OSA - The Rodney Dangerfield of afflictions

paradigmer · Post by **paradigmer** » Wed Mar 19, 2008 3:10 pm

"I get no respect" -

In my very brief experience with OSA, it seems that it gets very little respect or sympathy. Maybe it's just not well known.

Most people are not sympathetic or should I say realize just how debilitating chronic lack of sleep is.

It feels like if I told somone "I have cancer", people would be more understanding. However, when I say I have sleep apnea and thus am very fatigued, have little energy etc., it's like they just don't get it.

It seems as if you said, "I'm tired, because I have X (insert anything else)" people would be more understanding.

RipVW · Post by **RipVW** » Wed Mar 19, 2008 3:17 pm

Yes, and I think this is due largely to ignorance, but I hope/think that is changing and will be better with time as more and more media coverage is happening--60 minutes, DateLine . . . Eventually, everyone's going to know more and understand just how serious this condition is.

alnhwrd · Post by **alnhwrd** » Wed Mar 19, 2008 3:52 pm

Lots of reasons for this. Ignorance is the first. It is also because OSA, although it causes lots of noisy snoring, is a "silent" killer. How many undiagnosed people have died of a heart attack in their sleep brought on by an attack of OSA? I am certain that my father had it, and that it greatly contributed to his CHF and high blood pressure.

I really don't care if people are sympathetic, unsympathetic or indifferent. I and those who I care about know what I have and that I am being treated for it, and that I am lengthening my life every night I sleep with my CPAP. That is what matters to me.

SleepGuy · Post by **SleepGuy** » Wed Mar 19, 2008 5:19 pm

If only Chronic Sleep Deprivation were the worst of it. Most doctors think of OSA as a sleep disorder. It's much more. The effects of oxygen desaturation are worse: death, high blood pressure, diabetes, stroke, heart disease, depression, etc.

roster · Post by **roster** » Wed Mar 19, 2008 6:50 pm

paradigmer wrote:.........it's like they just don't get it. ..........

They don't.

Even many doctors still don't get it.

Even millions of undiagnosed osa sufferers don't get it. I know a few of them.

All those years I read and talked about diet, exercise, cholesterol, isoflavonoids, antioxidants, vitamins, etc. - I should have ignored all this crap and started cpap treatment - I would have been much healthier today!

paradigmer · Post by **paradigmer** » Thu Mar 20, 2008 6:26 am

One of the ways I've found out that people don't "get it", is that they'll continue to ask about my mood or ask me to "cheer up".

I'll explain a thousand times that my mood is fine, it's just that I'm completely drained of energy--so that's why I "appear" to be in a bad mood. They mistake exhaustion with mood.

Another area is with treatment. One of my friends swears that I don't need to get on CPAP therapy--I just need orthopedic pillows and this "snore spray" they sell at Whole Foods. lol

And, I hate to say it, but my wife is the worse one of the bunch in terms of understanding. Last night she kept telling me that I don't really need any machine to treat my condition and that I just need to look for a natural solution.

jasper · Post by **jasper** » Thu Mar 20, 2008 6:38 am

I can remember when I visited the doctor several years ago (maybe 15?). My main complaint was "I'm really tired all the time". I could barely wait to get home from work and hit the couch for a nap. His response was "get more sleep".

Fast forward to today, I have a different doctor, and her husband has OSA, so she is very attuned to it. She listened to my symptoms and immediately set me up for a sleep study. She has been absolutely supportive in offering to write a prescription for a new mask or APAP machine etc. She trusts that I have enough knowledge of OSA to do the right thing. Once again, thanks to this forum.

For all you purists, don't worry, I actually did get an Rx from my sleep doc, so I'm not off doing wild and crazy things.

Yes, there are those who don't get it, but that's changning.

Sideswiper · Post by **Sideswiper** » Thu Mar 20, 2008 12:23 pm

It's true that it is a shame that more people aren't aware of sleep apnea.

However, I don't need anyone's sympathy... I've got a problem, I'm dealing with it, and it's only the business of those very close to me. Even if they are confused, who cares, they aren't the ones responsible for my happiness and comfort... I am!

DreamStalker · Post by **DreamStalker** » Thu Mar 20, 2008 12:29 pm

paradigmer wrote:One of the ways I've found out that people don't "get it", is that they'll continue to ask about my mood or ask me to "cheer up".

I'll explain a thousand times that my mood is fine, it's just that I'm completely drained of energy--so that's why I "appear" to be in a bad mood. They mistake exhaustion with mood.

Another area is with treatment. One of my friends swears that I don't need to get on CPAP therapy--I just need orthopedic pillows and this "snore spray" they sell at Whole Foods. lol

And, I hate to say it, but my wife is the worse one of the bunch in terms of understanding. Last night she kept telling me that I don't really need any machine to treat my condition and that I just need to look for a natural solution.

What exactly can be more natural than oxygen?

BarryKaraoke · Post by **BarryKaraoke** » Thu Mar 20, 2008 12:33 pm

paradigmer wrote:And, I hate to say it, but my wife is the worse one of the bunch in terms of understanding. Last night she kept telling me that I don't really need any machine to treat my condition and that I just need to look for a natural solution.

Wow...thats rough! Thankfully my wife understands/supports it fully as her dad had severe apnea for years before getting on CPAP late in life. He died from a massive heart attack, weakened by years of neglect. She loves it because she can finally sleep too!

Unfortunately, some people (and spouses) have a VERY hard time with medical "stuff" of any kind and view CPAP as being a slave to some horrible foreign device. There was a spouse on another forum who recently went ON and ON about how much she "LOATHED and DETESTED her husbands repulsive machine".

You hit the nail on the head. Some people just don't get it!

Pineapple · Post by **Pineapple** » Thu Mar 20, 2008 2:47 pm

paradigmer,

You're only 2 days on the therapy and having problems with it. You really don't need to listen to her negative comentaries. The next couple of weeks will be hard as you adjust to CPAP and let your body start to heal. The worst part is most of us don't "see" any improvements for a couple of weeks at best - all the healling in the first couple of weeks happens on the inside. So be ready for some "I told you this wouldn't work"s and let it go right out the other ear.

The thing you need to consitrate on is getting the therapy working and let it do it's job. This is an all or nothing situation - if you don't stick with it there's no prize at the end.

BigMoose · Post by **BigMoose** » Thu Mar 20, 2008 3:08 pm

paradigmer,

Take a piece of thinwall plastic tubing, like 1/2 inch electronic shrink tube. It will lie flat, and when you suck on it with your mouth it won't let the air through. You can show your wife, that it is similar to your airway. It is collapsed when you are asleep and won't let the air into your lungs. Place your APAP on the end of that tube, and it blows open, just like your airway does under CPAP/APAP, and now you can breathe! Walla proper O2 for your system.

Show her it is a physical phenomena, that needs positive airway pressure for a solution...

If you want a piece of that tubing, PM me your mailing address, and I'll send you a couple of inches for the demonstration.

Hang in there. Thankfully my wife is supportive, and my kids too! They are all trying to help me accept my new "friend" on the nightstand... every day they tell me how much "brighter" my eyes look and acknowledge that I am doing more in the evening then just lay on the couch or floor. ... very motivating for me, as my Dad was always so tired that he came home from work, had dinner and fell asleep on the living room floor. He snored so bad, Mom let him sleep there. Dad passed early in life at 62 with a nocturnal coronary... me thinks there was a connection with apneas and hypopnias...

Regards,
Dave

motogary · Post by **motogary** » Thu Mar 20, 2008 6:58 pm

Maybe the problem is the perception that "everyone snores", at least that's what I hear the most. It would help if there was a cure better than wearing that damned mask EVERY night.

roster · Post by **roster** » Thu Mar 20, 2008 7:01 pm

motogary wrote:...... It would help if there was a cure better than wearing that damned mask EVERY night.

There is a bunch of money to be made with that "better cure" and I am counting on some innovative souls to make that money soon. I am ready to fork over a big chunk if the "cure" is a good one.

sleepyinaustin · Post by **sleepyinaustin** » Fri Mar 21, 2008 11:32 am

Wow. I feel lucky that my husband is so supportive. He actually nagged me to WEAR the mask when I started therapy and had trouble adjusting to the machine. Sudden death runs in my family and he is terrified that he will wake up and find me not breathing. The good news is that you do adjust fairly quickly - just last weekend we went to our daughter's house - I packed up the 'Vader and then left it in the bedroom! Didn't sleep all weekend without my trusty little machine. Been a hosehead about 5 months now.

Mask

Mask

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OSA - The Rodney Dangerfield of afflictions

OSA - The Rodney Dangerfield of afflictions

Re: OSA - The Rodney Dangerfield of afflictions