New user woes

Hello everyone,
This is my first post and I am so grateful to have found this forum! Thanks everyone.
I have had 4 nights with my CPAP and I was looking for some reassurance that this will get easier.
All four nights have been very interrupted, and the CPAP has made my sleep worse. The only improvement is that my husband has been able to share a bed with me again for the first time in 18 months, and he says I am not snoring.
This morning I am feeling really down. My nose is sore and the nostrils are swollen and tender. I've got a sore/blister/zit at the base of my nose caused by the mask which is horrible and think I may be getting a couple more around my nostrils. I am getting some sleep, but I have been repeatedly waking myself up by my mouth opening and then a sound like Darth Vadar comes out. Maybe he had OSA and his helmet was the latest Dark Side treatment!! My mouth and throat is getting really dry, and the hose in my bed is just plain weird. I now have a blocked nose - either I'm getting a cold, or an allergy to something - and I had an itchy throat in the night too. Could this be caused by the CPAP?
I feel like such a freak with all the gear on. I have had to sleep with a mouth guard for my teeth grinding for years already, earplugs because I wake at noise easily, and an eye mask to block out light. Now I have CPAP, and worry that the next thing I'll need will be either a chin strap (to keep my mouth closed), or a full nose and mouth mask. Its so crazy that I need all that gear to GO TO SLEEP, which should be the most natural thing in the world right?!!
I read the article on dealing with change and I am definitely swinging between denial (its only mild, I'm just making a fuss, they should have just given me a mandibular splint etc), to anger (I shouldn't have told the doctors, now I can't drive, this will last a lifetime etc) and depression (feeling really unattractive, sorry for myself etc).
Just some other info: I have tried the flexi fit 407 mask for two nights, but that's what gave me the sore so I tried the nasal pillows mask. I was using the medium size, but 5am this morning I changed to the small size which I think fits better, and may help the sore nostrils.
I thought that I'd feel amazing with this treatment - much more rested and energetic. I feel worse than before.
Looking for some reassurance that this is worth it.
Sorry for the big moan
Racandimo

If I had prejudged my future success based on my early times on CPAP, I would have given up. Have had masks that didn't fit, wouldn't seal, made pressure sores, caused congestion - pretty typical for a new user I think. There will be others here with experience with the same mask you use and can give you tips for addressing your issues and being more comfortable.

Right now your sleep is anything but natural. It's not natural to have all this stuff on your face, and it will take a while for your brain to interpret these new sensations as your new normal. But I can tell you, when that good sleep does come, it will soooo worth it!

Hi,

You made the comment that sleep is supposed to be natural, implying that CPAP isn't. Can I ask if you take any vitamins, wear shoes, or use eye glasses? See, those things are not natural either. Vitamins are to compensate for our body needing more of some items that what we get in our food, shoes are to compensate for our feet being covered with skin, and glasses for folks with faulty eyes. CPAP is no more unnatural than any of a zillion other things that we do.

Can I also ask that if you broke your arm, would you get a cast? Most people would have no problem with that. This is a perception thing. When your arm is broken, you are OK with a cast. When your breathing is broken, you should be equally OK with the fix, which for most folks, is a CPAP machine. Nobody said it was overly convenient, but neither is a cast or taking insulin or using eye glasses.

You also seem concerned that you are not yet feeling amazing after 4 days. Please keep in mind that it took you years to get to this point, and your body has adapted to the breathing issues with all kinds of coping mechanisms. Now that you are breathing better with CPAP, your body is going to have to unlearn all of these work-arounds and essentially learn how to sleep all over again. That isn't going to happen in just a few days. It could take months. Just like it isn't reasonable to expect to lose 20 lbs after 4 days on a diet, it isn't reasonable to expect perfect sleep after only 4 days of CPAP. Some people do get that pop right out of the gate, but most of see a gradual improvement over time. It is going to take a little patients.

-john-

Yes, the majority of us can give you reassurance this is all worth it. If you're seeking answers to that question, you will see many have succeeded and many are almost there. If YOU give it a good chance to succeed, then you will too.

There are some very interesting stories on here from new people and the long time CPAP users that are worth checking into if you have the time. My body was literally shutting down from years of lack of sleep and untreated severe OSA. After 2 weeks of treatment, I am just now starting to see the light at the end of the tunnel. I had very fragmented sleep for a very long time before starting therapy, and the first week was more of the same. Only in the last 4-5 days have I seen a great improvement, but that came after I changed some things (changed from my first mask, worked on the new mask to get it to fit better to control leaks, bought some Lansinoh (lanolin) cream to help heal soreness issues and to help with a better seal, meticulously went over sleep habits and made changes there too, etc.) I thank my lucky stars this is a non-invasive method physically, but mentally it can and has been a challenge. Some take to the therapy like a duck to water and there's no struggle with it. The vast majority are going to have some issues along the path. You may need to find out what you need to do to help your progress along. Everyone is unique and what works for some may not work for you. The key is finding your own happy medium.

You are NOT a freak. You have a sleep disorder and a medical doctor determined you need assistance breathing while sleeping - nothing more, nothing less. Your disorder requires equipment to help you. There was obviously a reason you told the doctors you were having problems. Focus on correcting the disorder and that you are doing exactly what is needed for you to function properly.

You've been given some excellent advice so far. The denial and anger phases strike most people adjusting to this therapy. You will need to find ways to cope that work for you.What worked for me was to read all I could about my type of Apnea and educate myself on all the medical terminology, what doctors were saying about the disorder, what to expect for the usage of the machine and mask, what I should do to help me get to sleep better, how to trouble shoot any issues, and what other people had experienced. It took a good month of research on this site to arm myself with all the backup my brain needed to adjust to a whole new way of going to sleep before I even got my machine. With perseverance and persistence, you can overcome and head down the road of feeling better.

I suggest breaking each issue or problem area you are having with your therapy into smaller blocks you can research or ask about individually. Everyone here has the benefit of reading what someone else has done to overcome an issue - it's awesome. There are those who have been at this for years who have more knowledge and experience than we new people do. That's a MAJOR plus when you're feeling so alone during this adjustment period. You are NOT alone and there are many here to support you along the way. The key is to ask specific questions and you'll get some very good tried and true advice on how to fix it, if you're willing to listen.

Welcome to the board! We are/were all new to this at one time. It WILL get better if you keep a positive attitude and don't give up.

Marianne

racandimo wrote: now have a blocked nose - either I'm getting a cold, or an allergy to something - and I had an itchy throat in the night too. Could this be caused by the CPAP?

This could very well be from the cpap machine. The nasal mucosa are rebelling. I don't know what your humidifier setting is but try either more or less moisture and see if that helps. Some people need more added moisture and some people need less. There is no right or wrong because it is all highly individual needs.
Are you even using a humidifier? You don't show it in your profile and some places don't give out humidifiers.
If you aren't using one...then those symptoms you mentioned are indeed related to the lack of added moisture needed by the nasal mucosa.

Dry mouth and sore throat...means air is moving in and out the mouth and as you know that means potential loss of therapy pressure when using a nasal interface only mask.
Unfortunately your S9 Escape machine (shown in your profile) offers nothing in the way of useful data to help you evaluate your potential leaks.. You are in Scotland and I think they do things differently there than here in the US and getting a full data machine may be a lot more difficult.

With the nasal pillow masks the most common mistake people make is that they have the straps way too tight. This mask shouldn't cause anything more than maybe very minor tenderness. Anything more than that then either wrong size nasal pillows or straps too tight.
Can you find something like Lansinoh ointment (used by breast feeding mom's for sore nipples) to use on the sore nostrils?
It does help.

If your sleep is highly fragmented due to fiddling with mask or pain you have zero chance to feel any better. Anything that causes interrupted sleep messes with the normal restorative powers of the needed sleep cycles.
Feeling worse sure isn't the way we want to go but whatever issues cause the fragmented sleep must be eliminated to even have a chance at feeling better. The mask is indeed the hardest part to all this therapy. For some the adjustment to sleep with a plastic thing stuck on our face is just harder. The brain is hyper aware of the least little thing and wakes us up.
It takes time for the brain to learn that the thing stuck on our face is not going away and is actually a good thing.

Don't give up. No matter what problems you are having I can pretty much guarantee that you aren't the first and someone here has had the same problems and worked through them.

Welcome to the forum. Lots of really nice people here who will try to help in any way that they can.

I had the same problem with the sore nostrals. I figured out a simple soluton. Use CHAPSTICK! I use chapstick on my nostrals every night before I use those pillow things & I never had a problem after that!!!!

Hang in there racandimo... My first week was pretty much a bust, trying to get used to this both physically and psychologically. I often threw my mask at the dresser in my sleep Sleep apnea nearly killed me (see my signature below) and so I was determined and committed to this. At first, I slept worse and had paradoxical feelings of feeling good/bad. It took a month or two to really start feeling good. Over time it got better and better as I got used to it, learned, made adjustments, dialed-in my treatment. Now after 6 months I sleep better than someone 10-20 years younger than I, though I still suffer from some daytime grogginess, but I've found some ways to improve that as well. Hang in there. It's worth it to you, your family and dear friends.

Thanks everyone for your replies and reassurance.
John, your comments gave me a lot to think about and you are right, I'll think about CPAP as a stookie (Scottish word for the hard bandage thing they put on your arm when you break it!) to fix my sleep. Yes, patience needed and 4 days in is very early days.
LR23999 - I'll get some chapstick or vaseline on tonight, thanks for that suggestion.
Pugsy - lots of good tips and things to think about. I don't have a humidifier. The nurses said that I could get one if I needed so I'll give them a call tomorrow. Yes, Scotland most of us get our medical help on the National Health Service (NHS), which we pay for through tax, and it means that we don't pay for treatment up front. I have been reading the forum a bit and notice that the machine I have doesn't seem to be liked due to its lack of data. I will ask but think its unlikely they'll have a different model of CPAP machine to give me. I am sure that I had the mask too tight though, and the size of the pillow seems a better fit now.
kteague, MaxDarkside and Marianne - thanks for your supportive words. I'm going to do what you suggest and break down the problems into smaller chunks and address each one.
There is so much to learn about this treatment, and its great to have a place like this to help and people who've been through it. Thanks everyone!

oooh, please don't use vaseline or a petroleum jelly product. It's not good for the mask cushion. Lanolin is much better and you need only apply a very thin film with a q-tip swab. Welcome to the forum!

Suz

Both vaseline and normal old everyday Chapstick are petroleum jelly products and are harmful to the silicone in the mask cushions and nasal pillows.

There are chapstick type products which are petroleum-free or at least have petroleum jelly way down the list of ingredients. Alas, most of these are much more expensive than plain old Chapstick.

Lanolin is ok to use and it's got some of the same texture as vaseline does.

Chapped lips and nostrils have been and continue to be one of the issues that plague me with CPAP therapy. I've learned that keeping myself well hydrated during the day is important. Protecting the lips and nostrils during the day is critical too. (And the cheap stuff works fine then.) It helps to NOT wash the face every single night right before bedtime---particularly if you don't have oily skin. And if you do wash your face, wash it well before bedtime so that it is completely dry by the time you mask up.

And yes, things do eventually get better.

Caution: Chapstick contains petroleum jelly.
Your pillows will last longer if you use another product, like Lansinoh.
I laugh to think of men having to go into a store to get this.
It is made to promote healing for nursing mothers.
It is sold near the baby bottles in Wal Mart, Target, and similar places.

Welcome! Read everything you can here and begin to educate yourself, ask lots of questions and try the suggestions offered. Knowledge is power and once you understand how this therapy works it won't seem as daunting. Good luck and keep us posted.

Get the humidifier. I think you will find the added moisture much more to your liking.
While some people can feel quite comfortable without any added moisture, most people need at least a little and some people need a lot (like me) for the nasal mucosa to not scream bloody murder.

What happens is that the nasal mucosa gets dried out from the added air going into the nasal cavity. Funny thing is that the response happens to be just the opposite of what we might think would happen. Normally we think dried out and we think shrink up but the opposite happens. The mucosa gets dried out and swells up as a response trying to salvage whatever moisture there is available. Very similar to an allergy response to pollens in the air.

Might also add some saline spray at bedtime to help add some hydration. You can do that now while waiting for your humidifier.

I had heard about Scotland's way of doing things with the non data machines.
I don't know what they do when people have problems but if they don't do much (or to your satisfaction) and you still feel pretty horrible after a suitable adjustment period then you can always consider purchasing a machine that would offer you data to see if things are at least optimal. Cross that bridge later if it ends up needing to be crossed. There are ways to get machines that offer full data. Online purchases and/or used machines are always an option. We can find ways to get around things. We can worry about that later. Let's hope that once you get the congestion issues and mask issues sorted out that things will turn around for you and you will feel better and no real urgent need to look at any reports.

Lansinoh is a brand name. It is likely that you may have a different brand for a similar product. Lanolin ointment.
Very easy on the body tissues and using it doesn't cause the silicone to degrade.

Interesting! I've been using chapstick every night for over a year & the pillows/cushions seem fine. What does it do to them?

racandimo wrote:I feel like such a freak with all the gear on.

I sleep with a bunch of stuff on too: dental device, nasal strips, chinstrap, mask; and I recently bought a foam cervical collar, and am trying to figure out how to add that to the repertoire comfortably. Sometimes I think it's hard to see a human in there, but it doesn't matter at all; because for the first time since I don't know when, I wake up feeling rested and like a human. I wouldn't worry about that part at all.