Could you or a loved one have Sleep Apnea?

[ZZZzzz]

I have one reason for doing this: To help others recognize possible symptoms.

My free fall started in July 2006. I noticed my muscles were getting sore and stiff. Once upon a time, I used to be in Gymnastics. Now, it hurt to bend over and put my treadmill shoes on. The muscle pain and discomfort got worse. Just changing positions in bed or stepping into the shower was painful.
One morning, after I parked my vehicle at work; that was it.....I hobbled in to the office and made a Dr. appointment. This was just not normal.
On Nov 16th 2006, I handed my Dr. a list of symptoms that I had compiled that were new to me that year.
I said: 'Please, my husband's begging you; you gotta help me figure out what's wrong with me.'

This was my list of symptoms:

stiff, sore muscles
tight muscles/charley horses in calves
wake up during the night: mostly too hot/occ. sweaty/one time shivering
wake up arms and hands completely numb
vivid dreams & nightmares
exhausted
moody to the nth degree
crying jags
angry outburts
can't stay focused
depression
poor judgment
personality changes
aggressive driving
use of profanity
disorganized
insomnia
anxiety
poor concentration
memory lapses
clumsy
lightheaded
brain zaps - that's what I call them
weight gain
too hot
tripping (scuffing) when I walk
bursitis (foot)
chest tightness
dry mouth/hoarseness
possible easier bruising
rising blood pressure
rising blood sugar
bleeding (when getting allergy shots)
sensitive startle reflex
easily disturbed sense of balance
poor posture; slouching

My regular doctor heard of my frustration about not sleeping well.
My allergist got complaints of my dry throat and hoarseness.
My chiropractor heard of my sore muscles.
(You get the picture.)
None of my doctors saw all of my symptoms on one sheet of paper until now.

It really pays to know your own numbers.
My blood pressure was always about 90/62 and suddenly it would be 128/80.
Nurses would tell me that my blood pressure was within normal limits, but I knew better and I told them, "No, that's high for me."
My fasting blood sugar came back 89 in May '06 and 99 in Nov '06 - - again, for ME, that's high.

Looking back, I can see how I would use compensatory behavior.
I would drink excessive amounts of coffee in the morning to feel normal.
Sometimes I would resort to Margaritas in the evening to come back down from the coffee.
A friend at work who has OSA said he would never sit down after he got home.
Once he sat down, it was all over and he would fall asleep.
(This would net snide comments from his wife.)
Symptoms and behavior can be tricky and interlaced to sort through.
I'm sure to some degree caffeine contributed to my higher blood pressure and edginess.

I hit an all time emotional low and found myself thinking about suicide.
The torture was 24 hours a day.
I suffered all night long with nightmares and insomnia.
I suffered all day long with exhaustion and wondered why I felt so horrible.
I knew there was something wrong but I didn't have a name for the monster.
Nobody seemed to get how emotionally, mentally, and physically wasted I was.

I NEVER had the classic daytime drowsiness.
My husband cracked the case for my Dr. and I by remarking about my sleep one night that I sounded like I was "struggling to breathe."

My OSA diagnosis was long, torturous, and expensive:
Wait to see my regular Dr.
Wait for their blood results
Wait to see the sleep doctor
Wait to get into the Sleep Study
Wait to get the results back from the study
Wait on insurance
Wait on having the CPAP machine delivered...

I thought the CPAP would be my little miracle machine but after using it for 45 nights, I'm still trying to get it right.
I'm certainly much better off than I was and I owe an immense thank you to the collective experience and compassion from the people that put their heart and soul into this website.

I may owe my life to my husband, friends, and family.

Whoever would have thought that sore muscles would have led me to a diagnosis of Obstructive Sleep Apnea?

My sleep doctor said this disorder was genetic yet few would argue than extra weight aggravates the condition.
(Both of my parents and one of my three sisters has Sleep Apnea.)
Now, I quote my sleep doctor: "Thanks to higher blood sugar levels and high night time Cortisol levels, Sleep Apnea encourages and causes weight gain, especially belly weight."
It's so cruel that everything about Sleep Apnea causes Sleep Apnea to get worse.
Is this another case of hereditary loads the gun and environment pulls the trigger?

I'll be honest...I'm in total denial about being on "The Machine" for the rest of my life. I'm waiting for surgery or weight loss to cure me. I'm floating in a pool of DENIAL.

It's getting hard to type through the tears so I'll close for now...

That's my story and it's sticking to me. # : )

-Bev

[Rabid1]

Bev,

Your story has reached me on many levels. I'd bet not one of us that reads it will fail to identify with you.

For your own peace of mind, please accept the CPAP for what it is; a minor inconvenience that will reward you with a healthier life.

Best to you.

Rick

[LoriD]

I never knew why I needed naps during the day; I just accepted it as part of my weight problem, a side effect of my medications, a part of my cardiomyopathy, or an effect of my hypothyroidism. I knew I snored; I was either told that I did ("you can rattle the windows!") or there were times I'd woken myself up doing it, especially when I'd had a cold or something like that.

Even when I did try to go to bed earlier, I was still tired in the morning many times, and I had no idea why. For awhile when I did begin losing some weight, it did go away, so I had attributed it to that. But then it had come back.

Even doing something such as watching the evening news or reading a book would result in me dozing off within minutes, but still, in the midst of all this, apnea was the last thing to come to mind. I thought it was a disorder that affected old men.

It wasn't until last summer that I was sent to a pulminologist in Pittsburgh as part of a pre-op routine testing that was required by my insurance for gastric lap banding and upper endoscopy surgery that it was recommended that I be sent for a two-part sleep study. I never had one of these done before and had no idea what to expect.

Naturally, I wasn't very thrilled with the CPAP part and only slept about three hours with it there. When it came to the questionnaire concerning if I would use one at home once I was diagnosed with mild to moderate OSA, I replied, "H*LL NO!"

So it was back home, and back to the afternoon naps, at least for awhile.

Once the insurance approved me for my surgery, I was informed by my surgeon's office that I was to start CPAP therapy prior to being scheduled for surgery. Groaning, I made arrangements with the pulminologist's office to set everything up to get a machine, which I thought would mean another trip to the office *GROAN.*

Imagine how pleased I was when the secretary informed me she could do the paperwork right then for the DME and have and RT come to the house within the next week.

True to their word, the RT showed up a few days later and showed me the CPAP machine. To my surprise, it wasn't the monstrosity like I had at the sleep study, but one that was the size of a shoe box, if not a little smaller. He showed me how to operate and clean it, and I couldn't believe how comfortable the mask was once I had adjusted the headgear. I actually slept through the night the first night!

I felt a difference within a week. When it took me 12 hours of sleep before to feel remotely decent (and still needed a nap), I can now get away with about 7-9 hours with a CPAP and get a lot more work done, not to mention my mood and energy levels are much higher. If I feel this well now, I can almost imagine what I will be like once the surgery is done!

[Guest]

Rick,

I've been emotionally bankrupt since I hit SUBMIT on that e-mail and I still haven't stopped crying.
I'm such a great pretender.
I try to hide my tears by crying in the shower or in my car.
I'm the one that makes everyone ELSE laugh; not the other way around.
*Thank you* for the warm and fuzzy words.

For myself, your words make me think this:
"What would I want my own father or husband to do if they had the same thing?"

It's still very, very hard though.

PS - - I absolutley adore your bird/dog picture.

-Bev

[Captain_Midnight]

Hello ZZZZ - -

You saidI'll be honest...I'm in total denial about being on "The Machine" for the rest of my life. I'm waiting for surgery or weight loss to cure me. I'm floating in a pool of DENIAL.


And I felt the same way about a year ago.

My plan was to use the CPAP as a temporary fix, until surgery, weight loss (I'm not even overweight), or a new cure intervened.

Now, I have adapted to the PAP machine so well, that I have no intention of experimenting with high risk surgeries. The PAP is a bit of an inconvenience, but I've gone from hating it to loving it.

Nice list of symptoms, by-the-way. You are an exceptional data taker.

Good luck with PAP therapy. It takes some time, but it does work.

Regards all - - Capt Midnight

[Captain_Midnight]

ZZZZZ

One quick follow up question.

When you described "brain zaps" as one of you symptoms, would you care to elaborate a bit? (Hope this isn't prying.)

Thanks muchly - - Capt Midnight

[Cap't Midnight]

Something's working here on this site 'cause you got me smirking a little bit.
# : )

My good data taking could be chalked up to skillful copy/pasting.
***
I'll do my best to describe the brain zap:
Take the most intense drowsy nod off you could think of...and condense it into yet another nanosecond - - THAT'S the way it felt.
Almost like an electrical hit.
Maybe that's what a normal nod off feels like NOT pumped up on caffeine?
I was thankful when my Dr. didn't have me explain just what a brain zap was.
***
The muscle pain I would describe as when you really work out at the gym hard and you wake up super stiff & sore the next morning...exactly that genre of soreness.
And, if I relaxed or sat down...the muscles would tighten up even more.
It's as if the muscles are in a constant state of contraction.
-Bev

[kteague]

Bev,

Thank you for opening a painful part of your life up for the benefit of others. Those who have tread the depths of where sleep disorders can take you recognize themselves here and there in your words. I'm glad your turnaround is well underway.

A year ago I wouldn't have bet a nickel that I was not going to just slide off the end of the earth into oblivion. I didn't think anyone could possibly feel so bad and survive. Am I completely recovered - no. But I have rejoined life and it's been several months since I wondered if I was dying.

You mentioned wanting others to know. I understand that. Sometimes when I'm around people and listen to them talk about their health, I just know that their health issues are rooted in their sleep.

Sure hope you're feeling better and better every day and that the next symptom list you make you'll be pleasantly surprised to find there's very little to cut and paste.

Kathy

[drbandage]

I have one reason for doing this: To help others recognize possible symptoms.

I like you already!

You've really done a magnificent job of putting words to feelings and experiences that, while painful to recall, remind me of how destructive this problem is. I can very much relate to almost everything you wrote, and I am sure many others on this board will as well. I don't have time at the moment to write anything here that would qualify as sufficiently helpful given the beautifully moving post with which you started this thread. Excuse my brevity, please, but I couldn't just move through this without saying how much your post touched me.

This was my list of symptoms:

stiff, sore muscles
tight muscles/charley horses in calves
wake up during the night: mostly too hot/occ. sweaty/one time shivering
wake up arms and hands completely numb
vivid dreams & nightmares
exhausted
moody to the nth degree
crying jags
angry outburts
can't stay focused
depression
poor judgment
personality changes
aggressive driving
use of profanity
disorganized
insomnia
anxiety
poor concentration
memory lapses
clumsy
lightheaded
brain zaps - that's what I call them
weight gain
too hot
tripping (scuffing) when I walk
bursitis (foot)
chest tightness
dry mouth/hoarseness
possible easier bruising
rising blood pressure
rising blood sugar
bleeding (when getting allergy shots)
sensitive startle reflex
easily disturbed sense of balance
poor posture; slouching

I didn't have the same presentation as you, but I did have many of the same symptoms, noted in red. I did have daytime "exhaustion". This did NOT translate to me or my doc as daytime somnulence, unfortunately. I did have thundering morning headaches that would awaken me in considerable pain far before the alarm would go off, and last for a good portion of the day. Job one: rule out a brain tumor. Once accomplished, "assume the position".

It reminds me a little of that old Jeff Foxworthy bit about "you might be a redneck if __________".
You might be afflicted with OSA if you hope the next traffic light in front of you is red, so that you may again ponder what's so wrong about being prompted to move ahead by a little horn honk, if you can catch a micro nap in the meantime.

My regular doctor heard of my frustration about not sleeping well.
My allergist got complaints of my dry throat and hoarseness.
My chiropractor heard of my sore muscles.
(You get the picture.)
None of my doctors saw all of my symptoms on one sheet of paper until now.

And I am sorry to say that the odd jumble of symptoms does not bring to mind a clear diagnosis to almost any physician, unlike so many other ailments that do. The index of suspicion for OSA is far too low, and my opinion is that raising the level of awareness in the medical community and the public is the most important thing we can do to ensure that OSA does not go undetected. We must demand that fewer people with this disease go undiagnosed.

Nobody thought to screen you, so it wasn't as if the cost of the testing was prohibitive. The problem was OSA wasn't on the radar screen at all when a differential diagnosis was being pieced together.

Walk into the doc's office and say"I've been thirsty a lot lately". Bingo, you have diabetes until proven otherwise.

Walk in and say you have back pain that gets worse at night. Bingo, you have a spinal tumor until proven otherwise.

Walk in say you have noticed some bright red blood in your stool. Bingo, you have a stomach bleed until proven otherwise. It could be just 'roids, but that is not to entertained as the explanation until the stomach bleed is conclusively ruled out. There are almost an innumberable number of such examples in medicine.

Walk in with your laundry list and you will not trigger the alarm for the underappreciated diagnosis of OSA. And even if you did, it would not be likely that there would be any great sense of urgency about it. Because, as SleepGuy has mentioned, the "sexy" statistics are not front and center in the mind of the public and regrettably the medical community is very late coming to party.

I believe that the medical community will look back on this one day in shame when one considers the frightful carnage and the fact that only ignorance stood in the way of better diagnosis and treatment. Doctors are imperfect beings to be sure, and some are no damn good. But, my opinion is that the vast majority of practitioners are in medicine because they take pleasure from providing not only cures, but relief and comfort to those who are suffering.

Some people will postulate about how "easy" it is to diagnose and treat this disease, but that is merely the product of a simple mind looking for a simple solution to a complex problem. With better education and awareness about the prevalence of this disease and the enormous magnitude of the physical, emotional and economic damage that comes with it, will come an elevation of the level of suspicion for this disease, and a better appreciation for the kind of ruin that awaits those who are undiagnosed or untreated.

Right now, any self respecting doc would be ashamed and mortified to miss a diagnosis of diabetes, for example, because of the multiplicity of serious problems that result from this disease if uncontrolled. If you come to a doc with any number of complaints, the assumption reflexively is that you have diabetes until proven otherwise.

Diabetes is challenging, but treatable for the most part, and the consequences of a missed diagnosis are enormous. OSA (and its ilk) needs to achieve that same status in the minds of the public and the medical community.

Take a look at the obvious omission of ailments for which screening guidelines are listed on the American Academy of Family Practice doc's website, and you'll see that the number one problem here is not a cheaper or better way to diagnose this disease, although that undeniably would be beneficial. Underlying it all is the atrocious underappreciation for the prevalence and destruction of the disease.

If you ain't looking for it, you probably won't find it, unless it is as obvious as the nose on your face. (And sometimes even then, the deviated septum is missed!) Some of the screens are cheap, some aren't. What they all have in common is that they made the list.

It really pays to know your own numbers.

My sentiments exactly.

My blood pressure was always about 90/62 and suddenly it would be 128/80.Same here. Nurses would tell me that my blood pressure was within normal limits, but I knew better and I told them, "No, that's high for me."

Ditto, that. If you experience a significant change, it may not be enough to bump you out of the norm, if the baseline was at the bottom end of normal.

My fasting blood sugar came back 89 in May '06 and 99 in Nov '06 - - again, for ME, that's high.

Ditto the ditto.

A friend at work who has OSA said he would never sit down after he got home. Once he sat down, it was all over and he would fall asleep.

Hey, that's me in the mirror!

Symptoms and behavior can be tricky and interlaced to sort through.

Aye, therein lies the rub. You ooze wisdom.

I hit an all time emotional low.
I suffered all day long with exhaustion.
Nobody seemed to get how emotionally, mentally, and physically wasted I was.

Zzzzzz, I am beginning to think we were twins, separated at birth.

My husband cracked the case (what, an informed public can help with the diagnosis, I remark in mock astonishment) for my Dr. and I by remarking about my sleep one night that I sounded like I was "struggling to breathe."

For those who sleep alone, this important observation can be undetected. Same thing if afflicted with PLMD.

My OSA diagnosis was long, torturous, and expensive:
Wait to see my regular Dr.
Wait for their blood results
Wait to see the sleep doctor
Wait to get into the Sleep Study
Wait to get the results back from the study
Wait on insurance
Wait on having the CPAP machine delivered...

I followed this same arduous path, although having a co-morbid condition of PLMD, it took even longer.

I thought the CPAP would be my little miracle machine but after using it for 45 nights, I'm still trying to get it right.

Last night, I cracked triple digits, and I am slowly seeing the signs of a "little miracle". It's a lot of chopping wood to get there.

Effective treatment is not as easy as many assume, if I, as a physician with the resources available to me, have to keep pounding away to get myself adequately treated. For many cases, it need not be so complicated, but for many others the complexity and the potential interplay of both known and unknown neurophysiologic components make it very tough. Not to mention, trying to achieve compliance when battling blowfish cheeks, Sahara mouth, Turkey belly, flatulence, bridge of nose sores, pressure leaks and the like, all the while keeping out a watchful eye that you diligently use sterile technique to achieve daily humidified water changes using only artesian spring water blessed by Pele, lest you acquire a horrible and deadly fungal pneumonia. (Better read the posts, just kidding about the water thing.)

Oh, I forgot to mention the issue of the buggy Smart Card software.

I'm certainly much better off than I was and I owe an immense thank you to the collective experience and compassion from the people that put their heart and soul into this website.

That brings me to the good part. There are a great number of compassionate and knowledgeable people who either are here regularly, or have left archeologic evidence of their prior existence. Derek, are you out there? (Check the post, starting with the lightbulb at the top of the page.) The level of caring and the insight that is available to you through these resources will see you through.

Be discerning in what you read, of course, because opinions vary and and opinion by definition is merely that. Kteague recently posted "Personally, it is my opinion that everything I read (or say) should be considered an opinion unless evidenced."
(Ed. note: she smart).

I may owe my life to my husband, friends, and family.

I have no doubt that you may save the lives and quality of life for many others, as you learn and pass the message along to others. If you get even one person to say, hey, that sounds like my friend Pat, then you may officially take claim to being a life saver. (On the other hand you can save zillions of lives if you are a prodigious and thoughtful poster like Rested Gal, or author a tome as helpful as Mile High Sleeper, or have an outsized IQ and matching compassion like -SWS).

I'll be honest...I'm in total denial about being on "The Machine" for the rest of my life. I'm waiting for surgery or weight loss to cure me. I'm floating in a pool of DENIAL.

Swimming in the river Nile is not recommended. Doctors orders. Certainly a quick dip is understandable, and most of us have done it. It may help you if you can aspire to live in the moment with the idea that you're so dang lucky to be living in this marvelous day and age where someone has invented such a machine that would have been unavailable to your parents generation, all the while reminding yourself that this marvelous machine may indeed not be even needed one day if you do achieve the results you seek through surgery, weight loss, dental appliance, or Divine Intervention.

But in the meantime, thank goodness it is available, considering the alternatives.

Now that I've toweled off from my own swim in the Nile, I get a little antsy thinking about how quickly I could get another machine if this one broke down. I look at that little Black Box with fondness and wonder now, as opposed to the contempt with which I regarded it so recently.

That's my story and it's sticking to me. # : )

Nicely put.

It's so cruel that everything about Sleep Apnea causes Sleep Apnea to get worse.

You got that right. Now, keep moving forward, ask for and receive help willingly, and spread the gospel to those that need to know.

I'm looking forward to hearing a lot more about your story and progress.

Best,
drB

[Rabid1]

BTW Bev, If you & your hubby ever get down this way, we should meet for dinner & totties.

[Julie]

Hi, I'm going to jump in with both feet (and probably find out there's no water in the tub) but something is niggling from your story... the business about your muscles cramping up, and a few other things not necessarily classic OSA symptoms - but I would ask for a referral to a neurologist, as they often have a good little bunch of relatively obscure conditions hiding in their heads that your average GP, sleep doc and others don't (having worked with neuros for years I learned about some of those esoteric things) and while you may well have OSA anyway, it is also possible there's something else going on that has caused some of your many symptoms. Worth a try?

[drbandage]

something is niggling from your story... the business about your muscles cramping up, and a few other things not necessarily classic OSA symptoms - but I would ask for a referral to a neurologist, as they often have a good little bunch of relatively obscure conditions hiding in their heads that your average GP, sleep doc and others don't (having worked with neuros for years I learned about some of those esoteric things) and while you may well have OSA anyway, it is also possible there's something else going on that has caused some of your many symptoms. Worth a try?

Julie makes a good point in my opinion. It does seem unlikely that OSA and sleep deprivation would cause all of the symptoms you mention. Possible, I guess, but better to err on the side of caution. I think the Neuro folks may be a good referral, but might also consider Rheum if you haven't already seen them. (I forget if you said that, and I'm too lazy to go look!)

drB