I still feel TERRIBLE on my CPAP - Scared it's killing me.

[Jimmycrackhorn]

... or causing brain damage or dementia. Even on nights when the AHI is good, below 2, I still wake up feeling like death. My head, right now as I write this, feels tight, my eyes hurt and feel heavy, my head feels just sick - tight, like a feeling that it's not getting the air it needs.

Every single night it's like this. I actually figured out how to set the machine, remstar pro, to Auto-Trial. So it's SUPPOSED to be auto adjusting to that the doctor told me, between 10 and 16. So I THINK I'm getting the right air settings. I can post the sleepyhead data but I went thru this song and dance before where even a sleep tech told me, as well as members of this group, that my settings were fine and i was getting good readings. I'll be happy to link up the old thread.

But yet if I wake up in the middle of the night such happens at least 2 times a night, my head can quickly feel like garbage. If I open my eyes, even for a few minutes, I can get this oppressively unpleasant feeling in my eyes of tiredness that actually makes it harder to fall back asleep.

In the mornings I'm still tired and my head feels like it suffocated most of the night.

I have tried different nasal masks. I have tried different face masks.

What's going on? I mean, are there just some people who CPAP makes worse? Before CPAP at least it was a gamble. I'd get 3 or 4 days a week where i didn't feel horrible and I felt good. I'd have to spend a lot extras time in bed to feel normal on some days.

Now, with CPAP, for 3 years, my life is RUINED. I have almost NO DAYS where I feel good and even on the days where I manage to get a few hours of feeling Ok it involves either a lot of meditation, for like 2 or more hours, or I literally have to drink a few beers, fall asleep and wake up later feeling a crappy beer hang over but for some reason I feel like I actually got rested, even without the mask on. I know all about how alcohol is supposed to negativity effect sleep so I don't need the lecture please and thanks. I'm living my life in SURVIVAL MODE trying to not slowly DIE, have a stroke, or get dementia which ever single day on this CPAP feels like it's bringing me closer to.

I've literally started telling my mom to message me ever day and check in on me. Some days I've been so oppressively tired that my blood pressure shoots up just from trying to do normal activity. I literally think this CPAP machine is killing me slowly. I've developed a cool. Feeling on my forehead some days that i looked up and could be associated with stroke. But it's the internet. Anytime you look something up you get the worst case scenario.

What else? Every time I put the mask on, and start to relax, i get tickling feelings in either one nostril or the other which makes me take the mask off and try to blow it out of my nose. That can't be healthy doing that every night of my life.. is there AT LEAST a solution to stop my nose from doing this? I've trimmed my hair from my nose, plucked it with tweezers, used one if those trimmers you stick in your nose. Still happens.

I keep trying to be optimistic. Like with these new settings and the Auto-Trial setting and letting the machine find the right titration I was hopeful. But again, here I am at 5:45am feeling like garbage, and not knowing what to do.

I am in dire need of help. I've been to different sleep doctors. They don't tell me anything that's helpful. I'm trying everything they say and everything I know. I'm even doubtful anyone here will be able to help. I'm convinced I'm a rare case and for some reason my body just doesn't work with CPAP. The recent doc said 10-16 setting and to take Klonopin before bed. That's the only thing I'm NOT DOING. I'm not keen on getting addicted to Benzos.

I may have a deviated septum from when I was little but I can breathe through my nose fine. I haven't done extensive time on full face masks because the times i have tried them, same thing. I wake up feeling like death.

I am spending my life in bed 50-60% of it. This is no way to live.

Help. I'm literally praying for a miracle. I feel like I'm caught between a rock and a hard place. Sleep with the CPAP and get more sick, or smell without it and who knows what damage I'm doing to myself? Lose lose. O. Would like to change this to win-win. I'm just very VERY low on hope at this point.

[Jimmycrackhorn]

My humidity is set on 3. That's the max in this machine. I Then there's the heated hose knob I keep at 2. Another problem is the humidifier tank running out of water if I try to turn up the hose setting one or two notches.

I don't know what to do. This is horrible.

[reolhlains]

Dude - I'm going to defer to the people that know better - I have no idea what is going on.
However, I want to let you know i read your post and I feel for you dude - I hope it gets sorted out asap - sounds like an absolute nightmare.
Good luck man,

[Jimmycrackhorn]

Dude - I'm going to defer to the people that know better - I have no idea what is going on.
However, I want to let you know i read your post and I feel for you dude - I hope it gets sorted out asap - sounds like an absolute nightmare.
Good luck man,

Thanks.

I'm going to go buy a card reader today and post the last few nights of data.

[Janknitz]

My guess is that your head feels like that because of the humidity. It may be set too high for you, or too low and causing a lot of sinus congestion. You'll have to experiment and see. Try turning it DOWN one notch and see how you feel. Remember to make no more than one change at a time, and give it a few nights to see if it's really helping. But if you feel worse, go the other way (turning it up or down).

How tight is the mask? Maybe you are cranking it too tight and the pressure is part of the problem. It certainly sounds like your forehead issue may be caused by that. There are mask fitting tips in my signature for FF masks and nasal pillows.

Sleepyhead readings will help us see what's going on. I'm suspecting you are mouth breathing which is a problem even in a full face mask.

[chunkyfrog]

Stop trying to diagnose yourself based on wild speculation you find on the internet.
See a doctor about treating your anxiety.

[LSAT]

Stop trying to diagnose yourself based on wild speculation you find on the internet.
See a doctor about treating your anxiety.

+1

[Tformhals]

Stop trying to diagnose yourself based on wild speculation you find on the internet.
See a doctor about treating your anxiety.

It doesn't seem like wild speculation to the OP. He is grasping for anything that might make sense to why he feels the way he does. It's hard to admit that your own mind could be making you feel that way. Go to the doctor and get some help for your anxiety. take the benzodiazepines you were prescribed until you get it under control.

[kteague]

Maybe posting your data will give someone a clue if there are any apparent treatment issues. I can't begin to KNOW, but I can talk some things through in hopes of stimulating ideas. Sometimes a springboard is all we need. When I read Janknitz's post about masks I remembered how awful I felt when I tried to use masks that blocked my sinuses where the mask rested on my cheek at the outer edge of the bridge of my nose. Have you tried a mask that has no footprint on the upper face? If you must have a full face mask have you tried one of the hybrids? Now, this is a long shot, but if you feel most of your issues in areas affected by sinuses, just maybe an oral mask could help with that. I know they are not the first option due to potential dental issues, but I knew someone who used one for years and it was her preferred mask. If your upper teeth are your natural teeth and and you can tolerate it and can keep your mouth closed, the Tap Pap nasal pillows mask is the most freeing mask I've ever used. I'm not trying to make choices for you, just hoping you'll see that there may still be options for you.

Has your doctor done any sleep studies on you while using your machine at its prescribed pressure all night? Seems that would have good potential for clarifying some things. Good luck at sorting through this. I was once at a point where I thought the treatment was going to literally kill me. I was a basket case - afraid to sleep with it, afraid to sleep without it. I am the farthest thing from an anxious person by nature, but the years of sleep deprivation had taken a toll on my nerves. I hate to think what condition I would have been in if I had been already anxiety prone. Issues were resolved and for many years now it has been so mundane I seldom look at my data these days. Hope you can get there in the near future.

[owleyes]

Have you tried lowering your humidity? I posted recently that I accidentally went all night with an empty chamber, and guess what? I got the best AHI reading since I started! I'm now using the machine with the humidity off. Last night my AHI was .5 another record. I assumed the highest humidity was right, because I always feel so thirsty, but apparently that doesn't necessarily mean it's best for your sleep.

Good luck.

[robysue]

... or causing brain damage or dementia. Even on nights when the AHI is good, below 2, I still wake up feeling like death. My head, right now as I write this, feels tight, my eyes hurt and feel heavy, my head feels just sick - tight, like a feeling that it's not getting the air it needs.

What are your machine's settings? In addition to the pressure settings, are you using Flex? Are you using a heated hose? What's the humidifier set to?

Every single night it's like this. I actually figured out how to set the machine, remstar pro, to Auto-Trial. So it's SUPPOSED to be auto adjusting to that the doctor told me, between 10 and 16. So I THINK I'm getting the right air settings. I can post the sleepyhead data but I went thru this song and dance before where even a sleep tech told me, as well as members of this group, that my settings were fine and i was getting good readings. I'll be happy to link up the old thread.

How often have you been changing the settings? How many days do you try to make a particular setting work before you change it?

And when you say you THINK you are getting the right air settings, that implies that you are not sure if you've set the machine correctly.

But yet if I wake up in the middle of the night such happens at least 2 times a night, my head can quickly feel like garbage. If I open my eyes, even for a few minutes, I can get this oppressively unpleasant feeling in my eyes of tiredness that actually makes it harder to fall back asleep.

This sounds as much like an anxiety attack as anything else: You wake up and you EXPECT things to go down hill as soon as you open your eyes. So they do.

From a practical point of view: It sounds like you may have the humidifier or heated hose set too high. Or too low. It also sounds like you might have a leak blowing into your eyes. Or it could be the exhaust vent flow is bouncing off your bedcovers and back into your eyes.

In the mornings I'm still tired and my head feels like it suffocated most of the night.

Please explain what you mean by your head feels like it suffocated most of the night. Do you mean that you are having a hard time inhaling comfortably? Or do you mean that you are having a hard time exhaling comfortably? Or do you mean you wake up with a headache?

I have tried different nasal masks. I have tried different face masks.

We need to know which masks you've tried. It would also help us help you if we knew what you didn't like about the masks. Uncomfortable? Too prone to leaks? Just couldn't keep the mouth closed with a nasal mask?

What's going on? I mean, are there just some people who CPAP makes worse? Before CPAP at least it was a gamble. I'd get 3 or 4 days a week where i didn't feel horrible and I felt good. I'd have to spend a lot extras time in bed to feel normal on some days.

It takes some of us a lot longer to learn how to sleep well with the machine. I had an awful first year of PAPing. And felt about 1000 times worse with CPAP than without for the first 4 months or so of PAPing. It was only after I managed to get a whole collection of medical issues that intersect around my sleep under control that I started to feel better.

Now, with CPAP, for 3 years, my life is RUINED. I have almost NO DAYS where I feel good and even on the days where I manage to get a few hours of feeling Ok it involves either a lot of meditation, for like 2 or more hours, or I literally have to drink a few beers, fall asleep and wake up later feeling a crappy beer hang over but for some reason I feel like I actually got rested, even without the mask on.

How often do you sleep with the mask on ALL NIGHT LONG? Five or six days a week? Two or three times a week? Once a week? Almost never?

How often do you sleep with the mask on for part of the night, but then take it off during the night and go back to sleep without the mask?

How bad is your untreated OSA?

even on the days where I manage to get a few hours of feeling Ok it involves either a lot of meditation, for like 2 or more hours, or I literally have to drink a few beers, fall asleep and wake up later feeling a crappy beer hang over but for some reason I feel like I actually got rested, even without the mask on. I know all about how alcohol is supposed to negativity effect sleep so I don't need the lecture please and thanks.

Meditation is a positive way to handle the stress and anxiety you are dealing with. Beer is not.

You say you know "all about how alcohol is supposed to negativity effect sleep" but you don't think that really applies to you, do you?

I'm living my life in SURVIVAL MODE trying to not slowly DIE, have a stroke, or get dementia which ever single day on this CPAP feels like it's bringing me closer to.

What other health issues beside OSA/CPAP do you have going on? It's clear that you've got some major issues with anxiety and you ought to mention that to your PCP.

I've literally started telling my mom to message me ever day and check in on me. Some days I've been so oppressively tired that my blood pressure shoots up just from trying to do normal activity.

Do you have hard evidence that your blood pressure shoots up from daily activity? If so, you need to go to your PCP and start getting treated for high blood pressure.

I literally think this CPAP machine is killing me slowly. I've developed a cool. Feeling on my forehead some days that i looked up and could be associated with stroke. But it's the internet. Anytime you look something up you get the worst case scenario.

You are making yourself sick through worrying about things like a stroke. You are also making yourself sick worrying about the damn xPAP machine "killing you". You are also trying to blame all your problems on the PAP. So I'll ask the obvious question: Have you come here to rant and get our permission to quit? Or do you want to figure out a way to make CPAP work for you?

What else? Every time I put the mask on, and start to relax, i get tickling feelings in either one nostril or the other which makes me take the mask off and try to blow it out of my nose. That can't be healthy doing that every night of my life.. is there AT LEAST a solution to stop my nose from doing this? I've trimmed my hair from my nose, plucked it with tweezers, used one if those trimmers you stick in your nose. Still happens.

This is a common sensory stimulus that if you didn't have the mask on you wouldn't even be aware of it. In our normal breathing, there's a thing called the nasal cycle: At any given time, most of our breathing is through one of our two nostrils and the other one is resting. The dominant nostril switches several times a day and it also switches periodically at night. Most of the time we're not even aware of it. Prior to CPAP, the only time I was aware of this was when I had a bad head cold and kept having to turn over at night because the bottom nostril would get so congested it would hurt.

Once you put the mask on, you are paying a lot more attention to your breathing than you do before you put the mask on. So you notice all kinds of things that are normal, but that you are unaware of when you are not paying attention to your breathing. And as soon as you start thinking about your breathing and the tickle in the nostril and worrying that it's a nose hair and whether you should or should not need to blow your nose, well, any chance of relaxing goes right out the window and you can't fall asleep. So how often do you simply take the mask off (to fix the "nose tickle" problem) and then sleep without the CPAP? Almost every night?

I keep trying to be optimistic. Like with these new settings and the Auto-Trial setting and letting the machine find the right titration I was hopeful. But again, here I am at 5:45am feeling like garbage, and not knowing what to do.

The first thing you need to do is to train yourself to not get so worried and worked up about things. Yes, I know you don't want to hear that. But you are stressing out over things in a way that is not healthy. When you find yourself unable to get back to sleep at 5:45am, sometimes the best thing is to just get up and start your day---even though you feel lousy. It may make it easier to fall asleep the next night and to stay asleep the next night.

I am in dire need of help. I've been to different sleep doctors. They don't tell me anything that's helpful. I'm trying everything they say and everything I know. I'm even doubtful anyone here will be able to help. I'm convinced I'm a rare case and for some reason my body just doesn't work with CPAP. The recent doc said 10-16 setting and to take Klonopin before bed. That's the only thing I'm NOT DOING. I'm not keen on getting addicted to Benzos.

You've convinced yourself that CPAP just won't work for your body. Do you really want our help? Or do you want to just throw the CPAP away and you're asking for our permission to do that?

Here's the thing: For CPAP to work, you have to actually sleep with it all night long, every single night. And we don't know that you've been able to do that even though you've been trying to PAP for three years.

And here's another thing: CPAP fixes obstructive sleep apnea. CPAP does not fix any other health problem. And in particular, CPAP does not fix bad sleep if the bad sleep is caused by things in addition to OSA, because all CPAP fixes is obstructive sleep apnea.

So---what does your overall sleep pattern look like these days? When do you typically go to bed? How long does it take you to get to sleep? How often do you wake up? When do you typically wake up for the day?

And: When would you like to get up every day, including weekends? When would you like to go to bed every day, including the weekends?

I may have a deviated septum from when I was little but I can breathe through my nose fine. I haven't done extensive time on full face masks because the times i have tried them, same thing. I wake up feeling like death.

Which masks have you tried? What do the leaks look like when you use a nasal mask? And have you considered a nasal pillows mask?

I am spending my life in bed 50-60% of it. This is no way to live.

No, it's no way to live. But only you can make the decision to do the hard work you need to do to make this crazy therapy work for you. Are you willing to clean up the sleep hygiene? Are you willing to cut back on the beer if that's what it takes? Are you willing to to keep a sleep log for two weeks to find out just how bad your sleep really is? Are you willing to keep track of the settings on your machine? Are you willing to make one change at a time, use the new settings for a week or so before making another change? And keep track of what gets better and what gets worse with each change? Are you willing to learn how to use SleepyHead to see what's going on apnea-wise at night?

Help. I'm literally praying for a miracle. I feel like I'm caught between a rock and a hard place. Sleep with the CPAP and get more sick, or smell without it and who knows what damage I'm doing to myself? Lose lose. O. Would like to change this to win-win. I'm just very VERY low on hope at this point.

I don't mean to burst your bubble, but there is no miracle. You have to make some hard decisions: Do you want to work hard at figuring out how to teach yourself to sleep with the CPAP? Or do you want to ditch the CPAP and go back to sleeping with your untreated OSA for the next several decades until you really do die of a stroke or congestive heart failure or some other OSA-related health problem.

If you want to work hard on making CPAP work for you, here's my best advice:

1) Answer the questions people ask here with as much detail as you can provide.

2) Do your best to forget about the past negative experiences and start fresh. That includes changing your attitude. As hard as it is, you need to remind yourself that if you allow the CPAP to do its job, you won't have tons of apneas when you are asleep. But you also need to do your job, and your job is learning how to not stress out to the point that you make yourself sick just thinking about the CPAP machine.

3) Try the easy suggestions of turning down the humidifier and/or temperature in the hose. See if that helps.

4) See your primary care doctor and ask about the high blood pressure spikes and the anxiety. If the doc suggests taking an anti-anxiety pill, don't dismiss the idea out of hand just because you don't want to take certain kinds of medicine. Get a thorough physical while you're at it and mention that you are having trouble with the CPAP and that you are not sleeping well. Listen to what your PCP has to say about your sleep problems and what s/he thinks you should do about them. Since you don't want to take benzos, ask about cognitive behavior therapy for insomnia. That can help as much or more than prescription sleeping pills if insomnia is a serious problem.

5) Clean up your sleep hygiene. If you don't know what sleep hygiene is, google it. Or ask and we'll be happy to let you know what it is.

6) Make a commitment to yourself to use the machine all night, every night for at least three months. No cheating by drinking beer and falling asleep without the mask. Keep a sleep log for the entire three months. After you have several weeks of sleep log data, you can start looking for patterns of what helps and what hurts you in terms of getting a better night's sleep. And that will allow you to start working on fixing your sleep problems that are not caused by untreated or under treated OSA. The log should contain the following information:

• Time you went to bed.
• Time you got up in the morning.
• Estimated time it took you to fall asleep.
• Estimated number of wakes. (You don't need to know when they happened, so don't look at the clock)
• Estimated amount of sleep you got for the entire night. (Guess if you don't have a good idea)
• Notes about whether you were able to keep the mask on all night long or not.
• Notes about any discomfort you had during the night
• Rating of how rested or tired you feel when you first get up.

[jagzoo]

+ 1

[nightnight]

FWIW, I do not feel 'great', but I do feel terrible if I do NOT use my equipment. When I have a not so good night, I describe my head/eyes as "foggy" - not clear.

Ask your doctor what they think should be done. Then, if they do not tell you to have another sleep test with your current equipment, I would suggest that you find another doctor.

I was not able to use the CPAP. I ended up getting a BIPAP machine, which seemed to do well for me. Also, it took me about 2 years to get to the point where I could use the machine every night.

Good luck.

[Jimmycrackhorn]

Oh cool. People replied. I'll go over this in the next day and get back to everyone. Thanks for the responses!

[chunkyfrog]

Oh cool. It took you over 3 weeks to check.