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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 Mary Z on
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I don't know how many ASV users we have. 25 is a very high pressure and I'm sure would be hard to get used to - I'm glad it was decreased to 12. ASV is state of the art in treating central apnea. It's good you're working with a doctor if you're having problems to increase your chance of success. It is very important that you use the machine- I'm glad you understand the seriousness of sleep apnea. One thing you can do to try and keep the mask on is lightly tape it to your face so that it wakes you up before you get it off. Good Luck, keep us posted.
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Permalink Reply by Lynn on
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Try wearing it for awhile when you are awake. I use a cpap but my brother did use a bipap and he said the hardest part was getting used to the change in pressure but the reason for it is that the lower pressure is high enuff to keep you oxygenated while the higher pressure is for ventilation and pushes air into your lungs forcing you to breath. It is essentially a less invasive form of ventilation that someone who is intubated for surgery or due to injuries. I don't understand the asv part to be honest. So if you wear it for awhile awake, you can consciously learn to breath with the machine. You are probably fighting it, trying to set up your own rhythm of breathing. Then wear it for so long at night. Set an alarm. Make it that long and then take it off and sleep in the recliner. (Are you also using an oxygenator? My brother had to. If so, in the recliner, be sure you are using the oxygenator.) Once that gets easier, increase the time until you are able to sleep all night with the bipap.
Hope that helps.
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Permalink Reply by Kristi Halsey on
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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 RockRpsgt on
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I agree that you should try wearing it a little more while your awake. Try holding your breath and swallowing to mimmick events. This will cause the pressures to fluctuate.
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Permalink Reply by Terry Vella on
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Kristi, Does your machine have a Ramp feature, I set mine at 20mins but can go up to 30mins so it runs at my lowest level for 20mins. It won't help your taking the mask off but may help when you wake up and want to get back to sleep. Also have you spoken to your Sleep Dr about it?
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The machine has a ramp feature, but it is not set up so I can use it. That is a good idea though. I hadn't thought about asking my doctor to have it turned on to help me get back to sleep in the middle of the night. I was initially told that the ramp wouldn't work for me b/c of the central apnea, but maybe they would be willing to try it if it would help me use the machine more.
One of the frustrating things about this whole thing is that I have never seen or spoken with my sleep Dr. I had the sleep study done, the prescription for the machine was called into a durable medical equip. company and they are the only ones I have spoken with. My contact at the DME has been very nice, but without going into a very long explanation I'll just say it has not been a smooth process. The two times I have seen her to have the machine adjusted I have been charged the full amount for a doctor appt. yet I have never seen the man. I have an appt. with her mid-Jan. and will ask about using the ramp feature. Thanks for the advice and forgive me for ranting. This has been a extremely frustrating experience for me.
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Permalink Reply by Bill Love on
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I had very similar situation when I first started (waking up with the mask off and not remembering removing it). The biggest problem for me was the leaks that occurred when the pressures went up and they kept waking me up and preventing me from going back to sleep. I was ready to give up on the whole issue and just let happen what was going to happen. Luckily I finally found a mask configuration that is working well for me. I am using the Mirage FX mask and I got an anti-leak strap from pad-a-cheek (just google them) that has turned the situation around. I am now getting 6-7 continuous sleep hours every night and the pressure problems have been eliminated. Hope you get some relief soon, and try the anti leak strap (about $15) - it really helped me. Just don't give up - you need the therapy and without it, you will almost surely have even more serious health problems down the line.
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You're situation sounds very similar to mine. Not to be negative but its took me 6-12 months to adjust to the ASV. Its very much a love hate relationship. I still find it annoying but couldn't sleep with out it and probably wouldn't be alive without it. I was initially overwhelmed by the pressure but when my doctor cut it back I felt I wasn't getting enough air. I very gradually had it increased back up in small increments to the extent its now at the original setting. I had a weird episode at work once and was afraid I had a stroke but I think my brain was shutting down b/c I was so sleep deprived and am scared to have that happen again. I guess I'm just writing to tell you taht its not easy but its definitely possible to adjust. If I can do it anyone can! A small dose of Ambien is also helpful to be able to fall asleep faster and ignore the machine!
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Thank you for the encouragement, Bill! I haven't had too much trouble with leaking, but will check into the product you mentioned, just in case I need it in the future.
Bill Love said:I had very similar situation when I first started (waking up with the mask off and not remembering removing it). The biggest problem for me was the leaks that occurred when the pressures went up and they kept waking me up and preventing me from going back to sleep. I was ready to give up on the whole issue and just let happen what was going to happen. Luckily I finally found a mask configuration that is working well for me. I am using the Mirage FX mask and I got an anti-leak strap from pad-a-cheek (just google them) that has turned the situation around. I am now getting 6-7 continuous sleep hours every night and the pressure problems have been eliminated. Hope you get some relief soon, and try the anti leak strap (about $15) - it really helped me. Just don't give up - you need the therapy and without it, you will almost surely have even more serious health problems down the line.
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Kristi, I have centrals and obstructive and use a Resmed Autoset on that I can change the ramp settings myself you may want to have a look at it more yourself. I'm in Australia and our Sleep Drs and insurance works different to yours but I would definitely try to get more out of wko you see.
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Kathy,
Thank you for taking the time to reply to my post. I guess I need to be more patient, since I've only had the machine for 6 weeks. I just had such high expectations of using it and feeling so much better and that hasn't happened, if possible I'm more tired from messing around with the machine in the middle of the night and constantly being awakened. I'm not sure I could ever adjust to the original high setting of 25, but maybe I can eventually work my way back up to 16 or 18, if it's needed. My dad has been suggesting I get a short-term prescription sleep-aid for the reason you stated. I've been hesitant, but maybe I just need to try it. I think I'm at the point where I will try almost anything. Thank you for your advice. Reading the length of time it took you to adjust helps me to calm down and have more realistic expectations.
Kathy Muckinhaupt said:You're situation sounds very similar to mine. Not to be negative but its took me 6-12 months to adjust to the ASV. Its very much a love hate relationship. I still find it annoying but couldn't sleep with out it and probably wouldn't be alive without it. I was initially overwhelmed by the pressure but when my doctor cut it back I felt I wasn't getting enough air. I very gradually had it increased back up in small increments to the extent its now at the original setting. I had a weird episode at work once and was afraid I had a stroke but I think my brain was shutting down b/c I was so sleep deprived and am scared to have that happen again. I guess I'm just writing to tell you taht its not easy but its definitely possible to adjust. If I can do it anyone can! A small dose of Ambien is also helpful to be able to fall asleep faster and ignore the machine!
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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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