Frustrated and tired. :(

[Thren]

Or is that the other way around? It's all getting a bit confused at this point.

My name is Thren (*waves*), I'm 26, single, working a crappy data entry job, live with two sisters and five dogs. I'm very fat for various reasons- one of those being PCOS- and my doctor(s) seem to think fixing the apnea thing will help give me more energy so I can get through the day and still have enough get up and go to get some exercise in. Which I was really looking forward to, as I hate being tired all the time. Things haven't turned out that way. I have OSA, though according to my mother I've been having apneas since I was a baby. Can babies have OSA? Something to look up, I guess.

I've been using a cpap since the end of July, and at first things were great. I had more energy and I was able to stay awake all day without having to take naps. I started with the Activa nasal mask, since that's what I'd used for my second sleep study and it had worked wonderfully. I lasted a week on that one, apparently the bridge of my nose is too narrow (leaks ahoy!) and to form a decent seal I ended up having sore spots all over the place.

At any rate, I moved on to my current mask, and things were fine for about three months. Then the leaks started getting more frequent, and I started opening my mouth at night. I took care of the mouth thing via tape (and thank you- my family thought I was crazy and/or weird, so I was glad to know it wasn't just me), but I'm still having leaks. Even when I manage to have no or only minor leaks, I still wake up tired. It's gotten progressively worse since November. First it was just not having a whole lot of energy (I never did feel as perky as I did the day of my second study) and taking a little while to really wake up.

But it kept getting worse until I'm back to where I started- sleeping ten hours a night, waking up tired, taking naps on the bus to work, when I get there, on every break, and on the way home. I have no energy, my brain is foggy, and I'm constantly trying to fight the urge to curl up in a quiet corner and go to sleep. Last week I had to take a half hour nap at my desk after work, just to have the energy to walk to the bus stop. The latest bit in this little journey into the land of Blech is that I've been waking up at night for no good reason. No leaking, no getting tangled in the tubing. Just wide awake at 1, 2, 3, and 5, then straight back to sleep.

The other part is that I knew nothing when I got my machine, didn't even know where to start looking for info, and just trusted the (very nice) people to help me. AHAHAHA. Anyway. I ended up with what seems to be kind of a putzy machine in that I can't get software to record data and see how I'm doing, but that's kind of a minor thing except that I can only take guesses as to what's going wrong.

I'm beginning to think I have the wrong pressure setting. The range the technician gave was 8 to 10, but the doctor made the script out for 8. I'm starting to think it was wrong because I felt AWESOME when I came out of that second study. It was glorious, it was wonderful, I had more energy than I'd ever had in my life- even though I was a little tired from the crappy hospital mattress and being tangled in wires and waking up because I had air shooting into my eyes from leakage. I've never felt that way again, even using it religiously every night. And that pisses me off, because I spent an exhorbitant amount of money (CDN$1300), and where has it gotten me? It would be so worth it if it worked, but it doesn't.

The first thing I'm going to try and fix is the mask, as I realise that leakage = less pressure and that might just be the end of it. I'm trying to get a hold of a different sized pillow and see if that will help. The 'small' seemed really big when I tried it on and the 'petite' more comfortable, but it's not forming any sort of decent seal at this rate so it's time bump up a size. If that doesn't help, I'll look into a different mask. Any suggestions for a side and stomach sleeper? I've heard people say the mask I've got is a pain for that, but it works well enough for me as far as moving around and the tubing and stuff. Maybe that's just because I share the bed with two little dogs, and I'm used to waking up and readjusting myself before dropping off again, I dunno.

At any rate, once I get the leaking issues taken care of, I'm going to try changing the pressure setting myself- if I can find out how to do that. -.-

I guess this was more venting to people who might understand than anything, and I'm sorry for that. It's awesome to be able to come here and find out that so many of the issues I've been dealing with aren't just unique to me. But at this point I'm so frustrated that I have to go through this huge ritual every night (filling the humidifier, ponytail to keep the headgear from slipping off, taping my mouth shut, adjusting and readjusting and re-readjusting the mask, battling with tubing) just to go to sleep, and when I wake up I have nothing to show for it. :\

Well, um. Thanks for listening? *creeps off*

[NeedinZs]

Hi Thren,

Welcome to the forum! I am so sorry things are going so horribly at this point.
Yes, it is nice to be able to vent to those who have been there.

I'm sure you will get some thoughtful help from others on here. Hang in there.

I'm not at all familiar with your machine. Is there a way for your Dr. or DME to read any data to see what's going on?
Sounds as if things are definitely not set right. Also, I think you said your recent mask is 3 months old, maybe it's met it's life expectancy for one thing.

I'm sorry to not be of anymore help, but just wanted to welcome you.
Hope you're back on track soon, so you can get back to your life!!

Take care.

[6PtStar]

I'm really sorry. Yes it can be difficult and a lot of us have been where you are. The problem you have is your machine. Unless you have one that is fully data compatable you are flying blind. With out data it is dificult to figure out what to do or what is wrong. You have at least figured out that leaks can make a big difference. With out data you may have to go back to the sleep lab and do another study to see if they can find the problem. If you can get a data compatable machine and post the readings there are some folks on this board that can look at the data and maybe point you in the right direction.

Jerry

[sharon1965]

hi thren
*waves back* LOL
i can really hear your frustration coming through in your post and i'm sorry you're having so much trouble, or at the very least, going to so much trouble and not feeling any better for it...i can relate

i can also relate to not having data to track my therapy and i have to tell you, that was the most frustrating thing for me....i spent 9 months on a bare bones machine--in fact, the slightly upgraded version of yours-- and i only just upgraded in september...which translated to nine months on the wrong pressure; i'm feeling much more confident now that i can read those reports every morning...is it possible for you to upgrade? miraculously my DME took back the nine month old machine and charged me the $300 difference between what i'm covered for and what the new machine "cost"--(we all know there's a huge markup here in canada, in fact, your machine is less than $400 on cpap.com) but it did take all that time to convince them

as far as changing your pressure, i've done that myself with some instructions someone posted on here, but they were for a different machine, so i'm sure someone will come along behind me and post the instructions for your model, if you're interested in trying that higher pressure you mentioned; personally i would definitely increase to 10 cm, though i'm no doctor and you have to decide that for yourself

you asked about recommendations for interfaces for side/stomach sleepers: i'm not able to tolerate a nasal mask so i use nasal pillow interfaces...the one i use is called the 'headrest', which isn't available through my supplier, medigas (supposedly not available in canada), but i order it from our hosts at cpap.com and pay for it myself...even though i have coverage every six months for a new interface, i haven't found one that i like as well, so i just pony up for it ...anyway, others will probably weigh in with their faves as well, i just know that a lot of other side sleepers really dig the headrest

most importantly, don't apologize for venting...we've all been there and done that...keep coming back for support and encouragement...it's why we're all here!

take care
sharon

[RosemaryB]

Welcome, Thren!

If you can figure out a mask that works for you that will be a good step. Nearly every one has to do with at first. GEt the right mask and stop all leaks. This is often the most important step. But you may still need to find out what pressure works for you. That was the case for me, since I was titrated at 5.0 and my best pressure is 9.0.

It's clear that your therapy is not working. When this happens you need to get the sleep doctor involved to find out what's going on and how to make it work. Perhaps you can find someone who will write a prescription for a machine that records data and trade in the one you have, since it's not working for you. Since I"m in the U.S., I don't understand your health care system, but perhaps some other Canadians can share experiences that will help.

Even if you have to buy the machine yourself, it would be well worth the money. You could think of it as an investment in your ability to earn a better living over time. Without sleep, it's hard to work. I'm better at work, by far than I was before cpap.

[JZ]

Thren,

Yes babies can and do have apneas, so your mom may be right that you have had sleep apnea since you were a baby.

Like Sharon1965 I use the Headrest nasal pillows and I am a side sleeper. I have also had good luck with the ComfortLite 2 nasal pillows.

If you are not already doing so, you might try rubbing a small amount of Aryl Nasal Gel, or lanolin, or KY Jelly on the edges of your nostrils before putting on your nasal pillows mask. That helps with a good seal.

I was lucky in that when I could demonstrate to my physician that I was not improving with the use of a basic cpap machine, she sent me to a sleep doctor who immediately wrote me a prescription for a data-capable apap machine. I don't know if that would be possible with your doctor or health system, but I strongly recommend you pursue options for getting a data capable machine.

Good luck to you.

Janna

[GrizzlyBear]

Hi, Thren.

I'm sorry, but I am of absolutely no knowledge value to you at all (and as a teacher, I suspect my students are also of that view about me!!!!). Nonetheless, I have also recently started with this CPAP stuff (although more recently than you), and I have vented on this forum a few times, and I have invariably found the people here as caring and helpful as they can be.

Don't feel embarrassed or ashamed - after all, none of us know who you really are!!!! And that is just your feeling anyway - the people who are reading your entry just want to help someone who is clearly suffering.

Good luck, and all the best.

GrizzlyBear

[Sundown]

Hey Thren:

I can relate.. believe me. I used to sit at my job (I did Excel spreadsheets and Powerpoint presentations every day and it got boring and uneventful) and I am overweight and man.. when 3:00 p.m. would hit, I was so tired and groggy that most of the time, I would struggle to stay awake and my eyes would just keep closing... I noticed my feet and legs were starting to swell as well... then I would huff and puff and walk to my car and go home and eat dinner (mostly quick carbs because I was so tired) and before I knew it... I was miserable and my health was going down the tubes. My husband said I was breathing funny at night and well you know the drill... went to doc and was diagnosed with all kinds of sci-fi sleep terms.. lol.

Anyhow, I learned how (with the wonderful people here guiding me.. thank goodness) to adjust CPAP Pressure and Ramp and am a very happy camper. I would definitely try a couple of different masks if I were you as others have suggested.

My husband is very overweight and a mouth breather. His pressure is 17, thus, he chooses to wear the Full Face Mirage Quattro. He FINALLY does not have leakage. We have tried the ComfortFull 2 and the Fisher and Paykel FF as well and he has settled for the Quattro. Yes, the masks are expensive, but I got them all brand-new at the CPAP Auction and worth the try for him.

As far as feeling miraculous and glorious... seriously since on CPAP, I have genuinely lost weight (around 28 pounds since October) and notice my energy level is higher. I started off with small things like walking in place and (this sounds goofy) vacuuming and mopping more.. lol.... and the clencher...laying off dairy (milk and cheese... my favorites... lol) and eating more whole grains and wheat. I eat a lot of roasted peanuts to fulfill my cravings.. lol.

You will find the people here are wonderful, intelligent and most of all EXPERTS here and I have learned how to deal with therapy (it's not a bed of roses for sure) on good days and bad.

Hang in there... we are here to help!!!

Hugs