That's it. I quit

Went to the doctor on Friday. He came in and looked (very briefly) at my study. He said oh very mild sleep apnea, no big deal or something like that. Then I told him the problems I had with the study - no REM, sleeping on stomach. He said well yeah it's probably not a true representation of the problem and that we could do a CPAP titration, but then he started asking my husband some questions. And from those questions he asked my husband, he concluded that I did not have sleep apnea (even though the test showed it I guess - no matter how mild it was. Maybe he thought that it was a false positive.) He asked my husband if he heard me snore. Husband said no (even though the test said mild snoring noted.) He asked my husband if he heard me stop breathing. Husband said no, but I hear her breathing funny. It's like she's breathing really shallow. (Guess hypopneas aren't important.) He asked if I fell asleep driving or talking to people. I said I'm able to keep myself awake, but I do get quite sleepy. He said oh well, you don't have any of the signs of apnea. I don't think you have apnea. So he wanted to set me up for an MSLT to see if I had Narcolepsy although I have NONE of the indicators of N. But he said you can have it without those. Then he said, "Oh but you didn't go into REM at all in your study so it's not very likely." So he's going to test me for something that he knows I don't have? I said I had a really hard time falling asleep with all those wires attached and if the MSLT is the same way then it won't show that I'm really tired. He said well if you have Narcolepsy it won't matter. You'll fall asleep anyway. Well if that's the case, don't you think I wouldn't have had a problem for the sleep study? And it would have shown REM? So he scheduled me for one of those. However, I can't afford to miss another day of work and am going to cancel my appointment and never go back to him again. What about UARS? I didn't bring it up to him, but I"m sure he would have shrugged it off.

I'm just so frustrated with how the appointment went. I mean all of you guys talk about how you've had this for so long and you've had it for atleast 10, 15, 20 years. Well, here I am young. I don't have a severe case yet, but I guess maybe if I wait 10, 15, or 20 years like you guys did that I'll be so incapacitated that someone will actually take me seriously. I just don't get it. I'm just trying to find out why in the heck I'm so tired at only 24 years old? I don't think it's normal, but must be its psychosomatic (sp?) or something. Anyway, I quit. I can't waste anymore time going to stupid docs when I know more than they do. I just wanted help and no one will give it to me. So in 15 years when I can no longer function. THEN I'll get treated. I'll just ignore it and hope it goes away. Afterall, the test showed my AHI is only 8, so I'm sure I won't die.

Sleep doctors look for apneas. Period. Anything else is often beyond their ability to comprehend.

Underventilation can be just as dangerous as apneas because it leads to a build-up of CO2 in your body, a tolerance of CO2 and a resistance to O2. In my original study I had a total of I think 17 or 18 "events". During the titration study I had 3. But I only slept about 1½ to 2 hours total for each study. However, my O2 sat level was dropping, so they put supplementary O2 on me, invalidating the remainder of the test! ARGH!!!

Froedtert (Milwaukee) is now installing and preparing to use a CO2 monitor in their adult sleep lab. It will be one of a handful of adult sleep labs in the country with that capability. This ability will help to validate the net effect of underventilation in patients without significant apneas. CaNOT wait to try it out!!

But they don't want to do the MSLT on a Saturday? My second sleep study (titration) was on a Thursday and the MSLT (always follows a sleep study so they know how much and what kind of sleep you had the night before) the next day.

You need to find out why you are not sleeping before you start doping yourself up with drugs that can complicate the picture and exacerbate the problem.

Luck to you!

- JB

I am not a Dr. DME, RT, just a fellow sleep apnea Patient. No doctor asked me dit squat, and I told the pulmonary doc who I got on my OWN, don't ask my husband, ASK ME. I found him to be very nice, and now that I flunked the titration miserably putting me into the ''severe'' category well now the whole sleep lab thing is my cardiologist's idea. He is ''so pleased'' that I followed thru. Doctors are a necessary evil.

Question is do you have access to another pulmonary/sleep doctor/center? This guy IMHO sounds like he is NOT NOT NOT listening to you one bit.

Ask him does he/or/practice have a $ interest in the sleep lab. I bet from his reluctance he will say ''nah''...or 'hmmm'' a lot.

Can you find someone else? Let us know.

If you can nip this in the bud so to speak while you're young, your body/organs/health won't be impacted when you're older like many of us. Remind this doctor of that sport's guy REGGIE WHITE (I a not a sports person, so I don't know what/who/type of sports he played or care for that matter), but he died ''in his sleep'' sleep apnea...they are quick to say he had other problems health wise, but were these problems exacerbated by the undiagnosed sleep apnea and treatment.

One of the best quotes is one of the great gals on here Janelle, she says ""there's help on the nightstand" use it!!

You can come back here and ask a million questions, find out what you need to be armed to go into the doctor. I knew very little about OSA when I was diagnosed and in a matter of wks I made an informed decision as to what machine/mask/et. I WANTED. Not what they want.

Be an advocate for yourself while you're young, it'll help you life long health wise. Doctors tend to listen (or get annoyed) when you know something...if they are that threatened by an informed patient, time to move on to someone else, if at all possible.

Good Luck to you!

GZ[quote="HisServ"]Went to the doctor on Friday. He came in and looked (very briefly) at my study. He said oh very mild sleep apnea, no big deal or something like that. Then I told him the problems I had with the study - no REM, sleeping on stomach. He said well yeah it's probably not a true representation of the problem and that we could do a CPAP titration, but then he started asking my husband some questions. And from those questions he asked my husband, he concluded that I did not have sleep apnea (even though the test showed it I guess - no matter how mild it was. Maybe he thought that it was a false positive.) He asked my husband if he heard me snore. Husband said no (even though the test said mild snoring noted.) He asked my husband if he heard me stop breathing. Husband said no, but I hear her breathing funny. It's like she's breathing really shallow. (Guess hypopneas aren't important.) He asked if I fell asleep driving or talking to people. I said I'm able to keep myself awake, but I do get quite sleepy. He said oh well, you don't have any of the signs of apnea. I don't think you have apnea. So he wanted to set me up for an MSLT to see if I had Narcolepsy although I have NONE of the indicators of N. But he said you can have it without those. Then he said, "Oh but you didn't go into REM at all in your study so it's not very likely." So he's going to test me for something that he knows I don't have? I said I had a really hard time falling asleep with all those wires attached and if the MSLT is the same way then it won't show that I'm really tired. He said well if you have Narcolepsy it won't matter. You'll fall asleep anyway. Well if that's the case, don't you think I wouldn't have had a problem for the sleep study? And it would have shown REM? So he scheduled me for one of those. However, I can't afford to miss another day of work and am going to cancel my appointment and never go back to him again. What about UARS? I didn't bring it up to him, but I"m sure he would have shrugged it off.

I'm just so frustrated with how the appointment went. I mean all of you guys talk about how you've had this for so long and you've had it for atleast 10, 15, 20 years. Well, here I am young. I don't have a severe case yet, but I guess maybe if I wait 10, 15, or 20 years like you guys did that I'll be so incapacitated that someone will actually take me seriously. I just don't get it. I'm just trying to find out why in the heck I'm so tired at only 24 years old? I don't think it's normal, but must be its psychosomatic (sp?) or something. Anyway, I quit. I can't waste anymore time going to stupid docs when I know more than they do. I just wanted help and no one will give it to me. So in 15 years when I can no longer function. THEN I'll get treated. I'll just ignore it and hope it goes away. Afterall, the test showed my AHI is only 8, so I'm sure I won't die.

Fire the doctor.....now. You did not mention if it was a sleep doctor, GP or Pulmonologist. I learned the hard way...do it now. If they did not give you a copy of the sleep study......get one now!!! You are entitled to it...they cannot refuse you. Then you look around for a new doctor. Give a general area of where you live and someone on the board might PM you with a recommendation. If you have an option of OTHER sleep centers, pay them a visit. Ask to talk to the office manager and find out what their protocol is, if they are willing to talk to you and give you a tour, that is the first indicator of a well run facility. If you did go to a sleep center, just simply request to see another doctor. They will not refuse you because they know you are considering going elsewhere. They do not want to lose money. Find out if they have an RT, Sleep Tech and/or Neuro Tech on staff that are available to answer questions. Most sleep labs work straight through the weekend. Schedule yourself through the weekend. Next time, leave your sweet hubby in the waiting room for a while so they talk to YOU! DUH, you know your body!!! Then, you can ask to bring him in to hear the recommendations! Be Pro-Active!! It is your life! Good luck!

I agree you should try to find another Doc/Sleep Center and try again. You are smart trying to find out if you have OSA at a young age and I wouldn't rish my heatlh due to a Doc who refused to listen to you. Talking to your Husband more than to you? That's insane! My Sleep Doc talked to ME, not my Husband. I hope you can get it figured out, for the sake of your health. I'm sorry you had such a poor experience.

Hi HisServ,

I completely understand where you are at -- I was there too in January. I had an arrogant sleep doc at first, who wouldn't listen to me . I was so angry (exacerbated by sleep deprivation) and frustrated by leaks that I spent a lot of time with the nice RT -- he helped me with the mask issues and as I was leaving, I asked him if he would recommend another doctor. He did, and the new doc is wonderful -- kind, caring -- takes time to listen.

I have already spent more time with my new sleep doc than the first doc. I later had an overnight pulse oximetry & picked up the unit from the sleep lab. In getting the stuff ready, I chatted with the RT a bit (this was the night shift) and made a comment about the first doc and he rolled his eyes and said that no one likes him, including the sleep center staff! This approach might work for you, if the sleep center is big enough to have more than one doc. The RT's know how the docs treat them and patients and can (if willing to) point you in the right direction. Your primary care doc may have good advice for you also -- he/she probably knows which ones would be in your insurance group.

I agree with the previous posters -- fire the doc and find someone who will work WITH you. A doctor is like any other service provider -- if it is poor service -- you can (and should) go elsewhere. Don't continue to reward poor service with your payments (or your insurance payments)!

My new doc doesn't know a lot about the machine that I purchased on my own, but seemed interested in the reports and spreadsheets that I brought in to followup appointments. He did not shut the door in my face when presented with something unfamiliar, which I appreciated. I believe that the overnight pulse oximetry was his way of verifying that my APAP was working correctly, since I had significant desaturations during my sleep study, and the overnight study confirmed NO desaturations. It made sense to me as a double check. It also reassured both of us that the APAP was doing it's job.

IMHO you NEED to pursue this. I wish that I had known about OSA when I was young and it hadn't had decades to damage my body with not enough oxygen every night!

Too many people put doctors up on a pedestal, and too many docs enjoy being there. Doctors are just people -- there are good ones and bad apples in every group. You are your own best advocate -- do not accept being treated like that -- keep at it until something works.

Good luck to you and let us know what happens.

A lot of us have been where you are. I had been going to the doctor and complaining of fatigue for years and all of the doctors I went to completely ignored it. My snoring got so bad that my husband and I had to sleep in separate bedrooms. I even woke myself up so I sure didn't want to put him through that every night. I finally went on a trip with my sister and we shared a motel room one night and she woke me up about midnight and told me I have severe sleep apnea. Her husband had been diagnosed five years earlier so she knew about apnea. I had to hunt a doctor down and demand a sleep study. I had HMO insurance then so I had to go on referrels and every doctor from the primary care physician to the ENT who finally gave me a referrel to the sleep specialist told me that they didn't think I had sleep apnea because I never went to sleep at the wheel or stuff like that. You just have to demand what you want. They don't always know.

HisServe

I feel your pain! What a doctor!! I would search and get another one if I were you. If I had let my sleep problem drop after my first study I would still be losing more brain cells from hypoxia. It showed nothing b/c I didn't sleep. I insisted on seeing a pulmonologist who knows a little more about it. He immediately found some of my problems.

First of all, I was having severe reflux from a drug called Amiodarone, even though I didn't know it. I was waking up every 15 min., and had no restful sleep for 9 months. He put me on Protonix and that was fixed.

I was also having frequent hypopneas which showed up on the second study (at a different center!!) I only had 5 apneas all night, and my AHI was only 12. B/c I have familial cardiomyopathy and mild pulmonary hypertension, I was put on oxygen instead of Cpap since it was so mild. The oxygen made a HUGE difference in how I felt. I felt like my IQ rose about 30 points overnight!! This may be a option for you. Consider asking your primary doctor to order it or at least an overnight oximetry.

Since my pulmonary hypertension did not improve on the oxygen, although my EF rose 10% after 6 months, which was a big deal, he decided to put me on Cpap now. It's been 2 weeks and I now feel definitely more rested. My pressure is only 5 cm on straight Cpap. I am still using the oxygen bled into the system.

There is hope out there! Good luck and keep us posted!

HisServ, my heart goes out to you. My mother taught me many years ago that you have to be your own health advocate. I think everyone in this groups feels that way - that's why we're here. You might want to see if there is a neurologist associated with a sleep lab in your area. Believe it or not, some sleep labs are even located in psychiatric practices. I know the Mayo Clinic where I live has their's in the Psych Dept. What ever you do, please don't quit. Get into see another doctor soon. Maybe call the Respiratory Therapy Dept at your local hospital and get some names from them! Bet of luck to you.

HisServ,

As many ahead of me on this post have said, I completely understand your annoyance and sense of defeat when dealing with your doctor. However, please take advantage of the fact that you are still young and can avoid a lot of health issues by conquering sleep apnea. I am 49 years old, and I believe that I have suffered from severe sleep apnea for at least 40 years or more. I was always exhausted, ill-tempered, and basicaly anti-social. This of course has negatively affected my performance in school, work, and social participation. After many docs just blew it off as not enough sleep, or too soft a bed (I'm not kidding), finally in 1998 during a casual conversation with my allergist, he sent me for a sleep study. I have been on CPAP/APAP ever since and couldn't be happier with the results. I have encountered really bad docs, and really good docs. You just have to keep trying.

So what it comes down to, is that us "old timers" who have suffered for years due to undiagnosed and treated apnea do not want you in our club. Take advantage of your early awareness, and stick with it.

Old joke:
What's the difference between God and a doctor?

answer:
God doesn't think he's a doctor.


Don't think of doctors as anything more than "service providers" as someone mentioned already. If you don't like your auto mechanic, you would take your car elsewhere.

Good luck and don't surrender!
Eric

I hear your frustration and believe or not, it's a good thing It shows that you are concerned enough to do something about it. You are also realy in a good place to arm yourself with all kind of questions to ask the doctor. You have the right to know all the details and make him explain to you. Have the attitude that he has to convince you. That's your right.
If you are not convinced, go to another doctor for a second opinion. As far as work goes, we work to live, not the other way around. Take care of yourself. The whole idea is never "give up" until you are convinced.
Best of luck,

You are in a good place...aware you need help. Stay motivated to find it. Your health is at risk until you do. I was in the opposite place....I denied I had a problem, laughed it off, in spite of embarrasment at snoring till the walls shook when I shared a room with a coworker. in spite of my poor dh's lack of rest (often one of us would end up on the couch so he could get some rest before work the next day), inspite of exhaustion and failing memory. I wanted as little to do w/the doctor as possible and he bugged me for over a year to have a sleep study done because he knew I needed it. Go for it ...don't give up! Terry

Don't put it off to long, I let my quack doc go on longer then I should have and I paid for it, had an Angio in April of this year. As soon as I got out of the hospital though I fired him on the spot and got my new Dr. by referrals from the hospital staff. Like someone said earlier the staff knows how the Docs treat them and they see how they treat their patients, so ask around and see what you can find. Good luck and keep us posted.
Later
Roger

Dang - this sounds too familiar...

I originally went to an ENT for my sleep study - first, he tells me that I am 'perfectly normal' - but orders the Sleep Study to be sure.

Then, I get back for the follow up appt. - and he can't understand why I woke up 80 times in a five hour sleep test. 56 of them were due to snoring. Suddenly, he's all about surgery.

So, he recommends I see another doctor. This sleep doctor is AWESOME! She got me the raw data and gave me a photocopy. Then, she went - pretty much - minute by minute through the results. It was night and day between the two docs.

I'm not sure where you live, but there has to be another sleep specialist at least a few hours drive away. Make the trip, if you have to, and get some relief. I can't tell you how much better I feel since I have my APAP....

Thanks for the advice guys. I guess I just got really frustrated. I almost cried in there with the doctor. I mean I didn't go into REM ONCE the whole night. Why in the WORLD would he think I had Narcolepsy? I just feel like I'm stuck between a rock and a hard place. I don't want to take more time off of work, but I can if I could just find the RIGHT doctor. I don't know how to do that. How can I insure that I get a good doc? Second, I feel like with such a low AHI that I'm just a wimp or something for actually TRYING to get on a CPAP. I feel like this is affecting me, but I'm still functioning. I know I'm young and I guess that's the biggest reason that I would think of pursuing this. I don't think it's going to go away on it's on. I would think it would only get worse and an AHI of 8 turns into 16 or 24 or 50 or 100 later on in life. I guess I'm still trying to figure out what to do. Maybe I should try one of those stop snoring devices because my AHI is so low. I'm just trying to get a grasp on all of this and decide what to do. I just wish it were easy.