Apnea destroyed my career

Maybe...and forgive me for this....you need an attitude adjustment.
I know folks WORKING through cancer/chemo....and it certainly puts OSA in perspective.

Sorry, I wrote a long and thoughtful post and it got lost trying to log in.

I agree 100% with those who suggested data capable machines.

My personal experience with 3 sleep specialists, is that unless your sleep apnea is easily corrected, their answer to me has been, well your sleep study wasn't that bad, irregardless of the symptoms I was still having. 3 of three nearly useless sleep specialists, suggests you may have to shop around a lot. Well actually the first one said my sleep study was really bad, Good-bye and good luck!" Funny he didn't seem to be insane!

If your sleep specialist hasn't suggested a data capable machine; I'd change doctors ASAP! It's not your job to tell him his or her job. By data capable I certainly don't mean compliance data; which is of use only to insurance to deny coverage.

I certainly don't know what your issues are, but unless there is in home data, no one else does either.

I am two days on Intellipap Auto adjust in a CPAP mode. So far I'm using "Smart" Code. I'd call it "dumb" code. It told me I had a 9% mask leak and an apnea index of 11+. It took about 2 days to realize that I was having a major mask leak *all the time*. I thought it was just a very noisy mask.

This may be near to the best machine out there; but seems it will take considerable effort to get the best out of it. I definitely don't trust it yet enough to use the Auto Adjust Mode. The instructions in 40 +/- languages are pretty poor.

Good luck,

Charlie M.D.

externmed wrote: My personal experience with 3 sleep specialists, is that unless your sleep apnea is easily corrected, their answer to me has been, well your sleep study wasn't that bad, irregardless of the symptoms I was still having. 3 of three nearly useless sleep specialists, suggests you may have to shop around a lot.

Charlie, I can certainly say the same for my first sleep doc. "You're doing great!" when I obviously wasn't. I have hopes for my new sleep doc, but time will tell. In any event, your advice is solid.

Good luck with your new Intellipap.

Charlie, having tried and Intellipap for 10 days (review pending) I can definitely understand your disappointment with the so called "smart-code". After my first time of viewing data in the so called "smartlink" program I called it "dumblink".

By the way, giantred does have a fully data capable automatic machine.

O.

Tom Holsinger wrote:Rooster, the scary thing was when my surgeon asked for pictures of my children and diagnosed my sons' sleep disorder based on their jaw shape. So they had their first sleep study with my last sleep study, in August 1994, and were diagnosed with upper airway resistance syndrome. Pluls the sleep specialists and my surgeon assured me that my sons would be disabled with OSA before they were 30 absent treatment. I discovered that my county's health insurer was real nasty, and spent years surrepticiously building a record of medical necessity for my sons' surgery before going at 'em for treatment of my sons. That was right up my alley as a litigator.

Plus I had the money by then to pay for my sons' sleep equipment and surgery on my own. I did the latter first, upon receiving the first denial of benefits, and then appealed. Their own experts told them they were completely wrong, based on the record I had built. And public employees aren't bound by ERISA plus I knew every insurance bad faith counsel in the San Joaquin Valley. So they caved on the equipment, and didn't put up much of a fight for the later surgery, knowing that I'd pay for that too and then sue them for bad faith.

They did balk at the orthodontist bills for installing the expanders in my sons' jaws prior to their surgeries, but I ran that over by pointing out, "If it makes the bite of their jaws worse, it's surgical and you pay for it. If it makes their bite better, it's orthodontic and I pay for it." Plus I pointed out that I had paid $7000 for my sons' orthodontia when they were little, and faced having to pay $11,000 for it all over again when they were in college.

Well, that does it! I'm through whining about my condition. Your story is interesting and heartening!

Jane

giantred...I owe you an apology for my previous post. I'm sorry.

My last post sounds too patronising on re-reading, not intended. SA can be just brutal, we all sympathise with what it's done to you but there's no reason to give up hope. In its last stage (just before my actual diagnosis), my chronically exhausted and sometimes rather confused mental state reminded me a bit of the psychological effects of the high-dose prednisone I took years ago for Hodgkins lymphoma (along with the chemo). Most people don't really believe me when I say that the side effects of the prednisone were worse than those of the six i.v. poisons that I received on a weekly basis over the same period, some of which (esp. VP-16) are powerful nausea-inducers and two of which (alkaloids) have left me with permanent peripheral neuropathy (feet mostly). My mind was so comletely blasted by confusion, incoherent thinking and on one occasion a sort of temporary psychosis (separation from reality) that I told someone during that period of therapy that if I knew for sure that this mental state would continue indefinitely, it would just not be supportable. I just kept telling myself that the mental condition would end a day or two after the last dose of prednisone, and sure enough it did. If you've taken low dose prednisone for any reason you won't be familiar with what I'm talking about thank goodness. It isn't so easy for you perhaps giantred because the "cure" is more elusive, I understand that.

I'm not saying that SA had exactly the same mental effects on me but like I say there were similarities and I was reminded. What I'm saying is that it's hard to over-estimate the impact of chronic severe sleep deprivation on mental health.

Just keep telling yourself what you told us earlier, "I WILL NOT HAVE SLEEP APNEA ONE DAY". Make it happen.

Pneumonym wrote:...left me with permanent peripheral neuropathy (feet mostly)...

Investigate benfotiamine, it's an alliothiamin (B1 derivative). Works like a charm to shut down one of the pathways of diabetic pathobiology, chiefly the one that creates neuropathy. Read Brownlee's paper:
http://diabetes.diabetesjournals.org/co ... type=HWCIT

Seems that diabetics just pee away thiamin and benfotiamine bypasses that pathway; plus, it protects the cell against the ravages of hyperglycemia. You might find the info esp interesting given your background (I don't even feel the need to mention brushing up on your college organic chem, err dating myself, biochem, opps I just did ).

Google 'benfotiamine' and you'll find lots who take for other conditions.

Very nice. Brownlee is quite brilliant certainly; I'm embarassed to say I'm way out of touch with metabolism these days (used to be what I did). I'll read the review, get educated, and maybe give it a whirl. The end state is certainly very similar but the pathophysiology .... ? My axonal transport is kaput (microtubular depolymerisation), the diabetic form is more a carbohydrate screw-up, no? (polyol accumulation etc). Maybe I'm in sort of denial again, as I was with the fatigue, i.e. attitude of toughing it out rather than looking for a solution.

Thanks for the reference.

Pneumonym wrote:...I'll read the review, get educated, and maybe give it a whirl...toughing it out rather than looking for a solution...

Sometimes, the things we gotta do to just survive are a bit overwhelming esp the daunting load of info we hafta learn about our particular flavor of apnea and the equipment available for treatment...that's why I like hanging out here, pretty targeted info presented by sharp folks. So many "this helped me" things to note to eventually check out...some'll bomb, some'll be iffy, and shazam some'll work.