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

[space45]

52 years of sleep problems, seeing a sleep doc for the first time today any suggestions?
never been to one, have no idea what it will be like. they say I have a whole hour, one hour with a doc, that is a new record for me, they can not get you in and out fast enough.
this is just a meet and greet. hope he has some answers.
even when I said I had a sleep problems when I was young they did nothing. non to happy about that, not sure what to say to doc. will he even care, I was warned his bed side stunk big time. he is rumored to be a real ass, and that was his good days. will get a first hand sample this afternoon.

exited about getting answers and yet trying not to expect to much. probably going to get the norm tech talk to impress me he knows his stuff and that stuff is so far above me that asking questions is not going to happen as I am to dumb to know what to ask. expecting something like that. only talking I will do is one word answer to his questions as he has no time or even cares what I have to say, he already knows everything before I was even sent to him. only thing the questions are for is the fill the mandatory time he has to spend and make me think he give a dam. if expectations are low, and I have been warned by more then once about him, then I can not be to terribly disappointed no matter how bad I would love some answers. plus that is pretty much the norm for doc here, my reg doc sucked just about that bad as well till I asked him to send me to someone else, he then smartened up and is not half bad now, he started out a bad ass as well.

[Day_Dreamer]

I would anticipate him setting you up for an in lab sleep test. This requires an overnight stay and being attached to electrodes to see what's going on.

Where are you?

[robysue]

only talking I will do is one word answer to his questions as he has no time or even cares what I have to say, he already knows everything before I was even sent to him. only thing the questions are for is the fill the mandatory time he has to spend and make me think he give a dam. (emphasis added)

That's a good way to insure the meeting will go very badly and that all your worst expectations will come true.

One word answers to questions the doc asks will convey to him that you either don't care enough to learn anything or really are too dumb to bother with.

And yet there's a fine line between being an interested, knowledgeable patient and a "know-it-all" patient. (Alas, I've crossed that line more than once and I've been fired as a patient for doing it.)

Be prepared to give a detailed history of your sleep problems and what (if anything) other doctors have recommended for them and how well those recommendations worked for you. If the doc asks about what kinds of problems you've been having with PAP, be as specific as you can about the 2-3 BIGGEST issues you are dealing with. Don't be vague and say, "I'm still having trouble sleeping." That kind of response does not give the doc any starting place for figuring out what might be useful to you.

I would also suggest that you come with a short list of questions (no more than 4 or 5) that you are MOST interested in having answered. And of all the possible things to ASK, the thing that I think you need to ask the most is this:

• What does a good night sleep really consist of and how do you know that your sleep is good?

And listen to the doc's answer to that question. Some of what the doc might tell you may surprise you.


Do NOT say, "I learned on <blah blah blah> on the web." Docs by and large have no respect for any medical information that is posted on line, regardless of the site or the accuracy of the information.

Ask to go over your sleep test results (if you've had one) and ask questions about it if you have them.

[space45]

If you know he sucks so bad then why are you going to him......

you say that like I have a choice... why do you think I asked my reg doc to be transferred, I had phone every clinic around trying to get new doc and could not, I was stuck with mine, like it or not.

free is never free. the guys in the US and maybe other places can move around, get second opinions and such because your paying the bill. here the gov does, sure it is nice to get a doc for free but the doc sucks most of the time as he get his clients and they are his personal cash cows to do with as he pleases, some docs are good, but the ones that suck, get more money for less work. they run you through like paper through a printing press, and it is printing $100 bills all day long. the caring doc spend time and gets less $$$ and works harder. sucks I know.

now the US wants what we have, good luck it is only a matter of time and you will be stuck to, it is happening already with the lack of docs.

[nanwilson]

If you know he sucks so bad then why are you going to him......

you say that like I have a choice... why do you think I asked my reg doc to be transferred, I had phone every clinic around trying to get new doc and could not, I was stuck with mine, like it or not.

free is never free. the guys in the US and maybe other places can move around, get second opinions and such because your paying the bill. here the gov does, sure it is nice to get a doc for free but the doc sucks most of the time as he get his clients and they are his personal cash cows to do with as he pleases, some docs are good, but the ones that suck, get more money for less work. they run you through like paper through a printing press, and it is printing $100 all day long. the caring doc spend time less $$$ and works harder. sucks I know.

now the US wants what we have, good luck it is only a matter of time and you will be stuck to, it is happening already with the lack of docs.

Wrong, wrong.... with an attitude like that you will get no where with ANY doctor. I also live in Canada and have many relatives in Ontario that DO get second opinions from other doctors in their area when they think they need one. The only thing that sucks here is your attitude, the doctor can easily see it when you come into the office... that would be the reason you get sucky service. You have tons of choice... use it to change your attitude and get a good doctor... its YOUR choice... use it! Robysue gave you excellent advice... follow it and you will succeed.

[The Choker]

sure it is nice to get a doc for free but the doc sucks most of the time

Socialized medicine. Blechhhhh.

[space45]

That's a good way to insure the meeting will go very badly and that all your worst expectations will come true.

One word answers to questions the doc asks will convey to him that you either don't care enough to learn anything or really are too dumb to bother with.

And yet there's a fine line between being an interested, knowledgeable patient and a "know-it-all" patient. (Alas, I've crossed that line more than once and I've been fired as a patient for doing it.)

one good thing is he can not fire me just like I can not fire him, we are stuck with each other, you have given some very good advice, thanks for that.
I would think by my posts, maybe you have not read the others, that you would guess I would be that easy and just give one word answers, the doc asks stuff to get one word ones, I do tend to derail that somewhat when it is necessary. as for answers to questions....LOL my endocrinologist has a way to deal with that, man is he slick, he delays is answer, like I will answer that later or we will get to that later or the answer will be clear later or what ever later, and when I am out the door and on the road it hits me, I did not get any answers at all, non zip. infinite delaying is his way to deal with the smart ones that ask question that take time to answer. no need to slow down the press. I am on to him now so next time he will be answer or I will just keep pressing him to, no more delays to answers. took me 3 times with him to catch on, thought him forgetful or something. but after 3 visits and no answers to anything, he will not be delaying any more.

Be prepared to give a detailed history of your sleep problems and what (if anything) other doctors have recommended for them and how well those recommendations worked for you. If the doc asks about what kinds of problems you've been having with PAP, be as specific as you can about the 2-3 BIGGEST issues you are dealing with. Don't be vague and say, "I'm still having trouble sleeping." That kind of response does not give the doc any starting place for figuring out what might be useful to you.

I would also suggest that you come with a short list of questions (no more than 4 or 5) that you are MOST interested in having answered. And of all the possible things to ASK, the thing that I think you need to ask the most is this:

What does a good night sleep really consist of and how do you know that your sleep is good?

And listen to the doc's answer to that question. Some of what the doc might tell you may surprise you.


Do NOT say, "I learned on <blah blah blah> on the web." Docs by and large have no respect for any medical information that is posted on line, regardless of the site or the accuracy of the information.

Ask to go over your sleep test results (if you've had one) and ask questions about it if you have them.

I had to wake up and think I was dieing before anything about sleep was mentioned or thought of, even when I was a kid and hospitalized for it and told them it was sleep related, total ignore, complete and total.
this will be the very first time in my life I will be talking to a doc about sleep and sleep problems, reg doc, you say "I am not sleeping well", they say "that is normal", you say "I wake up more tiered then when I go to sleep", they say, "that is normal". that is normal is a reg doc way of keeping the press rolling. I have a big frost bite numb spot on my left leg, doc says,,,,, you guessed it, or if you did not you should have "THAT IS NORMAL".... normal for who?????? some one that climbed mount Everest??? I have gotten so pissed off with "that is normal" my head fell off..."that is normal" I swear there is nothing not normal when it come to our docs. unless it involves giving a pill. then it is, "we can fix that".

will take your advice to hart.. thanks again for it

[robysue]

the guys in the US and maybe other places can move around, get second opinions and such because your paying the bill.

It's not as easy here in the US to switch doctors as you think it is. Our insurance rules are pretty picky and vary from company to company. Staying in network can severely restrict your access and going outside of network can increase the cost to the point where it is ridiculous. And most of us have NO choice in who provides our insurance since it comes through our employer.

Second opinions? It all depends on your insurance---if you're lucky enough to have quality insurance, it will pay for a second opinion. If your insurance is lousy, it won't.

Wait times and access to the doctor of your choice? It's totally hit or miss. You call some docs and the scheduling person on the phone tells you, "The first free appointment is six months (or more) from now. When would you like to be seen?" Or you're told, "Sorry, the doctor is not taking any new patients." Or even worse, the person on the phone asks about your insurance company and you're told, "Sorry we don't take that kind of insurance. Do you want to be a full pay patient or go elsewhere?"

now the US wants what we have, good luck it is only a matter of time and you will be stuck to, it is happening already with the lack of docs.

It's not clear what we in the US really want. It is clear that while a large number of folks would like a single payer system similar to Canada's, there's an equally large number of folks that have no desire to go to such a system. That's the real reason we can't fix our broken health care system in the US---we're way too divided about

• what the actual problems in the current system are,
• and the best way to fix those problems

All we seem to be able to agree on is the system is broken and it's too expensive.

[space45]

Wrong, wrong.... with an attitude like that you will get no where with ANY doctor. I also live in Canada and have many relatives in Ontario that DO get second opinions from other doctors in their area when they think they need one. The only thing that sucks here is your attitude, the doctor can easily see it when you come into the office... that would be the reason you get sucky service. You have tons of choice... use it to change your attitude and get a good doctor... its YOUR choice... use it! Robysue gave you excellent advice... follow it and you will succeed.

why do you think I have this attitude??? not all docs are bad. I did say that did I not, I was sure I did. it is not just me, we have/had as we just sold it, a family farm on my wife's side, doc there said my sis inlaw had a good life and to go home and die. that was word for word what he said, she had lung problems and was struggling to breath. my bro inlaw just had surgery for something he had suffered form for over a year, it got so bad we hired someone to drive him to swift current hospital bypassing the local nut case doc. he was rushed into surgery and had emergency surgery at 2 AM and they said he only had 2 days left to live if he did not get in when he did. not that great a doc it would seem.
I HAD a friend that had bone cancer for years, did not know it, went to his regular doc (who happened to be a local internal specialist) complaining of pain, kept send him home with a few pills. one day that doc was on holidays and another doc was filling in, was half way though the exam and she sent him to emergency saying he had cancer real bad and needed emergency treatment, he died not last to long as it was to late. she was a good doc,, he was not.. shell I go on?????? I do not go in looking for a fight. BTW the only choice for a second is a walk in clinic and that happened just recently, was non before. and if you have a reg doc they have a limit as to how many time they can be used. so choose your times wisely so things are getting a tad better. also when phoning clinics looking for new doc and they ask what doc do you have now you answer and they say we cannot take you as you have a doc, how can attitudes be involved there? things are very different in your neck of the woods. be thankful

[SleepWrangler]

Wrong, wrong.... with an attitude like that you will get no where with ANY doctor. I also live in Canada and have many relatives in Ontario that DO get second opinions from other doctors in their area when they think they need one. The only thing that sucks here is your attitude, the doctor can easily see it when you come into the office... that would be the reason you get sucky service. You have tons of choice... use it to change your attitude and get a good doctor... its YOUR choice... use it! Robysue gave you excellent advice... follow it and you will succeed.

why do you think I have this attitude???

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.

Sure it is nice to get a doc for free but the doc sucks most of the time

Oh ya. Let's feed into the fear because T.V. and other media definitely does not do enough of that. The constant trolling is tiresome.

My lady doctor seems savvy and is an MD, FRCPC, and D. ABSM (i.e., Diplomates of the American Board of Sleep Medicine). Had an appointment within two weeks of referral from GP. A sleep study was done two weeks after that. My doctors seem competent and have followed the same gold standard of care I see described in these forums. My condition is relatively minor compared to yours (she noted that my throat is narrow and my tongue is thick ... for some reason I found this really funny).

[robysue]

I had to wake up and think I was dieing before anything about sleep was mentioned or thought of, even when I was a kid and hospitalized for it and told them it was sleep related, total ignore, complete and total.
this will be the very first time in my life I will be talking to a doc about sleep and sleep problems, reg doc, you say "I am not sleeping well", they say "that is normal", you say "I wake up more tiered then when I go to sleep", they say, "that is normal".

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.

Here is the kind of specific information the doc needs to know about your sleep and your sleep habits:

• Typical sleep schedule. What time do you usually go to bed? What time do you usually wake up? How much does it vary from day to day? Is your sleep schedule substantially different on weekends (or your days off) than it is when you are working?
• Description of what happens near and at bedtime. Do you go to bed when you first feel sleepy? Or do you go to bed when you feel tired or exhausted? Do you go to bed at a set time regardless of whether you feel sleepy? Do you know the difference between feeling sleepy and feeling tired or exhausted? Do you have relaxing bedtime routine? What does your bedtime routine look like?
• Latency to sleep. How long do you think it takes you to get to sleep after you go to bed? What do you do if you are still awake 30 minutes after you go to bed? What if you're still awake 60 minutes after you go to bed?
• Night time wakes. How many times do you remember waking up on an average night? How many times do you think you wake up during an average night? If this is more than the number of wakes you remember, why do you think you are waking up more often than you remember?
• More on night time wakes. Do you know what triggers any of the wakes you remember? How hard is it to get back to sleep once you realize you are awake? Do you watch the clock when you are awake in bed?
• Night time restlessness. Do you toss and turn a lot during the night? Are the covers in a mess every morning? Do your legs ever twitch when you're trying to get to sleep? Do you wake up with a twitchy feeling in the legs or elsewhere in the middle of the night?
• Dreams. Do you ever remember dreaming? If so, are any of the dreams are terrifying enough to wake you up at night?
• History of abnormal sleep behaviors. Any history of talking in your sleep? Walking in your sleep? Doing anything else in your sleep? Any history of bedwetting even if it was years and years ago when you were a child?
• Snoring and OSA symptoms. You're using a CPAP. The doc will need to know why you are on CPAP---did you have a formal sleep study done? If so, when and what did it show? If not, what was the decision to use PAP based upon. Do you snore? and if so, how loudly? Do you snore all the time (when you aren't PAPing)? Frequently---as in almost every night? Or only occasionally?
• Use of caffeine. How much caffeine? How close to bedtime?
• Use of alcohol. How much alcohol? How close to bedtime?
• Use of bedroom for things other than sleep and sex. Do you routinely read in bed? Watch TV in bed? Use the computer in bed? Websurf or text on your smart phone or tablet in bed? Do you eat in bed?

Since you say that you've always had sleep problems, you also should discuss as part of your medical/sleep history the following:

• What were your sleep problems as a child? Were they bothersome or worrisome enough for your parents to notice?
• Have you tried any of the following things to address your sleep issues:
  • OTC sleep medication including melatonin
  • Prescription sleep medication targeted towards treating insomnia
  • Prescription medication targeted towards treating PLMD or RLS (if so, which condition and what drugs?)
  • PAP therapy at what settings? (we know the answer is YES, but the doc needs to be told this)
  • Cognitive Behavior Therapy for Insomnia/Sleep problems
• If you have tried some of the above things to fix your sleep, what was your experience with them? NOTE: Simply saying "They didn't work" doesn't give the doc enough information; you have to say how or why they didn't work. Or whether they sort of worked but you gave up on them because <fill in the reason>.

In other words, you've got to give the doc enough specific information so that s/he can start digging with the appropriate follow up questions. Some docs are better at this than others, but it's really not part of their "bed side manner". Rather it's more closely related to their experience and intellectual curiosity.

And once again, I'll repeat: Since you've never really experienced what you think is good sleep, it is critical to ask the sleep doc to tell you what good sleep actually is and how much it can vary from person to person.

[space45]

you guys have no idea, well maybe some of you do. until you get to where I am now I did not know enough to do much of anything, more so when doc after doc has said my sleep problems were normal. no testing, no question from doc for me to answer, I ask question doc answers right away no questions asked of me or tests done "'THAT IS NORMAL". OK it is normal, how many time does one need to be told BY THE PROS THAT SHOULD KNOW "that is normal" before you give up.
it was not till I got a machine and started out of the fog I was in did I realize I was lied to all my life, the "that is normal" BS is just that BS. so excuse me if I get a little to exited about all this and want to know more.

BTW what trolling as I doing????? is telling the truth about why and how I feel the way I do trolling??? Is spilling my guys on the forum about my life trolling????? would I do all this if I was not desperate to find answers and want to know more and find out what else I do not know about all this. I knew nothing about sleep problem, I was sure I had them but doc after doc said I did not, so now I find out I do have a extremely extreme case when I was FINALLY tested after a near death experience, LOL here is the best part, you will love this, it was a fill in doc just like my friend that FINALLY sent me to a sleep doc. I bought a o2 meter and it recorded o2 levels down to 47%, and that was just testing over the last 3 to 4 weeks or so, how low has it gone in the past????? I would say it looks to have been a problem.
if all that is trolling well I guess I am a troll and will ask for forgiveness for my transgression on this forum.

[space45]

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.

easy for you to say knowing what you know, when you have no idea of anything to do about sleep and all you know is you wake up more tired then when going to bed you say that to the doc he is the pro I am not.
it is up to him to ask and get info, how am I to know what is relevant and not. I have no idea what is wrong or how to fix, thus asking the doc, he says "that is normal" what else is there for me to say to him?
should he not ask questions? should he not know it is not normal and get me to a sleep doc? why is he there getting paid if all he can say is that is normal? why does he even have a job???? my wife can tell me that is normal and it costs no one a cent.

do I need a docs degree to go in and talk to a doc so he can know what I need? I would think at that point I could do it all myself as I would know as much as him.
I knew nothing other then this could not be right. but the pros were telling me it was. was I wrong? were they right? how was I to know till I found out proof positive I was right??????? now I read the forum, something I should have done long ago I do admit. but docs do not respond well, as was said before, and I have had first hand experience with, that saying I found out X on the net and the doc sees red. not a good way to get help from him.

sorry for the rant

[SleepWrangler]

BTW what trolling as I doing?????

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).

you guys have no idea, well maybe some of you 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.

[chunkyfrog]

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.