Sleep apena misdiagnoses?

[JDS74]

Deleted

[Wulfman...]

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.

I can't believe this thread is in its third page of and nobody has asked you how your machine is configured.

You have one of THE BEST CPAP machines ever made. All you need is the software and card reader to see the reports. The card readers are easy to find. Look for the Mako/Infineer DT3500 card reader. Depending on what computer operating system you use may determine what software you can use. Encore Viewer 1.0 or 2.0 will be fine for various versions of Windows XP or higher (preferably 32 bit versions).

If you have your machine configured in a range of pressures, that could be part of your problem......the pressure changes during the night could be disturbing your sleep.......and WILL leave you feeling the way you have described.

Are you using the humidifier with heat or without?
Do you experience nasal congestion?
Do you do nasal cleansing before bedtime? (If you can't breathe through your nose, that doesn't help the situation.)


Den

[Bright Choice]

Back on the mask.. I used to have a Fisher and Paykel mask (the one that goes under the chin) and I liked the fitment of that mask, except the forehead piece which was a complete deal breaker. Is there anything similar but with a better forehead brace?

Regarding the mask problems. You should be able to work with your dme to try some different masks. If you have trouble communicating with your doctor and/or staff, you could have the dme call them and have them request a prescription for "mask of patient's choice". They really should be willing to work with you on the mask issue.

There is a member here who posts for http://www.sleepnation.tv. They are a dme supplier out of Utah. They have some very good videos on masks and they also have a trial program for masks. If there is a mask that you want to try for a week, all you have to do is pay postage. They do ask that if you decide to buy the mask that you, at your option, make your purchase through them - which is only fair. I have done 2 trial masks and the program works great. Take a look at http://www.sleepnation.tv/trialprogram

Good luck - you have some great folks here pitching in to help you!!

[Alshain]

I can't believe this thread is in its third page of and nobody has asked you how your machine is configured.

You have one of THE BEST CPAP machines ever made. All you need is the software and card reader to see the reports. The card readers are easy to find. Look for the Mako/Infineer DT3500 card reader. Depending on what computer operating system you use may determine what software you can use. Encore Viewer 1.0 or 2.0 will be fine for various versions of Windows XP or higher (preferably 32 bit versions).

If you have your machine configured in a range of pressures, that could be part of your problem......the pressure changes during the night could be disturbing your sleep.......and WILL leave you feeling the way you have described.

Are you using the humidifier with heat or without?
Do you experience nasal congestion?
Do you do nasal cleansing before bedtime? (If you can't breathe through your nose, that doesn't help the situation.)


Den

Machine is configured 6cm in CPAP mode. Nothing else is turned on. Computer is Win 7 x64, I'm not sure I can afford the $80 card reader right now anyway. Using Humidifier w/ Heat. Nasal congestion is rare, but does happen. ENT told me to use Afrin for the infrequency, also gave me some Nasonex samples for my springtime only allergies, which are over for the year. Never done a "nasal cleaning", not really sure what that would entail.

As I mentioned, I was sent to an ENT to check out my nose but even thought the sleep doctor insisted my turbinates (sp?) were over sized, the ENT said everything looked fine to him and that I didn't need the Somnoplasty.

There is a member here who posts for http://www.sleepnation.tv. They are a dme supplier out of Utah. They have some very good videos on masks and they also have a trial program for masks. If there is a mask that you want to try for a week, all you have to do is pay postage. They do ask that if you decide to buy the mask that you, at your option, make your purchase through them - which is only fair. I have done 2 trial masks and the program works great. Take a look at http://www.sleepnation.tv/trialprogram

Good luck - you have some great folks here pitching in to help you!!

Not sure my insurance will go for that. But I'm liking the videos there.

[jmelby]

Back on the mask.. I used to have a Fisher and Paykel mask (the one that goes under the chin) and I liked the fitment of that mask, except the forehead piece which was a complete deal breaker. Is there anything similar but with a better forehead brace?

Specifically which F&P mask? (You have the Resmed Quattro listed in your profile, so not able to tell from that) There are 3 versions of the F&P full face mask--the Forma is the latest one and has a different forehead support than the 431 & 432. There is also a similar mask that goes under the chin but with no forehead piece--the Hans Rudolph 7600. Take a look at them on cpap.com or another site that sells them to see the differences.

[Alshain]

Back on the mask.. I used to have a Fisher and Paykel mask (the one that goes under the chin) and I liked the fitment of that mask, except the forehead piece which was a complete deal breaker. Is there anything similar but with a better forehead brace?

Specifically which F&P mask? (You have the Resmed Quattro listed in your profile, so not able to tell from that) There are 3 versions of the F&P full face mask--the Forma is the latest one and has a different forehead support than the 431 & 432. There is also a similar mask that goes under the chin but with no forehead piece--the Hans Rudolph 7600. Take a look at them on cpap.com or another site that sells them to see the differences.

This was the 431 (glad I kept it, I found the number on it). The brace piece literally cut into my forehead, left a red line for a few weeks. All it had was a 1/2" cut out from a rubber hose to cushion it.

LOL @ the Hans Rudolph one. That thing is massive, looks like it could eat the manikin they put it on.

[Bright Choice]

Not sure my insurance will go for that. But I'm liking the videos there.[/quote]

It is a free trial program. All you pay is postage. There is no obligation to buy from them.

[Pugsy]

http://www.directhomemedical.com/101435 ... eader.html
Best price that I know of.

[ameriken]

http://www.directhomemedical.com/101435 ... eader.html
Best price that I know of.

I was just going to post that, ya beat me to it.

BTW, if you post in the 'promo code' the word 'spring', it will save you another 5% off the price. I just bought my reader from there. I've seen it as high as $79 elsewhere.

[BrianinTN]

That is a pretty good price for the card reader. Another alternative is to make a thread here asking if people want to sell their old card reader inexpensively. A lot of people used to have older CPAP machines like you do but have since obtained newer machines that use standard SD cards. Anyway, that's how I got my card reader, and I'm happy I did.

As for your original question, it is the case that there is some measure of discretion in issuing a diagnosis. For example, if your AHI is just above the cusp for the "mild" cutoff, and your events are highly concentrated around sleep onset, or is comprised of central apneas during sleep onset, treatment is debatable. Once we get your full sleep study reports here and can see some results from your nighties, everyone will be able to comment better and without speculating.

[Alshain]

See, this is what I'm talking about...

Night before last I decided to NOT use the CPAP machine. I got up the next morning at 6 am when the alarm went off. Felt fine, got dressed and went to work. Had a few evening headaches, but they were mild.

Last night I used the CPAP, 6cm, Heated Humidifier, all that. Seemed like I fell asleep ok, but when the alarm went off at 6, I hit the snooze over and over again until 7:10. Kept telling myself I had to get up but I just couldn't drag myself out of bed so I rolled over and slept (or tried to) another 8 minutes till the cycle went off again. Finally I rushed to work at 7:30 without so much as a shower because I didn't have time. I'm at work, my eyes won't stop watering. I feel like I can't keep my eyes open and I can't concentrate on anything.

The phrase "Don't fix what isn't broken" comes to mind. Seriously, if my choices are die young or live a miserable life... I choose die young.

[Alshain]

Sorry.

If I'm coming off as tired and cranky... it's because I am.

[datara]

For what it is worth, I had many of the same things you are describing, the back and chest pains most noticibly, tingling in the arms and legs and sometimes leg pains for the past decade or more, I have only been on the pap for a month and HUGE difference, but I also have hiatus hernia, have you been tested for that. The apnea and hiatus hernia were diagnosed at the same time, but I did not get my pap for about 1 and a half months after the diagnosis. I was prescribed meds for the hiatus hernia, no results, but when I got the machine, the results were virtually instant. I am 43 and still have aches and pains, but no where near how bad I used to feel. Many nights I felt like I was having a heart attack, but the chest pain would move around, sometimes right side sometimes left, and the back pain was mostly in the morning. Apparently the equalization from the constant air pressure is what does the trick, in conjuction with meds. I even thought I might have cancer.

[Alshain]

For what it is worth, I had many of the same things you are describing, the back and chest pains most noticibly, tingling in the arms and legs and sometimes leg pains for the past decade or more, I have only been on the pap for a month and HUGE difference, but I also have hiatus hernia, have you been tested for that. The apnea and hiatus hernia were diagnosed at the same time, but I did not get my pap for about 1 and a half months after the diagnosis. I was prescribed meds for the hiatus hernia, no results, but when I got the machine, the results were virtually instant. I am 43 and still have aches and pains, but no where near how bad I used to feel. Many nights I felt like I was having a heart attack, but the chest pain would move around, sometimes right side sometimes left, and the back pain was mostly in the morning. Apparently the equalization from the constant air pressure is what does the trick, in conjuction with meds. I even thought I might have cancer.

MRI of head and spine tomorrow. Also an EMG tomorrow. My pain actually comes and goes. Sometimes it goes for weeks at a time, but there are more bad days than good. I also have a myriad of symptoms I didn't post which scream neurology. I get hot flashes in the bottom of the heel of my left foot for example. Constant muscle twitching (I know some twitching is the human condition, but not this much) and other things like that are always happening.

EDIT: Just read about that Hiatal Hernia, I guess it isn't in the spine. Some of it looks like it could fit, I do have frequent heart palpitations. Never had shortness of breath though. Also, I have been to the ER and had a chest X-ray and I would have expected that to show up.

EDIT2: Oh yeah, also my hands and legs tend to go numb or tingle like they are asleep (at least some part of my body is sleeping lol), I have so many symptoms I can't remember them all at any one given time.

[datara]

X rays don't reveal it, I had to go in for a different type of x ray using barium, prior to that I had numerous x rays, back and chest, done showing nothing. The other thing to consider is stress. I know (now, just now) that I went the three stages of grief. Denial, anger and now acceptance, I took my anger out on the process of purchasing the machine portion of this process. I needed to be angry, so I was angry at the doctor, RT and medical system. I now realize that I am mad that I was diagnosed. Stress can definitely cause headaches, sleep time is when your body heals itself, so don't stop the treatment. The results from the machine will tell the tale as far as if you are seeing benefit from the treatment, but if you are stressed from the process, that isn't helping.

Good Luck