Would Welcome Your Feedback About This

[Beej]

Sometimes when trying to diagnose issues, it can be helpful to set up a list of symptoms vs possible diagnoses and mark the ones of fit. This may help the doc see a pattern more easily, without telling him what the diagnosis is (docs can get a bit miffed if you self-diagnose!)

There are numerous conditions which may affect energy level, fatigue, and sleep - low thyroid, diabetes, and other endocrine issues are just some of the categories.

[Patrick]

Harmon: Great question.
I have finally found a sleep expert (Boulder) who was trained at LSUHSC and moved to Boulder. He was trained by our dean (neurologist) who was extremely good at the Science of sleep and CPAP and etc. So, I'm in good hands.
Same thing has happened to me: still fatigued, esp. in afternoons, but very poor to little Restorative Sleep.
I had another overnight polysomnography test and even though the CPAP is technically working, I desaturated to mid 80's through the night for an unknown reason. So, we added nocturnal oxygen at 2 LPM and it hasn't worked.
Internist is now to order a lung scan because may have a blocked lobe due to a broncholith. Causes a ventilation:perfusion mismatch.
So, do the overnight test as you and your doctor may find something unexpected.
Patrick

[harmon k]

Thanks. I do not have any underlying med issues like diabetes, thyroid, endocrine issues....been tested for everything, including testosterone levels, etc and all are normal.

My dr. is definitely a sleep specialist/neurologist and I'm seeing him at a Sleep Disorder place. He does give me a lot of time and answers all my questions and he spends much time with me, checking all my results and explaining things. He also answers any emails I send him the same day, so I like him. He answered my email and said to not stop the cpap and continue using at at the new pressure of 9, which he raised from 7.

[harmon k]

Oh, and like Mr. Deuce, I didn't use the cpap at all last night, after 31 nights in a row, and I, too, felt GREAT today....energy, no headache etc. I don't get it, and it has me leaning towards not using it against the dr's advice until he does that 24 hour testing in a couple of months. Since I used the machine at the new level of 9 two nights and same fatigue result.

BTW, I mentioned to the Dr. that so many people talk about "Sleepyhead" and he never heard of it. Should I think he's not so good if he's unaware of it? Also my compliance co. never heard of it either. Just curious.

[Sleeprider]

The medical community is generally unaware of Sleepyhead, and use the manufacturer's software, likw ResScan, or the reports sent by the DME. Sleepyhead is not a professional product, and makes not claim to that effect. It uses the machine data to produce reports and graphs, and is generally more useful than the manufacturer products, but it has no standing with the doctors. Just an FYI, don't go to a doctor and tell him "I heard on Apneaboard Forum"...that is a sure way to lose credibility. We and other forums are not credible sources in the medical world.

[harmon k]

I did not tell the Dr. that I heard about Sleepyhead on this or any other forum. Just generally said I've heard about it. lol

[PeggySue]

HarmonK, I had a doctor who gave me a prescription of 6-8 for my BiPAP, though I did not sleep at all during his test. He said it didn't matter, but after talking to my brother, who is a physician and lost a patient who forgot to wear his mask one night and fell asleep while driving the next day, we knew better. He said that for a verified sleep physician to arbitrarily prescribe any numbers without data was demonstrating poor medical practice. No doctor should ever arbitrarily write a prescription for any patient, be it for a sore throat or sleep apnea, without a valid diagnosis. My apnea continued to grow in severity such that I would fall asleep in the middle of a sentence while talking to someone, and I once walked for an additional 35 minutes on my treadmill because I fell asleep. My “sleepwalking” was becoming less humorous and more dangerous.
I made a report to my insurance company, and they authorized another study. This was to prove the severity of not only my Obstructive Apnea, but also my Central Apnea. I knew nothing by name about “Central Apnea” but certainly recognized the symptoms through my daily actions.
I next went to a well-known medical center for a full study, where the doctor said one night generated over 1,000 pages of data that were read by members of the Neurology team who directed the Sleep Lab. The test demonstrated my severe apnea at an AHI of 68 with an almost direct division of the Obstructive and Central Apnea episodes. They arrived at a value of EPAP 20.0 and IPAP 24.0. That maxes out the strength of the prescription available on my BiPAP, but it has made a huge difference. It had been raised just a few points from 16.0 and 20, but it made a huge difference, sending my AHI plunging from 68 to, for example, a manageable 8.95 over 7 hours of restful sleep. I certainly admit that it took time to adjust to having that much pressure “blasting” me in my face nightly, but I rarely sleep at all during tne daytime. Quite an improvement!

[harmon k]

Thanks, PeggySue........you also write beautifully. It gives me some hope that my Dr. raising my pressure from 7 to 9 may make a difference. At my last visit, he mostly thought my issue may be something other than the sleep apnea for which I'm being treated.(like narcolepsy or something else?) Hence he wants me to do the 24 hr. study. But in the meantime he just raised the pressure.
I don't know if I'm atypical among apnea people in that I NEVER ever fall asleep or doze off in the daytime under any circumstances. In fact, whenever I've had to fill out those "Dosing" questionaires I put "0" in all the categories. So, when I asked the Dr. about that and why he's considering narcolepsy as a possibility, he said those "dosing" questions don't mean a person doesn't have an issue re: sleep apnea or narcolepsy,
And, unfortunately, I don't really know the difference (symptom-wise or daytime fatigue-wise) between osa or cental apnea or blah blah blah . lol

---

Should have written "dozing" instead of "dosing" , You now what I mean ...I never DOZE off. hee hee. Unusual for a sleep apnea person?

[PoolQ]

Personally I am glad that my Doctor was willing to prescribe CPAP without a Dx. I also was not sleeping in the lab, nor at home for that matter, seriously only resting and getting up every 30 minutes before getting back in bed to once again try and sleep.

So what were my choices? Keep trying until they can get a Dx? That would be impossible and they would have sent me home in a desperate condition. Had already contemplated suicide, quite seriously.

Do not prescribe without a Dx? I would most likely be dead. I would consider that malpractice. Pretty dang obvious that I had sleep apnea, regardless of what some machine was or was not able to record.