"please keep me updated about oximeters "
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Ron sent this question in error to me, but meant it for the entire group:
"Hi everyone,
I recently had my third sleep study. First one was done about 8 years ago where I was diagnosed with obstructive sleep apnea and was given a CPAP machine. About two years ago another study was done because we felt that pressures were too low. Pressures were set higher but this has been bothersome and I usually end up throwing it off during the night sometime. A recent third study shows that I have what is known as central sleep apnea. This is when the brain doesn't give the signal to the lungs to BREATHE! No one seems too concerned about this and it has taken forever to just get the report back. I am going to a neuro next week due to a brain CT showing moderate gray matter loss and to possibly see about a new machine called an ASV? It is supposed to be a computer that records your normal breathing pattern. then when you stop breathing the machine jumps in with the normal pattern and gets you back on track. Gee, I thought that was what CPAP did. I am very tired all the time, sleep a LOT. I am beginning to think that nothing will help me and I will just die in my sleep. Anyone heard of any good results from this. My pulse rate went way low at my last study and my o2 sat rate went down to 80% at one point. This can't be good."
"Hi everyone,
I recently had my third sleep study. First one was done about 8 years ago where I was diagnosed with obstructive sleep apnea and was given a CPAP machine. About two years ago another study was done because we felt that pressures were too low. Pressures were set higher but this has been bothersome and I usually end up throwing it off during the night sometime. A recent third study shows that I have what is known as central sleep apnea. This is when the brain doesn't give the signal to the lungs to BREATHE! No one seems too concerned about this and it has taken forever to just get the report back. I am going to a neuro next week due to a brain CT showing moderate gray matter loss and to possibly see about a new machine called an ASV? It is supposed to be a computer that records your normal breathing pattern. then when you stop breathing the machine jumps in with the normal pattern and gets you back on track. Gee, I thought that was what CPAP did. I am very tired all the time, sleep a LOT. I am beginning to think that nothing will help me and I will just die in my sleep. Anyone heard of any good results from this. My pulse rate went way low at my last study and my o2 sat rate went down to 80% at one point. This can't be good."
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Replies to This Discussion
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Permalink Reply by D. W. Conn on
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ASV has been fantastic for our trouble patients. Trouble meaning those who do not respond to CPAP-BiPAP etc. Brain injury or age related brain changes (which is another story in itself) can or May cause some central apnea. I have seen ASV work wonders. The trick for the Technologist is to keep his/her hands off the controls and let the ASV do its work.
MAKE SURE that the technologist performing the exam is seasoned. Sorry to put it out there like this but a rookie Technician and ASV is NOT a good combination.
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Permalink Reply by RockRpsgt on
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Exactly! I am still learning the fundamentals of these machines. I would never do one without someone there to help.
D. W. Conn said:ASV has been fantastic for our trouble patients. Trouble meaning those who do not respond to CPAP-BiPAP etc. Brain injury or age related brain changes (which is another story in itself) can or May cause some central apnea. I have seen ASV work wonders. The trick for the Technologist is to keep his/her hands off the controls and let the ASV do its work.
MAKE SURE that the technologist performing the exam is seasoned. Sorry to put it out there like this but a rookie Technician and ASV is NOT a good combination.
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Permalink Reply by RL on
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Kathy Muckinhaupt said:
"hi! I read your post and wondered how long it took to adjust to the new ASV. I've had one about 3 weeks and am not adjusting to it. I thought it was going to be magic and make everything in my life better and instead I feel worse. I don't think I'm waking up because of sleep apnea any longer but am being awakened by the change in pressures and the stupid noises the air leaking makes. I'm also swallowing a ton of air and wake up to have big burps. It seems like the seal of the mask has to be a lot tighter and I don't know how much tighter I can make it without cutting off the circulation to my face.... Even if the machine isn't annoying me I'm still having trouble falling asleep and staying asleep. I also feel like the machine changes pressure when I'm awake..."
Kathy - what type of xPAP were you on before, or have you used any other cpaps? I had similar issues when going from single pressure CPAP to APAP, perhaps to a lesser degree. This seems to be improving with time and my awareness of how the APAP works. My pressure settings are still low enough that I am still using a nasal pillow type mask, so I cannot help you there. Do ASV PAPs have a pressure ramp button? If anyone knows, I would be curious to find out. I sometimes use this button if I am having trouble getting settled and having the APAP adjust to my breathing without staying at the higher pressures too long. It sounds like the ASV might not have a pressure ramp button as it might interfere with the way it works? I am still wondering if I would do better with the ASV, but my med team is not currently supporting that.
Kathy - could you have your DME check the data card from your machine for you? They may be able to identify some issues or give the data to your doctor to help make adjustments to equipment or help you adjust. It will probably take a combination of things, so keep looking, asking, thinking.
Good luck with adjusting to your equipment! It seems to take some time for many, no matter what equipment you have. There are other threads on SG that discuss the swallowing of too much air, causing discomfort in your stomach, and others regarding mask issues. Look around or type a search word in the search box on the upper right corner of the SG border.
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Permalink Reply by sherry on
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Hi Kathy--I have a Respironics AV machine, and I too had problems at first..I was very discouraged when the Dr. told me it could take 6 months to a year to get used to it--but thinking of all the negatives of untreated sleep apnea was a great motivator. Here are some of the problems I had and how I worked them out--I won't bore you with all the things that didn't work, lol.
Falling asleep--I fought the machine, it was like it was trying to breathe for me. I changed the ramp to the longest possible time, didn't go to bed till I was really sleepy, and kept my thoughts on things other than the breathing. I found if I was thinking about something else, I didn't focus on the breathing rhythm and fight it. Setting the ramp up to the longest time gave me more time to fall asleep before it started getting bossy. I also had the doctor lower the low pressure setting, from 6 to 4, that helped a lot. At 6 it was just too much, 4 may have been a little light, but at least I was using it..and since it was an ASV, I figured it should adjust anyway.
Mask--I couldn't find a FF mask that didn't leak a lot, as I have a very narrow bridged nose, so I use nasal pillows. It took quite a while to get them properly adjusted (I have tried every size!) so they didn't move around, and pop a leak when I stopped breathing and the pressure shot up. Because my pillow caused the straps to flex and move the nasal pillows, making them leak, I used a U-shaped travel pillow that didn't rub on the cheek straps. I finally am using my regular down pillow again, as the mask moving a little doesn't wake me up any more, plus I am sleeping better and not moving as much. I found there is a earth-moon-sun alignment that feels great, but movement of any one strap can throw it off..and, the straps loosen over time, so it can feel great tonight and awful tomorrow night. I found I was using too much pressure on the back straps and not enough on the over-the-head straps; those are the only ones I adjust now. The SleepGuide adjustment instructions helped a lot.
I started out with the Swift LT, then went to the Swift LT for Her, as there seemed to be so much gap in the headgear..it made a world of difference having headgear for a woman's head instead of a man! No matter how much I tightened it up, it just didn't conform to my face. The Swift for her also has soft covers for the cheek straps that eliminated the strap marks.
I got pretty discouraged after the first 3 months, so when I took a 4 day trip I left the ASV at home..those 4 days of feeling like crap showed me that I really needed the therapy. And with more and more health issues being linked to sleep apnea..I am thankful that I have my little machine to keep my O2 level where it should be. I have a friend who is in the hospital for the 2nd time in a month with CO2 poisoning..from not using his machine...so please, hang in there, keep trying things to make it more comfortable, you will make it!
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