This area is for Sleep Apnea questions and general Sleep Apnea Discussions.
I've had a bunch of sleep studies done. I've had 2 BiPAP machines that didn't work because it was determined that I have (severe) mixed apnea. I now have an auto servo ventilation machine, which doesn't work either. I've been trying it for several months and I can't get used to it. I either take it off after an hour or wake up in the middle of the night to discover I have removed it. Most of the time I wake up up a few minutes after falling asleep. I don't know what the issue is but this ASV is obviously not working. And even if I wear it for a few hours, I still feel terrible in the morning. The doctor just says "keep trying it" but I don't see the point. If it doesn't work after 50 times it's not going to work after 100 or 1000. I stopped using it because I'm tired of fighting it. According to the readings, when I am using it, it does a great job of controlling my breathing, but I still feel awful in the morning. I'm not dealing with it anymore. I'm sick of it. I've been trying machines off and on since 2008 and none of them work. I think whoever designed these things must have been looking for a way to torture prisoners. I'm looking for easier alternatives. At this point I would rather die of a stroke at 50 than spend the next 50 years fighting with this damn machine.
Bottom line is that I am looking for alternatives to BiPAP therapy and I am NOT accepting "just keep trying it" as an answer. I already "just kept trying it" and it got me nowhere. There has to be some alternative form of treatment.
- Posts: 9
- Joined: Thu Nov 13, 2008 2:35 pm
Tims, it is encouraging that the machine does seem to be doing its job when you are wearing it. However, as you clearly know, the challenge is how to get to wear it more. Can you help everyone understand your difficulties: what pressure are you prescribed, and what is the average pressure that the machine uses? If the machine is set with a pressure difference that is too wide, spikes in the pressure can cause you to wake up. So that is one route to explore before you give up completely.
What mask are you using? Is it causing you pain or irritation? If it is not fitting properly, that can cause you to remove it.
If you can add the above information to your signature, other members can read it and instantly be pointed in a direction that might help you more.
Diagnosed September 2009, Respironics System One w/ C-flex and humidifier
Aloha nasal pillows
Not a medical professional, just a patient with severe OSA (31) who has done a lot of reading.
- Posts: 1066
- Joined: Thu Sep 17, 2009 6:36 pm
- Location: North of Philadelphia
- Machine: PR System One
- Mask: Resmed Swift FX
- Humidifier: Yes, integral with PRS1
- Year Diagnosed: 2009
First of all, like SleepyToo said, we can offer more help if you can give more information about your mask, etc.
You say you want an "easier" alternative to bipap, and that you'd rather die of a stroke at 50 than deal with the machine. Really? I suggest you take a field trip to the nearest rehab facility and see what the aftermath of a stroke can be like. While you're at it, visit the cardiac unit of the hospital and see the effects of a heart attack, another possible consequence of untreated apnea. There are a lot worse things than having to use a cpap.
Lest you think that I am unsympathetic and don't know what you're going through, let me assure you, I do. I was on bipap for over a year, with virtually no results. I have severe complex apnea, and finally was switched to an asv machine. And while there was some improvement, it still wasn't working as well as it should. So I made an appointment at the nearest big teaching hospital, with the director of the sleep lab there. He looked at my sleep studies and immediately saw that my leg movements were a problem, and prescribed Mirapex, a med for restless leg syndrome. Finally, I am getting quality sleep, and am slowly starting to feel like my old self. So, the sleep apnea was not the only problem, and it is takiing a combination of asv and Mirapex to deal with it.
You may have something else going on besides the apnea. If you are not seeing a qualified sleep specialist, then you might want to consider doing so. My former doctor was a pulmonologist, and a very nice person. But in the year that she was treating me, she never once mentioned that the leg movements might be affecting my sleep. She was concentrating only on the apnea, and that just wasn't enough. It took another pair of eyes to see what else might be wrong.
Please don't give up. Sleep apnea is a very serious condition, and not an easy thing to live with. And each individual is different. What works for one person will not necessarily work for another. There is a lot of trial and error. There is a solution for you, but you have to keep digging until you find it. We're here to help, and the more information you can provide, the more we can do.
Best of luck
Resmed Vpap Adapt SV Enhanced, Respironics Fit Life total face mask, Forma full face mask.
Complex apnea, original AHI 80
- Posts: 771
- Joined: Thu Aug 06, 2009 11:53 am
- Machine: Resmed Adapt SV Enhanced
- Mask: Respironics Fit Life
- Humidifier: Yes
- Year Diagnosed: 2009
One reason you still feel bad is because you have not been able to consistently use your PAP, therefore, you have never recovered your sleep debt or the damage to your body that has accumulated. I don't know where my post went, but you seem to have tried it all. Therefore, have you considered surgery? Surgery will only help with the OSA and usually requires a multiphasic approach for most cases of OSA except for those that are very mild. This approach was pioneered by Stanford:
http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed
The other alternative for OSA which is 100% successful and a fairly simple surgical procedure is a tracheotomy. There are a couple of forum members who have had that done and they are very happy with the results. You can put "tracheotomy" in the Google search field on the left and pull up their posts. Once again, it of course won't help with central apneas.
If your pressure is so high because of your OSA, then surgery might help decrease your pressure so that you can be more compliant and correct your centrals with your ASV.
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Vos Savant
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.
- Posts: 6311
- Joined: Tue May 31, 2005 8:21 pm
- Location: Southern California
- Machine: DeVilbiss IntelliPAP
- Mask: Fisher & Paykel Flexifit 431
- Humidifier: Rarely as needed
- Year Diagnosed: 1999
I just read about this tongue stimulator on a forum here that seems to work.
- Posts: 157
- Joined: Mon Oct 25, 2010 9:11 pm
pain32 wrote:I just read about this tongue stimulator on a forum here that seems to work.
Can you be more specific ?
The untreated Sleep Apnoea sufferer died quietly in his sleep..
Unlike his three passengers who died screaming !
The first 40 years of childhood are by far the hardest
- Posts: 6006
- Joined: Sat Jun 25, 2005 5:49 am
- Location: Ireland
- Machine: Philips Respironics System One Auto
- Mask: ResMed Micro Nasal Mask
- Humidifier: No
- Year Diagnosed: 1993
they say they are in European trials now so it may not be available
I've tried CPAP for months now without much success so I'm wondering
what other options there are
- Posts: 157
- Joined: Mon Oct 25, 2010 9:11 pm
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