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sleep specialist's lack of knowledge
#11
I was "dismissed" by my sleep clinic for not buying into their completely useless monthly "care package" but mainly for the apparently unforgivable crime of buying my own machine rather than their overpriced one.

The physician (respiratory specialist) that first prescribed CPAP to me didn't impress me either back then, however he called me in for an appointment last week, so I thought I could discuss my progress and came prepared with Sleepyhead graphs. He walks in, flips through my file and says: So you had your study done last June, I see you've been responding well to treatment (he only had sleep clinic data from no later than July 2016). Do you feel less fatigued, yes? Good, then just continue on with it. Don't gain any weight and don't drink much alcohol before bed. Any questions?" And with that he closed my file shut.... I pulled out my Sleepyhead data and asked if he was interested at all in seeing what my AHI was doing and what percentage of it were central apneas. He seemed completely taken by surprise, flipped through my papers and looked at the statistics print out for a bit, then concluded that I apparently was doing well and he wanted to see me again in the fall. There was no word about pressure, the periodic breathing events, respiratory rate or anything else and quite frankly, at this point, I didn't feel he knew what he was looking at, or had any interest in it, so I didn't ask.

Not going back to see him. What a waste of time.
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#12
Had to use the machine for 8 weeks @ > 4 hours per night before being allowed to see anyone at the Sleep Clinic that my GP referred me to - that's way too long to let a new APAP user twist in the wind. Luckily I found this forum and had already changed the settings and and saw some improvement, and received support from many peoples' posts to keep trying the process (not a miracle cure). (The Mask fit link was especially helpful, I'm sure a forum search would bring it up.)

When I finally saw the Nurse Practitioner (NOT happy that I changed the settings), she was more concerned about cleaning than sleep quality. She went on and on about dish soap until I cut her off and told her that I'm a clean freak naturally, and use unscented baby shampoo like the machine's manual advises, which made sense to me. Didn't want to know about Sleepyhead, periodic breathing, swollen face in am, or that it's really hard to exhale. She had some knowledge, and I think that I got a good machine, but it's only because of this forum that I can gage whether to trust what she says.
I got two notices from my insurance on claims coming from a doc I didn't recognise. Finally figured out he is associated with the Sleep Clinic! Never saw him; maybe he owns it.

I'm still wondering if it's advisable to see an Ear, Nose, and Throat doc, but when I have enough posts and time, I know I can get really expert advice here - so incredible, and comforting, to know.
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#13
It's unfortunate that most doctors get little more than a brief on sleep disordered breathing in med school. The specialists (a.k.a. "sleep docs") get a bunch more on the diagnostic side and some high level treatment info. They typically rely more on the RT at your DME to do the grunt work. The RT, again, gets some but not a lot when it comes to CPAP therapy in school and they have the added stress of a DME who may be more about profit than patient care.

No, we can't expect GP's, sleep docs and RTs to be as knowledgeable as a forum full of people who have been dealing with it for (collectively) centuries....but sometimes their ignorance regarding "good therapy" is dumbfounding. A lot of them must think it's "only" CPAP therapy for a patient...but to us it makes a huge (Yuge!!!) difference in quality of life and we've got a vested interest.

Good on you for being involved and taking an active role in your therapy...advocating for yourself and learning for yourself will get you optimized therapy for yourself rather than what "yeah, you're doing okay...keep it up....see you in 6 months" will get you.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#14
Since we're talking about this...

Surely there have got go be some *good* drs who get it. I mean, companies have created this technology (xpap) that produces therapy and data at such a detailed level. So *somebody* in the business (it really is a business, isn't it?) is knowledgeable about sleep disordered breathing.
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#15
The specialist who initially ready my sleep study said I had extremely severe OSA and that my heart rate was reaching 250 while asleep.
This made me buy a non medical mi band and constant heart rate monitoring app, and, looks like I have an absolutely fine ticker ! When on my second visit about the same study, I declined to see this dr, they made me see the HOD and when I asked him if my heart rate was a concern - he said no. I said the report says it touched 250. He shrugged and said thats not definitive, the machines can spike when you probably turned in sleep. Dang !! Thanks for making me spend useless money and giving me sleepless nights, first doctor ! How couldn't you know this basic thing ? And this fellow was constantly on the phone organising times for giving lectures at uni classes - wonder how many more sub standard doctors this fellow will nurture.
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#16
Quote:Surely there have got go be some *good* drs who get it.

I haven't met one. Then again I have never actually met a sleep doctor, just had one brief phone discussion where he assured me I only had obstructive apnea despite a report (which he signed) saying my central index was 32.

Luckily I had a fantastic respiratory therapist who worked with me over a period of seven weeks and got me set up with an ASV. Apparently she got grief from her manager as the contract only allowed for four weeks of follow-up (one session a week), but she (and I) weren't happy with progress at the end of the four weeks.
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#17
Hi Leemax, very interested in your comments on epilepsy.

I had a diagnosis of epilepsy which I consider suspect, for example my "incidents" 4 in number were generally a year apart with one in 1992 and nothing for about ten years, and my symptoms did not seem to have any similarity to those described on several epilepsy boards.

The diagnosis of alleged Apnea came about as a result of the epilepsy investigation, with the important thing being that I can find little to no information making any connection at all between Apnea and Epilepsy.

Clearly like others I have zero faith in the medical profession.
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#18
(04-21-2017, 02:57 PM)Corvette817 Wrote: When I finally saw the Nurse Practitioner (NOT happy that I changed the settings), she was more concerned about cleaning than sleep quality. 

I had a similar experience, for a problem called Sleep Apnea there seems to be little interest in the quality of your sleep, pointing out that I was generally waking after less than 4 hours sleep, I was told to make sure I kept the mask on for just over the four hours to get my compliance time in, meaning, falsify my data.

On suggesting that rather than wasting my time attending the hospital I could post my SD card in, then if there was a problem with the data they could call me in.
I was then told that they liked us to come in to make sure we were looking after the machine, at which point I lost my patience with them and left..........
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#19
(04-22-2017, 09:52 AM)Phill Wrote: Hi Leemax, very interested in your comments on epilepsy.

I had a diagnosis of epilepsy which I consider suspect, for example my "incidents" 4 in number were generally a year apart with one in 1992 and nothing for about ten years, and my symptoms did not seem to have any similarity to those described on several epilepsy boards.

The diagnosis of alleged Apnea came about as a result of the epilepsy investigation, with the important thing being that I can find little to no information making any connection at all between Apnea and Epilepsy.

Clearly like others I have zero faith in the medical profession.

The only actual connection I have found between epilepsy and sleep apnea is the rather indirect one of Vagus Nerve Stimulation, which is a marginally effective way to reduce seizures in some people. Since that procedure interferes with the vagus nerve, and since breathing is one of the many areas impacted by the vagus nerve, there is the possibility that damage to that nerve can cause apnea. As I might have said earlier, the onset of my apnea seemed to coincide with the initiation of the vagus nerve therapy. I really have no other risk factors for SA other than being a 58 year old male.

My faith in the medical profession isn't quite zero, but I definitely do all my own research and am not at all afraid to hold the doctors' feet to the fire if I'm at all unsure of what they want to do or not do.

As for your "epilepsy", you're right that four widely-spaced incidents with, I presume, no irregular EEGs or other objective manifestations, would definitely not constitute epilepsy in any known universe.
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#20
This thread explains exactly why I started looking into understanding my machine,mask and therapy. After my 1st sleep study I was put on a CPAP @ 8. I was having a lot of trouble breathing at that pressure. So I call the Doctor, I was told he would call me back ASAP. A week went by no call. So I call again, again no response. OK 3rd time will be the charm right? No, but I did tell them if he didn't call me I was going to change my pressure my self. No call came, so I started bumping up the pressure slowly over a weeks period, learning the settings on my Resmed AirSense 10. I bumped up to 12, and was feeling much better. Sleeping better. Then my 2nd sleep study I was kind of upset because of no calls and the room they put me in I felt was nasty. I held my tongue. So the follow up came I'm sitting there and this lady Dr. walks in (I've never met) opens my file and tells me I need a BIPAP. Now I have a Resmed AirCurve 10 VAUTO.I told her about adjusting the pressure, she had no response.
So I go back on the 5th of next month. This time after reading and learning from this forum, I will go with the right questions and I want answers. I have made a list of reasonable questions to ask I think. If anyone can give me input on the questions they have asked, I would love to read them.
Knowledge is power.
"I say, you work eight hours, and you sleep eight hours - be sure they're not the same eight hours."








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