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just starting and having problems
Hi, I'm Chris and I just got my machine on tuesday. The first night I got some sleep but kept waking up. Tonight I got so aggravated after 2 hours I threw the mask off and now I'm writing up my story because I can't get back to sleep. I'll start at the beginning. I did my sleep study back in december and my rating was 25 AHI. I went back in january for the titration study but it was a failure because I never went into rem sleep the whole night. I started with a nasal mask and just couldn't get all the way asleep. I switched to a full mask and fell asleep finally but there wasn't enough time left in the night to get any good readings.
So I got a respironics REMStar Auto A Flex with humidifier with a full face mask. I think it's set at a range of 4-11. The aggravating thing is that the machine keeps changing pressures on me and so I can't fall asleep. At the beginning, it seems like there is a random, brief slight increase in pressure. Then it increases the pressure such that when I breathe in it pressurizes and then the pressure goes down when I breathe out. This makes some sense, except that the pressure often cuts out before I've finished breathing in. Also, it sometimes cuts out in the middle of breathing in, then increases pressure again, then cuts out again. I don't know how anybody can fall asleep with these random pressure changes all the time.
Anyway, I'll call my doctor tomorrow (well, later today now) and see if she can help me out. So far she's been really helpful. I just wanted to get this off my chest now. I want this to work but I'm having some startup problems I guess.
Chris
So I got a respironics REMStar Auto A Flex with humidifier with a full face mask. I think it's set at a range of 4-11. The aggravating thing is that the machine keeps changing pressures on me and so I can't fall asleep. At the beginning, it seems like there is a random, brief slight increase in pressure. Then it increases the pressure such that when I breathe in it pressurizes and then the pressure goes down when I breathe out. This makes some sense, except that the pressure often cuts out before I've finished breathing in. Also, it sometimes cuts out in the middle of breathing in, then increases pressure again, then cuts out again. I don't know how anybody can fall asleep with these random pressure changes all the time.
Anyway, I'll call my doctor tomorrow (well, later today now) and see if she can help me out. So far she's been really helpful. I just wanted to get this off my chest now. I want this to work but I'm having some startup problems I guess.
Chris
Views: 102
Replies to This Discussion
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Permalink Reply by RL on
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Hi Chris,
I'm not sure who is logged in right now, but I know others here will be able to give you some help/support when they see your post. I do not have this variable type of machine yet, but I think what you describe is what it is supposed to do. I'm sure it takes some time to get used to, and if you can relax with it, I think the machine will adapt to you. If it is really uncomfortable, I believe it can be set to one steady pressure for you, but maybe wait for some more suggestions from others, and of course your doctor will be good to consult. If you can't sleep, scan for other discussions on SleepGuide that have similar topics, you may find help there too. Wish I could tell you more but I do not currently have experience with your type of machine. Do hang in there.
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Permalink Reply by Clay Morgan on
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Chris,
I had similar problems. When I first got my cpap, I had trouble sleeping with it, keeping the mask on, "learning" to not roll on my stomach wearing the mask, etc.
More than once, my maks went flying across the bedroom.
I could have easily given up.
The mask took some time to get used to as did the air pressure. It took some time to learn to get the mask adjusted properly to me, and to just get comfortable wearing it - then even more time getting comfortable wearing it wtih my girlfriend around.
But gradually, I started to sleep a little better, a little deeper, a little longer.
Today, it's second nature. I don't even use a ramp up time. I have no overnight bathroom breaks. I sleep good. usually 8-9 hours...occasionally I hit a 10 hour night. It has made an enormous difference, but it did take 2 or 3 weeks of patience in the beginning.
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Permalink Reply by Trish McKenzie on
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I just started my treatment on Tuesday as well, and it's definitely going to take some getting used to. Tuesday night, I slept well for 5 hours and then woke up inhaling a bunch of water, which really freaked me out. I ripped off the mask and threw it on the floor. Last night I tried again, this time with a little less water in the humidifier and a little warmer in the room, and didn't have too many problems. It seems like the pressure was really high at first and it took me a little bit to calm down and not get anxious, but I successfully used my CPAP for 6 hours last night...I'm on a roll! I hope it your doctor is able to help, and I hope it gets better for you! I'm anxious to see results and to start feeling better soon.
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So I talked with my doctor today, and she explained one of the odd things which is that there is an occasional puff of pressure to test what is causing a lack of breathing which makes sense, but she couldn't explain why the pressure is cutting out in the middle of an intake of breath. She suggested I talk to the equipment supplier to see if perhaps it's a defect in the machine. So I'll do that next.
Thanks for your words of support. I want this to work so I can sleep better. The first night I remember dreaming so I must have gone into rem sleep at least once during the night while using the machine which is goodness. Hopefully I can get past this snag soon.
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I need to state something improtant. Do not take this the wrong way, but If you are heavy the pressure of 4 may be way to low for you to start on especially on a full face mask. If you are heavy you have to compensate for the weight that is pushing up on your diaphragm and this often makes you feel like you are not getting enough air on CPAP at low pressures. Some people need 6-8 on an autopap to start with. Your therapist at the home care should be able to trouble shoot this for you. Make sure they do this while you are lying down. Secondly, I think there is something wrong with you machine perhaps. It should not be shutting down in the middle of your breathing regardless of it being an autopap. I have been using autopap therapy with patients for many years. They do have draw backs at first, but over time it can be easier to tolerate at first to assist with acclimating to cpap therapy. Please expect some challanges when first starting. It will be frustrating but worth it if you continue. If your high pressure is only 11 this may also be way to low. You stated that you are not even falling asleep so the pressure should not be going up much at all until you are asleep unless the pressure is too low to begin with as I stated up above. Starting pressures are really improtant on Autopap therapy. Adjustments are easily made as long as your doctor and home care provider are working together well.
Good luck,
Teresa
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Permalink Reply by pittsburgh_leo on
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Hi Chris,
Since I am only 2 months into therapy, I can relate. My first night was 2 hours; second night 2 hours; third night zero. I was convinced that this was not going to work for me. I have almost the same set-up that you have and it is a great machine. The first week I was constantly releasing the pressure. For me it was a matter of just relaxing.
It has gotten much better. In the first 60 days, I have only been home for about a dozen and I wouldn't think of not taking it with me. You will be amazed at what you can adjust to. I am stuck in Atlanta airport and typing this with my laptop resting on my CPAP machine. Good Luck and stay with it.
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Permalink Reply by RockRpsgt on
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I agree with Teresa. Also your provider should know that 4cm of pressure is not enough for a full face mask. Most FFM have asphyxiation safety valves that do not work until the pressure is at laest at 5 or 6cmwp.
Teresa Hoehn said:I need to state something improtant. Do not take this the wrong way, but If you are heavy the pressure of 4 may be way to low for you to start on especially on a full face mask. If you are heavy you have to compensate for the weight that is pushing up on your diaphragm and this often makes you feel like you are not getting enough air on CPAP at low pressures. Some people need 6-8 on an autopap to start with. Your therapist at the home care should be able to trouble shoot this for you. Make sure they do this while you are lying down. Secondly, I think there is something wrong with you machine perhaps. It should not be shutting down in the middle of your breathing regardless of it being an autopap. I have been using autopap therapy with patients for many years. They do have draw backs at first, but over time it can be easier to tolerate at first to assist with acclimating to cpap therapy. Please expect some challanges when first starting. It will be frustrating but worth it if you continue. If your high pressure is only 11 this may also be way to low. You stated that you are not even falling asleep so the pressure should not be going up much at all until you are asleep unless the pressure is too low to begin with as I stated up above. Starting pressures are really improtant on Autopap therapy. Adjustments are easily made as long as your doctor and home care provider are working together well.
Good luck,
Teresa
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So I found my problem.... While looking at the mask I noticed a connector cover was off where I think an oxygen tube hooks up. I firmly replace the cap and the wierd pressure variations problem I had seem to be gone. Breathing with the machine now makes sense. In hindsight I think sometime in the first night I must have dislodged the cap accidentally while adjusting the mask.
I'm now working on 2 problems.. I have air leakage when the pressure goes up. I get woken up in the middle of the night with air blasting in my eyes. Unfortunately they have my machine locked up so I can't set it to max to make sure it fits right in all sleeping positions BEFORE I go to sleep, I have to try to adjust things in the middle of the night when I'm groggy and cranky... Also, the bridge of nose really hurts and is getting rubbed raw. I tried bandaids but that makes the air leakage problem worse.
Well, I'm meeting with the tech today and I'll see what he says... but I'm making progress!
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So I've been using it for a few weeks now with a few nights of frustration, but I think I've got it figured out..... I've just had 3 straight nights of sleeping comfortably using the mask all night. Yay! I went to the doc and she says I'm still having apneas so is upping the pressure. I haven't noticed any improvement of tiredness during the day but I'm hopeful that when the pressure goes up that things will get better. I'll be going to the tech on monday to configure the machine. I'm also going to look at alternative masks. My mask is a respironics comfort gel full mask.
Here's what I've found......
I found that if I clean the cushioning pieces of the mask every day, the plastic seems to be somehow "stickier" and stops leaks better. I siwsh them in some water with just a drop of dish cleaning liquid, and then rinse.
My doc says I have a bit of a roman nose and that the sides drop off quickly. This is why I've been having problems with this mask. It is a bit unforgiving about the bridge of the nose. There's very little gel material at the bridge of the nose so if the mask is just a tad overtight, hard plastic digs right into the bridge of the nose. Also, I compared it to a few other masks last week and there is almost no support on the sides of the nose, so people with narrow noses would seem to get a lot more leaks.
So, on thursday night I fashioned a bracket out of heavy wire that clips onto the mask. It runs around the sides of the mask around the nose, putting a little bit of pressure on the gel material on the sides of the nose. I now have the forehead adjustment set all the way away from my nose, and moderate tension on the lower straps and I have been able to sleep all night with the mask. Sometimes when I roll onto my side I might get a little leak at the nose, but a quick adjustment of the position of the mask or of my head on the pillow is all it takes to get rid of the leak again.
So my nose is finally on the road to recovery.
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Permalink Reply by Mary Z on
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Chris, I'm glad your're finally getting some success with the mask. I just started the FitLife Total Face Mask from Respironics due to the bridge of my nose breaking down. I still long for my Quattro, but maybe after a few months break for my nose
I can use my Quattro, or the Comfort Gel FFM again. I've tried cushioning my nose, cushioning the nose piece where it hits the bridge of my nose, but never a bracket on the outside of the mask, (I even tried a finger splint modified to fit my nose to diffuse the pressure). Would you mind going into a bit more detail about your bracket? I don't think I have a Roman nose, just thin skin prone to breakouts and breaking down.
Thanks for passing on your experience.
Mary Z.
>So, on thursday night I fashioned a bracket out of heavy wire that clips onto the mask. It runs around the sides of the mask around the nose, putting a little bit of pressure on the gel material on the sides of the nose. I now have the forehead adjustment set all the way away from my nose, and moderate tension on the lower straps and I have been able to sleep all night with the mask. Sometimes when I roll onto my side I might get a little leak at the nose, but a quick adjustment of the position of the mask or of my head on the pillow is all it takes to get rid of the leak again.
So my nose is finally on the road to recovery.
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I uploaded some pictures:
http://home.armourarchive.org/members/igelkott/mask/DSC04066.JPG
http://home.armourarchive.org/members/igelkott/mask/DSC04067.JPG
http://home.armourarchive.org/members/igelkott/mask/DSC04068.JPG
http://home.armourarchive.org/members/igelkott/mask/DSC04069.JPG
I got the wire from lowes in the hanging ceiling section. It says it's 12 gauge hanging wire. It took about an hour of slow bending and shaping with pliers. Hangar wire is a little thinner but might also work.
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