52 years of sleep problems, sleep doc for the first time

[robysue]

you guys have no idea, well maybe some of you do. until you get to where I am now you do not know enough to do much of anything

Not to be snide, but a great many of the the folks on the forum have been there, done that, and have the t-shirt (or multiple t-shirts) to prove it.

There are a large number of members here who went for years or decades without any doctor asking appropriate questions about sleep issues to tease out that a trip to the sleep lab were in order---in spite to the people complaining about "bad sleep" at each and every appointment. There are a large number of folks here who have been told to their face for years that they are too young, too skinny, too fit, or too female to possibly have OSA, only to finally get a doc to authorize a sleep test (after they've begged the doc for years) and then have that sleep test show they have severe OSA.

There are also a significant number of forum members who have had numerous trips to the sleep doc after an initial diagnosis of OSA and initiation of PAP therapy when PAP therapy didn't fix things. I'm one of those members.

Trust me when I say: We understand your frustrations in dealing with sleep docs.

But at the end of the day: If you want the appointments with your sleep doc to be useful to you, you have to provide the sleep doc with some pretty specific information about what's going on with your sleep night after night.

[library lady]

Robysue is right....buck up your attitude and do what she suggests to get the answers you need.

[space45]

well back from the doc, silly me thinking I would have 1 whole hour with doc, most of the hour was waiting in the waiting room, them talking the a assistant when back to waiting, when to the doc who was very much wanting to do his spiel as that is what he does, goes though the whole reason for snoring and back of mouth and you know the drill, I was not happy with the wasted time but was very nice and polite hope that somewhere in his spiel by a real sleep doc that I may get a morsel of into that I did not already know. did not happen. would have been nice if he said have you seen this and know what it is and anything about it, I would have said yes lots more then once thank you. anyway he was very impress at what I had done and the results I got. he was very surprised I had a machine and o2 meter and had every thing ticking right along nicely. I told him I had help from guys on the net, he was cool with that. now my turn to ask question, well not really as he was not wanting any questions to do with sleep. I asked some of the real wonderful question you guys suggested. well that was not happening. not till after the test. no sleep related questions at all, not sure what I was to ask a sleep doc, but nothing about sleep no matter how I reworded it and reworked it to see if info could be pried from him. guess I was to ask about machine settings or some other nearly sleep related question, not real sure. he would always say not till after the tests are done. so I was getting nowhere fast so end of that. then the tours and instructions. end of hour.

did you know there is over 80 sleep disorders/problems they look for? wow who knew there was so many. holy bat crap. would have never guessed, so I did learn something, and that was from the lady that answer the phone and give tours. the lowest of them all imparts info I did not know. the morsel I was hoping to get from say the doc or maybe even the tech assistant guy. nope, the winner was ...phone lady gal. what a world

thanks for all the feed back and it was very help full, even tho there was no chance of using it this time. the doc was very clear, no sleep lab data, no answers. so next time I can push more. after all what excuse will there be.

[space45]

Sometimes I forget how truly open you really are so please forgive me if I think some of your opinions are trolling (i.e., designed to elicit emotion and not to provide information).

all is cool, I do go over the top and I let it all out, if you guys are not informed you can not help as much, I do go over info and to open like my owning guns, but, well live and learn.
I can come out looking real bad at time, I go with the flow and do not step back and say, this is not good, well I do some times but days latter, the birds are out of the cage long ago by then. no getting them back, they are gone.
as for the air dryer thing, it is really how I feel and it is not to upset anyone or piss off anyone. I really like my moms hair dryer that had the hose and cap, it was cool and good for lots of playtime, mom would get mad if she caught me with it, till it got old and she did not care any more. it had a setting for just blowing air, I would see what I could do with it, power bubble blower and how could one blow things around and how strong was it and how to make it blow harder and and and I did tons of experimenting with it, blowing air into water, seeing how far I could get something to fly out a tube. see if it could help paper airplanes fly. man there was no end of fun with that thing, and I liked the feeling of it blowing on my face to, that was nice. I now can not help but think if I add a mask it may have maybe help me sleep. just so you can see why I think of it so much as a air dryer and not some high tech med device. oh and see how fast it would dry air, timed it and every thing, the thing was mad fun. we did not have the cool toys they have now days and the vid games and such. had to make do.

Robysue wrote yet another amazingly clear post that I will use as a set of guidelines when debriefing. Wow. For my next meeting in two weeks I'm certain to be asked how I feel and am I sleeping well. I will take the opportunity during that discussion to work in the question "What does a good nights sleep really consist of and how do you know when sleep is good?".

The nerdy side of me would like to know if the doctor is willing to review and answer specific questions I have about the ResMed CPAP data. I also have questions about the sleep study. Hopefully she feels good about mentoring me and doesn't dread any subsequent follow-up visit.

yes it was and I did take it to hart and I did try to use the info, now I have more to go on I am hoping I get more out of it. but still does not clear the doc of what he done. he should have been more willing to send me for help if he did not know what to do or say.

Simply saying you're not sleeping well and that you're more tired when you get up than when you go to sleep is, unfortunately, not very much to go on. You're not giving the doc much to work with.

sorry but I completely disagree, he should know that is not right, does he feel the same way? has he had that? if not when maybe it is not normal, if it is not normal then HE should asked question, or send me to someone that can help.
he could say, wow that is NOT NORMAL and sounds like you may have a problem, lets see, who would be the BEST guys to send you to, I know, the sleep doc, he may know something about this I do not. wow what a concept not to be nasty, but I was in the dark and feed the same you know what for years, how am I to know (at that time) how to talk doc talk? I am just some schmo off the street, I know something is wrong, telling me it is normal is not fixing it. what did he go to school to learn if it is not to deal with street schmos like me?
general practitioner means street schmos and having to deal with them, some level of people skills are a must, not to mention the ability to translate doc talk the schmo talk. just my way of looking at it, call me crazy, but I really do believe they have to put in some effort as well. but you do give out great advice and I thank you for that, just did not agree with what you said about the doc and wording thing just right for him, I can see your point of I would have got more out of it if I could have done that, but I would have had to be much more knowledgeable like I am now to do that, back then what did I know of it, nothing, I really was not sure something was truly wrong, it just did not feel right. then add fog on top and well, not so good.

Your job is to make your doctor understand your condition and if required have a sleep study scheduled to get a formal analysis by trained experts. Honestly, it's not really that complicated.

if it was not then why did not the doc figure it out faster? BTW to get the time line 100% right, after doc shocked at my T levels, and giving not a hoot about my E levels, I had to tech the doc there, so I did do some doc training, I said to doc my wife is complaining about me snoring, he sent me to a clinic I could have walked into with out his say so as the testing is free, well maybe not, not sure if I paid something, anyways it was not covered by the gov and I paid or maybe I did a equipment deposit payment, I know I did one of them but not sure about paying a fee. anyways he gets the report about how bad I am. I try and talk to him about it and get blown off as if nothing to look at here, you would have thought when the report came back extreme, his said just extreme not the extremely extreme I got. he may of at that time said "maybe I should send this guy to a real pro" I am sure the report was in doc talk, so he should of, if he cared at all, should have brought it up, or when I brought it up he should have gave my the option to see a real pro in the field, or would that be asking to much of a doc? would seems a docs job is a real cushy gig. anyways I had a doc appointment for something else and the normal gen doc was not there and I got a fill in, good thing as when I mentioned I was on all fours in bed gasping for air and thinking I was dieing he did not say "THAT IS NORMAL" he said wow that is not good and sent me to the sleep doc, that took many many months but today was the day. oh and the sleep doc said I was a top priority case, in as fast as possible, I am even on top of the cancellation list, if someone cancels I am the first they call, things are looking up.

Robysue is right....buck up your attitude and do what she suggests to get the answers you need.

very true, if your informed enough, and know what to say and how you get more out of it, when I know something I can fight back, like me teaching the doc about T for guys and not so much E for guys, I had a friend that found it on the net and mentioned it to his doc, but his doc was right on it as soon as my friend said something, even saying he should have been on that one sooner, now that is a good doc, for mine, he flat out refused to do it, I said no to his bug pill and he said no to my testing, so I had to get a different friend that is part of the med system but not a doc, but he is high enough up the food chain that when he writes a request to the doc it can not be turned down, so I had to force my doc to do T and E testing for me. as soon as the T result came back my doc was shocked, he was then cool and on board. with the sleeping thing I was out gunned and under cover, I was out of it and not able to mount any kind of offensive to get him on my side and taking it for real.

Not to be snide, but a great many of the the folks on the forum have been there, done that, and have the t-shirt (or multiple t-shirts) to prove it.

There are a large number of members here who went for years or decades without any doctor asking appropriate questions about sleep issues to tease out that a trip to the sleep lab were in order---in spite to the people complaining about "bad sleep" at each and every appointment. There are a large number of folks here who have been told to their face for years that they are too young, too skinny, too fit, or too female to possibly have OSA, only to finally get a doc to authorize a sleep test (after they've begged the doc for years) and then have that sleep test show they have severe OSA.

There are also a significant number of forum members who have had numerous trips to the sleep doc after an initial diagnosis of OSA and initiation of PAP therapy when PAP therapy didn't fix things. I'm one of those members.

Trust me when I say: We understand your frustrations in dealing with sleep docs.

sorry for thinking or hoping I was one of the few. sorry to hear so many had to go through what I have had to. and heaven forbid even more.

No, you don't need a medical degree to talk to the doc. But you do need to be able to accurately describe the history of your problem in terms of what actually happens when you sleep and how long its been going on and what's been tried previously to fix the problem.

I was doing my best, complaining about frequent urination with lots of real small ones, that was my prostate, even though he has examined it for 3 years now doing my yearly and did numerous PSA testing and can find nothing wrong, it is still my prostate glad at fault, the sleep doc said that is normal for OSA, I said to gen doc I was more tiered getting out of bed then going in, I said I snore, it was not till I said the wife was non to happy about my snoring he sent me to get checked by the local back yard mechanic. then totally ignored the report, even when asked about it by me. just how much do I have to do here to get things going?

Robysue has it right--you need to quantify every symptom, writing it down in a list;
and do not let the doctor leave until you have hit every "bullet point".
My doctor reaches for the list, discusses each point with me, then puts my notes in with his notes to the stenographer.

your right that she is right, if your wanting to get the most from the doc. with my general doc, here is how things go, ME I get up more tiered then when going to bed. DOC that is normal ME how on earth can that be normal DOC it just is ME that does not sound right DOC it is normal and there is nothing I can do about it,it just is ME the end. what on earth more can I say, he did good at shutting one down. but you can bet going through my mind was a few choice words and wanting to give him a good kick in the ass for being a ass. that is how it is on allot of things, unless there are pills involved. or I prove I am right.
the first time I saw him after seeing the replacement he was not that happy with his doc friend. you could see he did not like me being sent to a sleep doc, not until I pointed him BACK to the IRS report he had sent me to, that is how I know about the one extreme. but after I told him the IRS guys said I was extremely extreme to me, he looked it up and said it said I was extreme, so it was now cool that I was sent to the sleep doc by his friend as it was now justified. do I have a great doc or what, just gives you warm and fuzzy feeling all over. makes me real glad there was a fill in doc that day or I would have gotten the old stand by, " THAT IS NORMAL" and out the door I go.

[poorflick]

So, you're getting a sleep test done or have already had one? The doc saying he couldnt answer any questions until after a test was done would be what any doc would say.

[robysue]

I was doing my best, complaining about frequent urination with lots of real small ones, that was my prostate, even though he has examined it for 3 years now doing my yearly and did numerous PSA testing and can find nothing wrong, it is still my prostate glad at fault, the sleep doc said that is normal for OSA, I said to gen doc I was more tiered getting out of bed then going in, I said I snore, it was not till I said the wife was non to happy about my snoring he sent me to get checked by the local back yard mechanic. then totally ignored the report, even when asked about it by me. just how much do I have to do here to get things going?

The female equivalent of what you're describing is the tendency of docs to blame everything that a middle-aged women complains about on perimenopause (if the woman is in her 40s) or menopause (if the woman is in her 50s).

Seriously: A forty-something or fifty-something woman goes to her PCP complaining of: Bad sleep, aches and pains, short temper, brain fog, and fatigue, and 9 times out of 10, she'll be told is just related to "the change of life"