Cannot function daily life, please help!

[Julie]

Do a paper thing - list each step after you do it, then the next one, etc. and as you go along keep back-checking before going to the next and cross off what you've done. Take your time... yes, it'll be hard, but so will results of not doing it.
Maybe get someone else to help keep track with you, however silly it might seem. You can do it - haven't you done much harder stuff in the past?

[Sluggish]

I skipped from page 1 to page 5 but from what I could gather, it seems to be working for you. Congrats!!

To nail it with the first mask you tried is simply incomprehensible for those of us who are still trying after many years. Cheers to having your life back!!

[Countrygirl]

Thanks julie. Yeah I've done a lot of hard things in my life the only difference is i felt like i had a brain.

[Rob K]

Getting Oscar organized right now is not a big deal, we can all help you work through that. The most important thing right now is to learn how to take screenshots of your Oscar charts. If you have a new Windows 10 computer it would be good to get familiar with Snip N Sketch. Also pick a familiar place to save the files. Maybe create a folder right on the Windows desktop to put all your screenshots in. After you take a screenshot it's simple to post it in your thread here on the forum. Just click on the attachment button below the box were you type in your comments.

[Countrygirl]

Thank you Rob! I will work on that.

[Countrygirl]

Well I went to Pulmonologist today and he wants me to take another sleep test to see if i have narcolepsy. Does anyone here have narcolepsy? So excited for a third sleep test. ‍♀️

[Julie]

Why does he think you have narcolepsy?

[Countrygirl]

I guess because he thinks i have signs of it?

[Julie]

Such as?

[Countrygirl]

Exhausted day and night but i don't know what else. I went to him to see if my machine was giving me enough air and he said something about that i was a mild case and my reading was a 9. I told him that i put my mask on long before i go to sleep but that didn't seem to matter to him. The past 3 nights i have taken my mask off in my sleep...don't remember taking it off. My machine said this morning that i wore my mask 4 or 5 hours last night. So i have no clue what's going on.

[Julie]

I doubt that you have narcolepsy though - you haven't described symptoms of it... I think your MD just doesn't know what else to do.

[Rob K]

I had two sleep studies and two doctors tell me my machine was giving me enough air and they both were wrong. In reality it was only giving me enough air to meet the current medical standard of below 5 AHI. That was good enough for the docs. Not everyone falls neatly into that standard though. From being on this forum I found out there are quite a few people that don't feel better until their AHI is a good deal lower. Everyone is different though. If you start arguing that with your doc your not going to win.

I don't know anything about narcolepsy. From experience I can tell you that doctors are frequently wrong in their assumptions and diagnoses. I would study up on it and get familiar with what it's all about see if it fits with what is happening. Obviously talk to the doc about it, but go there educated somewhat on the subject so you can help them reason through the possibility of actually having it or not.

I had the same experience as you when on cpap for the first two years. I felt bad and very tired all the time, felt no different. They said the machine is doing what it is supposed to and that I have anxiety. Doc was going to put me on meds. After that I found a new doctor because I realized he was wrong and reached the limit of what he had to offer. For me I just needed a pressure increase at the time. Also now I'm just figuring out that I may have a problem with periodic limb movements during deep stages of sleep which wakes me up a lot. That may have very well been a large part of the problem all along and both docs missed that. It even shows on my sleep study graphs.

Do you have copies of the charts or graphs from your sleep study? It would be good to have them for the valuable information that they contain. Plus if you switch docs you will need them. It's good to have every bit of paperwork from all your appointments to keep in your own records. I started a file system for all that stuff so I have easy access to all of it without having to jump through hoops to get it in the future. Check with records keeping for all the places you go and ask for copies of everything they have on you. A lot of places have websites and if you have an account for your hospital or clinic you can download all your documents. After you get all your old records it's easy to keep updated with records for your new appointments.

[Rob K]

I guess it's obvious that I learned to be very skeptical of doctors and what they have to offer. In the early years I did put all my faith in them, but I leaned otherwise. The best approach seems to be to educate yourself on medical issues and make a team effort with your doc to figure things out.

Hopefully you will make progress sooner than later and get to feeling better.

[kteague]

I've had the MSLT test a few times. My first one was a waste of time as my sleep apnea was not resolved, and in another I still had periodic limb movements of sleep. Ideally one will have resolved known issues before the MSLT, as the sleepiness of chronic sleep disruption can muddy the waters when trying to evaluate for narcolepsy. Those sleep deprived can usually take naps at a snap of the fingers so can meet the sleep latency criteria pretty easily. lol Once your CPAP treatment is optimized, if symptoms persist, a test for narcolepsy seems reasonable. If it comes to that, let me know and I'll post a link to a great narcolepsy community. I have not been formally diagnosed as I needed to reach REM in one more nap to be diagnosed. However, my legs were jumpy and I'm pretty sure I would have met the criteria if my legs had been still. Good luck figuring things out.

[DreamDiver]

Well I went to Pulmonologist today and he wants me to take another sleep test to see if i have narcolepsy. Does anyone here have narcolepsy? So excited for a third sleep test. ‍♀️

Depending on the severity of a narcolepsy diagnosis, you may be prevented from driving. If it is severe, you're probably already not driving. In some states, you may require a doctor's note saying your narcolepsy is well-controlled in order to drive. Check out the laws in your state (for those who live in the US.)

https://narcolepsynetwork.org/narcolepsydrivinglaws/

Chris