Sleep apena misdiagnoses?

[Alshain]

I've been using a CPAP pretty regularly for 6 months now. However, lately I'm beginning to wonder if I really even have sleep apnea. I've tried going a few nights without the machine and I feel equally terrible without it as I do with it (I used the negative because I do feel awful 75% of my days regardless of the CPAP). Wouldn't the CPAP make a noticeable difference after 6 months of use? And if I stopped using for a night, wouldn't I feel worse the next day?

The only difference between using the machine and not using it is that I sleep better without it (I stay awake till 2am messing with the mask because I still haven't got used to it, where as I seem to sleep fine without it).

Is it possible/common to be incorrectly told you have sleep apnea when you don't? How accurate is the sleep study?

I am at wits end trying to figure out what to do. I can't afford another sleep study and I feel as though I'm wasting money I don't have supporting a treatment for a disorder I don't have.

[BleepingBeauty]

I've been using a CPAP pretty regularly for 6 months now. However, lately I'm beginning to wonder if I really even have sleep apnea. I've tried going a few nights without the machine and I feel equally terrible without it as I do with it (I used the negative because I do feel awful 75% of my days regardless of the CPAP). Wouldn't the CPAP make a noticeable difference after 6 months of use? And if I stopped using for a night, wouldn't I feel worse the next day?

The only difference between using the machine and not using it is that I sleep better without it (I stay awake till 2am messing with the mask because I still haven't got used to it, where as I seem to sleep fine without it).

Is it possible/common to be incorrectly told you have sleep apnea when you don't? How accurate is the sleep study?

I am at wits end trying to figure out what to do. I can't afford another sleep study and I feel as though I'm wasting money I don't have supporting a treatment for a disorder I don't have.

If you've been feeling awful 75% of the time for the past six months of use, what have you done to determine WHY that is? Have you read much on this forum in all that time? Have you consulted your doctor? The machine in your profile provides AHI and leak data. Have you even looked at that data?

Why not try wearing the mask during the day, while watching tv or reading, to get used to having it on your face? If it doesn't fit you well or leaks all the time, try another mask. Many of us don't get the kind of support in the real world that we get right here. Take advantage of all the wisdom on this site.

This therapy isn't easy for many people, but there are thousands here who've persevered and made it work for them. Good therapy doesn't happen all by itself - it takes WORK on your part. The outcome is worthwhile, but you have to make an effort.

I'm betting you weren't misdiagnosed. If you feel awful with or without using the machine, chances are good you NEED the machine; you just have to figure out what about your therapy settings needs to be adjusted to give you restorative sleep. Time to put some effort into getting effective therapy, IMO.

[goldfinch]

I don't want to believe that I have sleep apnea. I lost a lot of weight. It should be gone. However, it isn't. I look at the data on my machine and even though my AHI is within acceptable range it takes pressure from the machine to make it so.

Maybe you just have a mask problem. Try some other masks. Call the doc. Explain that you are not feeling better. Ask for help.

[Alshain]

Well, that's just it. I had the sleep study because my GP couldn't figure out what was wrong and so he suggested it. I have none of the symptoms you listed or any of the symptoms (other than fatigue) that I typically see associated with sleep apnea. I've never had trouble falling asleep at awkward times, I've never felt that I was overly irritable, my headaches are always in the evening, sleeping makes them go away for a while. I have leg pain, chronic headaches, abdominal pains, chest & forward shoulder pains and back pains, and extreme fatigue, sometimes I do have concentration issues but that can be many things. Originally the leg pain was my chief complaint so I think my GP suggested the study for RLS, not Apnea. Of course I was desperate so I went with it, but I really didn't know anything about sleep disorders at the time. I have read a lot about the condition but it doesn't describe my problems. That's why I don't understand how I could have been diagnosed with it.

I'm working with a neurologist now, have an EMG and MRI scheduled but we still haven't figured out what it is as of yet (going on 5 years since first symptoms, at least 2 of which have been completely miserable).

As far as THIS treatment, I have tried wearing the mask while awake but that never made much of a difference. It feels fine while I'm awake but when I lay down it bothers me.

No, this is not a troll question, I'm seriously considering either dropping the CPAP use all together or at least trying to get a second opinion (which probably means another study that I can't afford right now). The only reason I hesitate at doing that is because in the chance that it is real, then I know it can cause heart failure and that gets me worried.

I'm also curious about how trustworthy sleep medicine is (the people in the profession that is). The sleep doctor I have rubs me the wrong way, I just feel like he might be padding his wallet. It seems like diagnosing someone incorrectly and giving them a lower pressure (as is my prescription) wouldn't cause any harm to the person so it's the perfect way to run a scam. Unfortunately he is the only one in town on my insurance plan. As far as talking to him about it... he doesn't want to hear that it isn't working. It's like he can't believe what I tell him. He even sent me to get surgery and thankfully the ENT he sent me to was respectable because he said my terminates were fine, but the sleep doctor kept insisting they were too large.

I'm really just asking around to see if anyone else had any similar experience, unfortunately I guess if they did they would have stopped visiting these forums, but I can't find any information false positive diagnosis of apnea (there is plenty of false negative diagnosis) and so I was going out on a limb.

[BlackSpinner]

Get a copy of your sleep study and post it here. People here can read it and tell you more. If your AHI was over 15 then you have sleep apnea and by stopping therapy you will slowly kill your brain and organs. Fatigue is only one of the presenting symptoms, slow death by a thousand cuts (asphyxiations) is the real silent killer

[BleepingBeauty]

Honestly, it sounds to me like you're just looking for a reason to stop using the machine. You say you have no typical symptoms of apnea but then list extreme fatigue and chronic headaches among the others. Both are correctable with effective therapy. I bet you've never even glanced at the LCD screen on your machine to see what your AHI and leak is. If YOU aren't interested in how well (or poorly) your therapy is going, who else should be?

You haven't given this therapy a fair shot, IMO. If you've been registered here for six months but haven't made an effort to find out why you still feel so crummy, you're just looking for validation to stop therapy. Good luck finding that here.

If it's important to you to get this under control and stop doing the damage caused by untreated apnea, then you make the effort required to get there. Period. My first sleep doc was useless. Second one was two hours' drive from my home. Neither one helped me get to where I am now; I only got here because I found this forum, asked questions, read a ton, and put in the effort required to get the best treatment possible. (For me, it was important, I made the effort, and I have a life again.) Your call.

[cflame1]

Honestly, it sounds to me like you're just looking for a reason to stop using the machine. You say you have no typical symptoms of apnea but then list extreme fatigue and chronic headaches among the others. Both are correctable with effective therapy. I bet you've never even glanced at the LCD screen on your machine to see what your AHI and leak is. If YOU aren't interested in how well (or poorly) your therapy is going, who else should be?

You haven't given this therapy a fair shot, IMO. If you've been registered here for six months but haven't made an effort to find out why you still feel so crummy, you're just looking for validation to stop therapy. Good luck finding that here.

If it's important to you to get this under control and stop doing the damage caused by untreated apnea, then you make the effort required to get there. Period. My first sleep doc was useless. Second one was two hours' drive from my home. Neither one helped me get to where I am now; I only got here because I found this forum, asked questions, read a ton, and put in the effort required to get the best treatment possible. (For me, it was important, I made the effort, and I have a life again.) Your call.

Beauty... the LCD on the OP's machine will show him nothing... other than the pressure being presented at the moment.

In order to get the data, the card needs to be read.

[BleepingBeauty]

Beauty... the LCD on the OP's machine will show him nothing... other than the pressure being presented at the moment.

In order to get the data, the card needs to be read.

Even if that was the case (and I don't think it is, if the machine is listed correctly), the OP has apparently made no effort to determine why his therapy isn't working well.

The machine listed is the Remstar Auto.

[Alshain]

Honestly, it sounds to me like you're just looking for a reason to stop using the machine. You say you have no typical symptoms of apnea but then list extreme fatigue and chronic headaches among the others. Both are correctable with effective therapy. I bet you've never even glanced at the LCD screen on your machine to see what your AHI and leak is. If YOU aren't interested in how well (or poorly) your therapy is going, who else should be?

I have actually, I've looked everywhere on it but it doesn't have it unless you have the card reader and I have made a 6 month effort to make the treatment work. I expect at some point before I die it should start working? By the way, I already have plenty of reasons to stop. I'm looking for reasons not to stop.

I'll see if I can get the sleep study report tomorrow.

[Bright Choice]

You are getting some really good advice here.

You mentioned that you spend a lot of time fussing with your mask. I'll put my 2 cents worth in for a tiny portion of your puzzle. Are you using the mirage quattro that shows in your profile? That can be a challenge to tame. Look at janknitz's profile. She has a good link about "taming the quattro". I have had a lot of trouble with leaks with that mask. I just added a anti-leak strap like Karen has on padacheels.com. It dropped my leaks way way down.

Good luck! Stick with it! Be proactive!

[Alshain]

You are getting some really good advice here.

You mentioned that you spend a lot of time fussing with your mask. I'll put my 2 cents worth in for a tiny portion of your puzzle. Are you using the mirage quattro that shows in your profile? That can be a challenge to tame. Look at janknitz's profile. She has a good link about "taming the quattro". I have had a lot of trouble with leaks with that mask. I just added a anti-leak strap like Karen has on padacheels.com. It dropped my leaks way way down.

Good luck! Stick with it! Be proactive!

Yeah, I read a lot about that mask. I saw a video once on how to fit it but I never did get it right anyway. I hate it, I wanted to try something else but my DME said they couldn't give me anything else unless my sleep doctor prescribed it. I tried to ask him about it, but well we already discussed how he refuses to listen. My biggest problem with it is when I lay down I knock the mask off (or cause it to leak) with the pillow, so I cinch it down as tight as I can get it which stops the leaking but it's incredibly uncomfortable and in the 6 months I've been using it I've burned through 4 headgears. I can't sleep on my back, that will never happen.

[Julie]

Why don't you get a Pap pillow - it won't knock your mask off.

[Alshain]

Why don't you get a Pap pillow - it won't knock your mask off.

They are expensive and everyone kept telling me they didn't work.

EDIT: Oh, also when I saw them at Target they looked puny (like 1/4 the thickness of a normal pillow).

[HoseCrusher]

You may want to see if you can borrow a recording pulse oximeter. You could wear it while using your xPAP machine and without it. Comparing the data may show you that you have better oxygen levels using the machine. This would clear up one aspect of your issues.

[Lizistired]

Get copies of both sleep reports with condensed graphs. The initial study and the titration.
While you're there, get a copy of your prescription for your records.