full face mask and pressures
Question:
Pat & Jim wrote: > Hi all > I have recently started using a mirage full face mask and would like to > know: > Also I would like some opinions (from UK and USA citizens) about some thing > my sleep doc said, he said and I quote " not to read/listen to American >news groups ect on OSA as they go way over the top" > TIA > Pat
American newsgroups?? I think your Doc needs to learn about newsgroups and their structure. There are no borders on the internet. The only thing remotely over the top here is most shun surgery. This group has a wealth of knowledge, more than I’ve seen anywhere else. I’m sure that the doc’s know more than we do about the medical aspects of sleep disorders but I like to ask those in the trenches who’ve done it. Next time you go to a sleep specialist or DME ask them how many nights they have slept on a CPAP or if they have even ever had a mask on? — Bob Visit my information & link page at http://twilight.webbernet.net/~gooteebob/index_html.htm news.newusers.questions Moderation Team Worker news:news.newusers.questions
Response:
Lee Babcock <babco…@idirect.ca> wrote: >Tom……. good summation!
Thanks, but I sure wish that it wasn’t. 
Tom
Response:
On Fri, 27 Apr 2001 11:01:25 GMT, "Pat & Jim" <jsbr26…@cableinet.co.uk> wrote: >Also I would like some opinions (from UK and USA citizens) about >some thing my sleep doc said, he said and I quote " not to read/listen >to American news groups ect on OSA as they go way over the top"
Our brains have not been drugged by Government Health Care. >I personally find it very useful to read all your comments and think >he and others like him are wrong. The USA is usually more >knowlegable
I don’t know about the UK, but it seems in Canada they won’t let the pharmaceutical companies put the Full Statements of Prescribing Information on the Internet.
Response:
On Sat, 28 Apr 2001 08:13:39 GMT, "Pat & Jim" <jsbr26…@cableinet.co.uk> wrote: >All respects of OSA, such as OSA being life threatening, secondary >ailments and equipment.
It’s a good thing you are British and not Australian. After all, it’s the Aussies who have been doing a lot of the research. On the other hand, haven’t the British looked down on Australia ever since they used it as a penal colony? 
Response:
"*BobGootee" <gootee…@wnol.net> wrote in message
news:3AEB1402.D7D3B07A@wnol.net… – Hide quoted text — Show quoted text -> Pat & Jim wrote: > > Hi all > > I have recently started using a mirage full face mask and would like to > > know: > > Also I would like some opinions (from UK and USA citizens) about some thing > > my sleep doc said, he said and I quote " not to read/listen to American >news groups ect on OSA as they go way over the top" > > TIA > > Pat > American newsgroups?? I think your Doc needs to learn about newsgroups > and their structure. There are no borders on the internet. > The only thing remotely over the top here is most shun surgery. This > group has a wealth of knowledge, more than I’ve seen anywhere else. I’m > sure that the doc’s know more than we do about the medical aspects of > sleep disorders but I like to ask those in the trenches who’ve done it. > Next time you go to a sleep specialist or DME ask them how many nights > they have slept on a CPAP or if they have even ever had a mask on? > Good one "I might try that one out!!!! Pat > — > Visit my information & link page at > http://twilight.webbernet.net/~gooteebob/index_html.htm > news.newusers.questions Moderation Team Worker > news:news.newusers.questions
Response:
Thanks Tom Some good point raised there, maybe we all need to be more assertive with our docs ect, also maybe some docs could do with reading these news groups themselves……. Pat "Tom Devlin" <tomdev…@ameritech.net> wrote in message
news:re9met0b3it7a7mjshm3kkdt634epcv1ih@4ax.com… – Hide quoted text — Show quoted text -> Lee Babcock <babco…@idirect.ca> wrote: > >Tom……. good summation! > Thanks, but I sure wish that it wasn’t. > Tom
Response:
Hi Charlie I did not intend for this thread to become political. I’m 40ish and know nothing about penal colony’s. That to one side, I judge each individual country on first hand experience, not the past. Every country has good and bad points. I’ve no experience of Australia so can’t comment, how ever I do understand that it was an ausie that invented and researched the use of CPAP, bravo to him and all researchers that continue working in this field ect. Thanks for your comments. Pat "Charlie Perrin" <clper…@prodigy.net> wrote in message
news:ju9met8upjnciq4lahb59g17egqoigftcc@4ax.com… – Hide quoted text — Show quoted text -> On Sat, 28 Apr 2001 08:13:39 GMT, "Pat & Jim" > <jsbr26…@cableinet.co.uk> wrote: > >All respects of OSA, such as OSA being life threatening, secondary > >ailments and equipment. > It’s a good thing you are British and not Australian. After all, it’s > the Aussies who have been doing a lot of the research. > On the other hand, haven’t the British looked down on Australia ever > since they used it as a penal colony?
Response:
*BobGootee <gootee…@wnol.net> wrote: >The only thing remotely over the top here is most shun surgery.
That’s not over the top, it’s the result of listening to folks who helped their ENTs with the Lexus payments and still ended up on CPAP. >This >group has a wealth of knowledge, more than I’ve seen anywhere else. I’m >sure that the doc’s know more than we do about the medical aspects of >sleep disorders but I like to ask those in the trenches who’ve done it.
Qualified sleep specialists, maybe. Your average GP or ENT usually doesn’t have a clue. >Next time you go to a sleep specialist or DME ask them how many nights >they have slept on a CPAP or if they have even ever had a mask on?
One of the doctors at my sleep center is on CPAP, it made his advise far more "real". Tom – Sick of Spam? Join CAUCE. http://www.cauce.org
Response:
Tom Devlin wrote: > *BobGootee <gootee…@wnol.net> wrote: > >The only thing remotely over the top here is most shun surgery. > That’s not over the top, it’s the result of listening to folks who > helped their ENTs with the Lexus payments and still ended up on CPAP.
Tom, I agree with you on this 100%. I just pointed this out as the only thing people really disagree about here. (I’m against surgery myself) — Bob Visit my information & link page at http://twilight.webbernet.net/~gooteebob/index_html.htm news.newusers.questions Moderation Team Worker news:news.newusers.questions
Response:
Hi all I have recently started using a mirage full face mask and would like to know: Is the pressure different when using a full mask? Should I increase/decrease the pressure myself as it takes at least six weeks to get an appointment to see my sleep doc, for a new titration it can take up to two years for an appointment, the UK nhs does not have funds to speed this process up unfortunatley. The reason I want to know this is, I dont feel as refreshed in the morning as I did when using a nasal mask, a profile lite which was ok at first, but having "leak" problems with it after only 3/4 weeks use. Also I would like some opinions (from UK and USA citizens) about some thing my sleep doc said, he said and I quote " not to read/listen to American news groups ect on OSA as they go way over the top" I personally find it very useful to read all your comments and think he and others like him are wrong. The USA is usually more knowlegable, and technology is far better. TIA Pat
Response:
"Pat & Jim" <jsbr26…@cableinet.co.uk> wrote: >I have recently started using a mirage full face mask and would like to >know: >Is the pressure different when using a full mask?
No, the pressure’s the same no matter what mask you use. >Should I increase/decrease the pressure myself as it takes at least six >weeks to get an appointment to see my sleep doc, for a new titration it can >take up to two years for an appointment, the UK nhs does not have funds to >speed this process up unfortunatley.
Some people here have experimented with self titration, I sure wouldn’t try it myself. >The reason I want to know this is, I dont feel as refreshed in the morning >as I did when using a nasal mask, a profile lite which was ok at first, but >having "leak" problems with it after only 3/4 weeks use.
Some people find full-face masks to be a little claustrophobic, that might keep you from sleeping as soundly. The Mirage nasal mask might be worth trying if you’re not comfortable with the full-face version. >Also I would like some opinions (from UK and USA citizens) about some thing >my sleep doc said, he said and I quote " not to read/listen to American news >groups ect on OSA as they go way over the top"
In what respect? Tom – Sick of Spam? Join CAUCE. http://www.cauce.org
Response:
- Hide quoted text — Show quoted text -Tom Devlin wrote: > "Pat & Jim" <jsbr26…@cableinet.co.uk> wrote: > >> >Also I would like some opinions (from UK and USA citizens) about some > >>thing my sleep doc said, he said and I quote " not to read/listen to American > >>news groups ect on OSA as they go way over the top" > >> In what respect? > > All respects of OSA, such as OSA being life threatening, secondary > >ailments and equipment. > >They tend to play it down. > I’m not sure that things are radically different here. It took me > eight years to get a referral for a sleep test because the doctors > didn’t know enough to ask me the right questions. It wasn’t until the > connection between hypertension and OSA was documented that I was able > to convince my current doctor to go along. Insurance companies don’t > like sleep tests because they’re expensive, it doesn’t seem to have > occurred to them that they’ll save far more money on patient care once > the OSA is treated. > >As I said in my earlier post I do not agree with the my docs opinion, OSA is > >not fully recognised in the UK as an ilness, so it is very difficult to make > >any informed requests for equipment. > See above. OSA is only now starting to get real recognition here, we > don’t think anything’s real until we see it on television. <g> > >Masks: we generaly have to make do with what ever mask we are given and it > >becomes a battle to get them changed. Suggestions like "I Read about this or > >that mask" is again played down and we are told not to listen/read anything > >from the USA. > Once again, I’m not sure we’re ahead. There are far too many DMEs with > no experience in sleep disorders and the equipment’s often chosen by > price or by which company has the fanciest food at the medical > convention hospitality suites. I’ve seen CPAP compliance figures as > low as 30%, not hard to understand when the equipment’s dropped off by > someone who frequently has no more idea of how to use it than the > patient. They go through a bullshit spiel on the absolute necessity of > keeping everything scrupulously clean, strap the mask on (often > incorrectly), and they’re off to the next customer. Follow up is > practically nonexistent, if you’re lucky the person who dropped off > the gear will call in a month or so to see how you’re doing, the woman > who delivered mine seemed very surprised to here that I was fully > compliant, I got the feeling that she didn’t hear that very often. > >Humidifiers its like getting blood out of a stone to get a humidifier. > Passive humidifiers are easy to get _IF_ you know enough to ask for > them but the heated units, which I think should be mandatory, are next > to impossible. So we make do by putting our passive units on heating > pads and end up misusing two pieces of equipment. > >Maybe its just my doc thats badly informed, (or me) which is why I asked for > >opinions from the USA and UK. > You have to realize that the folks who post here are typically the > ones who’ve succeeded in spite of our medical system. We were lucky > enough to know about newsgroups and were able to direct our own > treatment. If we’re occasionally "over the top" it’s because we’re > frustrated by the situation. Just like you, we know more about the > effects and treatment of OSA than most of our doctors, there’s no > reason to envy us on that point. > Tom
Tom……. good summation! Regards, Lee — Lee Babcock Toronto in the GWN
Response:
"Pat & Jim" <jsbr26…@cableinet.co.uk> wrote: >> >Also I would like some opinions (from UK and USA citizens) about some >>thing my sleep doc said, he said and I quote " not to read/listen to American >>news groups ect on OSA as they go way over the top" >> In what respect? > All respects of OSA, such as OSA being life threatening, secondary >ailments and equipment. >They tend to play it down.
I’m not sure that things are radically different here. It took me eight years to get a referral for a sleep test because the doctors didn’t know enough to ask me the right questions. It wasn’t until the connection between hypertension and OSA was documented that I was able to convince my current doctor to go along. Insurance companies don’t like sleep tests because they’re expensive, it doesn’t seem to have occurred to them that they’ll save far more money on patient care once the OSA is treated. >As I said in my earlier post I do not agree with the my docs opinion, OSA is >not fully recognised in the UK as an ilness, so it is very difficult to make >any informed requests for equipment.
See above. OSA is only now starting to get real recognition here, we don’t think anything’s real until we see it on television. <g> >Masks: we generaly have to make do with what ever mask we are given and it >becomes a battle to get them changed. Suggestions like "I Read about this or >that mask" is again played down and we are told not to listen/read anything >from the USA.
Once again, I’m not sure we’re ahead. There are far too many DMEs with no experience in sleep disorders and the equipment’s often chosen by price or by which company has the fanciest food at the medical convention hospitality suites. I’ve seen CPAP compliance figures as low as 30%, not hard to understand when the equipment’s dropped off by someone who frequently has no more idea of how to use it than the patient. They go through a bullshit spiel on the absolute necessity of keeping everything scrupulously clean, strap the mask on (often incorrectly), and they’re off to the next customer. Follow up is practically nonexistent, if you’re lucky the person who dropped off the gear will call in a month or so to see how you’re doing, the woman who delivered mine seemed very surprised to here that I was fully compliant, I got the feeling that she didn’t hear that very often. >Humidifiers its like getting blood out of a stone to get a humidifier.
Passive humidifiers are easy to get _IF_ you know enough to ask for them but the heated units, which I think should be mandatory, are next to impossible. So we make do by putting our passive units on heating pads and end up misusing two pieces of equipment. >Maybe its just my doc thats badly informed, (or me) which is why I asked for >opinions from the USA and UK.
You have to realize that the folks who post here are typically the ones who’ve succeeded in spite of our medical system. We were lucky enough to know about newsgroups and were able to direct our own treatment. If we’re occasionally "over the top" it’s because we’re frustrated by the situation. Just like you, we know more about the effects and treatment of OSA than most of our doctors, there’s no reason to envy us on that point. Tom
Response:
I find it interesting that the USA was singled out here, Australia for example takes OSA very seriously (although we still have trouble getting funding for machines etc) and the CPAP was even invented here….not america…maybe that’s something you need to point out to your doctor. Australia is leading the medical field in several areas, OSA quite possibly being one of them. But i’ve never heard anyone from Au saying dont’ listen to what they say in the USA!! I do think however it is ALWAYS good to be cautious about anything you read online, be it in a newsgroup, webpage or whatever, cause it’s completely unregulated and people can present whatever they like as fact. My advice is to compare the info you get here with info from other sources, ask your sleep clinic what publications are available in the UK etc. As far as humidifiers are concerned, my local SA support group (I haven’t been able to attend yet but have spoken to one of the founding members on the phone) says that in this area, 100% of people on CPAP need a humidifier – I’ve yet to get my CPAP, so i haven’t started to tackle the humidifier area yet. I don’t imagine i’ll have trouble getting a prescription for one, getting the money/funding for one on the other hand will be an entirely different matter. Anyhow i"ve rambled on a bit here but basically what i wanted to say is – get your doc to check out australian research/developments with OSA and then he may see that america isn’t so far off the mark afterall. Beth in Australia "Pat & Jim" <jsbr26…@cableinet.co.uk> wrote in message news:TYuG6.3431$Mz.372699@news1.cableinet.net… – Hide quoted text — Show quoted text -> "Tom Devlin" <tomdev…@ameritech.net> wrote in message > news:gqsjetocsibel8qvuptstmjmhqcctv49t4@4ax.com… > > "Pat & Jim" <jsbr26…@cableinet.co.uk> wrote: > > >I have recently started using a mirage full face mask and would like to > > >know: > > >Is the pressure different when using a full mask? > > No, the pressure’s the same no matter what mask you use. > > >Should I increase/decrease the pressure myself as it takes at least six > > >weeks to get an appointment to see my sleep doc, for a new titration it > can > > >take up to two years for an appointment, the UK nhs does not have funds > to > > >speed this process up unfortunatley. > > Some people here have experimented with self titration, I sure > > wouldn’t try it myself. > > >The reason I want to know this is, I dont feel as refreshed in the > morning > > >as I did when using a nasal mask, a profile lite which was ok at first, > but > > >having "leak" problems with it after only 3/4 weeks use. > > Some people find full-face masks to be a little claustrophobic, that > > might keep you from sleeping as soundly. The Mirage nasal mask might > > be worth trying if you’re not comfortable with the full-face version. > > >Also I would like some opinions (from UK and USA citizens) about some > thing > > >my sleep doc said, he said and I quote " not to read/listen to American > news > > >groups ect on OSA as they go way over the top" > > In what respect? > All respects of OSA, such as OSA being life threatening, secondary > ailments and equipment. > They tend to play it down. > As I said in my earlier post I do not agree with the my docs opinion, OSA is > not fully recognised in the UK as an ilness, so it is very difficult to make > any informed requests for equipment. > Masks: we generaly have to make do with what ever mask we are given and it > becomes a battle to get them changed. Suggestions like "I Read about this or > that mask" is again played down and we are told not to listen/read anything > from the USA. > Humidifiers its like getting blood out of a stone to get a humidifier. > Maybe its just my doc thats badly informed, (or me) which is why I asked for > opinions from the USA and UK. > Pat > > – > > Sick of Spam? Join CAUCE. http://www.cauce.org
Response:
"Tom Devlin" <tomdev…@ameritech.net> wrote in message
news:gqsjetocsibel8qvuptstmjmhqcctv49t4@4ax.com… – Hide quoted text — Show quoted text -> "Pat & Jim" <jsbr26…@cableinet.co.uk> wrote: > >I have recently started using a mirage full face mask and would like to > >know: > >Is the pressure different when using a full mask? > No, the pressure’s the same no matter what mask you use. > >Should I increase/decrease the pressure myself as it takes at least six > >weeks to get an appointment to see my sleep doc, for a new titration it can > >take up to two years for an appointment, the UK nhs does not have funds to > >speed this process up unfortunatley. > Some people here have experimented with self titration, I sure > wouldn’t try it myself. > >The reason I want to know this is, I dont feel as refreshed in the morning > >as I did when using a nasal mask, a profile lite which was ok at first, but > >having "leak" problems with it after only 3/4 weeks use. > Some people find full-face masks to be a little claustrophobic, that > might keep you from sleeping as soundly. The Mirage nasal mask might > be worth trying if you’re not comfortable with the full-face version. > >Also I would like some opinions (from UK and USA citizens) about some thing > >my sleep doc said, he said and I quote " not to read/listen to American news > >groups ect on OSA as they go way over the top" > In what respect?
All respects of OSA, such as OSA being life threatening, secondary ailments and equipment. They tend to play it down. As I said in my earlier post I do not agree with the my docs opinion, OSA is not fully recognised in the UK as an ilness, so it is very difficult to make any informed requests for equipment. Masks: we generaly have to make do with what ever mask we are given and it becomes a battle to get them changed. Suggestions like "I Read about this or that mask" is again played down and we are told not to listen/read anything from the USA. Humidifiers its like getting blood out of a stone to get a humidifier. Maybe its just my doc thats badly informed, (or me) which is why I asked for opinions from the USA and UK. Pat – Hide quoted text — Show quoted text -> – > Sick of Spam? Join CAUCE. http://www.cauce.org
