Long time since I was here last

[Cr1kk1t]

Hi everyone,

It has been a long time since I was on this forum. I had to reset my password. LOL.

Since I was here last I have been changed to BiPAP almost 2 years ago. I just had a sleep study this past April due to excessive daytime sleepiness (EDS) and they increased my pressures to 16/12. I used 2L of O2 at night along with it as I can't keep my sats up when I sleep. Still suffered from EDS. A few weeks ago we reduced the pressure to 14/10 and increased the O2 to 3.5 due to still having EDS and frequent wake-ups from mask leaks. Unfortunately I am still suffering with EDS and it is getting worse. I occasionally have Automatic behavior(AB) at work and when I am driving but not very often. The AB mostly affects me at work and I am worried that it could cost me my job. Sleep paralysis rarely. So my sleep doctor has ordered an MSLT as he thinks I either have Idiopathic Hypersominia or more likely Narcolepsy. The only partial cataplexy I am aware of is when I get angry I drool out one or both corners of my mouth. Tends to be a bit embarrassing at work. lol. I am fortunate that I don't do anything else. I take Modafinil to take the edge off ( have been for 1.5 years now) and it helps most days but there are days when nothing helps. I am ready to get this test done and hopefully some answers. I may have to change jobs to a more flexible one.

Anyways. I just wanted to pop and say HI. Any spelling errors are blamed on sleep... lol

[Goofproof]

Do you use software to access the data on your treatment, with a nasal mask you may be leaking your treatment right out of your mouth. The software would point to a problem, without using software, your car doesn't have it's steering wheel. Jim

[kteague]

My first thought is to make sure your treatment is indeed therapeutic. And that you're not on any meds that can cause your symptoms as a side effect. How does your sleep seem to you in quantity and quality? Have you ever had issues with your legs moving a lot during sleep? Did your doctor say when to cut off the Provigil before the next study? Generally the MSLT is after another night of sleep in the lab as one has to meet a certain standard of sleep before doing the MSLT.

If it happens that you are diagnosed with narcolepsy, there is an awareness advocate named Julie Flygare (twitter is @RemRunner) who has some great information out there. Hopefully you'll find that some minor tweeking of your CPAP treatment will suffice to give you relief.

[JDS74]

Glad to hear from you after all this time. I'm not surprised that you have difficulty maintaining SpO2 levels at night. I found that I had great difficulty keeping mine above 88% at altitudes similar to that of Colorado. I don't fly anymore because of that.

Do you have a recording pulse-oximeter? It might be useful to check for a few days to see what is going on both at night and during the day.

+1 on having the software so you can check for leaks. SleepyHead and Encore (Windows only) will do that for you and give you a better sense if your therapy is working properly.

I use a Microsoft Band fitness monitor to track wakes at night. Alas, they seem to have gotten out of the business as it is a great device. FitBit does make one that does similar things. You might look into using one of those to track your awakenings. Before I got mine, I tracked awakenings by either taking a BP measure each time I woke up (Omron 791IT recording monitor) or by looking closely at the waveform breathing data to identify wakes by the change in breathing patterns. Getting a handle on the pattern of waking up might be helpful to your doctors.

Hope the MSLT study gets some answers.