Can I be wrongly diagnosed?

[jamestoronto]

I had a sleep study done at a hospital and was told I had severe sleep apnea and would have to use cpap. After 2 months of hell I managed to use the thing all night but feel worse then I did when I started using cpap.

I had my 2nd sleep study done this week and I was told my pressure will be lowered as I only need a 6 air pressure as at this level there was no apnea. They did the 2nd study only with a cpap machine on startng at this level and said that this pressure was sufficiant for me.

I was told that a 6 pressure was very low and that this is usually the pressure only for people to get used to cpap. If it takes such little pressure to clear my sleep apnea, what if I lost 20 pounds would my sleep apnea go away? I also was thinking that if my apnea did not show up this 2nd time with such a low pressure is it possible the first test was wrong? Why do I not feel any better on cpap if it is stopping my apnea?

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CPAPopedia Keywords Contained In This Post (Click For Definition): cpap machine, CPAP

[NightHawkeye]

Hi jamestoronto,

Welcome to the forum. Yes, you could be mis-diagnosed, but not likely. More likely is considerable variability in your sleep apnea. A number of poorly understood factors can affect both your pressure needs and the severity of your apnea at any given time.

Toss in the fact that a poorly fitting mask can ruin the effectiveness of therapy and the fact that titrated levels are often chosen on a whim by the sleep tech and you end up with quite a few folks who don't do very well when starting CPAP therapy.

The topic of whether losing weight will eliminate the need for CPAP therapy is brought up a lot here. The folks who bring it up often report losing weight but then indicate that didn't resolve the apnea. I recall one or two folks reporting that they thought they had eliminated their apnea with weight loss, but then objective measurement indicated otherwise. And then I also recall some who thought they eliminated their apnea with weight loss, but never measured it objectively to know for sure. All in all, the chances for resolving apnea with weight loss don't appear good. If you take this approach, then at least use a CPAP machine which records data so you'll know for sure whether you have resolved your apnea.

Why do I not feel any better on cpap if it is stopping my apnea?

Many folks have found out the hard way that their prescribed treatment was ineffective. By reading through some of the old threads here you can quickly find numerous accounts of ineffective treatment. The best way to combat that is by taking charge of your own therapy. Get a machine which records nightly data, and use that to make adjustments so that CPAP therapy works for you.

What machine are you using now? What mask do you have? If you'll fill out your profile, folks will be able to offer better advice.

Regards,
Bill

[socknitster]

So many things can contribute to different results with these tests unfortunately. I, for one, and I know several others too, can attest to the fact that I have far less apnea and need less pressure when I sleep on my side. Sleeping on the back puts gravity into play and can make apnea worse. I would venture a guess that you were sleeping in different positions during the two studies.

Other factors would include the type of machine they used, the mask they used, how tired you were, how long it had been since you had eaten (heartburn plays a significant role in apnea).

My best suggestion to you would be to talk to your doctor about an apap trial at home for a few weeks (or preferably to just change your prescription to apap). You will probably get a far better picture of what is actually needed over a longer period of time. One night in a sleeplab is just a snapshot and cannot always represent the bigger picture.

Some people do seem to feel worse before they feel better. The idea is to optimize your treatment and to be able to track it yourself with software over time. That is the only way you will know for sure how you are improving.

It could be very dangerous to just give up on treatment because of inconsistent results. Apnea, as you probably know, leads to high blood pressure, diabetes, heart problems, strokes and tia's. Not to mention the wieght gain and depression that goes along with poor quality of sleep.

As tired as you may be, you will have to expend some effort to get the proper treatment. That could mean consults with your doctor about all of this or even switching doctors. Sleep medicine is notoriously inadequate in these areas and it can take some work to get the proper care. You have found the right place to look for ideas and help.

Jen

[Julie]

It's quite possible you need a full face mask so you don't lose 'good' air out your mouth (you can't know unless someone tells you, but you may have your mouth open when sleeping, so Cpap won't help is the mask is only a nasal one. A lot of us have had to go that route (with no problem and a lot of improvement).

[SharonZ]

I fully believe I was wrongly diagnosed as having sleep apnea, but before I had an opportunity to talk it over with the prescribing doctor he had prescribed and had delivered a cpap machine. I agreed to give it a shot but after a month determined that I cannot continue to live a normal, healthy life if I continued to use the machine - I did not sleep more than 2 hours at a time since starting the cpap machine and was in a zombie state during the day at work. I've given up and do not intend to attempt this, what was for me, a ridiculous, unnecessary therapy. I truly believe it is life-saving for some people but for me it made my life a living (if you want to call what I've experienced for that month, "living") hell. I really believe that this treatment or therapy, like every other area in the medical field is sometimes misdiagnosed, and I also believe it is going to be very difficult to get any medical professional of any type to confirm your misdiagnosis, so this is probably something you will have to determine on your own. For me it was very simple - keep using cpap and become a raving lunatic, whom my husband will divorce if I continue my never-ending whining, lose my job because I can't stay awake at my desk, or fall asleep at the wheel while driving to/from work, all due to loss of sleep since I started cpap therapy, or quit using it and start getting a good nights sleep and my normally even-temper and sense of humor back. I chose the latter. Like I said, it's just a decision you will have to make after weighing all the pros and cons for yourself. No one but you knows how you felt before cpap, during cpap or after cpap.

Best of luck, whatever you choose.

Donewithcpap.

[zorrro13]

[quote="SharonZ"]I fully believe I was wrongly diagnosed as having sleep apnea,

[socknitster]

Donewithcpap,

If cpap was the wrong diagnosis, what was the correct diagnosis? Did you have a sleep study and what did it say? You can't refute science. Sleep studies may be imperfect, but you can't abandon a treatment/diagnosis without exploring all the options and making certain the therapy you are receiving is optimized. Letting sleep apnea go without treatment is a very dangerous path to take as I mentioned in my last post. It is not something I would take lightly--nor would I risk encouraging others to follow me.

I have to say I wonder about your own committment to this "misdiagnosis." Since you are still here looking for answers at cpaptalk it seems to me that even you are not convinced that you were misdiagnosed. And if your motive here is to put seeds of doubt in troubled cpap'rs heads I worry even more. Cpap therapy is hard enough without someone trying to put some conspiracy theory twist on it. Trying to convince people that they may have been misdiagnosed instead of helping them to optimize and accept treatment could be a deadly sin.

Have I ever wondered if maybe I don't actually have apnea? There were times--yes--but the science that I see every time I download my smartcard tells me that it is all worth it.

Seeing my blood pressure reduced to low-normal even during the late stages of pregnancy doesn't hurt either (especially when it was high normal or requiring bp meds most of my adult life until now--and suffered pre-eclampsia during my last pregnancy).

Having my fibromyalgia-like-symptoms dissappear within weeks of treatment was also reassuring. Being able to think clearly for the first time in a long time, well, that was the kicker. I'll use cpap for the rest of my (hopefully) very long life if I have to because sleeping well and having an optimized life is worth it.

Is cpap a hard pill to swallow? Yes. Did it take me a long time to accept it, optimize it, get used to it? Yes. I found the help and advice I needed here and with health care professionals.

I sincerely hope I haven't misinterpreted your intentions. I really hate to judge--and if I have please accept my most sincere apology.

I wish you well on your path to healing and hope that if cpap isn't the right therapy for you, that you do indeed find the right one. As I mentioned, even with apnea there is more than one treatment modality. If cpap is absolutely not a possiblity then there are oral devices as well as surgeries. For me, as a matter of fact, a tonsilectomy incredibly decreased the severity of my apnea and brought my required pressure down from 16 to 10--a large leap in terms of comfort with the cpap.

So, don't let denial hurt your health a moment more. Be proactive in determining what exactly it is that is needed to make you healthy.

Jen

[NeurosurgeryNP]

CPAP pressure needed to keep the airway open is not related to the degree of sleep apnea you have.

A person with severe sleep apnea may only need a pressure of 6-8 in order to effectively treat their apnea.

[shortbus]

Excellent post socknitster, I agree with you fully.

[lifeartist59]

I have to say that too many people posting here jump on others when they say they feel that they were misdiagnosed. After all, the testing is only as good as the people doing the test. I slept ( they say) about an hour. I do not recall ever losing conscienceness but perhap I did since they said it. Due to the lack of usable data, they said I probably would go lower with my oxygen level if I slept more. My levels never were below what is considered normal during the test. I had a lot of hypoapneas, but I also had a lot of post nasal drip from the wires tickling my nose and I kept holding my breath so the tech would not come and and remark or complain that I was coughing. I am certain some of these hypoapnea events were due to this since my apap give me the chance to replicate it and does exactly that. I have decided to request a test at a different place next time I am due because though I feel I have some apnea, I have little confidence in the results. My 'suggested pressure' was 11, yet with an apap my average is just above 7. I sleep on my stomach or side almost all the time, yet the tester insisted on me laying on my back. Again, the test can be flawed with things like this so maybe some of these people have valid points. I'd hope that they go for second opinions before giving up.

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CPAPopedia Keywords Contained In This Post (Click For Definition): APAP

[Gerald]

James.....

The purpose of CPAP therapy...is to make sure that we keep our blood oxygen saturation levels up where they should be....while we're sleeping.

The saturation level should stay at 93% or higher throughout the night.

Unless you test yourself over a series of nights....using a recording pulse-oximeter.....you can't be sure of your diagnosis. CPAP and how you "feel" will help you make a pretty good guess......but, if you REALLY want to know, an oximeter is the only way to get a quantitative answer.

Gerald