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Permalink Reply by Mary Z on March 17, 2010 at 10:28am

Can you read the nigtly data from your BiPAPMachine? If so, what does your respiratory rate read?
I hope you get some informed answers here.
Good Luck with your tests on the 26th.
Mary Z.

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Permalink Reply by Len Ford on March 17, 2010 at 11:41am

Thanks Mary, for your reply. No, I cannot read any data from my machine, except how many hours I sleep. Hope I get some more answers here.

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Permalink Reply by Carl on March 17, 2010 at 2:02pm

You should ask him WHY he decided NOT to do another sleep study. Get some information on ASV (adaptive servo ventilation) and the machine that offer this mode of operation. Many sleep centers don't have them and haven't heard of them. This machine is able to deal with not only the obstructive sleep apnea (by blowing the air all the time like a CPAP/BiPAP machine), but also senses your breathing rate and when your breathing stops. It is when your breathing stops that the machine ramps up to provide much more pressure and act as an auto-ventilator. I know that both Respironics and ResMed make such machines.

In fact, if you find the ResMed page on ASV, you will actually see that they say that BiPAP machine may actually case MORE CSA events... The following is taken directly from

http://www.resmed.com/us/documents/1010807r3-vpap-adapt-sv-tech-fac...

Quote
Most CSA/CSR patients have trouble tolerating conventional bilevel ventilatory support. The pressure must be adjusted to a constant high level to adequately support a patient during apnea/hypopnea. This leads to over-ventilation during periods of normal breathing or hyperpnea, which causes arousals and discomfort. It can even propagate more CSA events.
Unquote

How about that - the BiPAP machine can actually CAUSE CSA events !!! Like I said in another thread, I think that machines like CPAP and BiPAP will go away in favor of much better technology. The mere fact that 50% of people who try CPAP don't stick with it should show the medical industry that a better solution must exist. Is ASV technology the answer? Don't know - I'll let you know after I try it, but I'm hoping that it's at least a good start. They're definitely not perfect, but better machines come out all the time.

Carl

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Permalink Reply by Len Ford on March 17, 2010 at 10:50pm

Carl said:

You should ask him WHY he decided NOT to do another sleep study. Get some information on ASV (adaptive servo ventilation) and the machine that offer this mode of operation. Many sleep centers don't have them and haven't heard of them. This machine is able to deal with not only the obstructive sleep apnea (by blowing the air all the time like a CPAP/BiPAP machine), but also senses your breathing rate and when your breathing stops. It is when your breathing stops that the machine ramps up to provide much more pressure and act as an auto-ventilator. I know that both Respironics and ResMed make such machines.

In fact, if you find the ResMed page on ASV, you will actually see that they say that BiPAP machine may actually case MORE CSA events... The following is taken directly from

http://www.resmed.com/us/documents/1010807r3-vpap-adapt-sv-tech-fac...

Quote
Most CSA/CSR patients have trouble tolerating conventional bilevel ventilatory support. The pressure must be adjusted to a constant high level to adequately support a patient during apnea/hypopnea. This leads to over-ventilation during periods of normal breathing or hyperpnea, which causes arousals and discomfort. It can even propagate more CSA events.
Unquote

How about that - the BiPAP machine can actually CAUSE CSA events !!! Like I said in another thread, I think that machines like CPAP and BiPAP will go away in favor of much better technology. The mere fact that 50% of people who try CPAP don't stick with it should show the medical industry that a better solution must exist. Is ASV technology the answer? Don't know - I'll let you know after I try it, but I'm hoping that it's at least a good start. They're definitely not perfect, but better machines come out all the time.

Carl

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Permalink Reply by Len Ford on March 17, 2010 at 11:08pm

Carl, I appreciate your opinion. I agree with you, that the reason no one will use neither the CPAP/BIPAP is that it doesn't work for them and most can't stand the masks. I know personally lots of people who should be using them, but they put them in a closet and leave them there. The thing is, that we both know that we can have a heart attack, if we don't use it or we are so weak & tired, we can hardly make it through the day. I have always had lots of energy, but I don't now. It seems that I am getting worse.

Thanks again for advice. I have copied what you & another stated. To be honest, when I asked the doctor about the sleep study, he was supposed to do, he mentioned that he needed to check my lungs to see why I was holding my breath. Right then, I didn't trust him anymore. I have had plenty of chest xrays, but never the breathing test. I have read facts about breath holding, and the brain fails to instruct the body to breathe. I think the doctor is just getting more money from me.

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Permalink Reply by Carl on March 18, 2010 at 2:27am

Len,

One of the tests I had done was a complete PFT (pulmonary function test). I have had several of these done over the years because I had very severe childhood asthma. It largely went away as I grew older and by the time I was a teenager it was largely gone. It has come back to a degree, and I believe when I lose weight, it will go away again.

The PFT will show the doctor how well your lungs function. If you have very poor PFT results then perhaps no matter what you would do for night time, your O2 sats will be horrible and that is, ultimately, what we're all trying to avoid.

That part about checking your lungs to see why you hold your breathe - I have to agree - I think I'd run, not walk away from this guy, but, I'm not you and I don't know your situation. Press him a bit for a more in-depth answer and don't let him off the hook.

Heck - the main RN at the sleep center I went to never heard of the oral devices that help keep your jaw forward. There's also an elastic headband to help keep your jaw from sliding back. Like in any job, these people have to read, learn and stay current, and not all of them do that - they just get comfy/cozy in their standard routine.

To top things off, I also have paralysis of the left hemi-diaphragm. I've been looking more and more into that and it appears there are some tests that can be done to determine more precisely what's going on and there may be a glimmer of hope of getting it repaired. But, the cardiologist I was seeing (who is quite well known in a positive light) had never heard of any such thing.

The one thing I've learned is that YOU have to be responsible for your own care because to the doctors and nurses.... well, face it - you're just another patient.

Carl

Len Ford said:

Carl, I appreciate your opinion. I agree with you, that the reason no one will use neither the CPAP/BIPAP is that it doesn't work for them and most can't stand the masks. I know personally lots of people who should be using them, but they put them in a closet and leave them there. The thing is, that we both know that we can have a heart attack, if we don't use it or we are so weak & tired, we can hardly make it through the day. I have always had lots of energy, but I don't now. It seems that I am getting worse.

Thanks again for advice. I have copied what you & another stated. To be honest, when I asked the doctor about the sleep study, he was supposed to do, he mentioned that he needed to check my lungs to see why I was holding my breath. Right then, I didn't trust him anymore. I have had plenty of chest xrays, but never the breathing test. I have read facts about breath holding, and the brain fails to instruct the body to breathe. I think the doctor is just getting more money from me.

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Permalink Reply by sherry on March 20, 2010 at 11:38pm

Hi Len, just saw this..I too have the breath-holding central and OSA, I am fortunate to be using the Sleep & Neurological Center at one of the best hospitals in the nation..a few things that may be of interest to you that they told me--the holding my breath is a neurological condition..we didn't go any further about that, but from reading on the internet I saw it could be from injury, which, since I had several severe horseback falls with concussions, could be the cause..
I am interested in your statement that you (like me) were exposed to second hand smoke for a long period, and that may be a cause..

the other thing they said was that the insurance companies want to start you at the simplest (cheapest) unit possible, and keep you on it until the stats show it won't work..then will go to the next level machine. This was a real concern to me as my insurance only would rent it for a month before the purchase..I was lucky that they were able to justify trying the AV machine first, it worked, and I got to keep it.
It works great, although sometimes, because I use nasal pillows, when I stop breathing and the pressure kicks up it will sometime cause such a leak I wake up. But very comfortable in every other way. (Remstar AV Bipap)

Good luck, and hope that you can use the information on here to get what you need.

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Permalink Reply by Len Ford on March 21, 2010 at 12:44am

Thanks Sherry, for your reply. I have read also that holding my breath is a neurological condition. But I didn't know what that involved. I never did read anything about this subject. But glad that you mentioned to me, that it could be from an injury. In 2003 a car at a high rate of speed, came from a side road onto the main highway, and hit my passenger side door where I was sitting. I had my seatbelt on, but it hit me so hard, that my whole body turned around left and then my head slammed against the door window. I got a bad concussion, neck injuries, vertebra broken in half & etc. Except for the Grace of God, I don't know why I am even alive. I had to have spine fusion later, all kinds of therapy and will always suffer in pain, as a result of the accident.

I prefer using the nasal pillows but they seem to make my nose irritated after a few nights of using them. The same lung doctor gave me Flonase to use, & wants me to use the pillows. I read somewhere that you get more oxygen, using them instead of a full mask.

I will post again after I find out what the second hand smoke reveals. My test is scheduled for 03/26, I see the doctor about two weeks after that. Hope you catch the post.

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Permalink Reply by sherry on March 22, 2010 at 12:08am

Len, I found that I couldn't use my regular down pillow (also neck issues) because I sleep on my side and the nasal pillows were always getting pushed by my head movements.. Since I am too cheap to buy one of the CPAP pillows, I tried using my airplane travel pillow, which is the little 'U' of memory foam, it does a good job of supporting my neck, and the headgear hardly touches at all..after @ 6 months I am dropping right off to sleep and it never bothers me at all unless the headgear loosens up a little and I start springing leaks..

I bought a 2 pack at Sams recently, they were about half the price of my original, but they are not as good a quality and don't work quite as well, but still much better than a regular pillow..you might try one just to see, the nasal pillows are so much less bulky..

Good luck at your dr visit, and will be waiting to hear, especially if he addresses the non-smoking smoking..although they say after 2 years (?) all bodily effects are healed, it would make sense..I did many years of holding my breath as my parents were exhaling smoke all over the place! That learned behavior is hard to change, lol

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