Sleep Apnoea revisited

2 07 2013

If you’ve been following this website for a while, you will remember that I was diagnosed with Sleep Apnoea some months ago.  In a desperate attempt to shake off this evil chronic fatigue that’s messed with me for over two years now, I bit the bullet and purchased a CPAP machine (Continuous positive airway pressure).  In truth, what I got was an APAP, the A standing for Automatic.  Such machines detect how much pressure one needs, and ups or downs it as required….

At first, I wasn’t going to bother.  As my doctor said to me, the tick (that bit me 2 ½ years ago) didn’t give me sleep apneoa, I quite likely have had it for 10, 20, 30 years, maybe longer……  but everything I read about Apneoa told me it wasn’t good.  The people who did my sleep study also have a vested interest in selling you a machine, and theirs were around the $2300 mark, and I simply don’t have that kind of money available.  All spent on solar panels!

Anyhow, research on the internet discovered a different brand that ‘only’ cost $1000, and I actually managed to get an ex-demo one for 10% off, which happened to have only been used for six hours…..  Why would anyone get rid of a six hour machine?

Because this site is getting quite a few hits from my first post on this matter, I thought I’d report on my experience.

The company I bought it from were faultless.  Everything arrived expediently, and the owner even rang me for a courtesy call and answer any questions I might have had.  He even rang me back when I emailed him a query!

Of course, it’s made in China.  It works just fine, maybe a tiny bit noisier than the Fisher & Paykel I used at my sleep study, but that really doesn’t bother me one bit.  The left half of the device is a humidifier.  It holds more than enough water to last all night, and it sits atop a small heated plate that ensures enough evaporation occurs to create the water vapour needed to keep my airways from drying out.

cushion

Nasal Pillow mask

Because I wear a full beard, and I’m not shaving it for anybody or anything, I bought a nasal pillow instead of a mask.  Yes I know, not a great look, but hey, when I put it on I turn the lights off…!!  I wore a nasal mask (as opposed to a full face one) during the sleep study, and I found it unsatisfactory…..  uncomfortable, and it leaked on my moustache.  The nasal pillow injects air directly into the nostrils; it’s made of soft silicone and is reasonably comfortable though I have to say I’m finding adjusting the straps endlessly frustrating.  Too tight, and I get a sore nose.  Too loose and it slips out of place and starts hissing at me waking me up…..  After two months of use, I can’t say I’m happy with it.

I first heard of these machines from a bee keeper I met last year.  She told me it changed her life and could not recommend going through the whole rigmorole of sleep studies and buying an expensive device enough.

Unfortunately, I have to report this has not changed my life, though Glenda is of the opinion it could well lengthen it.  Our neighbour John, as it turns out, also uses one, mostly to stop his snoring, but he tells me he hasn’t noticed any difference in the way he feels either, though of course he doesn’t suffer from chronic fatigue, I envy his energy levels whenever I see him working away on his property…

As my doctor said, the tick gave me chronic fatigue, not Sleep Apneoa.  On the upside, I’ve completely stopped snoring.  So even though my blood might be oxygenated all night long, the fact that I wake up several times a night to readjust the mask means I rarely wake up any fresher than before, and I still suffer from extreme tiredness upon doing anything physical.  Like climbing ladders!  I recently moved our TV antenna sideways 12 metres, a job I would have done three years ago in a couple of hours……  but this time it took me three days.  The middle day involved doing nothing my leg and butt muscles were so sore.  And for what?  Climbing up a ladder a dozen times?  Believe me when I say I’m tired of this business………

I remember well my mate Serge leaving a comment at my first post on this saying he knew someone who had one of these machines, gathering dust under his bed….  now I understand why.

UPDATE

Like everything in life I guess, it takes time to adjust to all sorts of things.  I’ve now managed to adjust the mask so it fits perfectly and comfortably, and frankly I could not sleep without it now.  18 months into the experiment, I have had to buy a replacement mask (on special for $100, or half price!).  The old one is just falling apart from the effects of perspiration, one of the reasons I have to move to Tasmania….  I’m over perspiration and humidity, just does not agree with me.  I’ve now taken the machine twice to Tassie when we’ve been visiting (drooling..?), and whilst it’s a drag to carry this on a plane, it won’t be long before it’s nicely nestled in a bedroom somewhere in Geeveston.

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26 responses

2 07 2013
Greg Bell

Mike – that’s really disturbing that a tick bite could take you out like that. You’re a native and have been bitten by ticks all your life supposedly – what was different about this one?

Any clue as to what’s actually wrong with you? Organ damage, blood parasite, persistent bacterial infection?

2 07 2013
mikestasse

Hi Greg……

After much research with Dr Google, I think I may have some version of Lyme disease. http://en.wikipedia.org/wiki/Lyme_disease

I have been bitten by lots of ticks, but obviously I was lucky before, all it takes is one that carries the disease….. There was an interesting program on Radio National about this. Apparently most doctors (though that’s changing..) don’t believe Lyme is active in Australia, but more and more doctors treat it now. I’m going to see if I can get an appointment with one in Eumundi (which is 25km away, Grrr). There are even moves afoot for such treatment to be allowed under Medicare, and testing to be done in Australia instead of being sent to US pathologists (!) at $300 a pop! My doctor says it’s rife now……

3 07 2013
Greg Bell

Mike – as a frequent benefiter of your writing here, I’d like to spearhead a campaign to get you healthy by helping to pay for tests and doctor’s visits and even overseas tests. I’m pledging $25 towards this. Who else is with me if Mike will set up a “Donate via PayPal” button in the sidebar here?

3 07 2013
mikestasse

Geez Greg, that is extraordinarily generous of you….

I actually tried setting up a donation button on the sidebar, but I got lost in the process… my son’s up for a few days, I might get him to help..

3 07 2013
Greg Bell

I’m a web developer and can help. Do you already have a PayPal account? If interested, I believe you can see my address to email me directly…

3 07 2013
mikestasse

Yes I do have a paypal account… but you’d have to have access to my dashboard to add the necessary widget…

OK… Alex has sorted it!

2 07 2013
Peter Cook

I’ve been using CPAP for about 11-12 years. Most of that time I’ve used a nasal mask. Nasal pillows leave my nostrils irritated (red and painful). Throughout almost that entire time I’ve had a moustache of some sort (goatee or beard) that should in theory impact on the air pressure, but in practice it makes no difference at all.

I sleep fine with the nasal mask. I buy them from the US cheaply every couple of years. While they expect a prescription for a mask, they waive the requirement if they’re shipping it overseas. They do however offer to sell you the mask in parts (that costs you the exact same in total to the complete mask) to get around the prescription requirement if you’re in the US and don’t want to pay to see a doctor to get a prescription for a replacement mask. That can be quite handy if the tubing is fine but the mask itself has snapped, as they sometimes do.

2 07 2013
mikestasse

Thanks for that info Peter….. I’ll look into it.

3 07 2013
Terry J Wall (@terryjw7)

Hi Mike
Sorry to hear of your health challenges..I have a solution that may be of interest:

I have spent over 20 years trying to work out why human health seems to be so disease first and then diagnosis, and often followed by expensive treatment. I have a back ground in farm economics and management and farmers sure as hell would go broke in a flash if they looked after their animals in such a manner.

As a result of this research I suggest that there are common sense reasons why we face a myriad of health issues. It is to do with the chronic and acute shortage of micro-nutrients in our soils/ food. WHO acknowledge this deficiency and people living in rich trace mineral environments, such as the Mediterranean and Senegal which have higher mineral intakes have health outcomes that confirm this hypothesis.

So in a nutshell, that is my suggested solution to many diseases including energy and sleep deprivation.

Now I don’t want any shit from people accusing me of just selling a supplement – what the hell am I supposed to do? I had to make one to prove my hypothesis and the fact that most people think that it works well is NOT my bloody fault, I am not a charity, but in your case I would be happy to give you 2 months trial free ($40) – cause we love your blog!

Sorry … should not go off like that, but the odd blogger winds me up. I guess they would rather die than consider real prevention, and invariably do; die that is!

If you are interested send me an email tj.wall at bigpond dot com and I will send you a copy of my “Spotlight on Well Being” broad sheet.

Cheers

3 07 2013
mikestasse

Hi Terry…. thank you for your concern. As it turns out, I am well aware of the value of micro nutrients. I don’t know where you’re from, but we have a guru of sorts here, Graeme Sait, though he believes in feeding them to the soil rather than taking them as supplements…… http://www.nutri-tech.com.au/ and I encourage all my readers to follow up on this if they grow their own food. Graeme is a fascinating bloke who has given many talks to our Permaculture Noosa membership…

Our soils are so poor in micro nutrients, and the quality of the food sold everywhere is so poor that I believe most people are nutrient deprived. And I have no desire to die rather than take real prevention!

I have gone to some trouble to enrich our garden in these nutrients… I thought it was working!

I usually have a very good immune system, hardly ever catching colds etc, and I heal from scratches etc (common around here!) at a speed that amazes even my wife (who is a Nurse). But this tick bite REALLY knocked me for six… the doctor told me I was her sickest patient for the whole year……

I think my diet is much better than most, and I stay well away from smog and pollution, so this bout of fatigue is really puzzling…

3 07 2013
len gardener

doctors hounded me for years to buy a CPAP fist study(studies are scientific more than medical) I was alcoholic at the time and that doc’ said she could not be sure, tried a night in hops’ with a CPAP tore it off me face I get claustrophobic. so couple decades later of convinced I was not apnoea I have CFS an anomaly really.

anyhow saw an ENT specialist he worked on my sinuses no more snoring now, sinuses can do that imitate apnoea. so I did their pestered after me sleep study after a heart failure event, and yup they had pestered me for years to now find I am not apnoea and neve was.

what I say is the science as stated has vested interest in selling awful CPAP machine have heard of others taking their machines back as it offered no help.

CPAP is a very draconian machine, no good for claustrophobic’s.

good luck mike

3 07 2013
mikestasse

Hi Len, been to an ENT specialist, had my sinuses CT scanned, they’re perfect…. story of my life really, they never find ANYTHING wrong with me!

3 07 2013
len gardener

more on science making profit and dividends for shareholders, maybe the $1k difference in price is the corruption award?

the second time when I was in having a stent fitted the surgeon’s registra (from asia and hey I could care less so long as doctors are suitably qualified).

first day he was on me saying I had apnia and this caused my heart failure and if I did as he said they could fix my atrial fibrolation and cardio myopathy, with 2 top chambers and valves dilated. using a CPAP would do the trick, k r a p I said I don’t have apnia. so he slipped an oxygen monitor peg on my finger annoyed me all night, if I took it off nurse came running in and put it back on.

cut to the chase len he said from my oxygen clip I was apnia, so sleep scientist came around and gave me the can save you pitch I said no I had sinus issues he didn’t want to know about, then he sent his 2 torture ladies around to plonk a CPAP on me face it lasted nana seconds ripped it off, the ladies took their torture implements and left poste haste.

anyhow I had a proper sleep study no apnia, scientist said you didn’t sleep on your back len, I said no I sleep on my side, besides I said you didn’t ask me to sleep on my back. anyhow wife says I don’t snore in any position anymore.

medical people should not get kick backs from products they prescribe.

take care I dunno how you sleep with it mike?

3 07 2013
mikestasse

Hi Len……… my sleep study said I did have apneoa. My O2 levels dropped to 72, which my doctor said was incompatible with life……

Snoring BTW is not necessarily a sign of apneoa. You can have it without snoring and vice versa. With the machine, my snoring has completely stopped. And I’m amazed any doctor would diagnose you with apneoa just from your O2 levels from a finger clip. There are lots of reasons why anyone’s O2 levels can fall dramatically….. and it doesn’t mean you have apneoa.

4 07 2013
len gardener

that’s how bent they are mike.

they won’t remove their apneoa diagnosis from my records, they can use things to say you refused treatment so they may choose not to treat you.

their preliminary was I snored. when on my back.

anyhow clean sinuses so real good now.

you sound like a good diagnosis but how many out there have been bullied?

4 07 2013
len gardener

oh forgot my O2 levels affected by failing hear

4 07 2013
Glenn

Mike … an interesting post this one.

From what I can gather you are an avid ‘tinkerer’ always playing with the possibilities of life. And this cronic fatigue thing seems to be asking a lot of you. All I can really do is wish you the best of luck.

I don’t really have any answers for you. However, sometimes by addressing one seemingly unrelated problem, another seems to come good at the same time. The mysteries of this interconnected life?

I resently went full blown Paleo, cutting out all grains and dairy. And instead, eating lots of good healthy fats, fruits, veggies and meats. I was hoping to shed a few pounds and and add a little strength.

And I do seem to be increasing muscular strenth and decreasing body fat (quickly) while eating lots of yummy food. However another surprising benefit is almost all inflammation felt in my back, connective tissue and joints seems to be disappearing!!! Mind blowing eally.

Might be another thing worth looking into.

Another ‘off beat’ suggestion is if you aquired this pesky little problem in a subtropical hot environ, I wonder how ‘it’ and ‘you’ would do in a cool temperate environment like SOuth Island NZ or Tassie. Who knows?

And thanks for the link on micronutrients. Something else I am going to have to look into.

Cheers,

Glenn

4 07 2013
len gardener

g’day glenn, I have T@DB as well so all grains had to go my own determination, medicine can’t help, not can they help in determining why someone has things like CFS, lymes, narcolepsy and FM etc(around 30 of these lifestyle diseases that medicine knows little about includes hypertension. all caused by damage at genes level to the immune system, so a tick or mossy bite serious operation can bring on these things.

people in south Australia get CFS so climate seems not to be the trigger, some CFS sufferers sleep 22 hrs out of 24 we had neighbour like that. damage to system related to fresh food that isn’t and is empty of nutrients(monocropping) and chemical residues in all foods.

my own research has me looking for alternatives to help immune system changes can be very suttle and take 6 months, but science not allowed to research CFS and others because it will cut right across the sacred cow of agriculture, most meats and milk people buy are full of anti-biotic residuals(why our viruses are so hard to fix) lady got flu and now almost crippled same cause as CFS.

I took now of all I found as I researched why and where I am at, scary and disgusting, what they feed us, we are now growing most of our own food fruits on the way will help but not enough try to grow their own

take care one and all

len

4 07 2013
glenn

Some interesting insights there Len. Much thanks. Glenn

5 07 2013
len gardener

yes, will be following mikes journey to see if 1.. the CPAP gives the restorative sleep, that will always be a plus waking up almost refreshed. 2.. that the CPAP control gives him some management of CFS(which I also have).

I get around 7 to 10 hours sleep is it restorative? probably not as I am just as tired through the day and will take just as much sleep on consecutive nights, but that’s a CFS thing.

so hope mike keeps us updated, and far more I hope he gets great results.

i’d only add look for supplements that the body needs, a good multi vit’ with iodine and zinc, vit’ B; C; D(no good taking C without D) none of these vit’s are stored they get used so need daily replacement, also krill of fish oil.

anyhow stay happy

len

5 07 2013
glenn

Len I don’t much like supplements made in the lab. I kinda prefer something a little less tampered with so I go for the fish oils, spirulina, chlorella and kelp. Having said that, where I’m at, with long winters, maybe a vitamin D when the time comes round might be a good idea. Rock on Len.

5 07 2013
len gardener

gotta do what I gotta do I suppose. I get a lot of sun good skin tone but low on D, D mostly made from wool grease. due to being on rat bait (warfrin) since heart failure I can’t eat any vit’ K if at all it upsets the effectiveness of the warfarin. so seeweed is out tried something like chlorella but it messed up the INR, tried olive leaf stuff the same, loose leaf lettuce as well broccoli not too bad, but need not to hog out on it.

there was a seeweed product from NZ but it had vit’ K and not recommended for warfarin takers, same with geoderma mushroom product, both could do my CFS and T2DB good but?

so I take what I can even my doc now taking milk thistle tab’s, after years of frowning at me for taking non medical supplements.

the thing is all we can do is compare notes me no critic, the med’s have no idea what CFS really is, it is a misnoma and anomaly, an umbrella they put all us under who have issues they can’t ID, had it for at least 15 years now still about the same except I know more about the “why” from my own research, growing most of our own vege’s now drinking rain water, and fresh air in rural.

went to some FM(inc’ CFS) support group meeting about 26 or so attended from listening to chat that was 26 different diagnosis. friend had CFS with big dose of narcolepsy, used to fall off the couch sitting onto the floor and wake up about 15 minutes later no warning yet he still drove.

there is a herbal plant to replace warfarin but can’t find anyone who takes it so we can work out doses, my naturapth/GP too far away for monitoring.

yep rock on hey take care

len

6 07 2013
MargfromTassie

Mike, FYI

http://www.buteyko.info/pdf/Sleep_Apnoea_and_Breathing_Retraining_Report_May_2012.pdf

Also, just google – buteyko method sleep apnea – and you will find a lot of info, including some interesting YouTube clips.

Regards – Marg

6 07 2013
MargfromTassie

2 further things Mike :-
– if you haven’t already heard Jim Kuntsler’s podcasts on his health problems, well, he has had issues not dissimilar from yours (although his sleep apnea test proved negative, as did his test for Lyme disease). He’s an interesting fella and definitely has a way with words. I Regularly read his website and also enjoyed his “World Made by Hand” fiction books set in a post carbon world about 40 years hence.
– Living Valley Springs up your way at Kin Kin is the place to go if you really want to make a positive impact on your health. Well worth the money. The naturopaths there are the best in Australia- far better than just about any doctor. It is a residential retreat but they may do private consults. They have been there for over 20 years and have had great success- with MS in particular. They are up with absolutely the latest research. Check out trip advisor feedback. Also the newsletters on their website are very informative and they can mail them to you too. I spent 10 days there 3 years ago with 26 others, and all of us, without exception, looked and felt sooo much better by the time we left. I remember that within a few days, middle aged men who had weight and sleep problems, had improved significantly. I am still trying to get my husband to go but he doesn’t want to leaveTassie. He has not been using his CPAP machine for a while now……

27 07 2013
len gardener

just on that aponeoa, got doubts to how many scientific sleep studies are accurate results or interpretations, see they are panicking parents now trying to sell CPAP’s to toddlers and kids.

len

10 10 2014
Olivia Edrick

CPAP stands for continuous positive airway pressure. It treats breathing problems like sleep apnea with mild air pressure, keeping the airways always open. CPAP machines are also used to cure infant lungs which are not fully developed.

Cpap Machine Australia

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