CPAP torture

Several years ago, I was diagnosed with low thyroid function and put on medication. The thyroid specialist sent me to the sleep lab a few days after seeing me...why? I don't know!
That's when my Hell began. They told me I had sleep apnea and I proceeded to try 5 different masks and devices over maybe a three month period. It was the worst experience of my life. I would actually cry every night when it was time to go to bed.
I was constantly sick with sore throats, headaches, congestion...all because of that horrible CPAP.
Before that, I slept fine. And, once I started taking thyroid medication, I was not longer tired during the day.
They finally decided to leave me alone but, now, 16 years later, a heart doctor (and my heart was tip top shape!) asked if I had ever been tested for sleep apnea.
Now, I am terrified they will put me through that again. Seriously, 16 years on thyroid medication and I have maybe had a nap three times...in 16 years.
Sorry, but I think the sleep lab is a scam to sell equipment.
Does anyone have any advice on how I can actually avoid going back to the sleep lab?

Mary

you may need psychological support as well, for a successful outcome with cpap. it sounds like you couldn't get the right mask. they are better now than 16 years ago

I wouldn't rule out the possibility that you do need cpap treatment, just because you aren't sleepy during the day. That was not one of my symptoms either. I did awaken numerous times to go to the bathroom throughout the night, and I would awake suddenly in a panic. In retrospect, I think I had low oxygen levels, called Hypopnea, which is my main issue.
https://en.wikipedia.org/wiki/Hypopnea

Even if you feel okay, if you aren't getting proper oxygen while sleeping, it could be harming your body and brain. I consider it a small price to pay to avoid serious illness and disability down the road.

Have you tried a nasal pillow rather than a full face mask? I think mine is quite comfortable.

Go back to the sleep lab...wouldn't you want to know if you are endangering your health. Think of your family. It's not a scam.

The CPAPs are smaller and quieter than they were sixteen years ago. Also, there is a much greater selection of masks. They even make "automatic" CPAPs that will raise the pressure in the event of distress.

You're experience of sixteen years ago might not be the same experience that you're having now.

BTW, why did the heart doc say to be tested? Was it a large neck size? Was it something on your tests? Was it something else?

My brother could not get to sleep during his initial sleep study, so they sent him home with a take-home test.
There are several kinds. Do ask your doctor about it.

Although in my experience getting treated for sleep apnea was the single best health choice I ever made, it is a choice. You have the choice to say no thank you, I am not interested in having that test done. I always laugh at the phrase Doctors orders as applied to the patient. Doctor can recommend but cannot order me to do or not do anything. Might have to remind the Doctor of your rights as a patient.

Muttmom wrote:Sorry, but I think the sleep lab is a scam to sell equipment.

you'd be flat out wrong about that.

The real scams are the "alternative" therapies, like anti-snore gadgets.
Snoring is a common SYMPTOM of apnea. You cannot prevent harm by only addressing the effect.

It sounds to me like half (or more) of your problem back then was that someone told you to use the humidifier without explaining that you might not need it depending on local climate conditions and that if you did use it unnecessarily you could generate symptoms of a cold and/or congestion! Many of us never use it at all because of where we live, tho' others need it all the time. I think that if you try Cpap again knowing ahead of time when (and when not) to use the humidifier you could feel so much better starting out than you did in the past. It's not 'therapy', just a facilitator for those who feel the need of it, maybe only part of the year if at all.

The good news, when you die, you won't have to worry about anything again. Jim

it's then jet trails in the air i tell ya. fluoride and vaccinations are to make us compliant and take our guns.. I luv a good conspiracy theory.

Muttmom wrote:Several years ago, I was diagnosed with low thyroid function and put on medication. The thyroid specialist sent me to the sleep lab a few days after seeing me...why? I don't know!
That's when my Hell began. They told me I had sleep apnea and I proceeded to try 5 different masks and devices over maybe a three month period. It was the worst experience of my life. I would actually cry every night when it was time to go to bed.
I was constantly sick with sore throats, headaches, congestion...all because of that horrible CPAP.
Before that, I slept fine. And, once I started taking thyroid medication, I was not longer tired during the day.
They finally decided to leave me alone but, now, 16 years later, a heart doctor (and my heart was tip top shape!) asked if I had ever been tested for sleep apnea.
Now, I am terrified they will put me through that again. Seriously, 16 years on thyroid medication and I have maybe had a nap three times...in 16 years.
Sorry, but I think the sleep lab is a scam to sell equipment.
Does anyone have any advice on how I can actually avoid going back to the sleep lab?

Mary

If you are sleeping well AND you have no heart issues then I know of no reason for you to be tested for sleep apnea. If you have heart arrhythmia issues then you should be tested.
The answer to your last question is to simply ask why.

Just because you had a bad experience with CPAP for whatever reason, it is not horrible. I view it as wonderful - although the first few months were rough.

So very sorry your first CPAP experience was torture! I wasn't on CPAP back then, but I've done a bit of research and I do know it's changed significantly since then. Also, much will depend on your doctor and DME, who tend to simply tell you "this is what you need" - it's rare to get a doctor and DME who will actually work with you to ensure you have the correct mask *for you* and that your pressures are right *for you*.

When I went to the sleep lab, it was NOT because I was having trouble sleeping. I slept like a rock! Hit the pillow and I am out until the alarm. In my case, my wife had trouble sleeping and I snored - I had a sleep study because *I* was ~her~ trouble sleeping! The results showed a fairly bad apnea - AHI of 43-ish, and O2 desats down to 77.

I'm in over 3 months now, and this has not been a completely smooth ride! Lotsa mask and sleeping position issues. But when I did my research and found out what this was doing to my heart and my health, I had to determine that I was going to ride it out. The alternative is to slowly deteriorate until that fateful night when it would all collapse. That night might still come, and there may be nothing I could do to foresee or forestall it. But until then, not breathing well and overstressing my body is not in my plans.

As others have said, there are home sleep tests that are almost as good as a lab test. Almost, because to really accurately determine your sleep state, you must be wired for brain waves. But the home tests are pretty good for breathing issues and blood oxygen levels.

First, though, as has been stated previously, I would ask the doctor "what did you see that makes you order this test?" And don't let him go until you're satisfied. But just because you feel you sleep okay - and you might - it doesn't mean everything else is okay, and there just might be unseen issues about your sleep that are affecting your heart and health. Do some research on the adverse health effects of sleep apnea - it might convince you that a sleep study can be a necessary evil.

Ed

EdNerd wrote:When I went to the sleep lab, it was NOT because I was having trouble sleeping. I slept like a rock! Hit the pillow and I am out until the alarm. In my case, my wife had trouble sleeping and I snored - I had a sleep study because *I* was ~her~ trouble sleeping! The results showed a fairly bad apnea - AHI of 43-ish, and O2 desats down to 77.

and, there it is...

many, if not most, people with bad OSA side effects *THINK* that they are "sleeping well".

Sorry TedVPAP.