How long with symptoms before diagnosis?

rested gal wrote: I ran into that mindset the other day, talking to a friend who said they snore, wake up multiple times during the night, and has multiple health problems including congestive heart failure!

No matter how many ways I explained what might be happening and why it should be checked out, the person kept saying, "I don't think I need a sleep study. I sleep enough hours even with waking up a lot. I just go back to sleep. I don't think I need something to make me sleep better, because I already sleep ok."

I'm not sure what could be put on the front of a brochure to catch that person's attention. Oh well, we do what we can.

Unfortunately, this is when maybe only a knowlegeable doctor can help. Most are not so, as we've all discussed. But it may be that only a GOOD doctor with an insistent, logical demeanor can get through to someone like your friend. How can a sufferer take this seriously if their own doctor doesn't? Especially if they're also suffering from health issues like those which are likely related to OSA.

It's likely easier to convince someone who exhibits mostly just exhaustion, and not other severe health issues. You can make a strong argument concerning the exhaustion. But it's hard to convince someone about sleep apnea when they're facing congestive heart failure.

I know someone who is going through treatment for congestive heart failure. His wife is at least very knowlegeable about sleep apnea, fortunately. And she is insisting that once he's stabilized enough to deal with the OSA treatment, that he start. I suspect he got no such advice from his doctors.

Linda

Well, how many of you have had a clearly defined apnea event while you were awake?
That's how I knew. For about 6 years or so, strange things had been happening. Such as waking up almost always on my stomach, with my chin resting on my crossed hands on top of my pillow. Sometimes, even propped up on my elbows with my chin on my hands. My back and neck would be screaming from being arched like that. Or I would fall off my propped elbows/hands and that would startle me awake. My husband would wake and see my position and tell me I was sleeping like that.
Little did I know I was unconsciously doing that to open my airway.
A few times when I napped on my back, I would have nightmares of being smothered. I'd shoot up gasping, but thought it was a gasp caused by a nightmare, not a nightmare caused by my suffocating.
After 6 or so years of this, I was sitting quietly on the couch one day, with my head leaned back, watching television. Every muscle in my whole body relaxed, almost ceased to exist. I was seconds away from sleep, but was NOT yet asleep and my eyes were still open. Suddenly my throat closed off and then I made that horrible "SNORK" sound that we apneacs make when our throats close, dozens to hundreds of times to all of us at night.
(maybe we all could get together and create a new comic strip named "Snork" about people like us.) Liam could be the writer...? ya think?)

I have always had a medical bent and read any article that comes way way on all things medical. I knew what sleep apnea was. When I made that "snork", 2 seconds later I knew I had OSA. Then, as I thought back, I had a big AHA! moment when I connected up my weird sleep habits.
Yes, my husband had told me I snored. (that started about the age of 40)But he snored, too, but didn't stop breathing. So I didn't think anything about the snoring. I called my doctor, told him, he believed me and scheduled the study. That was years ago and I am just now getting ready to go on my cpap. By now, you've read enough of my apnea history to know why it's taken so long.
Meanwhile, I've had cardiac ablation surgery for irregular heartbeat (Vtach) where they thread things through your arteries to your heart to burn spots on the bad nerve that's causing the arrythmia) arthritis, breast cancer, and tore my rotator cuff. I wonder if poor oxygenization has anything to do with any of that. Probably not the torn rotator cuff, but maybe even then my muscles/tendons were not healthy from poor oxygenization? Probably not the arthritis. I do know it can effect the heart, and who knows about cancer.
Food for thought.
Don't get the idea I'm a hypocondriac who sits around moaning about my health. Throughout my life, we've owned horses and broke them (me too), I've been an avid golfer, water skied, snow skied, and rode every scary carnival ride I could get on. Although all that's pretty much over for me. My new pastimes are writing, designing and making jewelry, and photography. Things my broken-down body can handle. I'm still livin' and lovin' it.
Betty

Betty (photogal),

Good luck to you!
Isn't it all so weird? Who knew that something involving sleep could be so serious and dibilitating? Hard to take seriously something which is considered to be a normal, relaxing part of one's life.

But I now look at it this way -- there are reasons why our bodies are designed for sleep. We wouldn't live long without sleep. So it is as important to our physiology as blood, food, etc. The difference here is that we simply don't realize that this sleep -- this important function of the body -- is being disrupted by a breathing problem, so subtle, so unnoticable that it happens WHILE we sleep. It's not a sleeping disorder. It's a BREATHING disorder. And until it's taken seriously, a lot of people are going to grow older and waste precious time before they are given treatment. It makes me, well, angry!



Linda

moving this up the page again.

I was born with my thyroid NOT working, (studies show those with thyroid working too high or too low often have OSA) I had my tonsils and adenoids removed in high school, as well as a deviated septum. I did a stress test at the age of 20 (dr. was a jerk, and I refused to pay him!) He said I just needed to exercise. The problem is/was I had NO energy to exercise. I had a graveyard shift watching teens in a group home. I would sleep ALL day, and then go to work, and fall asleep at 2 am. I was sleeping 18 hours a day but never rested. Doctor just upped my thyroid intake. When I moved to Maui, my new doctor switched me to a different thyroid medication and it took about a year to get it where it needed to be. Still I was complaining of exhaustion, so she recommended a sleep study (at the age of 30)
As I kid I never snored unless I was on my back. It was my sister who snored. As I got older my roommates would make comments about a bear inhabiting my room at night. I would go to camps as a counselor and stay awake ALL night so the girls could sleep. If I did sleep, the girls would say I woke them up. They knew how sensitive I was, so they were nice, but this really bothered me. I didn't know what to do. Thank goodness I came here to Maui!
I am actually moving back soon, and I am going to discuss OSA with my old doctor. I want him to realize this is common and not to overlook it!

Auntie

auntiebeccaneedssleep wrote: .... I am actually moving back soon, and I am going to discuss OSA with my old doctor. I want him to realize this is common and not to overlook it!

Auntie

I hope you do talk to this old doctor and give him a piece of your mind!
That would be great!

I do realize that a decade or so ago this condition was largely not known even by doctors. But regardless, NO doctor should dismiss the extreme exhaustion as just something that can be eliminated if we just exercise. That was totally irresponsible of your doctor. It seems many doctors refuse to admit there are some things they just can't figure out. So often they tell us it's all behavioral. I'd much prefer a doctor say they can't find the cause then to treat me willy nilly for anything or send me to a shrink or tell me to just exercise more. Doctors can't solve and cure everything. They are human too. But if they stopped and thought how they would personally like to be treated by a doctor, they might behave differently towards patients.

Linda

LDuyer wrote:NO doctor should dismiss the extreme exhaustion as just something that can be eliminated if we just exercise. That was totally irresponsible of your doctor.

To expect a Doc ten years ago to diagnose a 20 year old female who works third shift and complains of exhaustion with OSA is unrealistic. If Docs were to pursue every treatment option, no matter ho unlikely, our health insurance would be so expensive that nobody would have it. That makes it "totally irresponsible" to expect that he should have done so.

________________________

wader, who enjoys posting therapeutically

wading thru the muck! wrote:

LDuyer wrote:NO doctor should dismiss the extreme exhaustion as just something that can be eliminated if we just exercise. That was totally irresponsible of your doctor.

To expect a Doc ten years ago to diagnose a 20 year old female who works third shift and complains of exhaustion with OSA is unrealistic. If Docs were to pursue every treatment option, no matter ho unlikely, our health insurance would be so expensive that nobody would have it. That makes it "totally irresponsible" to expect that he should have done so.

________________________

wader, who enjoys posting therapeutically

I never said the doctor should test for everything. And I said doctors couldn't have known much about OSA back when. If a doctor can't find a cause and can only make a guess, that's fine. Giving a patient several suggestions of what to try is acceptable. But it's when they assert they KNOW the answer when they really don't does not help the patient. They should just be honest and not treat patients like idiots.

And I don't think I was being "totally irresponsible."
But maybe you were.
And as you and others here have said, we are not doctors either. People should view our advice with caution, as with anything else in life. It's best to try and be as educated as possible, and when all else fails, trust your own instincts.


Linda

There is a bit more to it than that.

Until the 1990's, most sleep research was done on men. In the early days, Dr. Cartwright said, "it was not considered polite for women to go to sleep in front of men" in laboratories.

Link

So the doctors really didn't hear about it very much as the studies didn't pertain to women's sleep disorders...

Look, Mikesus and Wader,

Doctors have been treating women like crap forever.

Guess I shouldn't blame the doctors so much. Afterall, until recently, men ruled the roost in that profession.

Don't get me wrong. There are wonderful doctors.
But time and time again I hear horror stories from women about how they are treated (literally and figuratively) by doctors.

I will never forget visiting my mother immediately following recovery from her hysterectomy surgery. She looked so bad I thought she was dying. That was a shock to me. But it's major, major surgery. And as so many women have since told me, doctors make women think they're going in for something as routine as having a tooth extracted, when it's as serious as any other major surgery.

No, OSA was not well known back when. There are likely illness and conditions out there yet to be understood. But it all does not excuse the way some doctors treat their patients, IMHO.

Linda

Let's all see what kind of VICTIM we can turn ourselves into. Doing so gives us an excuse to complain about everything we don't like in the world.

wading thru the muck! wrote:Let's all see what kind of VICTIM we can turn ourselves into. Doing so gives us an excuse to complain about everything we don't like in the world.

Well, you should know!


(Now, wasn't THAT mature of me!)


Linda,
who refuses to let Wader or anyone else make me out to be a victim, even if I am one

LDuyer wrote:Look, Mikesus and Wader,

Doctors have been treating women like crap forever.

Guess I shouldn't blame the doctors so much. Afterall, until recently, men ruled the roost in that profession.

Don't get me wrong. There are wonderful doctors.
But time and time again I hear horror stories from women about how they are treated (literally and figuratively) by doctors.

I will never forget visiting my mother immediately following recovery from her hysterectomy surgery. She looked so bad I thought she was dying. That was a shock to me. But it's major, major surgery. And as so many women have since told me, doctors make women think they're going in for something as routine as having a tooth extracted, when it's as serious as any other major surgery.

No, OSA was not well known back when. There are likely illness and conditions out there yet to be understood. But it all does not excuse the way some doctors treat their patients, IMHO.

Linda

Umm that was kinda my point? Did you read the article?

Now there is wider recognition that such complaints are real, said Dr. Joyce Walsleben, the director of the New York University School of Medicine Sleep Disorders Center. "Instead of being told, `You're just crazy, dear,' someone may actually listen," she said.

Because it was thought to be a "mans" health issue, little attention was paid to women with it. When in fact it is not as gender specific as once thought, it does tend to favor men over women as to who has it.

BECAUSE OF THAT VERY FACT, it means that women need to be more proactive in OSA as it is not commonly thought to be something that women have...

Sorry if you took it differently?

Mikesus wrote: .... Sorry if you took it differently?

It's a disorder I have.

Take-things-differently-itis.
Do they have a cure for this?



Linda

Thanks Mike,

You better explained what my point was. Women can either claim victim status or be proactive and take the role of directing their own healthcare.