first night no so good, feeling cursed

[need_some_sleep]

Had a lot of trouble going to sleep with the mask on. It took over three hours to get to sleep, and I had to reset the ramp every 15 minutes, and even with that I was waking every hour taking the mask off and drinking water to relieve the dryness. How is a heated humidifier not working properly that it contributes to dryness? That is counter intuitive right? A humidifier drying you out? I drank enough water through the day so I didn't think that would be a problem. I was extremely frustrated with the dryness and I was screaming at the top of my lungs and begging to whoever would listen that I need sleep. I know what is meant by sleep deprivation being torture. I've lived it for many years. Mask leaks were minimal, and the fit was ok.
Still, I get the overall sense of dread that my body refuses to accept oxygen so that I will feel rest. I don't know, but I feel like I have been cursed with never ever getting able to feel what true rest is like. I only get teased on occasion. Like.. "here's a couple hours of good feeling, that should hold you for a decade or so". My body is fighting me on this, and it has won every battle to stay fatigued and oxygen starved ever since the start.
I didn't expect a full on reversal on the first night, but I thought that I would at least have a few minutes of good feelings. today, I feel worse with CPAP than I ever did without. I know that there is an adjustment period, but if I have to endure this for months Im going to need a hell of a lot of guidance and encouragement through this and will have to just stick with it, because last night was painful, and I couldn't get comfortable no matter what. Even the blankets and sheets felt like lead aprons. Every sleep position was horrible.

Please just let me know that this will eventually stop.. like in the next hundred years or so.

[BlackSpinner]

later in the day, put the whole thing on and go a watch your favourite tv show or movie. This is to acclimatized your mind to the idea that this thing is safe. You need to watch something that grips you so you are not focused on the equipment.

The dryness: Investigate the humidifier and put it higher.

[Bill44133]

later in the day, put the whole thing on and go a watch your favourite tv show or movie. This is to acclimatized your mind to the idea that this thing is safe. You need to watch something that grips you so you are not focused on the equipment.

The dryness: Investigate the humidifier and put it higher.

The Spinner is correct you are going to have to teach your brain that it is natural thing to wear your mask. It is very frustration I understand, but it is worth all of your effort
it will pay off and you will be glad you did.

Looks like you have the same machine that I have. What are you setting the humidity at? I have been keeping mine set at 4 since the furnace started running. In the summer
I keep it at 3. Make sure you are putting distilled water in the tank.

Keep us posted how you are doing. Good Luck!

[MitzyG]

FYI...the first days, I felt the SAME thing with the dryness etc. Keep going!!! The other thing...try different masks. Unless you have a provider that will let you test, that could get expensive, but I'll tell you that they gave me a Swift FX and I tried the Swift LT and it's even BETTER! The other thing is that I watched the video from the manufacturer and they provided several ideas for fitting the mask. I saw a hose adjustment that I hadn't considered and it was soooo much better. My nose isn't crushed by the hose anymore.

Also, for me, hanging the hose out of the way really really helped alot so that I wasn't feeling like sleeping with a tube. Now it's me and the well fitting mask (note that the mask in the photo isn't the LT...I've tuned up the system since this photo.


Untitled by MitzyDGoose, on Flickr

[need_some_sleep]

I had the humidity set at 4, but it and I could see the air making the water ripple so I know it was blowing across it, so I assume it is working correctly, and yet I had cottonmouth whenever I woke up. I made sure that I use distilled water. I thought a humidifier was supposed to add moisture. Who knew I could be wrong on that count?
I hope this will be the worst of it, because if this is how life is going to be on a daily basis, this type of frustration, I should just accept Ondine's curse, and not go the CPAP therapy route, and just let whatever happens happen. It is so utterly frustrating, especially when I get told by people who don't have this problem to "just get over it". They have no perspective on the matter, so I tell them to have someone smother them a minute at a time 20-30 times per hour while they are sleeping, then they might have a clue. Sleep deprivation is the worst kind of torture, and it is so much worse when you do it to yourself.

[Julie]

Hi - stop resetting the ramp! Turn it off entirely and get used to the air pressure (it will happen quickly I bet) because every time you reset the ramp, you're starting out at a too-low-for-comfort pressure and your body hates it. Counterproductive at best.

[Bill44133]

Hi - stop resetting the ramp! Turn it off entirely and get used to the air pressure (it will happen quickly I bet) because every time you reset the ramp, you're starting out at a too-low-for-comfort pressure and your body hates it. Counterproductive at best.

Read this posting about ramp: viewtopic/t94812/My-RAMP-Horror-Story.html
I hope that this makes sense to you.

[BlackSpinner]

I had the humidity set at 4, but it and I could see the air making the water ripple so I know it was blowing across it, so I assume it is working correctly, and yet I had cottonmouth whenever I woke up. I made sure that I use distilled water. I thought a humidifier was supposed to add moisture. Who knew I could be wrong on that count?
I hope this will be the worst of it, because if this is how life is going to be on a daily basis, this type of frustration, I should just accept Ondine's curse, and not go the CPAP therapy route, and just let whatever happens happen. It is so utterly frustrating, especially when I get told by people who don't have this problem to "just get over it". They have no perspective on the matter, so I tell them to have someone smother them a minute at a time 20-30 times per hour while they are sleeping, then they might have a clue. Sleep deprivation is the worst kind of torture, and it is so much worse when you do it to yourself.

Th humidity level is high for your sinuses but not your mouth. Even with a full face mask, which you have, you need to learn to keep your mouth closed, a chin strap might help.

Think of it like learning to ride a bicycle, you didn't get on it and do the Prix de France the first day. You had training wheels and wobbled all over the parking lot. Some people ride that bike in side a day, others wobble around for weeks.

[need_some_sleep]

that would work, expect that my nose slams shut after a couple hours no matter how much medication I take to keep it open. Think how you would feel if someone poured epoxy into your sinuses, and that would be barely scratching the surface. Its like my body is fighting and fighting to stay fatigued and oxygen starved. Like I said.. it feels like a curse.

[need_some_sleep]

Hi - stop resetting the ramp! Turn it off entirely and get used to the air pressure (it will happen quickly I bet) because every time you reset the ramp, you're starting out at a too-low-for-comfort pressure and your body hates it. Counterproductive at best.

Read this posting about ramp: viewtopic/t94812/My-RAMP-Horror-Story.html
I hope that this makes sense to you.

Yes.. that does make sense.. thanks for that.. I will try that tonight.

[hyperlexis]

I think you need to do the following:

1.) Go to bed only when you are exhausted, dead tired. That may help a lot. Being excited and nervous can keep anyone up. I could barely sleep at all during my sleep study and the first few times using my equipment at home.

2.) Using a tranquilizer or even taking a shot or two, etc., can also be very helpful. Knocking yourself out with the mask on, and sleeping through the night is half the battle.

3.) The dry mouth thing is something to discuss with your doctor. These humidifiers are NOT like the ultrasonic humidifiers sold for a room. They really do not give you a steamy warm sense of humidification in the mask, even when cranked up all the way. They do give a good amount, or so the manufacturers say, but I have never really been able to 'feel' it, like an ultrasonic or a hot water type room humidifier. So your dry mouth may come from medications you are on, nerves, etc. Crank the humidifier up to the max (on "Classic" humidity setting (not sensor humidification), but don't be disappointed if it's just not as humid as you expect. Eventually when you train yourself to sleep with the FFM with your mouth closed, the problem will get better. -- And eventually that should happen.

[Bill44133]

..... I should just accept Ondine's curse, and not go the CPAP therapy route, and just let whatever happens happen.

That is a miserable way to die.. I had AHI of 140 during my sleep study.. Looking back I was really miserable..
I am convinced I was on my way out if I hadn't done something. Was going on long time.

It is to soon in the fight to give up.

[robysue]

Welcome to the forum, need_some_sleep.

You asked:

I know that there is an adjustment period, but if I have to endure this for months Im going to need a hell of a lot of guidance and encouragement through this and will have to just stick with it, because last night was painful, and I couldn't get comfortable no matter what. Even the blankets and sheets felt like lead aprons. Every sleep position was horrible.

Please just let me know that this will eventually stop.. like in the next hundred years or so.

The truth is that there is a real adjustment period. For some of us, it is painful and longer than the docs and DMEs expect it to be. But you can get the guidance and encouragement to keep on masking up through your adjustment period by posting here.

I am am outlier: It took me the better part of year to fully adjust to sleeping with the machine---realistically it takes most people a few weeks to a few months to get fully acclimated to sleeping with the mask on their face. But I had numerous problems in the adjustment stage, most of which can be described as the sensory overload from the machine would wake me up when I went to bed, which triggered major insomnia problems and I felt about 100 times worse during the daytime after starting PAPing than I did before starting PAPing.. But with a lot of help from folks here and a lot of stubborness and unwillingness to just plain quit, I was able to finally make it to the ranks of "reasonably happy PAPer." You might find reading my entry in the Success Stories thread helpful.

Now to comment on some of the things you've said

Had a lot of trouble going to sleep with the mask on. It took over three hours to get to sleep, and I had to reset the ramp every 15 minutes, and even with that I was waking every hour taking the mask off and drinking water to relieve the dryness.

Others have told you about not hitting the ramp button repeatedly. I want to focus on what I think is the bigger problem: Lying in bed for three hours fighting to get to sleep and fighting the machine.

It's important to teach your body that Time to Sleep = Time to Mask Up, but it's also important to get the body to understand that Time in Bed = Time to Sleep. And lying in bed for hours on end fighting to get to sleep can undermine this. But the solution is NOT to just take the mask off and go to sleep without it. Rather you need a strategy for dealing with bedtime and trouble getting to sleep in the first place. Here are some of the things that I had to learn the hard way:

• Maintaining a regular wake up time is important. Regardless of how bad you feel, it's important to get up on time so that your body and mind will start to get sleepy near your desired bedtime.
• No matter how tired and wiped out you are during the day, avoid taking naps. If you must take a nap, put the CPAP on.
• Get all the CPAP-related stuff done well before bedtime so that putting your equipment together doesn't wake you up and add to the stress. In other words, make it possible to just climb in bed, pull the mask on, and start the machine.
• Learn the difference between feeling sleepy and feeling tired or exhausted. It can be almost impossible to get to sleep if you are tired, but not sleepy. Only go to bed if you are genuinely sleepy. I found that I did better if I waited until I felt like I was falling asleep on my feet before going to bed.
• If you are watching the clock when trying to get to sleep, turning the clock around or making it difficult to see from the bed can help a lot.
• If you are NOT asleep within what you think is about 20-30 minutes, get out of bed, go into a different room, and do something quiet, relaxing, and soothing to get your mind off the damn machine. Go back to bed only when you are feeling sleepy enough to try masking up again. Don't stare at the clock while you're out of bed.
• If you find yourself getting less sleepy and more awake when you are lying in bed trying to get to sleep, then go ahead and get up, go into a different room and do something quiet, relaxing, and soothing to get your mind off the damn machine.

If the problem with getting to sleep in a timely fashion continues for more than a week or two OR if you get to the point where you feel as though you simply cannot function in the daytime due to sleep deprivation, call the sleep doc's office and report the problem and tell the receptionist who answers the phone that you need the doctor or nurse to call you back to talk about this problem. The doc or nurse you talk to may suggest taking a prescription sleeping medication for a short period of time. That does help some people get over the initial hump. If you have no problems with the idea of taking prescription sleeping medication for a week or two, it's well worth considering.

and even with that I was waking every hour taking the mask off and drinking water to relieve the dryness. How is a heated humidifier not working properly that it contributes to dryness? That is counter intuitive right? A humidifier drying you out? I drank enough water through the day so I didn't think that would be a problem. I was extremely frustrated with the dryness and I was screaming at the top of my lungs and begging to whoever would listen that I need sleep.

You list your equipment as a Remstar APAP. Do you have a System One with a heated hose? Or are you using a non-heated hose? A heated hose may help. Contact the DME and see if your System One is compatible with the optional heated hose.

Also: What is the humidifier set to? Since dryness seems to be a BIG problem, you should set the humidifier as high as possible. If you are not using the heated hose, you should also consider using "Classic Mode" rather than the default (smart) mode since the Classic Mode effectively puts more moisture in the air instead of trying to eliminate problems with rainout by varying the amount of moisture added to the air.

It's also important to understand that a CPAP humidifier is really designed to keep the nasal passages and upper airway moist. Even with a full face mask, a CPAP humidifier can have trouble trying to oral cavity well moisturized as well as the nasal passages and upper airway. So if you are a dedicated mouth breather, dryness could be a really serious, on-going problem for you. You might find using a Biotene mouthwash right before bedtime might help at least a bit. Biotene is designed to help with dry mouth problems.

I know what is meant by sleep deprivation being torture. I've lived it for many years. Mask leaks were minimal, and the fit was ok.
Still, I get the overall sense of dread that my body refuses to accept oxygen so that I will feel rest. I don't know, but I feel like I have been cursed with never ever getting able to feel what true rest is like. I only get teased on occasion. Like.. "here's a couple hours of good feeling, that should hold you for a decade or so". My body is fighting me on this, and it has won every battle to stay fatigued and oxygen starved ever since the start.

As I said at the beginning: I had a really rough transition to PAPing. I get what you are saying here. The thing is, I think the problem is not that your body is fighting the idea of getting oxygen and fighting to stay fatigued. The body is fighting the idea that it has to sleep with this alien on its face and it is simply being very slow to accept the alien as a friend rather than a foe. And that takes time. There's a poster here who says his/her sleep doc tells new PAPers that it takes a month or so for the body and brain to really accept that the mask is a friend rather than a foe. And until that happens, there's a lot of "I don't want to sleep if it means I have to have this thing on my face" that comes from the body and subconscious mind.

I didn't expect a full on reversal on the first night, but I thought that I would at least have a few minutes of good feelings. today, I feel worse with CPAP than I ever did without. I know that there is an adjustment period, but if I have to endure this for months Im going to need a hell of a lot of guidance and encouragement through this and will have to just stick with it, because last night was painful, and I couldn't get comfortable no matter what. Even the blankets and sheets felt like lead aprons. Every sleep position was horrible.

Some of us do feel worse after starting CPAP. Sometimes it only lasts for a week or so. Sometimes it lasts for a month or so. And then there are the unlucky few (like me) for whom the "I feel worse" period lasts for a very extended period of time.

And the signs that CPAP is finally doing you some good can be extremely subtle. Subtle enough to miss them if you are not looking for them. In my case the first positive sign that PAPing was beginning to do me some good was when I first noticed the phrase "Woke up with no hand and foot pain" appearing in my insomnia log several times a week. This started to occur about 5 months after I started PAPing. And waking up with no hand and foot pain is still the main positive thing that I notice. Others comment that the first sign PAPing was doing them some good was in a reduction in the number of trips to the bathroom each night. Or a decrease in the morning headaches that had been around for years. So it may help to keep some kind of a log where you make a few brief notes each day on how you feel right after you get up and how you feel during the day.

[SleepyBobR]

Your dry mouth is probably caused by sleeping with your mouth open. With a full face mask this won't affect your therapy but it will dry out your mouth regardless of your humidifier setting. Get a chin strap while you learn to keep your mouth shut while asleep.

[purple]

I am opposed to the Ramp because it is counter productive to our having a sense that we are getting enough air. If you turn off the Ramp entirely, then try to put the mask on, then your mind will think, "Gosh I could not never suffocate while this thing is blowing. Of course, when it is not blowing, then you are only back to sleeping without the machine. There is an exception, and that is if you cover the exhaust holes on a full face mask. Sounds like you would have no problem waking up now if you used a nasal mask and taped your mouth closed.

I was so convinced I need the treatment, and I would feel better doing it, that I was willing to put up with a lot of frustration. Others start xPAP looking for a reason to quit. Which are You?