CPAP treatment and feeling weird!

[atruvirgo]

Since I began treatement I feel weird. Can't put my finger on it but definiterly NOT better. My jaws hurt really bad, I have constant headaches and an odd feeling in my chest, back and legs. I can't seem to get up in the morning and the longest i have been on the machine is 4 hours at a stretch. Is this normal break in stuff or is something not right??? I have an appt. Tueday with the Internist/Pulmonoligist and want to go in armed with questins and suggestions. One is to request a CPAP with feedback, mine does not have that capability. Please help!

Debbie/Atruvirgo
Scratching my head and wondering what the hell I got myself in to!

[Babette]

MY EXPERIENCE TOO. It does get better. Slowly. Frustratingly slowly. Ask for some Provigil - it's helped me. I don't take it every day, and I vary the dosage between a whole pill and a half a pill. I can tolerate a whole pill now, but couldn't the first day I took it.

I'm learning this story is VERY TYPICAL. Very few of us have a smooth and satisfying transition. Most of us have a difficult time adjusting. The first two weeks I was in h*ll. I was d*mned near homicidal. I could NOT drive. I could barely function. I had to take days off from work. I'm getting better. Haven't had to take a day off from work in 2 weeks now. I've managed to get a few things done around the house. I plan to finally do some dishes today.

It's horrible. I hate it. The only thing worse than CPAP is a diet. And just like a diet, you WILL take days off, and hate yourself, but you just have to get back on that horse.

Keep us posted. We all sympathize/empathize.

Hugs,
Barbara

[BrensTiredMom]

Barbara,

I haven't started yet...I see the Dr. on Tuesday and hope to start by the end of the week. Is it really bad because you're already exhausted and then adding another level of sleeplessness on top of it? (I hope that made sense.) I am barely functioning as it is. I'm wondering if I should have a long talk with my boss to fill him in, up until now I've been managing at work and crashing at home and I work mostly independently so I can work harder on good days and slack on rough days. Any advice would be appreciated!

[Babette]

BTM, YES! You have to tell your coworkers just what to expect. I have a demanding job, but I also have very good coworkers. They've been with me from the beginning with this, and have very kindly covered for me when I just had to have A DAY OFF to catch up sleep.

My first week, I got it on Friday afternoon, was too tired to fiddle with it that night (ended up doing some very physical yard work after the appointment and was EXHAUSTED and just fell asleep). I started it on Saturday, I did it on Sunday, by Monday I was so shakey with exhaustion I was crying. I think I did it on Monday night. I know on Tuesday I was begging for a different mask. I got that, and then I think I took Wednesday and Thursday nights off because I was completely unable to function at work and had to be there and CRAVED SLEEP.

If you have a little one at home, I would suggest that you might need to connect with friends and family for some emergency respite care. It's been very randomly up and down the past few weeks for me. I've had bursts of energy that kept me working until 10 pm, and several nights where I went to bed at 4:30 in the afternoon. Your child might need to go visit "Auntie" now and again, just so you can nap or catch up.

EVERYONE'S MILEAGE VARIES. It's completely different for everyone. I just five minutes ago tried on my fourth mask. I'm only on Week 5. The mask makes all the difference.

Gosh, I hate to load you up with all the lists of things you have to take into consideration before you start becaue - NO ONE TOLD ME! And maybe, even though I went through H*LL the first two weeks, that's a good thing. Maybe it was easier for me to think I was the one to blame - it sorta kept me going. If I'd known how hard it was, I think I would have just quit and thrown in the towel. And then, last week, I had a very bad day and was ranting all over this board and causing all kinds of consternation and people just wanted to SMACK ME for what I was saying about how I was completely DONE with cpap therapy and it was all a crock, etc. etc. And then a few days later I'm okay.

Maybe it IS me! Maybe I'm just mental. But I think I'm hearing that others went through this same thing, so I keep plugging away at it. I feel like I'm chipping away at it. I rack up the number of nights in a row I manage. So far, I haven't had more than 7 nights in a row. There's always SOMETHING that gets in my way and I take a night off. But I survive that, and get back on the horse again. It reminds me ALOT of dieting. You hate it, but you do it, then you cheat, you feel bad, you get back on the diet.

I'm not the best person to talk to about this. I'm sorta random and weird to begin with. And this has only increased those tendencies.

Build your support network. Give yourself breaks. Whine to folks here. Demand the masks/machines you need. Play Mask Roulette and trade masks. Pay attention when you feel good and try to replicate whatever combination led to that.

Best of luck!
Barbara

[Babette]

BTW atruvirgo, ask your DME for another mask. Just keep changing masks until you can sleep in one for longer. It's all about the mask. If you can't stand it for more than 4 hours, then change masks until you can.

I'm all about nasal pillows. I started with Optilife, went to ComfortLite2, then Breeze, now testing Hybrid.

I really hate those nasal masks that cover your nose. But the pillows can be painful. Everything's a trade off. And what works for one won't work for another. You just don't know until you sleep in it.

And does everything hurt? Yes! Arm aches, legs are sore, but I can't tell if that's from CPAP or the extra physical activity I'm doing lately. If you can pinpoint it to cpap, then you're either breaking it in, or it's not working right.

I do think you have to give something several nights before tossing it aside. Unless you've tried 50 masks and KNOW from just one night this one is NOT going to work. Novice maskers should definitely give it a week. I was not terribly happy with my CL2 the first few nights, but after a week I'd pretty much gotten it to work. But then I got the Breeze, and it worked BETTER, so I was happy to pass the CL2 off to someone who wanted to test drive it.

Good luck!
B.

[Lea]

I have been on CPAP for about six weeks now. My jaw also hurts and before starting CPAP treatment I had some real bad days. It has improved, but still mildly sore. My ankle and feet are sore after sitting or getting out of bed in the morning. At first it's difficult to walk, but it goes away.

Before I read your post I had never heard of anyone's jaw hurting before. I was starting to wonder if it was from the apnea or not.

On the previous post, Babette suggested Provigil. I started it four days ago because I'm still very fatigued. The first day was great and it's been difficult since. I need to contact the doctor to see if I should discontinue or give it a chance. I can see where it could be wonderful if it agrees with you.

Write again after you see the doctor.

It's a process, hang in there - I am!

[Julie]

Most of your soreness is likely from your neck being held at a different (or stiff) angle than usual (those 'messages' travel all over), and that's because you're probably going rigid even in your sleep as a reaction to wearing the mask (or else it's pushing your head to a new position). You will get more used to it, but trying another mask might also be a good idea.

[justplainbill]

Debbie-
It does sound like a fully data-capable machine might be helpful. I would think that this would help most if your problems seemed to be related to ongoing apnea/hypopnea events and/or leak rates.

However, it might also be helpful if you could help identify the factors that are getting in the way of using the machine and mask for you. CPAP can take some getting used to but the more clearly you can identify (whether for us, for yourself, and/or for your doctor) the factors interfering with your CPAP use, the easier it should be to provide better guidance. Factors such as mask fit, machine noise, too much/too little humidity, sleep positions, mouth breathing, and getting comfortable with the idea of having something covering your nose (or overcoming fears) are real problems that can make the acclimation to CPAP difficult. If you can isolate which of these problems apply to you, the easier it should be to find and get help for you.

Good luck and best wishes,
Bill

[Babette]

I gotta a little neck soreness last night from my first night on the Hybrid. The extra plastic around my face caused me to lay my head in an unfamiliar position. No headache, I'm fine this AM, just a slight twinge.

I think it's part of the break-in phase, learning the new sleeping positions, where to put the pillow, where to put the head in relation to the pillow, dealing with the hose, etc.

Good luck and let us know how you're doing!
Barbara

[JZ]

atruvirgo,

I began having some fairly serious jaw pain just after I started using CPAP. A couple of months later (2/07) I found this forum and posted a question about jaw pain and did not get any responses from people with a similar problem. Since then, I have seen it crop up several times.

I do not know for sure, but I think that several things contributed to my jaw pain. I am a tooth clencher at night. I have a biteguard I wear at night, but apparently it was not doing the job because I not only cracked it, I cracked my dental bridge. My clenching and jaw stiffness were probably as a result of my usual clenching plus the stress and tension of trying to adjust to CPAP. I am a very light sleeper and was miserable with the mask, headgear, machine noise, hose, etc, etc. The other likely contributer was (as mentioned by Julie) holding my neck at an odd angle in an attempt to keep from dislodging my Swift nasal pillows when sleeping on my side.

The bad news is that I still have jaw pain after 8 months of cpap. I am working with several healthcare providers on that issue -- primary care physician, dentist, sleep doc, and physical therapist.

The good news is that I am getting used to cpap. I now use a ComfortLite 2 nasal pillows system and it works pretty well for me. I am compliant with my therapy and intend to keep it up. Yes, I am still tired some days. Yes, I still have the jaw pain. But in the long run, those will become issues I can manage. And I will have the comfort of knowing that my brain and heart are getting enough oxygen each night thanks to CPAP.

Before you get frustrated and give up -- go quickly and discuss your situation with your doctor. See a dentist to determine if you need a biteguard. If you already have one, see if it needs to be adjusted. Make sure you have a mask that is comfortable for you and does not make you do body contortions at night in an attempt to get comfortable.

By the way, I also had an "odd feeling in my chest." It felt like shortness of breath, sort of like a time when I had a mild case of pneumonia. It went away after a few days and I decided it was my lungs getting used to pressurized air filling them more deeply than in my normal breathing pattern (that was just my guess).

I think the important thing is for you to talk to your doc about all your symptoms and keep pursuing answers and help that will allow you to continue your CPAP treatment.

PM me if you want to discuss sore jaws more. Unfortunately, I am getting a lot of experience with that issue.

Janna

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CPAPopedia Keywords Contained In This Post (Click For Definition): hose, news, swift, CPAP, Nasal Pillows

[JennyLouWho]

Lea....the symptoms you describe sounds like something I have. Plantar Fasciitis. (Don't think I spelled the last word correctly). If you awaken with ankle and feet tenderness, that makes walking difficult, but goes away shortly...it sure sounds like it. You should talk to your doctor about this and mention what you (I) suspect it is. There are exercises and shoe inserts that will help this. It only gets worse if not treated...believe me! Hope this helps you.