons or something. Other than that, you alleviate suffering as you take stabs in the dark at where you assume the unidentified monsters may be lurking.

Pressurizing an airway is a nice safe thing to do for someone, so it may be worth doing any time that someone's breathing at night seems off. As treatments become more aggressive beyond that, it is important, in my opinion, not to neglect the overall common-sense things, such as exercise, diet, sleep hygiene, rest, family, friends, joy, love, purpose, and focus. A little placebo effect can sometimes then be the cherry on top.

jeff

blizzardboy wrote:History shows that people will tend to create explanations for phenomena, regardless of the presence of scientific proof.

Show me the data. Show me the PFT! Cheers,

Yes, BB. I do have a Black Belt Certification in 6 Sigma ()statistics and quality systems), plus a degree in Logic, so I am a bit on the same wavelength.

And of course as you know, correlation is one thing, proving cause and effect is quite another ....

As I said in another thread, the problem with all of these whacko theories is the "law of small numbers." With a sample size of 2, you can prove anything! And with a 72 hour flu bug that will get better no matter what you do, even painting the room blue can seem to have a correlation, and so it becomes the latest internet miracle antecdotal cure!

Unfortunately, one thing that the doctors lack is any data on **how we feel**! So you get things like those you had: "Have you been depressed lately", or "Everybody has a few aches and pains as they get older." No, but I guess maybe if you have OSA and haven't had any REM sleep in a years ... that could that have something to do with it?

In your case it sounds like you are on a quite positive course! So I hope that a) the ASV and changes to date are healing your longer term, systemic issues, and you will get past all of this, pain included, or b) they can find you a real, meat-and-potatoes cure in a horse pill that gets you past it all in 24 hours!

The most systematic doctors that I have found are the rheumatologists (or maybe the neurologists, though yoiu never know where that can lead.) The ones that drove me crazy are the PM&R (Physical Medicine and Rehabilitation) guys. Just keep going, tough it out, lift weights, strengthen the muscles. When I was a semi-professional cyclist, training 6 hours a day, and crashed and had sciatica, they wanted me to come in and ride a stationary bike for 15-30 minutes as "rehabilitation." Huh?

Cheers to you! Thanks for keeping us entertained! I hope you just keep healing. I do believe a lot in meditation and exercise, though CBT is a PITA!

Now can you explain this whole Dillion thing? My son seems to like music ....

Cheers!
Michael

unadog wrote:Now can you explain this whole Dillion thing?

I think this is Muffy's "60s pop star" of choice: http://www.dillonaero.com/.

jnk wrote:Sometimes it helps to give something a name. Sometimes it doesn't. It depends on why you give it a name. What does it change? Does knowing other people face similar problems make the situation easier? ...it is important, in my opinion, not to neglect the overall common-sense things, such as exercise, diet, sleep hygiene, rest, family, friends, joy, love, purpose, and focus. A little placebo effect can sometimes then be the cherry on top.

Hi jnk, Wise words IMO. Cheers,

DreamDiver wrote:This sounds really familiar to me.

Hi DD, And I am convinced for now that my joint pain is caused by my use of CPAP due to the rapid and acute onset of this symptom, the total absence of any symptoms such as this prior to CPAP use, and the presence of pain typically only following CPAP use. Hence why I am focused on an explanation for joint pain centred on respiration and blood gases. I just don't feel the need to walk into the FM wood for now. Cheers,

This "second life" of the thread is absolutely fascinating... thanks all! BB perhaps if it is indeed alternating cycles of dominance of acid vs base in blood pH between day and nightime, I wonder if dosing with fairly large amts of say magnesium & calcium to move to more base and then high protein to move to acidic pH might help...only if that theory is supported by testing of course. Fascinating y'all!

jnk wrote:The first time my health went haywire (I had been recovering from a serious respiratory infection that I could not shake until they dropped a broad-spectrum antibiotic on me), my PCP eventually told me that I fit the definition for chronic fatigue syndrome.
....

That is really a nice summary Jeff! Certanly more succinct than mine! And all of this tine I thought you were just whacko from living in the city too long .....

I do believe in doing constructive things just to keep positive - for tge placebo effect - if need be. Acupuncture, massage, feldenkrais is good ....

blizzardboy wrote:I just don't feel the need to walk into the FM wood for now

Might as well check in to the nursing home at the same time. You ain't neve rcomng out of that maze!

There is one good book on fibro, I think it is called "The Divine Comedy.". Describes all of the progressive levels ... hell, purgatory, that sort of thing ....
     
“In the middle of the road of my life I awoke in the dark wood where the true way was wholly lost”

Cheers! Enjoy your alternate path ....
Michael