Alternatives to CPAP

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catblaster said:
  I was also a face down or to the side sleeper until my first heart attack and they realized I stop breathing several times depending on conditions. My CPAP machines are continually improving from a CPAP to a BIPAP, next an AVAP and finally an IVAP.  No testing necessary for the new IVAP, it senses pressures and wave fluctuations and adjusts, also has remote monitoring so the first night a tech goes over the information and make manual adjustments to the machines parameters.
    Before xplant I was on oxy (15L) and the solution is very simple, there is a tee fitting added to the hose at the machine and the oxy line attaches there. If you get up in the night you detach the hose and connect to your cannula. I quickly learned that too much oxy at night can cause a person to stop breathing since the body sees its oxy level as satisfactory and slows down breathing too much. This is where an IVAP comes into play. When it sees no breath being taken it will sent a pulse of air to remind the body it needs to breath.....so far it works every time.  Best solution for this is to follow advice and cut back on oxy flow at night when the need is not as great.Also a water tank and heater is a necessity since the oxygen will dry out sinuses to the point of bleeding.


    When there are times I use my old BIPAP machine the same thing happens. Waking up in a panic with my heart pounding.  After two or three times in one session I refuse to sleep and stay awake until I can get to my other machine (IVAP).

  If you are eligible for VA benefits they will provide a state of the art machine and consumables.

Catblaster you are the type a person I was referring to way up at the top of this post..I'm glad you are able to get the equipment you need. In the private sector insurance companies fight very hard with anything over a C-PAP's
Are you still using 15L OF O2...That's a VERY high level. In-fact We only had a few people that used 5L.
 
Gizmo100 said:
Catblaster you are the type a person I was referring to way up at the top of this post..I'm glad you are able to get the equipment you need. In the private sector insurance companies fight very hard with anything over a C-PAP's
Are you still using 15L OF O2...That's a VERY high level. In-fact We only had a few people that used 5L.

No more supplemental oxygen for me !! A double lung transplant on 29 Aug 2012 solved that problem. But I still have two bottles of it sitting beside me now, seems hard to get rid of it. A reminder of how things used to be.

Because regulators max out at 15L the PT nurses would tie two tanks and regulators together with the cut off ends of a stethoscope to make 30L so I could get on the treadmill for therapy.
 
catblaster said:
  I was also a face down or to the side sleeper until my first heart attack and they realized I stop breathing several times depending on conditions. My CPAP machines are continually improving from a CPAP to a BIPAP, next an AVAP and finally an IVAP.  No testing necessary for the new IVAP, it senses pressures and wave fluctuations and adjusts, also has remote monitoring so the first night a tech goes over the information and make manual adjustments to the machines parameters.
    Before xplant I was on oxy (15L) and the solution is very simple, there is a tee fitting added to the hose at the machine and the oxy line attaches there. If you get up in the night you detach the hose and connect to your cannula. I quickly learned that too much oxy at night can cause a person to stop breathing since the body sees its oxy level as satisfactory and slows down breathing too much. This is where an IVAP comes into play. When it sees no breath being taken it will sent a pulse of air to remind the body it needs to breath.....so far it works every time.  Best solution for this is to follow advice and cut back on oxy flow at night when the need is not as great.Also a water tank and heater is a necessity since the oxygen will dry out sinuses to the point of bleeding.


    When there are times I use my old BIPAP machine the same thing happens. Waking up in a panic with my heart pounding.  After two or three times in one session I refuse to sleep and stay awake until I can get to my other machine (IVAP).

  If you are eligible for VA benefits they will provide a state of the art machine and consumables.

More good info to educate me.  But I need to comment on the dry sinuses and bleeding.  I have been on oxy at night for over one year (2L) and have not had this problem but I can easily see how 15L would cause it.  I was amazed when I first read your Oxy levels but see that your lung transplants have solved that problem and am happy for you.  Health is everything but breathing is the first step in good health.  Thankfully the Medicare and Tricare for Life cover 99 percent of my health expenses.  I have empathy for those who are younger with health problems now.  Just the deductible is enough to bankrupt many folks.  Again, thanks for that info.
 
Bill N said:
More good info to educate me.  But I need to comment on the dry sinuses and bleeding.  I have been on oxy at night for over one year (2L) and have not had this problem but I can easily see how 15L would cause it.  I was amazed when I first read your Oxy levels but see that your lung transplants have solved that problem and am happy for you.  Health is everything but breathing is the first step in good health.  Thankfully the Medicare and Tricare for Life cover 99 percent of my health expenses.  I have empathy for those who are younger with health problems now.  Just the deductible is enough to bankrupt many folks.  Again, thanks for that info.

    Thank You Bill, I think that by now they have billed close to $2M. I added up the billing shortly after transplant and it was at $1M then and that was a little more than 6 years ago. This year the Photopheresis sessions were billed at just under $10K each and there were 25 of them, medicare doesn't cover it so therefore neither does my supplemental but when I got several statements and the balance was $0.00, thats a beautiful thing. I dont know who or what group paid it but I sure am thankful. 
    Some people cant get their transplant because of the financial burden, the inability to pay for it. I was fortunate with the right insurance at the right time, met my deductible in Jan/12 and haven't paid anything since.....good insurance and good fortune.
 
I started out on a CPAP, but after 3 months I gave it up. I just couldn't sleep with it. I am now using one similar to the one I linked. It is adjustable, so you can pull the lower jaw forward as much or little as needed. My wife swears by it!


http://www.empowereddoctor.com/wp-content/uploads/2018/03/herbst_acrylic.jpg
 
?Sorry if I missed it but can someone tell me what health condition causes difficulty breathing at night and the need for a C-pap machine?
  Simple explanation:  during sleep your muscles relax and soft tissues in back of throat ?collapse?, thus blocking your airway.  The CPAP creates a pneumatic splint holding your airway open.  Prior to PAP most common solution was a surgery (maybe 50% effective) where they cut out some of the soft tissue. Dental appliances can adjust your jaw position, again the goal is keeping your airway open.  Sleeping position, often sleeping on side, may help as soft tissues doesn?t ?fall? into airway.
  Most common is ?obstructive sleep apnea? (OSA), obstruct - the soft tissues blocking airway. Apnea: to stop breathing.  There are other causes of apnea, however much less common. Simple PAP generally not effective solution when cause is other.
    Weight loss can help. Alcohol does play a factor (even using PAP, your prescription may be fine most of the time, but not enough pressure at times you over indulge).
  Snoring is an indication, but does not mean OSA. However, if while snoring your bed partner gasps for air, startles awake to breathe, that should be tested. 
  In addition to disrupting your sleep (patients report always feeling tired), lack of breathing (getting rid of CO2) puts excessive strain on your heart.  PAP is simple, generally effective, one of those few treatments that can change your life for the better ?overnight?.  The masks / interfaces can be a PIA, so try different types till you find one that works.
    Someone asked about using O2, you can bleed it into your pap mask with a simple valve. Ask your provider.
  Adding humidification can reduce dry mouth. Keep your mask/tube clean!
  I am not a Dr, spent 20 plus years involved in the HME industry with a lot of time around PAP ..so this is layman?s view.
   
 
Adding to J32952's explanation, with sleep apnea, when you stop breathing, the brain eventually signals you to wake up and start breathing. You may not fully wake, but you come out of the deep recuperative sleep. After some period of breathing, you fall back into deep sleep, muscles relax, and the process starts all over. This can happen many times a night, meaning that you don't get the prolonged deep (restful) sleep that the body needs. The net result is that the following day you feel very tired and are likely to fall asleep at inopportune/unexpected times.
 
Tom said:
Adding to J32952's explanation, with sleep apnea, when you stop breathing, the brain eventually signals you to wake up and start breathing.

Or my DW would kick me.  :eek: ::) :-[ :-\ :'(
 
Rene T said:
Or my DW would kick me.  :eek: ::) :-[ :-\ :'(

Rene that wasn't a kick...That was a love tap.

My first wife swore up and down that I would stop breathing at night...One night I'm laying in bed WIDE AWAKE. Had a lot of things on my minds and just couldn't sleep. All of sudden she smacks me in the chest..I about had a heart attack...She insisted I stopped breathing...I promised her that not only was I breathing but I was awake the whole time and I think I would have noticed.....
 
I am a huge proponent of exercise, and it's never too late to start. Anything you do in the way of aerobic exercise or weight bearing exercise will make a significant difference in your overall general health and mobility. Dozens of studies have been made with participants in their 80's, and after 4-6 weeks of minimal exercise, all reported better mobility and over all general health. 

I have a buddy that was using a CPAP and was on diabetic and blood pressure meds. He got mad, changed his diet and started a regular exercise program. Not excessive, just regular.  When I saw him again he had lost 50 pounds, and his doctor had just taken him off of the meds.  He quit the CPAP 2 months prior. He will be 70 in a few months, and feels way better than he had in years.  I am a believer.
 
SargeW said:
I am a huge proponent of exercise, and it's never too late to start. Anything you do in the way of aerobic exercise or weight bearing exercise will make a significant difference in your overall general health and mobility. Dozens of studies have been made with participants in their 80's, and after 4-6 weeks of minimal exercise, all reported better mobility and over all general health. 

I have a buddy that was using a CPAP and was on diabetic and blood pressure meds. He got mad, changed his diet and started a regular exercise program. Not excessive, just regular.  When I saw him again he had lost 50 pounds, and his doctor had just taken him off of the meds.  He quit the CPAP 2 months prior. He will be 70 in a few months, and feels way better than he had in years.  I am a believer.

:)) :)) :)) :)) Any exercise is better than none....I used to encourage O2 PT. to flex their hands and/or arms during TV commercials. You have to start somewhere.
 
OK, I've been using a CPAP for 30 days now, and I'm not sure it is doing anything for me. Although I'm getting good scores on the CPAP phone apt, I certainly don't sleep any better.  I'm using the full mask and it leaves me with a red face in the mornings. Maybe, I still haven't got used to it.
 
Lowell, how do you know you don't sleep any better? Were you diagnosed wigh sleep apnea or some othef sleep disorder? At a follow up, the sleep doc will analyze the data on the CPAP memory card and let you know what he sees.
 
Tom, I was diagnosed with sleep apnea. The sleep lab said I stopped breathing 45 times in one hour. According to the CPAP apt on my phone, I average about 2-4 apnea/hr. with the machine.  But I feel less rested than I did before I started with the CPAP machine and it takes me a long, long time to get to sleep while wearing the mask. I have an appointment with the doc in two weeks.
 
First try DW had was a disaster.  Mainly because she simply refused to accept it.  She fought for two more years getting between 2 and 3 hours sleep a night  always in a foul mood, well you get the point.  I finally convinced her to get another one.  She has had it now for several months.  Now she sleeps 5-6 hours a night with no wake ups.  She did go through 4 different masks before she found one that works with her face.  She still complains, but she is way more pleasant to be around.  You can fight it all you want, but if you have the problem there is little that can be done except using a CPAP, BPAP or what ever your DR recomends.
 
Aye donn, the choice of mask makes a big difference. My wife and I were both unhappy with my first CPAP machine and mask. They sat in the closet unused for a number of years. When I eventually went back through the process - sleep study, new machine and nose pillows instead of full mask, Chris kept checking on me in the night because she'd never seen/heard me sleep so soundly.

I know the next day if I slept well, because I'm not tired and don't want to fall asleep.

Lowell, you might just need to try different styles and sizes of masks.
 
Lowell said:
Tom, I was diagnosed with sleep apnea. The sleep lab said I stopped breathing 45 times in one hour. According to the CPAP apt on my phone, I average about 2-4 apnea/hr. with the machine.  But I feel less rested than I did before I started with the CPAP machine and it takes me a long, long time to get to sleep while wearing the mask. I have an appointment with the doc in two weeks.

Lowell,
I would start making notes of the issues you are having using the CPAP. When you get to the DR. go over each issue to find a working solution. There are a lot different styles of mask that may work better. You may also have pressure setting that needs to be adjusted.

I will caution you not to stop using the CPAP. Forty five time's/ hour is a very high number.

 
    Dont give up on it, there are a lot of things that can be adjusted to make it work. I started with a full face mask which didnt work at all, then a partial and now I'm using nasal pillows and even those have to be the right ones or it irritates me into waking up.  Hang in there, it will get right.
 
Ok, Thanks for the encouragement.  My son loaned me his old nose pillows . I like the way they feel but I felt like I wasn't getting as much air. I'll see if I can get some other masks or nose pillows to try.
 
Lowell,

When you first start using the nasal pillows, you may have a tendency to leave your mouth open. That results in the air going in through your nose and out through your mouth, defeating the object. It may take a little practice to keep your mouth closed.
 
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