"please keep me updated about oximeters "
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Patients Stepping Up to Help Uneducated Masses
There is so much ignorance of sleep apnea. We here at this forum are the lucky few who actually know a little bit more than the average Joe about the condition. But every day, thousands of people are being diagnosed with sleep apnea and walking into the mine field that we all have experienced. My question is what can we as the educated patients do for these newcomers, and how do we reach them in time?
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Replies to This Discussion
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Permalink Reply by 99 on
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it not the masses it is the doctors we need to contact when doctors have a conference we need to be represented at these confrences somehow and it needs to be sustained first register your interest with the national bodies of that contry and ask for direction as to action and follow through
you need a stall at these conferences and perhaps even pay for representation like paying a dr to be on the stall or ask to send a resmed to have a stall that is the way to go
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do not forget celebrities can man these stalls they would probable get more attention if that was done
99 said:it not the masses it is the doctors we need to contact when doctors have a conference we need to be represented at these confrences somehow and it needs to be sustained first register your interest with the national bodies of that contry and ask for direction as to action and follow through
you need a stall at these conferences and perhaps even pay for representation like paying a dr to be on the stall or ask to send a resmed to have a stall that is the way to go
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also we need to coordinate with all other sleep apnea forums and were possible just have everybody contrabute to one world apnea forum so all information is not gathered in diffrent places how about an affilliation of our forums with the aim of making it one forum we would then be a force to recon with because of our sheer size
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Permalink Reply by susan mccord on
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Don't hold back, Judy!! Just say what you mean!!! LMAO!!!!!!
McCord :-D
j n k said:I admit that for three or four days I felt worse as my body/brain got used to the differences. The Respironics tests pressure at intervals, and to me, it isn't nearly as smooth. It sometimes feels slightly out of sync with me in how it senses transitions between inspiration and expiration. Now, after a few weeks, I feel about the same as far as quality of sleep.
It is comforting to me to see the Respironics machine land at around the same pressures as I go through the auto-titration-combined-with-self-titration process like I went through with the ResMed. It is also comforting to see exactly what my leak is and how it varies through the night, using Encore Pro software. Perhaps the most comforting thing is seeing that I don't have non-responsive apneas and that my vibratory snore isn't as bad as I expected it to be. All in all, it is making me appreciate how quiet and smooth and convenient my ResMed machine is that I will be using long term, so that is a good thing.
Mostly I just hope I can be of better help to Respironics users in the future.
Rock Hinkle said:The new Resmeds don't look so bad. Sleek almost. I do see your point on the manly view of the respironics. How are you feeling though? Better, worse, or the same?
j n k said:Obviously you have been speaking to my wife! :-)
I don't get the blue lights or hooking the hose up to the back of the humidifier at all, but design-wise, I like the ugly gray box. It looks like something you might store ammo and fishing lures in. :-D
Judy said:"Fisher-Price-toy look of the ResMeds"?????? .... "manly look of the Respironics"????? You LIKE the look of those ugly black boxes??? Ach!!! jnk!!! You have NO taste at all! Rank them on therapy, rank them on data .... but LOOKS??? And you prefer the look of those ugly black boxes??!!!! No taste at all, jnk, NONE!
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My Lord, Tim!! I haven't had the problems you've had to deal with but, Man!, you've been through the fire. And still have a sense of humor!! Good for you!!!!!! It's good to have a warrior like you on SleepGuide. There are a lot of them here, and you've joined the ranks!!
Keep in touch--hopefully you'll get some input that's helpful to you.
Susan McCord :-)
Tim Rupe said:At 10:43pm on October 21, 2009, Tim Rupe said…
Okay so this is my story. I have had trouble with my snoring waking me up several times per night for most of my life. I am now 42 years of age. I went to a sleep study in 2004 and they placed me on a BIPAP machine. After having 3 more sleep studies due tot he levels not being set correctly I finally started to actually get some sleep to where I could tellt he difference from prior nights with out the machine. I wear a FULL FACE MASK due to having a deviated septum, I am a mouth breather from what my doc says LOL. Anyway I do not use the humidifier unless I am in a dry climate, I live in Seattle, WA so no problems with worring about a dry climate LOL. During my sleep study I woke up 36 times per hour due to not breathing 36 times for up to one min. with out a bi-pap hooked up to me. No wonder I got no sleep! ya think! sheesh! okay so anyway I used the bi-pap and was okay with my sleep I was getting with it for 5 years. Then recently in Jan 2009 while wearing my mask I woke up with a bunch of paramedics and cops surrounding my bed and my wife above me telling me to lay back down. I was of course feaked out! I was asking everyone what happend, what happend to me! I could hardly breathe at all, very little air was coming and going from my lungs. If I sat up the breathing got worse. They told me I had a grand mal seizure! and during this seizure which I had never had before in my entire life nor has anyone in my family had I broke 4 thorasic vertabrae? OUCH! yeah it hurt bad and still does. So of course at the hospital that night they ran every test you could imagine on me about 35,000.00 dollars worth! cat scans or my backl, MRI of my brain, EEG, EKG, Heart ultra sounds, full heart work ups at a heart specialist. Full blood work and really still did not know what was wrong with me. Then I scheduled myself to go see a nuerologist, she had my heart checked again with overnight heart monitors and nothing came back the ticker was fine thank goodness! so she told me she thought it was due to my sleep machine not being adjusted right? so she sent me to another sleep study number 4 total and it said I had severe sleep apnea of course which I already knew......and I was told me airflow and pressure needed to be adjusted so they adjusted it. Also they placed me on seizure meds KEPPRA 100MG per day. Then 6 months went by and I dealt with my broken back and the whole time I went right back to work with my broken back because I could not afford to miss work....that sucked but it is what it is. Unforutnatley in July 2009 I had yet another siezure with my Bi-Pap machine on and re-broke all of my vertabrae that had just started to heal in my back UGH!!!!!!!! I woke up this time in the ambulance and oh boy was that intersting! I was like is this a dream or am I in an ambulance!!!!!!!! the EMT said you had a gran mal seizure while sleeping! I said great not again! so I went to a different hospital this time and they ran a bunch of tests and determined that they "BELEIVE" my bi-pap machine was defective? so I had my respitory doc look at it and he said the motor was intermitant and could have stopped while I was sleeping and suffocated me? I was told that this could not happen that my mask could be breathed through even if the power went out! there was suppose to be some valve that opened for me to breathe? anyway I was told that maybe I breathed in my own air over and over again and got poisended by this? which caused me to have a seizure? I have yet to go see my neurologist for this second seizure because I lost my job due to the economy and lay offs so I have no insurance! UGH!!!!! so if anyone out there has had a seizure while wearing their full face mask on a cpap or bi-pap please comment back to me! thanks and as far as getting use to using the bi-pap due to the airflow it took me about 6 months, so just bear down and deal with it! just dont take it off. I still use my NEW bi-pap machine even though I feel my seizures were triggered some how by the mask and machine. I figure I will use it until someone tells me it could kill me, I am just not sure at this point what is wrong with me???
TimDelete Comment
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Permalink Reply by Renee on
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Hello Tim ~
Missed seeing your posting back in October. I hope you are doing measurably better by now. I am truly sorry with how much physical and emotional stress you have been going through. I don't know anything about the machines and the possibilities of how a technical defect could impact one's breathing and cause seizures but seems more than coincidence that you've had 2 with no personal or family history after starting PAP therapy. I hope that others who have technical knowledge will respond to you and let you know about the possibilities of defects affecting one's health in this manner so you might be able to rest easier with your new equipment. And I really do hope the new equipment will provide the resolution you need for the sake of your wellbeing. I really can't say enough how much I commiserate with you for all you have and are now going through in so many aspects of you life. With all that you are going through, I will be thinking of you and wishing you the very best. Please keep posting and I'll look forward to hearing about what's going on with you.
All good wishes,
Renee
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WE need an authoratative name that encompass the world of sleep
and when it is mensioned they know who we are
talk about affilliation
we could issuse some reccognisable cirtificates that are accepted worldwide, as a leading authority
a force to be reconed with
a title name could be World Sleepguide
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Executive Director
American Sleep Apnea association6856 Eastern Avenue, NW Ste. 203
Washington, DC 20012
202-293-3650
that could easly be
World Sleep Apnea Univerity
as that sounds impressive as our title
and look an executive director too!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Believe me, 99, it WILL be someday........:-)
Susan
99 said:Executive Director
American Sleep Apnea association6856 Eastern Avenue, NW Ste. 203
Washington, DC 20012
202-293-3650
that could easly be
World Sleep Apnea Univerity
as that sounds impressive as our title
and look an executive director too!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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I agree, Renee--I'm hoping Dr. Park will weigh in on this one. He's very knowledgeable about the ins and outs of sleep apnea and complications....
Susan
Renee said:Hello Tim ~
Missed seeing your posting back in October. I hope you are doing measurably better by now. I am truly sorry with how much physical and emotional stress you have been going through. I don't know anything about the machines and the possibilities of how a technical defect could impact one's breathing and cause seizures but seems more than coincidence that you've had 2 with no personal or family history after starting PAP therapy. I hope that others who have technical knowledge will respond to you and let you know about the possibilities of defects affecting one's health in this manner so you might be able to rest easier with your new equipment. And I really do hope the new equipment will provide the resolution you need for the sake of your wellbeing. I really can't say enough how much I commiserate with you for all you have and are now going through in so many aspects of you life. With all that you are going through, I will be thinking of you and wishing you the very best. Please keep posting and I'll look forward to hearing about what's going on with you.
All good wishes,
Renee
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i hope it will be much longer than one day
susan mccord said:Believe me, 99, it WILL be someday........:-)
Susan
99 said:Executive Director
American Sleep Apnea association6856 Eastern Avenue, NW Ste. 203
Washington, DC 20012
202-293-3650
that could easly be
World Sleep Apnea Univerity
as that sounds impressive as our title
and look an executive director too!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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