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Stuck after 2 years. Use: inconsistent; lack of results: consistent.

[Update: Looking at my calendar I realize it's only been 2, not 3, years on CPAP. Oops.]

Hi, I'm having trouble finding out what to do for my specific situation. I would really value some recommendations for threads on this board or original advice if you have time!

Symptoms: 10 years of steadily increasing lethargy, fatigue, irritability. Snoring.
Diagnosis: OSA, 20X/hr (sleep test), 3 2 years ago.
Prescription: ResMed S8 Elite + Respironics pillows @ 5 psi
Change in symptoms: Snoring eliminated by CPAP; no effect on daytime sleepiness whatsoever. In fact, this has continued to increase over time. I now take two meds to stay awake.
Habituation: I have no problem falling or staying asleep with the machine. But I only use it about 40% of the time. I just don't want to bother with a machine that doesn't make me feel any different. It's been one of the deepest disappointments of my life. I wouldn't use it at all if it weren't helping my wife through the elimination of my snoring. She makes me.
Medical consultation: After the first few months I sent my data card into the prescribing doctor, who told me (over the phone) that the data indicated the machine was doing its job and needed no adjustment. About 6 months after that I scheduled an office visit to talk about options. I probably brought the card in again. I was told that if I could stick with the machine for another few solid months, we could then try a daytime narcolepsy study, but that this would require going off my "awake" pill for 2 weeks prior. They'll pry that pill out of my cold, dead hands. I never did it.

Thanks for any direction you may have.

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I am confused, you subject indicates to me that you have been on and off CPAP for the past three years and are surprised that it didn't work.

Your text indicates that you have been on CPAP for about six moths and still have daytime sleepiness, your doctor has said to continue CPAP and to take a daytime narcolepsy study. You are reluctant to take the narcolepsy study because you will have to go off of your daytime stimulants.

I am going to assume that you are looking for an alternative to a narcolepsy study because you don't want tto go off of your daytime stimulants. I would ask the doctor if it has to be as long as two weeks, and if I could taper the dosage to reduce the time that I had to be off of the medication. If that is unacceptable, I would get a second opinion (but I don't think that it would be different).
Pretty certain it was OSA. I have been on various SSRIs for 14 years too, if that makes any difference.

M

D. W. Conn said:
were you diagnosed with obstructive sleep apnea or Central sleep apnea? I just feel like something is missing...but then again i look for missing objects all the time. may not be anything missing.

Matthew said:
OK: 5'7" @ 155 lbs. Neck about 15.5" Very sedentary.

Thanks for the advice!

M

D. W. Conn said:
I you were my patient I would really like to know your height, weight, neck size,diet & excercise level. A sleep diary for a few days. i know we preach it but diet and excercise is so very important. nPAP is only a small portion of treatment... trust me I learned the hard way. no for coffee use it sparingly. high dose of this can cause problems if you are not conditioned to it. those energy drinks..NIGHTMARE IMHO do not use any of them.
OK I just looked at my calendar and it's only been 2 years (oops). So I thought more about the timeline and updated my post (and will reiterate here): The doc brought up the MSLT after about my first 9 months of CPAP use. The reasons I didn't go thru with it are a) yes, I dreaded going off Provigil; b) I was to put in a few months of full CPAP compliance beforehand, but never was consistent enough.

I now believe that I need to make whatever effort is necessary to do that MSLT.

Thanks for your questioning to correct my timeline.

M

Tim said:
I am confused, you subject indicates to me that you have been on and off CPAP for the past three years and are surprised that it didn't work.

Your text indicates that you have been on CPAP for about six moths and still have daytime sleepiness, your doctor has said to continue CPAP and to take a daytime narcolepsy study. You are reluctant to take the narcolepsy study because you will have to go off of your daytime stimulants.

I am going to assume that you are looking for an alternative to a narcolepsy study because you don't want tto go off of your daytime stimulants. I would ask the doctor if it has to be as long as two weeks, and if I could taper the dosage to reduce the time that I had to be off of the medication. If that is unacceptable, I would get a second opinion (but I don't think that it would be different).
I look like the average 38-year-old guy with a potbelly worth about 10lbs.

M

Judy said:
Good on you, Matthew. I like your new attitude!!! Members here CARE and remember their start on xPAP. Very few experience overnight relief the first time they use xPAP. Most of us struggled, some more than others. Some longer than others. You'll get good advice here. I'm delighted you are going to stick w/us AND w/xPAP therapy AND are going to go for that MSLT! You are on the right track now!

Out of curiosity - do you have a short neck?? Are you carrying most of your xtra weight above the hips?
I call it the barley incubator!

Matthew said:
I look like the average 38-year-old guy with a potbelly worth about 10lbs.

M

Judy said:
Good on you, Matthew. I like your new attitude!!! Members here CARE and remember their start on xPAP. Very few experience overnight relief the first time they use xPAP. Most of us struggled, some more than others. Some longer than others. You'll get good advice here. I'm delighted you are going to stick w/us AND w/xPAP therapy AND are going to go for that MSLT! You are on the right track now!

Out of curiosity - do you have a short neck?? Are you carrying most of your xtra weight above the hips?
The barley incubator!!! Good one, Rock Hinkle!!! I'll have to share that one w/my hubby. He has one he's been carefully developing over the last 10 years or so. Prior to that he was always thin as a rake handle. He could never wear a red tie as it made him look like a thermometer.
LMAO

Judy said:
The barley incubator!!! Good one, Rock Hinkle!!! I'll have to share that one w/my hubby. He has one he's been carefully developing over the last 10 years or so. Prior to that he was always thin as a rake handle. He could never wear a red tie as it made him look like a thermometer.

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