I'm so glad to have found this forum. I've done quite a bit of reading during the past couple of weeks. During that time, I've also been trying to get used to using a cpap machine. I am so frustrated, scared, worried, etc. In June, I had to go to the E.R. for severe chest pain. My EKG was abnormal so I was admitted. After numerous tests, it was determined my heart was okay, though my doctor did tell me there were definite changes since my last EKG five years ago. The cardiologist suggested a sleep study. I had done a sleep study five years ago ... found to have mild apnea, but only bad when on my back. The doctor determined I didn't need a cpap at that time, but should train myself to sleep on my sides. I did that and have done okay until the past few months when I have again started waking up choking, panicky, etc. I had another sleep study last month and the doctor prescribed a cpap machine for me. According to the tech, I only had hypopneas this time. I want to follow my doctor's instructions and wear the mask, especially after the cardiologist talked to me about the importance of my heart health and the dangers of poor oxygenation due to obstruction during sleep. My problem is that I am extremely claustrophobic. I am able to talk myself into falling asleep with the mask on, but during the night (usually after only an hour and a half or two), I wake up panicky and yank the mask off. While trying the different masks on at my sleep study, we determined a nasal mask might be the best to use because my nose is very petite and my nostrils are tiny. I tried the nasal pillows, but my nose couldn't handle the air pressure the machine was shooting through there. The tech agreed I probably couldn't use those, because I had to open my mouth about every three breaths. I woke up numerous times through the sleep study, pulling the mask off a couple of times, feeling panicky, heart racing, needing the bathroom light turned on, etc. I felt like such an idiot!!! After a week of trying to get used to it, I called my doctor's office to ask for suggestions. They advised me to call the company where I got my machine and they told me to come in that day and try some other masks. I am now using the hybrid mask, but I'm doing the same thing ... waking up panicky and yanking it off my face. I've even tried taking two Benadryl at bed time to help, but I still wake up panicky. I want to be healthy. I don't want to damage my heart. but I don't know what else to do. I am frustrated beyond belief, wondering if there's hope for me. My setting is only at 8 which I think is on the low side, so I'm wondering if I really even need the machine. I would love to hear suggestions or advice from others who have been through this. Thanks so much for this forum!
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Newbie here ... Please help! - PANICKY during night
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Newbie here ... Please help! - PANICKY during night
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Welcome to the forum.
Take comfort in the fact that you're not alone. Many people have claustrophobia in varying degrees.
Your profile shows that you have the REMstar Pro 2, like the one in my profile. If that's the one you have, it's a data-capable machine and you can get the Encore Viewer software and card reader to monitor your therapy. You would be able to see any nightly progression of events that might lead up to your taking the mask off.
One thing that some people do to get used to this therapy is to wear their mask while they're watching television (with or without the machine). Having a mask that's the wrong size, too tight or various other things including having the wrong pressure can make for disturbing sleep.
Are you using the C-Flex settings on your machine?
Do you know how to get into the Setup menu on your machine to check the settings?
Den
Take comfort in the fact that you're not alone. Many people have claustrophobia in varying degrees.
Your profile shows that you have the REMstar Pro 2, like the one in my profile. If that's the one you have, it's a data-capable machine and you can get the Encore Viewer software and card reader to monitor your therapy. You would be able to see any nightly progression of events that might lead up to your taking the mask off.
One thing that some people do to get used to this therapy is to wear their mask while they're watching television (with or without the machine). Having a mask that's the wrong size, too tight or various other things including having the wrong pressure can make for disturbing sleep.
Are you using the C-Flex settings on your machine?
Do you know how to get into the Setup menu on your machine to check the settings?
Den
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
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sleepycarol
- Posts: 2461
- Joined: Thu Aug 30, 2007 7:25 pm
- Location: Show-Me State
- Contact:
What you are feeling is not that uncommon.
You are having to get used to sleeping in a whole new way. It is unusual if one doesn't experience many of the same things you are.
Please check under the yellow light bulb and red question mark for additional info. Very useful information there.
The mask, for most of us, is the key. Many of us have had to try multiple mask before finding the "one" that is the most desirable. Which mask to use is very individual. I may love a certain mask and others absolutely hate it and vice versa.
Some suggestions I have might be wearing the mask while watching tv or reading. Have the machine on so that you get used to the air blowing.
At night tell yourself that you will tolerate the mask for a little longer each night -- even if it is only a few minutes more than the night before -- but be consistent and extend the time each night.
Tell yourself you will NOT sleep without the mask on. If you wake get up and do something until you feel that you can get back to sleep with the machine on.
Try pursleep. One of our valued forum members has formulated it and many find it very useful. Google it and you will find it - pursleep.
Try a sleep aide here at the beginning to help you relax and sleep.
Good luck and keep coming back.
You are having to get used to sleeping in a whole new way. It is unusual if one doesn't experience many of the same things you are.
Please check under the yellow light bulb and red question mark for additional info. Very useful information there.
The mask, for most of us, is the key. Many of us have had to try multiple mask before finding the "one" that is the most desirable. Which mask to use is very individual. I may love a certain mask and others absolutely hate it and vice versa.
Some suggestions I have might be wearing the mask while watching tv or reading. Have the machine on so that you get used to the air blowing.
At night tell yourself that you will tolerate the mask for a little longer each night -- even if it is only a few minutes more than the night before -- but be consistent and extend the time each night.
Tell yourself you will NOT sleep without the mask on. If you wake get up and do something until you feel that you can get back to sleep with the machine on.
Try pursleep. One of our valued forum members has formulated it and many find it very useful. Google it and you will find it - pursleep.
Try a sleep aide here at the beginning to help you relax and sleep.
Good luck and keep coming back.
Start Date: 8/30/2007 Pressure 9 - 15
I am not a doctor or other health care professional. Comments reflect my own personal experiences and opinions.
I am not a doctor or other health care professional. Comments reflect my own personal experiences and opinions.
Thanks so much for your reply. I was looking at the pictures on my profile and realized I chose the wrong machine ... I have the REMstar Pro ... not the REMstar Pro 2. I think two hours is the longest I've been able to keep the mask on so far. I did take the machine into the bonus room the other night, sat in the recliner and watched TV, hoping to fall asleep without disturbing my husband. I finally fell asleep around 2 a.m. only to awaken at 3:45 in another panic. I have set the C-Flex setting to 3 on my machine. I know I'm really not crazy, but some times I feel like I might be. I dread bed time.
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The M Series Pro you have is also a data-capable machine.
As Carol said, finding the right mask is the most important component to this therapy. You may still not have the right one. Try to determine what specifically is keeping you from sleeping. Try to keep your focus away from the mask, machine sounds, etc. A C-Flex setting of 3 may be too much relief. I find that a setting of 2 on mine feels more like natural breathing.
Den
As Carol said, finding the right mask is the most important component to this therapy. You may still not have the right one. Try to determine what specifically is keeping you from sleeping. Try to keep your focus away from the mask, machine sounds, etc. A C-Flex setting of 3 may be too much relief. I find that a setting of 2 on mine feels more like natural breathing.
Den
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
Welcome to the forum - you've come to the right place.
Pressure is not necessarily an indicator of the severity of your breathing disturbance. It's the number of apneas and hypopneas per hour (the AHI) that tell us how bad it is, and you oxygenation.
It took some of us many weeks to get used to the therapy and to find out their optimal pressure - don't be discouraged by what's happening now.
If you wake up in a panic, don't lie there fighting the mask. Try to tell yourself something like: "OK, I'm not used to it, it frightens some primitive part of my brain, so I'll take a break now". And then get up and take that break. Go back to be when your relaxed enough to try again. Don't scold yourself for panicking, be kind and comforting, and remind yourself that the machine and mask are here to help you breathe.
You may be responding subconsciously to the strange, plastic smell of the CPAP system. Pursleep (note the spelling) is a system of pleasant smells that helps many of us.
O.
Pressure is not necessarily an indicator of the severity of your breathing disturbance. It's the number of apneas and hypopneas per hour (the AHI) that tell us how bad it is, and you oxygenation.
It took some of us many weeks to get used to the therapy and to find out their optimal pressure - don't be discouraged by what's happening now.
If you wake up in a panic, don't lie there fighting the mask. Try to tell yourself something like: "OK, I'm not used to it, it frightens some primitive part of my brain, so I'll take a break now". And then get up and take that break. Go back to be when your relaxed enough to try again. Don't scold yourself for panicking, be kind and comforting, and remind yourself that the machine and mask are here to help you breathe.
You may be responding subconsciously to the strange, plastic smell of the CPAP system. Pursleep (note the spelling) is a system of pleasant smells that helps many of us.
O.
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| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks. |
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023
SplashMom,
It looks to me that you have gotten some fantastic advice here. Especially from ozij. I don't really have anything practical to add. But I would like to make two observations anyway.
1. Wearing your mask when awake, to get used to it, is a great suggestion. As a general rule, though, only wear your mask for any substantial length of time when it is hooked up to a running machine. That way you don't rebreathe the same air you just exhaled. It's only a problem with some mask designs, but it is still a general caution worth noting, and it is printed in some user's manuals.
2. Don't necessarily blame the mask for your waking up in a panic. It MAY be the mask that is causing the panic, yes. But, then again, it may just be that the mask is the first thing 'out of the ordinary' you are noticing when you wake up panicky, and so it is getting too much of the blame. Your nervous system "knows" that there is something different about your breathing, and until it gets used to it, it may decide on its own that you need to be awakened, and it may be sending panic hormones out to jar you awake because it isn't yet used to what's happening. That's a bit of an oversimplification, but it happens something like that sometimes. Central apneas can cause something similar, too.
As an illustration of how the wrong thing can get blamed: Some people wake up at night and the first thing they notice is that their bladder is a little full, so they make the assumption that was why they woke up. It is more likely that something else woke them up, but they still think of it as 'waking up in order to go to the bathroom.' Similarly, you may not want to be too hasty in blaming the mask every time you wake up in a panic, especially if the mask is something you can fall asleep wearing.
Just my thoughts. And I am wrong more often than right. At least, that's what my wife tells me.
My first week on PAP therapy, I woke up in a panic once or twice every night. But that went away. It hasn't happened to me even once since then.
jnk
It looks to me that you have gotten some fantastic advice here. Especially from ozij. I don't really have anything practical to add. But I would like to make two observations anyway.
1. Wearing your mask when awake, to get used to it, is a great suggestion. As a general rule, though, only wear your mask for any substantial length of time when it is hooked up to a running machine. That way you don't rebreathe the same air you just exhaled. It's only a problem with some mask designs, but it is still a general caution worth noting, and it is printed in some user's manuals.
2. Don't necessarily blame the mask for your waking up in a panic. It MAY be the mask that is causing the panic, yes. But, then again, it may just be that the mask is the first thing 'out of the ordinary' you are noticing when you wake up panicky, and so it is getting too much of the blame. Your nervous system "knows" that there is something different about your breathing, and until it gets used to it, it may decide on its own that you need to be awakened, and it may be sending panic hormones out to jar you awake because it isn't yet used to what's happening. That's a bit of an oversimplification, but it happens something like that sometimes. Central apneas can cause something similar, too.
As an illustration of how the wrong thing can get blamed: Some people wake up at night and the first thing they notice is that their bladder is a little full, so they make the assumption that was why they woke up. It is more likely that something else woke them up, but they still think of it as 'waking up in order to go to the bathroom.' Similarly, you may not want to be too hasty in blaming the mask every time you wake up in a panic, especially if the mask is something you can fall asleep wearing.
Just my thoughts. And I am wrong more often than right. At least, that's what my wife tells me.
My first week on PAP therapy, I woke up in a panic once or twice every night. But that went away. It hasn't happened to me even once since then.
jnk
I think the problem here is the clown that told you the machine wasn't needed.
The Cardiologist nailed it, oxygen in the blood. Machine will keep oxygen up which takes the load off the heart so it can get better. As for the claustrophobia, you will just have to get accustomed to that, in time you will.
They should have given you an autopap, if you are having trouble go back and request that from the doctor. With the auto, you can set a lower pressure when you lay down to sleep and it will increase during the night as needed. However, any time the heart is involved you should check the PSG for the results found there either related to the heart or Central Apnea (CA).
So you should have a copy of your PSG, your doctor can give you a copy of it. Sounds like you are mouth breathing so they gave you the hybrid...
If you are waking up only after a few hours on the machine, can be a couple reasons:
- pressure is not high enough to splint the apnea seen at that time
- or you are having central apnea which is waking you and that machine is not really ideal for treating it
I think you need to obtain the PSG report and read it carefully, you want to know what it says on the report coming from the Sleep lab not your doctors interpretation of it.
An overnight Pulse Oximeter would also tell you if the machine is addressing the events seen.
The Cardiologist nailed it, oxygen in the blood. Machine will keep oxygen up which takes the load off the heart so it can get better. As for the claustrophobia, you will just have to get accustomed to that, in time you will.
They should have given you an autopap, if you are having trouble go back and request that from the doctor. With the auto, you can set a lower pressure when you lay down to sleep and it will increase during the night as needed. However, any time the heart is involved you should check the PSG for the results found there either related to the heart or Central Apnea (CA).
So you should have a copy of your PSG, your doctor can give you a copy of it. Sounds like you are mouth breathing so they gave you the hybrid...
If you are waking up only after a few hours on the machine, can be a couple reasons:
- pressure is not high enough to splint the apnea seen at that time
- or you are having central apnea which is waking you and that machine is not really ideal for treating it
I think you need to obtain the PSG report and read it carefully, you want to know what it says on the report coming from the Sleep lab not your doctors interpretation of it.
An overnight Pulse Oximeter would also tell you if the machine is addressing the events seen.
someday science will catch up to what I'm saying...
-
Guest
Thanks to all for your replies. I wore the mask today while sitting and reading. After a while, I became tired, so I decided to take a nap, mask intact. I changed my c-flex setting to 2 as recommended. I fell asleep shortly after lying down, but woke up in a panic an hour and 15 minutes later. I haven't seen or heard from my doctor since the sleep study. The company they contract with for machines called me and told me what the doctor had ordered and I went by and picked up the equipment. The company (Apria) has been most helpful. I think I will call the doctor's office and request a copy of my report so I'll feel better informed. I will absolutely continue to wear my mask, even if I don't make it through the night. I appreciate the support!
Good Luck, SplashMum!
Have you checked the mechanical things, like making sure the hose isn't getting kinked when you 're asleep, or that the mask vents aren't getting covered up?
Otherwise, I wonder whether you are getting enough pressure. I don't think one night of a sleep study gives a big enough picture of what we do in our sleep - maybe you sometimes need more pressure due to chin position or something.
Well done for practicing wearing the mask during the day. Try to associate it with a really pleasant experience, like beautiful imagery on video, or like the music you love, so the brain learns to associate "mask = relaxing pleasure".
I'm lucky in that I've done a fair bit of snorkeling, so I loved the mask straight away, (good associations of sun dappled water, beautiful fish and coral, golden swaying seaweed,) especially as it meant no jerking awake with a closed throat. No salt water breaking over my head either!
Good luck. Keep us posted.
Di
Have you checked the mechanical things, like making sure the hose isn't getting kinked when you 're asleep, or that the mask vents aren't getting covered up?
Otherwise, I wonder whether you are getting enough pressure. I don't think one night of a sleep study gives a big enough picture of what we do in our sleep - maybe you sometimes need more pressure due to chin position or something.
Well done for practicing wearing the mask during the day. Try to associate it with a really pleasant experience, like beautiful imagery on video, or like the music you love, so the brain learns to associate "mask = relaxing pleasure".
I'm lucky in that I've done a fair bit of snorkeling, so I loved the mask straight away, (good associations of sun dappled water, beautiful fish and coral, golden swaying seaweed,) especially as it meant no jerking awake with a closed throat. No salt water breaking over my head either!
Good luck. Keep us posted.
Di
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| Additional Comments: ozzie heated hose. | ||||
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"I'll get by with a little help from my friends" - The Beatles
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"I'll get by with a little help from my friends" - The Beatles
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deepurpleprincess
- Posts: 49
- Joined: Tue Oct 16, 2007 9:39 pm
- Location: Corvallis MT
Remember, even if you only wear the mask for two hours, that is an improvement over not wearing it at all. Set a goal to keep it on a few minutes more every night until you work up to having it on all night. Some have used a product called pur-sleep http://www.pursleep.com to help them relax, fall asleep and stay asleep. The soothing aroma can be very helpful. Keep at it, it will get better!
I'd call and see about bumping your pressure by 1 cm. Mouth breathing can be related to pressure not being high enough, when you have an apnea you can't breathe so you breathe through the only place you can via your mouth.Anonymous wrote:Thanks to all for your replies. I wore the mask today while sitting and reading. After a while, I became tired, so I decided to take a nap, mask intact. I changed my c-flex setting to 2 as recommended. I fell asleep shortly after lying down, but woke up in a panic an hour and 15 minutes later. I haven't seen or heard from my doctor since the sleep study. The company they contract with for machines called me and told me what the doctor had ordered and I went by and picked up the equipment. The company (Apria) has been most helpful. I think I will call the doctor's office and request a copy of my report so I'll feel better informed. I will absolutely continue to wear my mask, even if I don't make it through the night. I appreciate the support!
If pressure is high enough to prevent the apnea, you continue sleeping and possibly not mouth breathing.
someday science will catch up to what I'm saying...
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