AHI VS Symptoms

[christinequilts]

Sleepless-

Have they ever addressed the PLMD? Did they test your iron levels? Try any of the meds? especially Requip that was approved by the FDA for PLMD last May. I know you have focused a lot on the OSA, but I can't remember many post about your PLMD & how that is going. Have you ever asked your doctor outright the reasoning for the DX of OSA? Have them explain why they reached that conclusion? Were they able to show you on your titration that you had less PLMD with CPAP? Doctors are human too & they can make mistakes...granted using a CPAP when you don't need is a less costly mistake then amputating the wrong leg, but its a mistake none the less.

[Sleepless on LI]

Sleepless-granted using a CPAP when you don't need is a less costly mistake then amputating the wrong leg, but its a mistake none the less.

Doctors and healthcare providers are human and make mistakes. And being in the profession where I take many a malpractice deposition, I thank the Big Guy when things end well, regardless of what you've been through to get there. It really is a blessing when the bottom line is, you're okay.

I was told that my PLMs were totally eliminated at my titration study after being placed on the mask. Perhaps that had a lot to do with their decision to put me on therapy, along with moderate oxygen desats. The AHI did not meet the criteria.

I don't think asking my doctor would get me anywhere. I just used my primary care physician for this and I believe she took her lead from the report she got from the sleep study that recommended 10 cms. of CPAP therapy and a heated humidifier. I think I would probably have to get the answers from the RRT who interpreted my studies and made the recommendations, but I guess it's not worth it at this point.

Rested Gal has also mentioned looking into PLMs now that I'm off the hose to make sure that isn't a reason for being tired on some days perhaps. I think it's a good place to explore. Right now, though, I am holding my own and feel pretty good. I am no where near what I was pre-CPAP, thank God.

Thank you for your caring and, as always, your wonderful input. Hope you are doing well. Have you considered or are you on that new auto bipap?

[chrisp]

Did I miss the French lesson ?



:twis ted:

[christinequilts]

Have you considered or are you on that new auto bipap?

I wish I could, but its only a regular/spontaneous BiPAP and I need BiPAP ST for the CSA. I am going for a new sleep study this Sunday to see if anything has changed in the past 2 years- especially since I'm on different sleep meds (Rozerem) now. I'm still hoping that when the AutoSet CS is available that I will get a chance to try it. My biggest concern, is that it is made by ResMed & I do miserably on thier VPAP ST's every time I've tried one. Hopefully the AutoSet CS will be so different that it won't be an issue, but who knows.

None of this sleep stuff is easy. I made a comment about a certain med not working in the past to my sleep doc and he asked me if it was before the CSA was DXed & treatment started and of course it was. His point was that just because it didn't work in the past, doesn't mean I should totally rule it out since the untreated CSA was complicating the picture & many of my problems with that particular med were actually more from the CSA then anything else. I think it is so easy to get too focused in on one aspect- as you found out when you first experimented with changing your settings. As humans, we want to see causation in everything...we like to know that A leads to B and nothing else. When in reality, it may just be that A & B are caused are both caused by C, or worse yet, they are totally unrelated and just happened to happen at the same time. I never thought I would hear myself saying this, but the one professor in grad school who lectured on Chaos Theory may have been right...

[Sleepless on LI]

I guess, Christine, if we could make A+B=C every time, things would just be too easy and we wouldn't know what to do with ourselves. But good point about the medication and not being on treatment yet. That's why sometimes when you have multiple things going on at once, it may be a good idea to keep a diary or a log of some type to help you remember when you tried what and what was happening at the same time you did. If you're anything like me, I always think I'll remember and then don't. And each time, it still comes as a surprise to me that I forget the details.

Well, I wish you luck. I know you have a tough time with the CSA's and I hope that things will only get better for you.

[Amigo]

Well, here I am as usual coming in at the tail end of a very lengthy discourse.

My first thought is that AHI "monitoring" does little harm, and may, in fact, be providing some people with a placebo effect. Whether some feel this monitoring is obsessive and not constuctive may be irrelevant if, indeed, those monitoring feel better when their numbers are very low. If they don't feel better, then obviously it's a waste of time that should be better spent finding the real cause of their problem.

Secondly, I have a very cynical view of our health care system, in general. DME's especially that only "push" one or two brands of equipment simply because they get the best "deals" from the manufacturers regardless of whether it's the right equipment for the patient. As usual it's the "follow the money" trap that limits our choices.

Lastly, although I prefer the thread organization of the ASAA website, I am troubled by its limitations of truly open discourse. Those of us with sleep apnea have too many hurdles to jump to be forced into "whispering" information in personal messages that are banned in the open forum. To say nothing of the information that is "lost" to those that may need it.

Yes, a completely open forum can result in having to wade through unnecessary "rants," but personally, I would still prefer that to an attitude of "we know what's best for you" (or "us," as the case may be).

Perhaps ASAA should strive for the Consumer Reports organizational model where they accept no outside advertising, but don't hesitate to make recommendations, and let us, the consumers, voice our opinions openly about specific brands.

[wading thru the muck!]

Amigo,

Great Post!

I'm glad (yet troubled at the same time) to see that others have noticed the heavy hand of the ASAA forum moderator. I look at their policy with a heavy dose of scepticism. Here is how I look at it... Say for example you invented an alternative to Kleenex that worked just as well or better and cost a third of what Kleenex costs... then say the ATUA (American Tissue Users Association) had a forum for those afflicted with NMD (nasal mucous disorder)... if the ATUA has the policy of banning mention of any tissue brands on their forum the end result is of no impact on Kleenex but serves to eliminate any actual user experiences with this new unknown product, even though the new product would offer significant financial benefit to NMD sufferers.

It seems to me that an organization purported to represent a particular common group would support the exchange of information that would provide such a significant benefit.

My guess is the ASAA would counter my argument by saying that they question the benefit of the online DMEs. I would be in agreement with them if was not for the extremely poor service offered by many local DMEs and the huge cost savings offered by the online providers.

Again, thanks for offering your reasoned thoughts on this important topic... IMO, you see the picture very clearly.

[LDuyer]

Lastly, although I prefer the thread organization of the ASAA website, I am troubled by its limitations of truly open discourse. Those of us with sleep apnea have too many hurdles to jump to be forced into "whispering" information in personal messages that are banned in the open forum. To say nothing of the information that is "lost" to those that may need it.

Yes, a completely open forum can result in having to wade through unnecessary "rants," but personally, I would still prefer that to an attitude of "we know what's best for you" (or "us," as the case may be).

Perhaps ASAA should strive for the Consumer Reports organizational model where they accept no outside advertising, but don't hesitate to make recommendations, and let us, the consumers, voice our opinions openly about specific brands.

I just wanted to clarify that the ASAA discussion forum does not allow posting of links directed to the commercial sites which manufacture and sell sleep apneac products. However, the forum does allow open discussion of products and experiences, that which can reflect the "consumer reports" idea of educating the public, so long as advertising is not a part of that discussion.

As a nonprofit organization the ASAA cannot show bias in favor of any one commercial site and therefore does not promote or endorse a particular brand, manufacturer, or vendor of Sleep Apnea Products. And it cannot allow discussions which repeatedly endorse a particular vendor and are thereby perceived as advertising.


This does not mean that people cannot mention brand names, or experiences they have had purchasing equipment, so long as it is not acting as advertising by effect and pressuring others about a single product or service.

In fact, the ASAA forum openly links to other discussion boards, inviting people to view information and opinions discussed at all these boards. The ASAA forum wants people to be active consumers armed with as much information and choices as possible. The ASAA forum is merely a different type of discussion forum because of its nonprofit status and mission.

These boards may be different in many ways, but fundamentally all these boards have the opportunity to help people with sleep apnea.


Linda

[wading thru the muck!]

As a nonprofit organization the ASAA cannot show bias in favor of any one commercial site and therefore does not promote or endorse a particular brand, manufacturer, or vendor of Sleep Apnea Products. And it cannot allow discussions which repeatedly endorse a particular vendor and are thereby perceived as advertising.


"This does not mean that people cannot mention brand names, or experiences they have had purchasing equipment, so long as it is not acting as advertising by effect and pressuring others about a single product or service."

Not true!

I have never "advertised" nor "pressured" anyone in regard to any manufacturer or vendor, yet I have had many posts moderated or deleted.

All I've done is related my personal experiences and the experiences of others on the forums in response to questions asked by others on the ASAA forum.

The folks on the ASAA forum need to take an honest look at what they are really accomplishing by their actions.

[Guest]

Lets just make a post on the ASAA site mentioning a few Auto units and see what happens ! I'll bet Wader is proven correct .

Cheers,

Deleted in ASAA land

[Unknown_HoseHead]

Wow you guys are really hung up! You have this great forum, and you insist on going someplace you don't like, for what? Just so you can complain about it!

Personally I don't like sleepnet, the forum is hard to use, and is WAY overmoderated. Guess what? I DON'T GO THERE! Why can't we get back to our forum instead of worrying about ones that we don't like or frequent?

Its great that Johnny and crew have provided this forum for us, why clutter it up with this nonsense?

[Guest]

Its great that Johnny and crew have provided this forum for us, why clutter it up with this nonsense?

AMEN!!!


(Personally, I thought the original post by Mikesus was meaningless "gobbledegook" anyway.)

[chrisp]

Yall take yourselves WAY tooo serious.

:twis ted:

[Yet another Hoser]

Yall take yourselves WAY tooo serious.

:twis ted:

I think you take your twisteds to serious

[chrisp]

:twis ted: