Encouragement needed

[dextryn]

Hi everyone, I'm on my 4th day using my CPAP. I've read a lot on here and I know that the transition is hard but I just need to vent and I'm hoping I can get some encouragement.

I'm 36 and I started being so sleepy. I just couldn't get enough sleep no matter what I tried. During the work week I could barely make it through the day and needed to take a nap at lunch almost every day. The weekends I didn't have my kids, I could sleep 12-14 hours and still fall asleep fast at night, it has been absolutely miserable. It's strange that things just suddenly started happening within a 4 month period. Is that typical? For just all of the sudden to get apnea?
I went to the dr and agreed to a sleep study. Turns out I had 63 AHI within an hour. The tech was surprised. She put a mask on me and I had the best sleep in a long time for the remaining 4 hours.
So, waiting for the results, waiting on insurance, waiting on the dr., waiting for the referral....took about 4 weeks but I finally got my machine. I ended up getting a dreamstation and a pico mask. I was so excited....but alas...this has been the hardest 4 days for me...I can't sleep. I feel like I'm suffocating sometimes. I can get to sleep for about an hour or so and my AHI reads at 2.5 which I imagine is pretty great compared to the 63 I was getting, but I'm so...so...tired. Every time I wake up I have a minor panic attack and have to take the mask off, but I'm so exhausted I stay on my back and well, obviously that's the worst position to be in. I also end up feeling congested after I take the mask off and try to put it back on. So I rinse out with some saline squirt bottle and I can sometimes fall asleep for a short time with it again. I can't focus at work, I can hardly get up in the morning. I called about my mask and they told me to give it a week, but I just don't know if I can do it....any suggestions? Any encouragement? I'm feeling pretty defeated.

[WindCpap]

I guarantee after 4 days, you can sleep.

It's Friday, so you are in luck. Take Monday off. You will be less anxious if you don't have to worry about getting up for work.
I presume by your post that you are never sleeping with your mask off. If this is not true, then it is your first mistake. If it is true, you are doing the first thing right.

When you have to take off your mask, go do something else. Read a book, surf the net.... It doesn't matter what position you sleep in; the CPAP will have been titrated for your worst case. Don't read your AHI or anything else on the CPAP during the night. Don't use a sinus rinse right before you go back to bed. You need time to drain after. Instead, stay up for an hour or so so that your nose drains naturally.

By Tuesday, you should be sleeping at least 6 hours a night which is enough to function better than you did before your cpap with 8+ hours.

Finally, avoid taking the mask off unless you have to pee. I have the same issue with mask off/on congestion. Best thing is to keep it on if you can.

For the claustrophobia, breath through your mouth to gain control of your fear. Breathing through your mouth for a short time when you are awake will not lead to mouth breathing while asleep.

[Heart Jumping]

dextryn,

I'm right there with you and only have a few weeks on you. At first it utterly exhausted me. Now it's so much better. I personally believe there are two primary challenges:

1. Adapting (this can take days or weeks).
2. Find the right mask.

Unfortunately when you are first starting it can take some time figuring out which of those two issues are the one causing the biggest problem, and often it will end up being both. So just keep going and keep posting about the issues.

And update your profile ASAP so people know which machine and which mask you are using.

[Pugsy]

What setting are you using on your humidifier?
You may need either more or less moisture in the air going up the nose. So the congestion could be related to humidity. Some people need a lot of added moisture and some people do better with minimal to none added moisture. It's something you will have to figure out..there is no right or wrong setting because it is so individualized.

Also...try this experiment...take your fingers and apply gentle pressure up on the sides of the nose in the nasal bridge area. Gentle pressure ...about the amount the mask puts on the same area.
Keep the fingers there for 3 to 5 minutes...do you get congested with the application of the pressure?
If so, how long does it take to become uncongested after you take your fingers away?

Sometimes the mask itself can cause congestion if a person happens to find that a slight pressure causes congestion. I am this way...sometimes even the weight of my reading glasses will cause nasal congestion.
If you find that you also seem to have more congestion with the pressure from the mask...then you change masks and get one that doesn't apply the pressure to that area of the nose.

What are your pressure settings?
Are you using the ramp feature? If so for how long?

[Okie bipap]

Honestly, it will get better. If you need to get up to go to the bathroom during the night, leave the mask on and just remove the hose from the mask. That way, all you have to do is slip the hose back on at start the machine. This is what I do if I need to get up during the night. Since starting treatment, I have gone from getting up 3 or more times a night to once or not at all.

[stepyou]

Though it is exciting to get you mask and machine, you almost need to hold your excitement back while you get used to the mask so you aren't disappointed that it may take a few weeks. My first 6 or so nights were fine and similar to my sleep previously then the next two were bad. The next couple of nights were better and today after 11 total nights I felt the best I've felt in ages, maybe years! I do still get up in the night for the loo so I either keep my mask on or use it as a brief break before putting it straight back on.

WindCpap's advice of doing something else when you can't sleep with the mask has worked for me. On my worst nights, I took my mask off and read for a short while until I was ready to try again.

I also take diazepam occasionally for panic attacks and had thought I may have needed it to relax me enough to sleep (I was aware that the mask may not be great with my panic attacks). I have been lucky and not had to take any so far. Obviously medication such as that is something for your doctor and not me! I'd maybe practise breathing with your mask during the day to build up a resistance to the claustrophobia. Maybe try a meditation video on YouTube with it on or there is an app Pacifica which I've found useful to focus on my breathing during panic attacks.

The main thing is that you sound as though you want to make it work. Unfortunately it is not always going to instantly make you feel better, but you can do it

[Pesser]

If you like movies, TV, or reading; do it with the machine. At all times of the day and night. After a while you will be paying attention to the movie and book, and not the machine. A little while later it will feel like an old friend. There is nothing more comfortable than my machine now! Even if I didn't have mild apnea, I would still sleep with it.

[dextryn]

Hi Everyone!

Thank you so much for the advice. I will definitely put some, if not all, to use when I try again tonight.
6 hours of sleep would be glorious, I can't wait for that moment.

I presume by your post that you are never sleeping with your mask off. If this is not true, then it is your first mistake.
When you have to take off your mask, go do something else. Read a book, surf the net.... It doesn't matter what position you sleep in; the CPAP will have been titrated for your worst case. Don't read your AHI or anything else on the CPAP during the night. Don't use a sinus rinse right before you go back to bed. You need time to drain after. Instead, stay up for an hour or so so that your nose drains naturally.

So many things I have been doing wrong....so, so many things.

dextryn,
And update your profile ASAP so people know which machine and which mask you are using.

Just did, all updated.

What setting are you using on your humidifier?

I've gone from 1-5 at various times. I tend to like to stay in the 3-4 range. I was wondering if a heated tube might be good for my congestion....what do you think?

Honestly, it will get better. If you need to get up to go to the bathroom during the night, leave the mask on and just remove the hose from the mask

Ok I'll try that as well.

Thanks all again for the help!

[Pugsy]

I don't know if the heated tube will help the congestion or not. If the congestion is related to the humidity then it might because it allows for greater customization and control of both the humidity and the air temp.
It's worth trying for sure.

[IDontSnoreISwear]

I'm pretty much a newbie too (started August 2015). I had terrible congestion when I took the mask off (like, *instant* closing of the nasal airway) until I found my best humidity setting. It's an individual thing -- I had to add more humidity in order for it to work for me. Others need to decrease it. All you can do is use good old-fashioned trial and error with that.

I'd like to second others' suggestions that you read or watch TV with your mask on. It gets you used to having it on your face. Eventually -- and you might find this unbelievable -- you will wake up in the middle of the night one night wondering where your mask is, because it feels so natural!

Oh ... and ... Welcome to Hosehead Central.

[WindCpap]

So many things I have been doing wrong....so, so many things.

The most important part is never taking off your mask to sleep. If you do, your brain will simply wait longer each night for you to take it off before allowing you to sleep. It's the weekend now, so you won't have any excuses about needing to sleep for work. You can't control when you fall asleep, but you can control when the mask is on your face. Eventually, you will fall asleep from exhaustion (try not to sleep during the day if you can avoid it), and if you refuse to sleep without your mask, then you will have to sleep with it. This is the cpap subset of proper sleep hygiene (google it). I promise you that if you follow this one rule, and NEVER break it, you will sleep longer and longer each night.

Don't plan on doing anything that requires concentration tomorrow. I foolishly tried to repair a Dremmel I should have returned under warranty the day after I started CPAP.

[Guest]

I guarantee after 4 days, you can sleep.

What are you a Jedi? Night of day 4. Slept 9 hours. Only woke up once!

[JasonK94Z]

You got the same setup I did a few months ago. The Pico mask sucks! It was complete hell. Uncomfortable, hot air exhaled from my nose was extremely irritating.
I switched to the DreamWear mask, and it was a night and day difference! I slept like the dead every night since then. Throw that Pico mask as far as you can and never look back. Your hell sounds the same as mine was.

If my nose is stuffy before bed, I'll take a hot shower and blow it out.
Humidity, I've found now that it is cold and lower humidity outside, humidity on 4 works good for me. I don't use the heated hose (set at zero), because I like cool air.
Give your humidity settings that you try at least a few days to judge weather you like it or not. Then bump it up or down a point at a time, then a few days, ...

[Michelle-OH]

My first week is just over, and I was so ready to quit until I found the right mask, the 3rd I tried. Personally I use essential oils, sweet orange and lavender, that are both calming for sleep. I also have a 'respiratory' mix which I will use when needed. The guy at my cpap store said he places vicks near his filter and that helps him breathe.
I totally felt like I was suffocating during exhale, learned how to use the reslex on my machine so the pressure reduces during exhale, and that too made a world of difference.
I swear for the last month prior to getting my cpap I was actually sleeping about 3 hrs. at night, ready to fall asleep all day long, but then couldn't sleep when bedtime came. Just yesterday and today I actually feel like a human again. It will get better, persevere!

[tiredandscared]

Hi everyone, I'm on my 4th day using my CPAP. I've read a lot on here and I know that the transition is hard but I just need to vent and I'm hoping I can get some encouragement.

I'm 36 and I started being so sleepy. I just couldn't get enough sleep no matter what I tried. During the work week I could barely make it through the day and needed to take a nap at lunch almost every day. The weekends I didn't have my kids, I could sleep 12-14 hours and still fall asleep fast at night, it has been absolutely miserable. It's strange that things just suddenly started happening within a 4 month period. Is that typical? For just all of the sudden to get apnea?
I went to the dr and agreed to a sleep study. Turns out I had 63 AHI within an hour. The tech was surprised. She put a mask on me and I had the best sleep in a long time for the remaining 4 hours.
So, waiting for the results, waiting on insurance, waiting on the dr., waiting for the referral....took about 4 weeks but I finally got my machine. I ended up getting a dreamstation and a pico mask. I was so excited....but alas...this has been the hardest 4 days for me...I can't sleep. I feel like I'm suffocating sometimes. I can get to sleep for about an hour or so and my AHI reads at 2.5 which I imagine is pretty great compared to the 63 I was getting, but I'm so...so...tired. Every time I wake up I have a minor panic attack and have to take the mask off, but I'm so exhausted I stay on my back and well, obviously that's the worst position to be in. I also end up feeling congested after I take the mask off and try to put it back on. So I rinse out with some saline squirt bottle and I can sometimes fall asleep for a short time with it again. I can't focus at work, I can hardly get up in the morning. I called about my mask and they told me to give it a week, but I just don't know if I can do it....any suggestions? Any encouragement? I'm feeling pretty defeated.

That's pretty fast diagnosis. It took at least 6 months to get to a decent sleep clinic. I wonder how you can go from normal to like very severe sleep apnea. It's crazy. You need to get titrated. In the meantime try to stay off your back.