Craziest things you have heard...

[ProfessorSleep]

I'm new here, and hope that introducing this topic isn't out of line. But in the short time since I've been diagnosed and on CPAP, I've come across some really strange comments that demonstrate the misunderstanding that many people have about sleep apnea. Some of this comes from colleagues in health care (Be afraid! Be very afraid!). Anyway, I got two such comments today and thought it might be interesting and enlightening to share some experiences. Snappy responses would be particularly appreciated!

Today's entry: A nurse coworker telling me "Oh, I'm sure you won't have to use that machine for long."

A friend, when I told her I had been diagnosed with sleep apnea, said: "What? Gee, that sounds painful. Does it hurt? How long before you get over it? "

I'm guessing you all have some stories to share, too. Or maybe I just hang out with the wrong people?

[WAFlowers]

I've been asked, more than once, what medicine is prescribed for apnea.

As if we could take a pill and be magically cured!

[peg]

My 73 years young father says "there's nothing wrong with you that isn't wrong with the rest of us. When you get sleepy take a nap!" Bless his heart!
I am descended from a long line of nappers.

[Jan in Colo.]

From my dear husband...yes, in the medical field...who has never really had a "medical condition" and has no CLUE!

After the FIRST NIGHT with CPAP:
(and I have SEVERE apnea...AHI of 85 with 77 arousals per hour)

"Well, okay then. Feeling GREAT now?"

Me: "Well, no honey...I'm hoping in a few WEEKS of treatment I will be feeling great though!"

Geez loueez.

Jan in Colo.

[Sleepquester]

A supposed researcher once asked on a message board: "When did you first contact apnea?" Hmmm.... As if apnea were a communicable disease.

[WAFlowers]

Don't get to close to me (or any of you) or you might catch apnea! .

[Sleepless on LI]

Boy, was this a great thread. I enjoyed every one of those posts. But it shouldn't be surprising. Think of how many doctors there are out there that don't know the first thing about apnea and then it shouldn't shock us that the general public knows virtually nothing about it, either. I have a feeling that it's going to change in the very near future as medicine is finally investigating and learning that a lot of unexplained conditions come as a result of having SBD's.

Sorry to say, I was the one who asked my primary care physician, who I adore and think is USUALLY a terrific diagnostician, if she would refer me for a sleep study. She never put the links together and realized that sudden increased BP over the course of two years from having low BP all my life, exhaustion, fatigue and migraine headaches, not to mention I told her I have trouble sleeping every night of my life, could be due to OSA. All I guess we can do is get the word out there to as many people as we can and do the educating ourselves until the doctors and healthcare professionals learn more about it themselves...or should I say take an interest in it and see how important a topic it is to educate themselves about.

I'm very serious tonight. What's wrong with me???

[Jan in Colo.]

I also had to ask for a sleep study. I was in the hospital for a hysterectomy and the nurses were flipping out every night over how low my oxygen levels went (50's and 60's). I actually had TWO surgeons rounding on me everyday--a GYN and a plastic surgeon, since I availed myself of the opportunity and had a tummy tuck done at the same time. And my HUSBAND is a surgeon. Not one of them made any suggestions about my oxygen levels, lol.

I went home after surgery and called my internist and scheduled a sleep study for six weeks after my surgery (which was the predicted total recovery date for the surgery).

And sure enough, at at the sleep study, the RT came out and said, Honey, you are a TRAIN WRECK! SEVERE, SEVERE sleep apnea. Who knew?

Jan in Colo.

[Sleepless on LI]

Hopefully the medical profession will now start to wake up to this disorder and realize how they can really help patients by identifying this as their true problem creator and help them solve a lot of their health issues.

Jan, those oxygen levels are incredibly low. I hope the therapy makes it a thing of the past for you. Do you notice a discoloration in your nails, by the way?

[Jan in Colo.]

Yep....aren't those really low? The GYN doc actually discharged me with a shrug...saying, ahhhh, I bet she does that same thing at home, no big deal. Well, that certainly wasn't what the nurses thought when they all gathered in my room staring at me in the middle of the night like I was some kind of freak!

I am feeling better...not totally, all the way, I don't think, not yet...but definitely better. And maybe some brain cells are awakening from their deep sleep. Besides the overwhelming, overwhelming fatigue, I've been feeling like I'm losing about 10 IQ points per year and don't have much farther to go! I USED to be intelligent...don't know if I can say that at this point in my life. So I hope the brain cells are sleeping and not dead...

Can't tell you about my nail color...I've had acrylic nails for years and years. But my lips certainly aren't blue or anything....I'm a somewhat darker skinned caucasian with blue eyes. I look alive at least, but I do love my naps.

Jan in Colo.

[cornpop16]

I am a young 25 yr old female and my friends who are all healthy as horses kept bugging me to stay out with them all hours of the night even though I could barely stay awake! Even after I was diagnosed and explained it too them numerous times they still bug me, lol.
I have also been told..oh it's no big deal, you'll get better in a few days
lol...we'll one can only hope right
Debbie

[Fatigue Fighter]

[quote="Jan in Colo."]Ithe nurses were flipping out every night over how low my oxygen levels went (50's and 60's).

Boy, I can relate. Mine dipped to 62 and it freaked my pulmonologist. He kept saying.."I've never seen that before in just sleep apnea". Okay.....so how am I supposed to respond to that????!!!

And yes, I've had blood pressure increases for the last several years and my PCP just kept increasing the dosage and never once suggested a sleep study! I thought my fatigue was just stress, so even I was surprised when my pulomonologist told me I needed to get into a sleep study. How did he know? And, why is it always a pulmonologist (or the patient themself) that usually figures it out?

Better advertising among the physicians is certainly warranted. I like Bill Flowers earlier suggestion on another thread, "Friends helping Friends" where he describes how he tells others about sleep apnea. Getting the word out is definitely needed.

Let's see now...the original reason this thread was started....strange responses to Sleep Apnea. ....Ah yes, the time a co-worker said, "can't you just get an operation?" No thanks.

FF

[Sleepless on LI]

But my lips certainly aren't blue or anything....

Jan, thank God for that one!!! That story I wrote about my son who's an RRT (just passed his registry test-yea!) saving that man's life? His oxygen level was 47 and he was unconcious and at death's door. Which leads me to believe our bodies handle things differently as you say you go into the 50's. I would be interested to hear what they are now that you've been compliant with your treatment for the OSA. Like everything worth waiting for, though, I'm sure it will take a little time.

And I can totally relate to what you said about thinking you were just losing IQ points. It feels great to finally feel like the old brain functions again. I worked with a lawyer yesterday who I've know for about 14 years and he even said to me, as I hadn't seen him in about a year, that I look and am acting so energetic. I told him that I was diagnosed with this and was on treatment since the beginning of June. He was impressed, which made me feel so good.

And, FF, I also thought my fatigue was due to stress and that the stress stopped me from having a good night's sleep every night. I thought I was just one of those people who perhaps stress came out in physically rather than recognizing I may be overstressed. I felt either that or something physical, like a sore back or shoulder, was keeping me up, causing me to be tired, causing daily extreme fatigue.

Thank goodness we've all been accurately diagnosed, even though some of us have to suggest the sleep studies ourselves.

[ProfessorSleep]

Obviously a lot of us can relate to these stories! My primary care doc is really good, I think. I purposely didn't tell her what I was experiencing because I didn't want to do the CPAP thing. Besides, I've been living with this for 20 years or so and, naw, it really couldn't be me. I don't fit the typical profile. I hope now that health care is learning that the typical profile is only a small part of the picture. I have to laugh that when I finally did go for a sleep study I told the sleep doc my biggest fear was that the study wouldn't be diagnostic and I wouldn't get the CPAP. It had gotten so bad by then I was truly desparate for help. Was that worry ever misplaced! AHI 92, O2 down to 80, PLM 36, arousals >80/hour. Sheesh! I am amazed I was able to do anything! Now I just have to deal with the fools who still think it's funny that I have this.

I agree things likely will get much better in re: diagnosis in the future. Sleep labs are popping up all over the place, it seems. There's a lot of money to be had in treating sleep disorders, and that often drives the health care market. Fortunately, though, this may work to the benefit of the many people who truly need assistance. It also should stimulate more research and product development. Maybe someday we'll have CPAPs that look like IPODs!

Crazy thing I heard yesterday: "But you don't look like you have apnea?!"

Yup, we've got a lot of educating to do!

[Sleepless on LI]

Professor,
That must have been good for a laugh, "But you don't look like you have apnea?!" But, hey, then again, who knows? Maybe this person meant you don't look like a walking zombie who never gets any restful sleep, is fatigued beyond belief and usually can't construct a sentence that has any rationale behind it as your brain is half-asleep from the oxygen desats you've been living with? Maybe that person is smarter than we think???

Nah, I doubt it...probably just a stupid comment, like the others.

I'm sure, too, though, with all the new "publicity" that will happen with, as you say, sleep clinics popping up all over the place and this becoming a future trend in healthcare, at first a lot of people are going to think it's a money-making tactic to suck more patients dry of their funds and unnecessary, until they or someone they know ends up being found to have it and gets help. I am really glad this is becoming something that the medical profession is finally opening their eyes to as a cause of many people's health issues. And we can only pray that one day our machines are the size of these mini iPods...