Narcolepsy?

I went to my doctor questioning whether I have narcolepsy. The symptom is that I tend to fall asleep whenever I'm sitting down, even when working. This never happens as long as I'm standing up. He prescribed CPAP machine. In use now going on six weeks, there is only marginal improvement. I nodded off at least six times when sitting today. The sleep lasts only a few minutes but is dangerous.

I sleep 4-5 hours/night and am otherwise not tired or fatigued.

I have no trouble sleeping at night and sleep connected to a dialysis machine.

I take 7 medications, ALL of which list drowsiness as a side effect.

Not more alert of feel better due to CPAP; If anything it interferes with my sleep. I am ripping the mask off in my sleep all-too-often but record 4+ hours 50% of the time.

This condition doesn't quite fit the description of narcolepsy to the extent that it only occurs while sitting and the general lack of tiredness. I'm at a loss as to what to do.

Hello and welcome. I feel like I have gaps in my understanding of your situation. Can you clarify what testing you had that caused your doctor to prescribe CPAP? I'm thinking you had a sleep study and titration since the doctor prescribed a pressure. What we don't know is if your CPAP treatment has been optimized. If your machine reports data, that info could be helpful. It does take a while (?) to recover from untreated sleep apnea, you do want to know if any problems may need addressed. Two things you have mentioned are 1) short sleep and 2) sleep without treatment. Until you change these things, feeling significantly better is not reasonably expected. Besides, except when other frank symptoms besides sleepiness are present, other contributors need to be ruled out before suspecting narcolepsy. You have OSA and your meds to consider. Once you've done everything that can be done, if the sleepiness persists, there is a test called MSLT that can look for narcolepsy. Right now your results could be skewed by the above mentioned things.

And I think you need to have a serious sit-down with your doctors to reconsider your meds that all list drowsiness as a side effect.

awayblown wrote:I went to my doctor questioning whether I have narcolepsy. The symptom is that I tend to fall asleep whenever I'm sitting down, even when working. This never happens as long as I'm standing up. He prescribed CPAP machine. In use now going on six weeks, there is only marginal improvement. I nodded off at least six times when sitting today. The sleep lasts only a few minutes but is dangerous.

I sleep 4-5 hours/night and am otherwise not tired or fatigued.

I have no trouble sleeping at night and sleep connected to a dialysis machine.

I take 7 medications, ALL of which list drowsiness as a side effect.

Not more alert of feel better due to CPAP; If anything it interferes with my sleep. I am ripping the mask off in my sleep all-too-often but record 4+ hours 50% of the time.

This condition doesn't quite fit the description of narcolepsy to the extent that it only occurs while sitting and the general lack of tiredness. I'm at a loss as to what to do.

Consider seeing a neurologist. A family member was diagnosed with narcolepsy, and was found 2 years later to actually have small blood clots in his brain. Sleeping 4-5 hours a night, though, is a good indicator that you simply are not getting enough sleep.

kteague wrote:Hello and welcome. I feel like I have gaps in my understanding of your situation. Can you clarify what testing you had that caused your doctor to prescribe CPAP? I'm thinking you had a sleep study and titration since the doctor prescribed a pressure. What we don't know is if your CPAP treatment has been optimized. If your machine reports data, that info could be helpful. It does take a while (?) to recover from untreated sleep apnea, you do want to know if any problems may need addressed. Two things you have mentioned are 1) short sleep and 2) sleep without treatment. Until you change these things, feeling significantly better is not reasonably expected. Besides, except when other frank symptoms besides sleepiness are present, other contributors need to be ruled out before suspecting narcolepsy. You have OSA and your meds to consider. Once you've done everything that can be done, if the sleepiness persists, there is a test called MSLT that can look for narcolepsy. Right now your results could be skewed by the above mentioned things.

I had the mechanical sleep study, that is all. As for titration, don't know that word.

Machine reports data to supplier, I don't get anything other than what is on the ResMed web site. Supplier, who blabs about their wonderful level of care, tells me nothing. Doesn't address my complaints/issues.

What is all this talk about software about? How can I get more info and what would I do with it if I did?

Four yrs. ago I had heart attack and bypass surgery. Afterwards I felt rejuvenated so obviously was not getting enough blood/oxygen to body. Now my blood ox. is always 98-100.

Right now I am totally bummed out on doctors who seem only to want to collect their fee ASAP and get me out the door. IMHO, their level of practice is malfeasant for their lack of interest/care, but that is another matter.

Sleep study report AHI index 52 with 260 hypoapneas, 168 obstructive with significant desaturation (that's BAD). "SUPERVISED TITRATION WITH CPAP RECOMMENDED" See what I mean? My doc didn't even follow up on this report as I get ZERO SUPERVISION. I have tried to make appts. but just get put off.

Trouble is, one can't bitch and get nasty with doctors because they will just get rid of you. Been there, done that.

Titration is the study where they try you at different C- or Apap pressures to find out the best level to treat your OSA... those numbers become part of your prescription for a machine.

Software is what you use to look at different factors the machines report on how you sleep overnight on Cpap. Your machine (if it's 'data capable') will have a slot for an SD card that is read by your computer to generate the reports. Read the first 'Announement' on main pg here to learn more - the program SleepyHead is free to download and info is given on how to do it. Important - some machines (old or cheap models, only give 'compliance' data, as in how many hours you use the machine over a certain time... that's for the insurance co's, so they'll pay for your machine, but it's NOT the data you need to find out how well you're doing on the machine and/or what could be tweaked if certain reported factors are not optimal, so you need to be sure you get the right machine.

blownaway wrote:

kteague wrote:Hello and welcome. I feel like I have gaps in my understanding of your situation. Can you clarify what testing you had that caused your doctor to prescribe CPAP? I'm thinking you had a sleep study and titration since the doctor prescribed a pressure. What we don't know is if your CPAP treatment has been optimized. If your machine reports data, that info could be helpful. It does take a while (?) to recover from untreated sleep apnea, you do want to know if any problems may need addressed. Two things you have mentioned are 1) short sleep and 2) sleep without treatment. Until you change these things, feeling significantly better is not reasonably expected. Besides, except when other frank symptoms besides sleepiness are present, other contributors need to be ruled out before suspecting narcolepsy. You have OSA and your meds to consider. Once you've done everything that can be done, if the sleepiness persists, there is a test called MSLT that can look for narcolepsy. Right now your results could be skewed by the above mentioned things.

I had the mechanical sleep study, that is all. As for titration, don't know that word.

Machine reports data to supplier, I don't get anything other than what is on the ResMed web site. Supplier, who blabs about their wonderful level of care, tells me nothing. Doesn't address my complaints/issues.

What is all this talk about software about? How can I get more info and what would I do with it if I did?

Four yrs. ago I had heart attack and bypass surgery. Afterwards I felt rejuvenated so obviously was not getting enough blood/oxygen to body. Now my blood ox. is always 98-100.

Right now I am totally bummed out on doctors who seem only to want to collect their fee ASAP and get me out the door. IMHO, their level of practice is malfeasant for their lack of interest/care, but that is another matter.

Sleep study report AHI index 52 with 260 hypoapneas, 168 obstructive with significant desaturation (that's BAD). "SUPERVISED TITRATION WITH CPAP RECOMMENDED" See what I mean? My doc didn't even follow up on this report as I get ZERO SUPERVISION. I have tried to make appts. but just get put off.

Trouble is, one can't bitch and get nasty with doctors because they will just get rid of you. Been there, done that.

Thanks for the responses. I've spent many hours now finding and downloading the ResMed 5.5 software and have it up and running.

Somewhere I saw a link to something like an "Interpretation Guide" but can no longer find it. Can anyone direct me to where I might find general explanation of all that data that really doesn't look all that complicated. I simply don't know what it all means, tho some of it is obvious. I assume that most software data is pretty much the same so somewhere there is a general explanation.