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FORUMS: Good or Bad
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Dreamcatcher Offline

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Posts: 899
Joined: Mar 2012

Machine: Resmed Autoset Spirit II with Quattro F/F & FX Masks
Mask Type: Full face mask
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Humidifier: H4i
CPAP Pressure: 10 - 18 cmH20 (auto range)
CPAP Software: ResScan SleepyHead Other Software

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Sex: Male
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Post: #1
Question FORUMS: Good or Bad
I was told not too long ago that Forums are dangerous places full of people who dont know what they are messing with and could potentially kill someone. This statement was said to me by a top doctor in the sleep field after I complained that we are not allowed to view our results or change our settings, I kind of we know best mentality.

2 years down the line and Im afraid for once the doctors have it completely wrong, if I hadnt took the bulls by the horn I would have given up my treatment without a doubt. Now Im involved with my results and have took an interest in my illness I have come on leaps and bounds and understand an awfull lot more about OSA than probably them. I even discussed with some people on Autosets how long it took for the pressure to rise to meet the demand of an event and this is why we set our APAP's pressure up instead of leaving it wide open (4-20) because if you leave it on 4 and need a pressure of 10 to ease an event or prevent one it would take around 90 seconds to around 3 minutes for the pressure to reach that high but by then the event has long passed. Just one of many things I have learnt on my journey and with each new topic and poster bringing up new ideas and new short-cuts, that forums are far from being bad but are very and I say "VERY" loudly, Productive!
04-04-2012 04:01 AM
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Cutter Offline

Preferred Members-2

Posts: 324
Joined: Feb 2012

Machine: ResMed S9 Elite
Mask Type: Nasal pillows
Mask Make & Model: Swift LT
Humidifier: Hi5
CPAP Pressure: 12
CPAP Software: ResScan SleepyHead

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Sex: Male
Location: Kansas

Post: #2
RE: FORUMS: Good or Bad
Your signature says it all. "Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad." You can find a lot of knowledge and experience in a forum but you still have to know what to do with it.

This post is a natural product. The slight variations in spelling and 
grammar enhance its individual character and beauty and in no way 
are to be considered flaws or defects.
 
04-04-2012 06:30 AM
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Dreamcatcher Offline

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Posts: 899
Joined: Mar 2012

Machine: Resmed Autoset Spirit II with Quattro F/F & FX Masks
Mask Type: Full face mask
Mask Make & Model:
Humidifier: H4i
CPAP Pressure: 10 - 18 cmH20 (auto range)
CPAP Software: ResScan SleepyHead Other Software

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Sex: Male
Location:

Post: #3
RE: FORUMS: Good or Bad
(04-04-2012 06:30 AM)Cutter Wrote:  Your signature says it all. "Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad." You can find a lot of knowledge and experience in a forum but you still have to know what to do with it.

They also say, a little knowledge is dangerous but I dont think thats relevant here as there is always someone to point the person in the right direction...
04-04-2012 06:34 AM
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iSnooze Offline
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Posts: 239
Joined: Feb 2012

Machine: Respironics PR System One C-Flex+
Mask Type: Nasal mask
Mask Make & Model: Resmed Mirage Micro
Humidifier: System One Heated Humidifier
CPAP Pressure: 11
CPAP Software: SleepyHead

Other Comments: also use a Comfort Gel Full Mask by Respironics

Sex: Female
Location: Indiana

Post: #4
RE: FORUMS: Good or Bad
For me this forum is a blessing. I knew little about sleep apnea before I was diagnosed. Searching the web for legitimate articles gave me some insight but didn't help me find out about the day to day challenges that OSA brings. I found this forum before I had my appointment with the DME to get my machine. Thanks to advice and info on this forum I was able to ask the right questions and get a data compatible machine (although I should have insisted on one that allows me to read the data on the machine's screen).

I can understand why forums can be bad for some people. If people are are taking medical advice from strangers without seeing a physician that could be bad. Many sleep apnea sufferers have seen their doctors who gave them little help beyond the diagnosis and come they here for more info/advice. These people have been already diagnosed with sleep apnea. They usually aren't trying to diagnose themselves.

I know there are plenty of other forums that are based on medical or emotional needs. If people use those forums in lieu of a visit to their doctor they could end up with more damage to their health. I was on a diet specific forum once with a very vocal member. She was, in my opinion, a nutcase. She had awful advice but because she came across as authoritative, some people listened to her and end up with unhealthy eating and sleeping habits.

Another example of where a forum has been bad was when the Atkins diet was quite popular. On the official Atkins diet there was a gal who reported tweaking the plan and losing almost 200 pounds in 11 months. Many forum members wanted to know her secret and she started her own forum and her own diet plan called Kimkims. She sold memberships to her plan and earned quite a bit of money but she was a fraud. On the forum she sounded successful. However people can post whatever they want. It's not like the New York Times which checks facts before printing an article. There is no lie detector that alerts readers to bogus or fictional info by posters.
04-04-2012 06:51 AM
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Dreamcatcher Offline

Members-b

Posts: 899
Joined: Mar 2012

Machine: Resmed Autoset Spirit II with Quattro F/F & FX Masks
Mask Type: Full face mask
Mask Make & Model:
Humidifier: H4i
CPAP Pressure: 10 - 18 cmH20 (auto range)
CPAP Software: ResScan SleepyHead Other Software

Other Comments:

Sex: Male
Location:

Post: #5
RE: FORUMS: Good or Bad
(04-04-2012 06:51 AM)iSnooze Wrote:  For me this forum is a blessing. I knew little about sleep apnea before I was diagnosed. Searching the web for legitimate articles gave me some insight but didn't help me find out about the day to day challenges that OSA brings. I found this forum before I had my appointment with the DME to get my machine. Thanks to advice and info on this forum I was able to ask the right questions and get a data compatible machine (although I should have insisted on one that allows me to read the data on the machine's screen).

I can understand why forums can be bad for some people. If people are are taking medical advice from strangers without seeing a physician that could be bad. Many sleep apnea sufferers have seen their doctors who gave them little help beyond the diagnosis and come they here for more info/advice. These people have been already diagnosed with sleep apnea. They usually aren't trying to diagnose themselves.

I know there are plenty of other forums that are based on medical or emotional needs. If people use those forums in lieu of a visit to their doctor they could end up with more damage to their health. I was on a diet specific forum once with a very vocal member. She was, in my opinion, a nutcase. She had awful advice but because she came across as authoritative, some people listened to her and end up with unhealthy eating and sleeping habits.

Another example of where a forum has been bad was when the Atkins diet was quite popular. On the official Atkins diet there was a gal who reported tweaking the plan and losing almost 200 pounds in 11 months. Many forum members wanted to know her secret and she started her own forum and her own diet plan called Kimkims. She sold memberships to her plan and earned quite a bit of money but she was a fraud. On the forum she sounded successful. However people can post whatever they want. It's not like the New York Times which checks facts before printing an article. There is no lie detector that alerts readers to bogus or fictional info by posters.

That would be very funny, a forum with a lie detecter on it Laugh-a-lot
04-04-2012 07:22 AM
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zimlich Offline

Preferred Members-2

Posts: 392
Joined: Feb 2012

Machine: Respironics PR System One BiPap Auto SV Advanced
Mask Type: Nasal mask
Mask Make & Model: ResMed gel Nasal Mask
Humidifier: System One
CPAP Pressure: 8-20 ASV, 8 EPAP,PS 12
CPAP Software: Not using software

Other Comments: I use the Quattro FFM when necessary

Sex: Female
Location: Norfolk, VA

Post: #6
RE: FORUMS: Good or Bad
I think they are good and bad for reasons already mentioned. They balance out on the good side for me. We can help a lot with some problems. If someone has no insurance or a doctor or DME who is not helpful we can step in. I have read of complete newbies changing their pressure in the first week- just because they could, I guess- not good. And as the previous poster said, some people give bad advice with such authority. I think the debate about CPAP vs AUTO is one example of bad advice. It's so individual- unless someone is prescribed an AUTO for specific reasons, a CPAP does fine for most of us. Using an AUTO correctly requires that someone has a good, solid knowledge base on how they work and a good prescription. I do think we have become more cautious in our advice as we have learned that too high a pressure can do more harm than good. I think where we (apneaboard) really shine is in making information available. Many people don't even know how to access their data or enter the setup menu without the information available here. They don't know about software. We are also great at helping with mask fitting problems, aerophagia, getting a data capable machine, when to see the doctor. We are also great at education before seeing the doc, having that sleep test, trouble shooting problems with therapy, support and encouragement to use the machine 100% of sleep time, and fact finding. We are always careful to say we are not doctors. Forums are great as a social network, too.
(This post was last modified: 04-04-2012 07:26 AM by zimlich.)
04-04-2012 07:25 AM
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pilvikki Offline

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Posts: 4
Joined: Apr 2012

Machine: S9 Escape
Mask Type: Nasal pillows
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CPAP Software: ResScan

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Post: #7
RE: FORUMS: Good or Bad
oh don't even start me on the doctors=god routine! my late doctor blithely told me i was wrong when i'd mention such far out concepts as a reaction to a drug - and shrug it off as "Impossible! it can't do that." ok, so who's living in my body, you or me?

my philosophy is that a little knowledge is a GOOG thing, for from that you know that you need to know more.
04-04-2012 08:46 AM
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cbramsey Offline

Advisory Members

Posts: 900
Joined: Mar 2012

Machine: ResMed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: ResMed Mirage FX
Humidifier: ResMed H5i with ClimateLine
CPAP Pressure: 6 - 12
CPAP Software: ResScan

Other Comments: Supreme Overlord of Web Darkness

Sex: Male
Location: NC, USA

Post: #8
RE: FORUMS: Good or Bad
I think forums are a great thing. Learning from the experiences (good as well as bad) of others can help on our journey.

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.
04-04-2012 08:48 AM
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Bompa Offline

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Posts: 854
Joined: Mar 2012

Machine: DreamStation Pro
Mask Type: Nasal pillows
Mask Make & Model: Nuance Pro
Humidifier: DreamStation Heated Humidifer
CPAP Pressure: 12.0
CPAP Software: SleepyHead Other Software

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Sex: Male
Location: Falkenburg,

Post: #9
RE: FORUMS: Good or Bad
Until I found this Forum a couple of months ago I really had no idea as to what was going on with my machine and my Apnea. First of all I now have 2 different pieces of software to download, and read my data. I was told ResCan was only for DME's and professional sleep people.
Okay, so I had the numbers, what did they stand for? Thanks to people on the forum I now understand what they mean and how to basically interpret them.
SO...YES forums are a great help if you are just seeking knowledge and help to understand your condition and not looking for a medical advice.
I now have a better understandingof my problem and reading my numbers daily I can help control my problem.
04-04-2012 10:05 AM
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jdireton Offline

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Posts: 149
Joined: Feb 2012

Machine: Resmed S9 Elite
Mask Type: Nasal mask
Mask Make & Model: Resmed Mirage FX
Humidifier: Resmed H5i
CPAP Pressure: 12
CPAP Software: ResScan

Other Comments: ClimateLine Hose

Sex: Male
Location: Florida

Post: #10
RE: FORUMS: Good or Bad
I've got to chime in here. This forum is great!

I own a debt of gratitude to Super, Zonk, Paula, Uncle, and the others that keep these conversations alive. Knowledge is power! This forum has enabled me to understand my treatment and take control of it. I don't agree with everything said here, who would?

Note, if you really like the forum send Super $10 for forum costs. He deserves it.
04-04-2012 12:15 PM
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