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I DIDN'T FOLLOW UP WITH MY NEUROLOGIST..AND SHE DIDN'T FOLLOW UP WITH ME!
I saw my neurologist yesterday and she asked me what the setting was on my CPAP now. I hadn't seen her in 6 months. I didn't know. She told me it was to have been slowly increased. She started it out at a low setting so I would get used to it and her staff was supposed to follow up with me and slowly increase the setting. She never advised me of this and her staff never followed up with me. I am upset to say the least.
I had a little trouble getting used to my CPAP in the beginning but adapted quickly. I felt pretty good for a while but in the last 6 months I started feeling really tired again. I had told her this 6 months ago and she put me on Provigil. It helped but only for about 4 hours a day. I am mad because I was put on this expensive medication and I may not have needed it. Needless to say, I am switching doctors.
I am telling my story because many of us are new and don't know what we should be doing or asking. Please follow up with your doctor if you are still very sleepy during the day. The airflow may need to be adjusted. Has anyone else had this problem?
I had a little trouble getting used to my CPAP in the beginning but adapted quickly. I felt pretty good for a while but in the last 6 months I started feeling really tired again. I had told her this 6 months ago and she put me on Provigil. It helped but only for about 4 hours a day. I am mad because I was put on this expensive medication and I may not have needed it. Needless to say, I am switching doctors.
I am telling my story because many of us are new and don't know what we should be doing or asking. Please follow up with your doctor if you are still very sleepy during the day. The airflow may need to be adjusted. Has anyone else had this problem?
Views: 165
Replies to This Discussion
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Permalink Reply by Mike on
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Absolutely. I've had the same problem, as have other friends I know with Sleep Apnea. I think it's seriously irresponsible/reprehensible for the neurologist to have prescribed a medication when she knows darn well what should have been done and what had to be done -- to incrementally bump up the pressure setting until the setting reached it's proper point. So let me get this straight: she knows that she and her staff messed up, and instead of fixing the problem she wants to continue to ignore it and perhaps make it worse by prescribing an unnecessary pill? Is that seriously what's going on here?
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Permalink Reply by Dan Lyons on
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“When I grow up I wanna be play doctor and study neurology. And so I can make lots of money I wanna have a sleep lab and help people who can't sleep. I will then hire people to do my work for me and pay them a pittance and when a patient complains, I can blame it on their failure.”
The unfortunate side is your story is not an uncommon one. These “sleep doctors” have figured out that can operate sleep labs and practices with a very low overhead and no oversight. While it isn’t all of the sleep physicians, there are a bunch of them out there.
You need to investigate your doctors, their credentials, their practices, and the labs to which they are sending patients.
Practices of this type need to criminal. If that would happen, they would clean up their act, quickly.
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Permalink Reply by KAREN JAFFE on
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I had her show me how to increase the pressure. My machine was at level 4 and I should have been at level 9 so I have increased it. Next week I am going to wear an Oxygen Oximeter to see 9 is the correct level. Then I will find another doctor.
Thank you Mike and Dan for your responses.
Mike said:Absolutely. I've had the same problem, as have other friends I know with Sleep Apnea. I think it's seriously irresponsible/reprehensible for the neurologist to have prescribed a medication when she knows darn well what should have been done and what had to be done -- to incrementally bump up the pressure setting until the setting reached it's proper point. So let me get this straight: she knows that she and her staff messed up, and instead of fixing the problem she wants to continue to ignore it and perhaps make it worse by prescribing an unnecessary pill? Is that seriously what's going on here?
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Permalink Reply by Duane McDade on
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WOW! There's something very wrong here! Provigil! That's not for daytime sleepiness.That kind overkill. If the CPAP is not working it's going to be 1 of like 5 things. From the mask being to loose to just the wrong pressure. It sounds like you're being auto CPAPed. You should have a human look at your sleep insted of a machine. Get a real sleep study, if you can. Good Luck.....Daune
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Permalink Reply by RockRpsgt on
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Karen i am very sorry for the way you have been treated. It is care like this that gives the rest of us a bad name. If there is anything I can do to help please let me know.
Dan once again I'll agree to make errors in judgement criminal at my work place if we can do the same at yours. Outbreaks like this do not help the problem they widen the already huge gap between the medical community and it's pts. i ask once again what you are doing to make it better? In my opinion you should take that big voice of your's and get involved with some of the many community regulatory groups that are out there. maybe become a lobbyist for the new Bill on sleep education.
The hospital and the lab i work for make very little money on pt care after paying off their overhead. Instead they invest in the community at a local and national level. This is where their profit comes from. My lab and all of us working in it are very involved in changing the system here in Indy and in D.C. Not only will i be working my normal 50 hours evaluating sleep this week, but I will also be spending my days off vollunterring at the state fair to help educate and screen for bad sleep. last week I worked 5 days and then did OSA screening at the U.S. open. What have you done to make the system better! You seem like a decent man, instead of bad mouthing the sleep community that has helped you so much, get involved pllease! make a difference.
Dan Lyons said:“When I grow up I wanna be play doctor and study neurology. And so I can make lots of money I wanna have a sleep lab and help people who can't sleep. I will then hire people to do my work for me and pay them a pittance and when a patient complains, I can blame it on their failure.”
The unfortunate side is your story is not an uncommon one. These “sleep doctors” have figured out that can operate sleep labs and practices with a very low overhead and no oversight. While it isn’t all of the sleep physicians, there are a bunch of them out there.
You need to investigate your doctors, their credentials, their practices, and the labs to which they are sending patients.
Practices of this type need to criminal. If that would happen, they would clean up their act, quickly.
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Permalink Reply by Craig Levan on
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Fusion Sleep Center in Georgia is the best
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Oh yes - my airflow was set at 7 from one sleep study which I felt I really had not slept well. I've been having symptoms again, went to my doctor at U of M, and they prescribed an auto adjustable machine for me. Right now it's set between 6 and 12, and many nights I'm waking up witht he thing at 12 - so I may need the range set even higher.
I didn't even know they had auto machines until recently, and don't know why they are not used more often. Not only do they adjust, they also have a smart card in them that records events - so it's like a sleep study right in your own bed!
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Permalink Reply by susan mccord on
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Karen--I agree with finding another MD ASAP. You do NOT have to put up with that crap!!
If I may, could I make an additional suggestion?.....You may want to consider having a cardiac workup. I have heart disease that was diagnosed accidentally. One of the primary symptoms was being tired to the point of exhaustion at times. It's worth a look-see, trust me. HD is yet another disease, undiagnosed and untreated too often, ESPECIALLY in women. Apnea and HD are related in significant ways, as I've recently learned. I'd encourage you to err on the side of being safe.....
-Susan McCord
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Permalink Reply by Elise M Webb on
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I had two sleep studies, the first showed I needed to spend a night on a CPAP to see if it alleviated the sleep apnea symptoms. After the second I heard absolutely nothing and assumed I did not need a CPAP. TWO months later, at my followup appointment the Dr. asked me how it was going? I told him I did not understand the question. He said, how is it going now that you have spent 2 months on the CPAP. I told him I wasn't on it. He looked at me and incredulously asked me why not. When I said I never heard anything back from anyone after my second test. When I said that, he asked me why I did not call them! Hello.......I didn't have any idea that was my job. I am not the person who received the sleep study from the sleep center. I am not the doctor, what am I paying you for anyway. Needless to say, I am now on the CPAP trying to get used to it (for the past week, level 12). There is no other pulmonologist in this area, so until we move, I am stuck, but know that I will call whenever I have any questions, doubts, etc.
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I got my cpap a year and a half ago................have had no follow up...........have never seen a "doctor" even thru the testing in the lab etc. Of course I have to pay the copyay for seeing a "specialist". Was never told anything more than it is set on 11. What do I do now?
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Permalink Reply by Mack D Jones, MD, SAAN on
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Dear Karen, do not waste time, find another sleep specialist asap. The one you have now doesn't understand sleep apnea and correct treatment. It is not likely that she is board certified in sleep medicine because, to me, it is inconceivable she would have treated you in the way you were treated. If she is actually certified in sleep medicine, then the system is in deep trouble and needs a thorough overhaul.
Check to be certain that your next sleep doctor is board certified in sleep medicine before you make an appointment. Certification in their own specialty such as Internal Medicine of Neurology is not good enough. They should be board certified in sleep medicine in addition to certification in their own specialty. Ask for an autoCPAP machine instead of a CPAP machine. In my opinion, CPAP machines should be abandoned (with a few exceptions, i.e.,congestive heart failure or COPD) and autoCPAP or AutoPAP machines with their automatic-air-pressure-adjusting-with-each-breath capability plus a smart card should take their place.
Checking last night's sleep by downloading your smart card each morning can tell you exactly how you are doing from night to night and make adjustments, like mask leak, if needed. You can take the smart card to your doctor's office and have it downloaded (for those physicians who have the equipment can access it in their offices by telemetry) and call you on the phone or you can acquire the software and card reader and download the smart card on your own computer and see for yourself how you are doing, like many on this website.
It would be interesting to know if your doctor is actually certified in sleep medicine. Do you know?
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I'm sorry to hear that many of this have been in this situation. I now realize that it is essential to handle your own follow up with any medical condition. I realize doctors are over worked and under paid (my husband is a Chiropractor) so mistakes will happen. Like many of us, we are new to this and didn't know. We assumed, which we should never do. We have to be advocates for or own health.
Susan, I hadn't thought about seeing a cardiologist. I do have mitral valve prolapse which hasn't given me any problems other than a heart murmur. I haven't been rechecked by a cardiologist in about 5 years because I haven't had any changes but now that you mention it, that could causing part of the fatigue. Thanks for your suggestion. I will make an appointment.
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