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Difficulty adjusting to ASV machine
I was diagnosed with complex sleep apnea about 2 months ago. The vast majority of the apneic episodes in the sleep study were central apneas, with a much smaller number being obstructive apneas. My oxygen levels were dipping into the mid-60's. I was prescribed a bibpap machine with auto servo venilation (ASV). I am having great difficulty adjusting to this machine. My initial high pressure was set at 25, which explains the initial difficulty. The machine has been adjusted down twice and my max pressure is now set at 12. I can now go to sleep with the mask on, but am waking up with the mask off and not realizing I took it off. If I try to put it back on I am unable to fall back to sleep b/c I assume I'm at a different stage in the sleep cycle, falling into a deeper sleep sooner, stopping breathing and the machine kicks in with the high pressure immediately and I am constantly being woke up. I get so frustrated that I can't get back to sleep, when all I want to do is sleep, that I take it off and finish the night in a recliner. I am at my wits end and don't know what to do. I understand the seriousness of sleep apnea, particularly central apnea, but I don't know how to make this work. I've had the machine for 6+ weeks. Any helpful suggestions would be greatly appreciated?
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Replies to This Discussion
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Permalink Reply by Kristi Halsey on
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The machine I have does have a ramp feature, but it is not programmed to be accessible for my use. I was told that it wouldn't work for me with the central apneas. The machine stays at a low and tolerable pressure while I'm awake, but when it senses that i have stopped breathing it jumps up to stimulate my respiratory system. And therein lies the problem. Also, I would love to be able to try the nasal pillow, but I was told my the respiratory therapist that b/c of the pressure changes associated with the ASV machine the nasal pillow would be difficult to make work. I'm using the Mirage FX, which I was told is the lightest weight mask on the market. I figure if I have to sleep with something strapped my face it should be as light as possible. For the most part I don't have issues with air leaks and if I start to I have already bought a product from a company called Cpapseal.
During my second night of the sleep study they started me on a cpap, moved to bipap and then ended up with ASV. They told me before it started that based on the results of the first night of the sleep study they were almost certain I would need ASV. Evidently they have found that for some people cpap doesn't treat central apnea effectively. Lucky me. My Dad and my brother both have plain old cpap machines and "love" sleeping with them. My brother got his a month or so before me and has slept like a baby ever since. Naively I was expecting the same results. I think I'm going to take someone's advice and ask my doctor for a short-term prescription of a sleep aid that might help me to sleep through the pressure changes. Hopefully my body will get used to it and leave me unconscious during the process. Sleep is all any of us really want, right?!
Lynn said:I know exactly what you are talking about. Does asv have a ramp feature (I know nothing about that asv to be honest, like I said my brother used bipap but it didn't have asv. I can't remember if it had ramp either). Mine has a button I can hit that will send it to a lower pressure and then work up. Mine is set for 12 and if I had to start at that level, I'd never make it to sleep I don't think. It's like having a tornado in your nose.
When I first started on cpap years ago, they started me with a nasal mask and after 3 weeks, I would have greatly enjoyed chunking the whole arrangement. Like you, I'm claustophobic and nothing calmed me down. After 3 weeks, I was so exhausted, frustrated and irritable (worse than with sleep apnea) that I yanked the mask off and slung it against the wall. A regular old temper tantrum. I went back to medical supply place that issued me my first cpap and she changed my mask out for nasal pillows. I was blessed that the pillows worked for me. If I ever had to go back to nasal for ff mask, I'm pretty sure, I'd quit using a cpap. Others say you can overcome the claustophobia but I figure by the time I did, I'd be dead from exhaustion.
Have they ever tried you on just a plain old cpap or bipap with a constant pressure or at least a change you can get used to. I can sure see how going from 3 to 12 would disrupt your sleep. Like I said, if I didn't have the ramp feature, I would have a hard time being compliant cuz a few times, I've had the mask on when I turned the machine on and was slow hitting the ramp button. 12 blows you away! Strangely, I can have to get up to tinkle and when I put the mask back on, the 12 doesn't bother me. Wierd.
Kristi Halsey said:Thanks for the suggestions, Lynn. I have tried wearing it when I'm awake. When I first started using the machine I struggled with feeling very claustrophobic when I put it on so I would read for a while until I had calmed down and could try to go to sleep. Breathing with the machine while it's pushing a constant pressure hasn't been much of an issue. When I'm awake the pressure stays low and constant and I can fall asleep now pretty quickly. Staying asleep when the high pressure kicks in is the main issue, along with trying to stop myself from unknowingly taking the mask off (I've always been a sleep walker/talker and done odd things in my sleep). The ASV function monitors your breathing pattern for 3-4 minutes and then adjusts the pressures based on what you did the previous 3-4 minutes. So when it senses that I have stopped breathing it may jump the pressure from 2-3 cmH2O up to 12 cmH2O. It's kind of like a gentle breeze that turns into a hurricane force gale. That is what is waking me up and then I can't get it to stop. The pressure drops when I wake up and start breathing on my own, but as soon as I fall back to sleep I evidently stop breathing and the high pressure ramps up which continually wakes me up. It's a cycle I can't seem to adjust to. I can only take that for so long before I feel like throwing the maching out the window. It's either that or go sleep in the recliner, and given the cost of the machine I've been choosing the recliner, although I think I'd get a lot more personal satisfaction from chucking the machine.
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Permalink Reply by Terry Vella on
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Kristi, I think the short term perscription is a good idea.
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Permalink Reply by Lynn on
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That may be what you need to do. If you ccan't sleep then you can't benefit from asv anyway. Have you tried melatonin. That's supposed to supplement what your body might not be producing. Even some advil pm or tylenol pm for a bit of time might help. I took ambien for a year and 1/2 because I flat couldn't sleep without it. I was hit by a tornado at 1:30 in the morning almost 2 years agp and I think I was just basically afraid to go to sleep, (LoL, I can go to sleep knowing I'll stop breathing though, go figure). Ambien was a lifesaver for awhile. I finally tried sleeping without it. It does take me a bit longer to fall asleep. Insomnia will always be a problem for me. They even let me take ambien for the sleep study because at the time, I was taking that regularly.
Kristi Halsey said:The machine I have does have a ramp feature, but it is not programmed to be accessible for my use. I was told that it wouldn't work for me with the central apneas. The machine stays at a low and tolerable pressure while I'm awake, but when it senses that i have stopped breathing it jumps up to stimulate my respiratory system. And therein lies the problem. Also, I would love to be able to try the nasal pillow, but I was told my the respiratory therapist that b/c of the pressure changes associated with the ASV machine the nasal pillow would be difficult to make work. I'm using the Mirage FX, which I was told is the lightest weight mask on the market. I figure if I have to sleep with something strapped my face it should be as light as possible. For the most part I don't have issues with air leaks and if I start to I have already bought a product from a company called Cpapseal.
During my second night of the sleep study they started me on a cpap, moved to bipap and then ended up with ASV. They told me before it started that based on the results of the first night of the sleep study they were almost certain I would need ASV. Evidently they have found that for some people cpap doesn't treat central apnea effectively. Lucky me. My Dad and my brother both have plain old cpap machines and "love" sleeping with them. My brother got his a month or so before me and has slept like a baby ever since. Naively I was expecting the same results. I think I'm going to take someone's advice and ask my doctor for a short-term prescription of a sleep aid that might help me to sleep through the pressure changes. Hopefully my body will get used to it and leave me unconscious during the process. Sleep is all any of us really want, right?!
Lynn said:I know exactly what you are talking about. Does asv have a ramp feature (I know nothing about that asv to be honest, like I said my brother used bipap but it didn't have asv. I can't remember if it had ramp either). Mine has a button I can hit that will send it to a lower pressure and then work up. Mine is set for 12 and if I had to start at that level, I'd never make it to sleep I don't think. It's like having a tornado in your nose.
When I first started on cpap years ago, they started me with a nasal mask and after 3 weeks, I would have greatly enjoyed chunking the whole arrangement. Like you, I'm claustophobic and nothing calmed me down. After 3 weeks, I was so exhausted, frustrated and irritable (worse than with sleep apnea) that I yanked the mask off and slung it against the wall. A regular old temper tantrum. I went back to medical supply place that issued me my first cpap and she changed my mask out for nasal pillows. I was blessed that the pillows worked for me. If I ever had to go back to nasal for ff mask, I'm pretty sure, I'd quit using a cpap. Others say you can overcome the claustophobia but I figure by the time I did, I'd be dead from exhaustion.
Have they ever tried you on just a plain old cpap or bipap with a constant pressure or at least a change you can get used to. I can sure see how going from 3 to 12 would disrupt your sleep. Like I said, if I didn't have the ramp feature, I would have a hard time being compliant cuz a few times, I've had the mask on when I turned the machine on and was slow hitting the ramp button. 12 blows you away! Strangely, I can have to get up to tinkle and when I put the mask back on, the 12 doesn't bother me. Wierd.
Kristi Halsey said:Thanks for the suggestions, Lynn. I have tried wearing it when I'm awake. When I first started using the machine I struggled with feeling very claustrophobic when I put it on so I would read for a while until I had calmed down and could try to go to sleep. Breathing with the machine while it's pushing a constant pressure hasn't been much of an issue. When I'm awake the pressure stays low and constant and I can fall asleep now pretty quickly. Staying asleep when the high pressure kicks in is the main issue, along with trying to stop myself from unknowingly taking the mask off (I've always been a sleep walker/talker and done odd things in my sleep). The ASV function monitors your breathing pattern for 3-4 minutes and then adjusts the pressures based on what you did the previous 3-4 minutes. So when it senses that I have stopped breathing it may jump the pressure from 2-3 cmH2O up to 12 cmH2O. It's kind of like a gentle breeze that turns into a hurricane force gale. That is what is waking me up and then I can't get it to stop. The pressure drops when I wake up and start breathing on my own, but as soon as I fall back to sleep I evidently stop breathing and the high pressure ramps up which continually wakes me up. It's a cycle I can't seem to adjust to. I can only take that for so long before I feel like throwing the maching out the window. It's either that or go sleep in the recliner, and given the cost of the machine I've been choosing the recliner, although I think I'd get a lot more personal satisfaction from chucking the machine.
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Very excited to have slept 6 hours with the machine on last night! I don't know what was different but am praying it repeats itself tonight.
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Another exciting night of sleep! 6-1/2 hrs. I have no idea why it's working now when it wasn't two days ago, but I'm so thankful and hopeful that it will continue! I had an appt. at my CPAP clinic today and found out that my AHI for the last two nights was 0.8. I wanted to dance in the office! I know it's only two nights, but it is such a huge mental victory!!!
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Well done Kristi, you will probably see it get even better and then stablize. You may have the odd bad night every now and then but remind yourself that you have more good nights than bad now.
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Thanks, Terry. I am incredibly excited. (Who would have thought sleep could make me so excited) One odd thing at my appt. was the RT said my machine didn't have the option to enable the ramp function. I asked her about enabling it like you had suggested, to help me get back to sleep in the middle of the night. I thought that was odd given that my machine is the newest, most technologically advanced machine on the market. I came home and looked at the booklet that came with the machine and it says there is a ramp function available. I think I will contact Respironic and ask them about it and then get back with my RT.
By the way, congrats on your good check-up! Keep up the good work!
Terry Vella said:Well done Kristi, you will probably see it get even better and then stablize. You may have the odd bad night every now and then but remind yourself that you have more good nights than bad now.
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Kristi, I now get excited about sleep as well, it's better than being negative about it. I have a Resmed CPAP but I would check with Respironics, my DME and Sleep Dr allow me to adjust the ramp, hunidifier and ERP setting myself, I don't touch the pressure settings, I'm satisfied with what I'm on and wouldn't know how to anyway.
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Permalink Reply by Mary Z on
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As I understand it while the machine is in ramp it will not respond to apneas, but remain at a constant pressure. Perhaps this is why they didn't enable it, unless I'm just wrong.
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Mary,
You're right. When the ramp is on it won't respond to apneas, but the RT was willing to set it for me to use in the middle of the night when I wake up either taking the mask off or to go to the bathroom. I had been having problems being able to put the mask on and go back to sleep. She looked through the settings but couldn't find where to enable the ramp, so she told me she didn't think the machine had that feature. The "instruction manual" says it does have it. Either way I'll have to wait until the next time I see her to do anything about it.
Mary Z said:As I understand it while the machine is in ramp it will not respond to apneas, but remain at a constant pressure. Perhaps this is why they didn't enable it, unless I'm just wrong.
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The purpose of ramp, or at least that's my understanding is to ease you into a correct pressure. Mine is set at 12 but if I had to start at 12, I'm not sure I could get to sleep. It is set to ramp for 20 minutes. Strangely, I can get up in the middle of the night and then come back, put my mask back on, and 12 is fine. My cpap starts at 12 but you press a button and it ramps. Every so often, I forget to hit the button before I put the mask on and I feel like my nose is being blown asunder. I can't believe that anyone, at least on a state of the art cpap/bipap would exclude ramp.
Mary Z said:As I understand it while the machine is in ramp it will not respond to apneas, but remain at a constant pressure. Perhaps this is why they didn't enable it, unless I'm just wrong.
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Lynn is right, also you are probably not going to get many apnea's in the first 20-30 mins of sleep whether it's when you first go to sleep or if you wake up and go back to sleep as you are only in your first phase of sleep which is light sleep not REM sleep.
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