Replies to This Discussion

Permalink Reply by sleepycarol on October 30, 2009 at 6:46pm

Hi Maxine,

I do not use your particular machine, nor do I have complex or central sleep apnea. There are those on the forum that do use your particular machine and have central or complex sleep apnea. I am sure one of the them will see your post and comment.

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Permalink Reply by susan mccord on October 30, 2009 at 7:03pm

Way to jump right into the Forum, Maxine!!! There will be some replies--several people on here have central, not sure about complex, but probably.

There's a woman on here named Judy who knows a LOT about machines. She may be familiar with yours.....she'll be around--she always shows up!!

Susan McCord :-)

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Permalink Reply by RockRpsgt on October 30, 2009 at 7:12pm

What would you like to know?

http://www.google.com/search?q=Idiopathic+central+apnea&sourcei...

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Permalink Reply by Maxine Driscoll on October 30, 2009 at 7:55pm

I would like to know if their machine emits alarms when the person is awake or almost asleep? My doctor had no explanation when I asked him.. I thought perhaps a mask leak might trigger an alarm, but I couldn't find any leaks.. Has anyone tried a similar machine for central apnea manufactured by Resmed? These ASV machines are not prescribed for obstructive sleep apnea.

Rock Hinkle said:

What would you like to know?

http://www.google.com/search?q=Idiopathic+central+apnea&sourcei...

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Permalink Reply by Wes Carlson on October 30, 2009 at 7:56pm

Maxine....My name is Wes and I was diagnosed this past August with Complex Apnea.I use the same machine as you use.As for the alarms going off your DME can shut them off.The only one I let run on my machine is if the hose would disconect it would alert me.I have used several differant mask from full face to nasal mask.Less trouble with leaks using the nasal ones.Don't know your settings on the machine but mine are Max IPAP of 30.0 and Min IPAP of 15.0.I am feeling a whole lot better after 2 months of treatment.What ever you do,Do Not give Up.

Wes

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Permalink Reply by Maxine Driscoll on October 30, 2009 at 8:17pm

Hi Wes, My settings are 10 minimum and 30 maximum. My DME also said they could shut off the alarms, but my MD sleep specialist frowned on that idea. I tried a nasal mask when I was on a CPAP machine (which did nothing for me) so I will try it with this machine. I have been using the ASV machine for about six weeks. It was recommended that I use a full face mask. I won't give up, but sometimes at 4:00 a.m. I decide I have had enough ringing alarms and chuck the whole thing.

Wes Carlson said:

Maxine....My name is Wes and I was diagnosed this past August with Complex Apnea.I use the same machine as you use.As for the alarms going off your DME can shut them off.The only one I let run on my machine is if the hose would disconect it would alert me.I have used several differant mask from full face to nasal mask.Less trouble with leaks using the nasal ones.Don't know your settings on the machine but mine are Max IPAP of 30.0 and Min IPAP of 15.0.I am feeling a whole lot better after 2 months of treatment.What ever you do,Do Not give Up.

Wes

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Permalink Reply by Rock Conner RRT on October 31, 2009 at 9:49am

Hi Maxine:

I disagree with your sleep physician. He or she is being overcautious. ASV at it's best facilitates sleep even when our breathing problems get in the way. Setting the alarms to awaken you w/ each sleep disordered breathing encounter serves to get you breathing properly again, which is good, but defeats the goal of facilitating sleep. ASV is a very smart ventilator that when properly titrated & programmed will handle most central apneas without the need to awaken you with each episode.

Rock C.

Maxine Driscoll said:

Hi Wes, My settings are 10 minimum and 30 maximum. My DME also said they could shut off the alarms, but my MD sleep specialist frowned on that idea. I tried a nasal mask when I was on a CPAP machine (which did nothing for me) so I will try it with this machine. I have been using the ASV machine for about six weeks. It was recommended that I use a full face mask. I won't give up, but sometimes at 4:00 a.m. I decide I have had enough ringing alarms and chuck the whole thing.

Wes Carlson said:

Maxine....My name is Wes and I was diagnosed this past August with Complex Apnea.I use the same machine as you use.As for the alarms going off your DME can shut them off.The only one I let run on my machine is if the hose would disconect it would alert me.I have used several differant mask from full face to nasal mask.Less trouble with leaks using the nasal ones.Don't know your settings on the machine but mine are Max IPAP of 30.0 and Min IPAP of 15.0.I am feeling a whole lot better after 2 months of treatment.What ever you do,Do Not give Up.

Wes

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Permalink Reply by Maxine Driscoll on October 31, 2009 at 10:15am

Hi Rock, Thanks for your reply. I think you are correct. I will email my neurologist/sleep doctor and tell him I want to mute the alarms. This morning about 3:00 a.m. the alarm kept going off every two minutes. I could find no leaks in my mask and I was wide awake and breathing, so something is obviously wrong somewhere. After about twenty alarms within a short time, I turned everything off, took off my mask and then I slept.

Rock Conner RRT said:

Hi Maxine:

I disagree with your sleep physician. He or she is being overcautious. ASV at it's best facilitates sleep even when our breathing problems get in the way. Setting the alarms to awaken you w/ each sleep disordered breathing encounter serves to get you breathing properly again, which is good, but defeats the goal of facilitating sleep. ASV is a very smart ventilator that when properly titrated & programmed will handle most central apneas without the need to awaken you with each episode.

Rock C.

Maxine Driscoll said:

Hi Wes, My settings are 10 minimum and 30 maximum. My DME also said they could shut off the alarms, but my MD sleep specialist frowned on that idea. I tried a nasal mask when I was on a CPAP machine (which did nothing for me) so I will try it with this machine. I have been using the ASV machine for about six weeks. It was recommended that I use a full face mask. I won't give up, but sometimes at 4:00 a.m. I decide I have had enough ringing alarms and chuck the whole thing.

Wes Carlson said:

Maxine....My name is Wes and I was diagnosed this past August with Complex Apnea.I use the same machine as you use.As for the alarms going off your DME can shut them off.The only one I let run on my machine is if the hose would disconect it would alert me.I have used several differant mask from full face to nasal mask.Less trouble with leaks using the nasal ones.Don't know your settings on the machine but mine are Max IPAP of 30.0 and Min IPAP of 15.0.I am feeling a whole lot better after 2 months of treatment.What ever you do,Do Not give Up.

Wes

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Permalink Reply by RL on January 9, 2010 at 8:50pm

Hi Maxine,
I am recently diagnosed with complex SA, and am trying to understand the central apnea part. My central apnea is "idiosyncratic" as there is no cause for this discovered at this time. My thyroid levels are good, also EKG was "healthy" with no arrhythmias and no known neurological causes. My Rx is for CPAP 7 cmH20 with 3l O2. I have tolerated the equipment well for my first eleven days using a nasal pillow mask. My PCP referred me to a pulmonoligist, which I will be seeing end of next week, to check for anything else. I am trying to understand the central apnea and the prognosis for that. My Rx indicates no C-flex or EPR (not sure what EPR is) due to best results from only this pressure. I am wondering about asking to try the ASV unit which is mentioned by the sleep doc's report, but not prescribed at this time. The DME comments made me think that a variable pressure unit would not be appropriate for me. I figure it will take some time to tell if the CPAP is effective, and plan to ask my DME for a printout of log the day before seeing the pulmonoligist so I can share that info with him. I was hoping that maybe if the CPAP worked well that I might be able to quit using the oxygen at some point, but I don't see anyone saying that could or has happened.

Any thoughts and/or updates on your own experiences would be appreciated. BTW - what are PLMS and RLS?(restless leg syndrome?)

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Permalink Reply by Vic Collins on January 10, 2010 at 1:02pm

Hi
I found out that I got CSA from having Bacterial Meningitis 20 years ago. I have a great sleep specialist who prescribed a Bipap machine. For the past 2 years I have been struggling with trying to make it work. The biggest problem was getting the right mask. My doctor referred me to a company called Lincare, and the tech came to my home and put in the wrong settings to the machine. They were so wrong that they caused me to have stroke symptoms and chest pain. I did not get any rest for 2 months with that going on. Then the company got in trouble with my doctor and they never helped me again. After that, I took a year long break since I couldn't find any help. Finally I found a good company called Legacy, and the tech explained that really my facial features are so small and my nose so narrow, that I needed a Childs' sized mask. The problem with the Bipap machine is that the pressures have been so high that they push the soft masks to the point of leaking air into my eyes. My eyes have had lots of issues because of that. After going so long without treatment for this condition, I've developed some breathing problems. So now my doctor had an oxygen machine hooked up to the bipap machine. On the rare nights that I have been able to tolerate a mask, I have awakened feeling much better. But still cannot find the right mask for me. My nose is like the scarecrow's nose on Wizard of Oz, too long and narrow to accommodate most masks. The only solution I can see is if some company would start making custom designed masks for us by doing molds of our faces and then putting together the perfect fit. But I am told no one has or wants to do that for some reason. The first mask I tried that worked great for a whole night was a nasal mask, but when I awoke, I had a bad bruise on the top of my nose from having to tighten the headgear so it would not leak. Then the tech told me that when your face gets bruised you have to take a break from the machine, because it can become an open sore. I am going to try to tape the top of the mask together at the top to see if that will help seal better and find something to cover my eyes, but I am beginning to see that if you try to alter these masks in any way, they just don't work and leak even more. Does anyone have any suggestions for me?

Regarding RLS, I used to have it, but after studying and practicing both yoga and tai chi, I cured myself of that problem. In general, I also discovered that if a person with central sleep apnea takes any kind of sedating medication (even cold medicine) and then that person does not use a Bipap machine to aide in breathing at night, you can end up nearly suffocating or getting stroke or heart attack symptoms! For this reason, I am careful to avoid taking any sedation whatsoever when I go to bed, unless I can get my mask to work properly. Central Sleep Apnea is caused by brain damage to the part of the brain (usually the reticular activating system that regulates the autonomic functions of the body automatically) that tells our diaphragms to move and causes us to breathe at night. If you get brain damage, then CSA can happen. Now, if a person's lungs are fairly healthy, most of the time, they will build up with CO2 to a point where he or she naturally gasps for air, and that usually causes him or her to wake up and breathe again. These many awakenings are what make us so tired. I have noted that even in the daytime, I can forget to breathe, which is kind of scary.

I have another theory as to how to deal with this problem however, I don't know if it can work. If muscles have memory, and the diaphragm is a muscle, then it makes sense that it could be trained eventually with much practice to move on its own without any signal from the brain. This would be difficult to accomplish and take many hours of mindful practice, but it could be beneficial just to mindfully practice diaphragmatic breathing every day for periods of time. If anyone tries this let me know if it works for you...

Thanks,
Vic

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Permalink Reply by Maxine Driscoll on January 10, 2010 at 2:10pm

Hi Vic,
I agree whole heartedly about the mask problem. Why can't someone make custom masks? When I asked a ResMed representative, he said it would be too expensive. I, for one, would be happy to pay. I have a prosthetic eye and the ocularist makes a mold of the socket and then makes the prosthesis. He doesn't just expect a stock eye to fit everyone. My custom eye costs $2,000. Fortunately my insurance pays for it, but if it didn't, I would be happy to pay.
After searching the internet for custom masks, I emailed someone in Brooklyn about making a custom sleep mask. No answer, The company in Australia evidently makes only the nasal mask and I require one that also covers my mouth. I tried calling them, but they were closed for two weeks over the Christmas holiday. I don't have any desire to go to Austrailia, but I would if they could make one that meets my needs. Meantime, I finally found a mask that is workable, but I sleep on my side, which frequently causes the mask to be pushed out of place.

If anyone has heard of anyone who makes CUSTOM MASKS, please let us know.

Maxine

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Permalink Reply by RL on January 12, 2010 at 11:17pm

Hi Vic,
Your post was very interesting to me. I just started using a CPAP and have been reviewing and reading about apnea, in particular the central apnea, since I am diagnosed with Complex (obstructive & central), and the obstructive apnea seems pretty straight forward, more of a mechanical explanation. But for myself, the central apnea is puzzling. I am not aware of any particular neurological causes for myself such as your meningitis. I just posted an article I found about apnea causing brain damage. I was speculating as to whether untreated obstructive apnea could cause the type of brain damage that could cause the central apnea. Many apneans are familiar with the brain fog and memory loss, probably from lack of adequate oxygen getting to the brain. I doubt there is a definitive answer out there for this. I have also noticed periodic occasions during waking hours in which I am either "holding" my breath when I am focused on something, or just not breathing in, and becoming conscious of this, then mentally tell myself to breathe. I came across an article yesterday, (maybe on Dr. Park's website, not sure), where it was mentioned that people with small jaws were likely prone to apnea due to smallness of the airways in general. I too have a small mouth, jaw and airways and had already considered this to be an issue relative to my sinus problems and now the apnea. I was fitted with an extra small size nasal pillow mask (LT for her) which has worked well for me so far, with not much trouble with leaks as far as I am aware. The nasal pillows fit well with my nose, and there is really nothing about it that would exclude a man from using it. The most feminine thing about it is that the straps are light blue. Did you get a child sized mask? I also saw somewhere on a DME website, a mask that is supposed to fit over the whole face. It was not so commonly used but is available. Also, with newer masks coming out for nose/mouth coverage, there are some that now have a very soft almost gel like edge that molds to your face more. This might be worth trying. New things are always being developed, so don't give up your search.

Also, I was thinking about some breathing exercises I had tried in which one holds the breath after inhaling, then again after exhaling, and I was wondering if that pause was training my muscles to stop, more than they should. I notice that when I visit a doctor, and they are checking my lungs with the stethoscope and ask me to breath, I usually breath to deep or slow, causing the doctor to get impatient, so I have recently tried just breathing more shallowly, and forcing myself to stop and exhale, before I have a complete breath, allowing the doctor to hear enough to tell that my lungs are clear. Maybe this is not such a good idea, but I just react that way to their impatience. In the past, I have also read that in fact the brain and nerve cells can regenerate, not to mention new synapses growing to make up for those that are lost, as with stroke patients. Perhaps stem cell therapy will boost this type of tissue growth as well. I have thought of looking for some type of meditative practice or exercise that might work on a deeper level to correct the central apnea condition. I'm sure this will probably sound really "out there" to most people, but I'm not thinking of doing that instead of the CPAP, at least not for a long time. I was just hoping that maybe the CPAP would work well enough that the oxygen could be discontinued. I would be interested to hear more about how your yoga and Tai Chi pracitice has affected your apnea.

Vic Collins said:

Hi
I found out that I got CSA from having Bacterial Meningitis 20 years ago. I have a great sleep specialist who prescribed a Bipap machine. For the past 2 years I have been struggling with trying to make it work. The biggest problem was getting the right mask. My doctor referred me to a company called Lincare, and the tech came to my home and put in the wrong settings to the machine. They were so wrong that they caused me to have stroke symptoms and chest pain. I did not get any rest for 2 months with that going on. Then the company got in trouble with my doctor and they never helped me again. After that, I took a year long break since I couldn't find any help. Finally I found a good company called Legacy, and the tech explained that really my facial features are so small and my nose so narrow, that I needed a Childs' sized mask. The problem with the Bipap machine is that the pressures have been so high that they push the soft masks to the point of leaking air into my eyes. My eyes have had lots of issues because of that. After going so long without treatment for this condition, I've developed some breathing problems. So now my doctor had an oxygen machine hooked up to the bipap machine. On the rare nights that I have been able to tolerate a mask, I have awakened feeling much better. But still cannot find the right mask for me. My nose is like the scarecrow's nose on Wizard of Oz, too long and narrow to accommodate most masks. The only solution I can see is if some company would start making custom designed masks for us by doing molds of our faces and then putting together the perfect fit. But I am told no one has or wants to do that for some reason. The first mask I tried that worked great for a whole night was a nasal mask, but when I awoke, I had a bad bruise on the top of my nose from having to tighten the headgear so it would not leak. Then the tech told me that when your face gets bruised you have to take a break from the machine, because it can become an open sore. I am going to try to tape the top of the mask together at the top to see if that will help seal better and find something to cover my eyes, but I am beginning to see that if you try to alter these masks in any way, they just don't work and leak even more. Does anyone have any suggestions for me?

Regarding RLS, I used to have it, but after studying and practicing both yoga and tai chi, I cured myself of that problem. In general, I also discovered that if a person with central sleep apnea takes any kind of sedating medication (even cold medicine) and then that person does not use a Bipap machine to aide in breathing at night, you can end up nearly suffocating or getting stroke or heart attack symptoms! For this reason, I am careful to avoid taking any sedation whatsoever when I go to bed, unless I can get my mask to work properly. Central Sleep Apnea is caused by brain damage to the part of the brain (usually the reticular activating system that regulates the autonomic functions of the body automatically) that tells our diaphragms to move and causes us to breathe at night. If you get brain damage, then CSA can happen. Now, if a person's lungs are fairly healthy, most of the time, they will build up with CO2 to a point where he or she naturally gasps for air, and that usually causes him or her to wake up and breathe again. These many awakenings are what make us so tired. I have noted that even in the daytime, I can forget to breathe, which is kind of scary.

I have another theory as to how to deal with this problem however, I don't know if it can work. If muscles have memory, and the diaphragm is a muscle, then it makes sense that it could be trained eventually with much practice to move on its own without any signal from the brain. This would be difficult to accomplish and take many hours of mindful practice, but it could be beneficial just to mindfully practice diaphragmatic breathing every day for periods of time. If anyone tries this let me know if it works for you...

Thanks,
Vic

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