CPAPtalk.com

Pugsy wrote: ↑

Thu Aug 11, 2022 6:14 am

IMHO Part of your brain actually wants to have narcolepsy because there is a pill for that problem.
You want the fatigue issues you are having to be fixed by a pill and the cold hard fact of life is that your train wreck sleep quality may not be from narcolepsy and it's going to be much, much harder to figure it out and fix it.

I am going to be out of touch for about a week starting tomorrow afternoon. Going to Las Vegas to visit my daughter and grandson. So my time here is going to be limited to approving new account posts and not approving spam posts.
I don't do a lot of replies on the iPad I will be taking. Typing on it is a PITA.
You are in good hands with Rubicon though.

I would rather not have Narcolepsy. I would rather it be a sleep quality issue that is more nebulous. I really would. I know you both don't believe me, but I know I have it. I have known sine I was 18 that something was different about me. I now have two doctors who believe I have it, before it was just one. My family also has a history of hypnagogic hallucinations, which is a dead ringer for it.

I appreciate you both talking to me about this. And I know you have my best interest in mind. I really appreciate it. But I won't try to keep convincing any of you about this. I will leave it to the doctors. I believe them. I am excited about getting treatment for a condition I have had since I was 18. If you don't believe me, that is fine.

Furthermore my fatigue issues would not be magically fixed by a pill. They would be fixed by an extremely controlled substance. GHB. I would be taking GHB for the rest of my life. As well as, probably, other stimulants that would be juicing my circulation and blood pressure all the time. Not exactly some thing I’m thrilled about.

My doctor has mentioned that he has patients with severe apnea that have no fatigue issues whatsoever. I know that sleep apnea can cause many of the symptoms that I have and other people have here, but fixing sleep apnea is not a magical fix-all. And you also have to ask yourself why do I have train wreck sleep. There could be a lot of different answers. But it’s pretty clear from the literature that narcolepsy causes tons of sleep wake arousal‘s. So to me it seems like the simplest answer, not the most complex like some of you are making it out to be.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3746724/

It’s a little bit frustrating I feel like I am not being believed, and I am being asked to deny some thing I’ve known about myself since I was 18.

Again I understand that you all are friendly nice people that are trying to help me. I am extremely grateful for that help. But I’m going to stop posting on this thread until after I know more because I am feeling frustrated.

Oh, I believe that you believe and I have zero way to know for sure what is causing your crappy sleep.
And I am thrilled that the doctor is willing to at least do the sleep study and test for narcolepsy.
That question will be answered one way or the other and then you can proceed based on those results.

It's not a question of what I believe or don't believe in terms of your diagnosis...and it doesn't really matter anyway.
All I know is your sleep quality is crappy and you feel crappy. And my bag of tricks, to maybe help, is empty.

My gut tells me you are having lots of spontaneous arousals from some unknown reason. I doubt the narcolepsy as being the culprit but my gut has been wrong before and I freely admit it. To be honest I would almost rather it be narcolepsy because at least you would have a name and face to fight and a pill that should help. Just remember that if you do...those pills come with baggage as well.

So now we just wait and it will seem like it is taking forever....so you probably need to go buy some more patience pills.

Billymadison420 wrote: ↑

Thu Aug 11, 2022 6:17 am

I know you both don't believe me...

With at least 4/5 criteria?

Trust me, I believe.

Rubicon wrote: ↑

Thu Aug 11, 2022 7:06 am

Billymadison420 wrote: ↑

Thu Aug 11, 2022 6:17 am

I know you both don't believe me...

With at least 4/5 criteria?

Trust me, I believe.

Then I misunderstood, my apologies

Yeah well the REM/nap thing was a little sketchy, but that will be resolved at MSLT.

Rubicon wrote: ↑

Thu Aug 11, 2022 7:31 am

Yeah well the REM/nap thing was a little sketchy, but that will be resolved at MSLT.

Oh yes. Any nap I take I have REM. I can go to sleep for 30 minutes and feel like I’ve been dreaming for years.

Billymadison420 wrote: ↑

Thu Aug 11, 2022 7:58 am

Rubicon wrote: ↑

Thu Aug 11, 2022 7:31 am

Yeah well the REM/nap thing was a little sketchy, but that will be resolved at MSLT.

Oh yes. Any nap I take I have REM. I can go to sleep for 30 minutes and feel like I’ve been dreaming for years.

Dreaming occurs in all sleep stages, so what needs to be shown on MSLT is that it is actually REM that is occurring.

I called and am trying to get my PSG/MSLT moved up. I fell asleep behind the wheel last night and nearly crashed my car. I fell asleep in a meeting today. I can barely function.

Narcolepsy, Ideopathic Hypersomnia, Insomnia, whatever you want to call it. I cannot function in my day to day life. My EDS is crippling. I cannot continue to just wait so that every night I hope I wake up one morning rested. That's not a game plan. It's not working.

Billymadison420 wrote: ↑

Fri Aug 12, 2022 10:51 am

I called and am trying to get my PSG/MSLT moved up. I fell asleep behind the wheel last night and nearly crashed my car. I fell asleep in a meeting today. I can barely function.

Narcolepsy, Ideopathic Hypersomnia, Insomnia, whatever you want to call it. I cannot function in my day to day life. My EDS is crippling. I cannot continue to just wait so that every night I hope I wake up one morning rested. That's not a game plan. It's not working.

Billy, thats a tough way to live and I really hope you find some answers soon.

Good luck.

lynninnj wrote: ↑

Fri Aug 12, 2022 11:49 am

Billymadison420 wrote: ↑

Fri Aug 12, 2022 10:51 am

I called and am trying to get my PSG/MSLT moved up. I fell asleep behind the wheel last night and nearly crashed my car. I fell asleep in a meeting today. I can barely function.

Narcolepsy, Ideopathic Hypersomnia, Insomnia, whatever you want to call it. I cannot function in my day to day life. My EDS is crippling. I cannot continue to just wait so that every night I hope I wake up one morning rested. That's not a game plan. It's not working.

Billy, thats a tough way to live and I really hope you find some answers soon.

Good luck.

Thank you! I am hopeful that we are very close to an answer with the doctors, and ultimately treatment.

Billymadison420 wrote: ↑

Fri Aug 12, 2022 11:50 am

lynninnj wrote: ↑

Fri Aug 12, 2022 11:49 am

Billymadison420 wrote: ↑

Fri Aug 12, 2022 10:51 am

I called and am trying to get my PSG/MSLT moved up. I fell asleep behind the wheel last night and nearly crashed my car. I fell asleep in a meeting today. I can barely function.

Narcolepsy, Ideopathic Hypersomnia, Insomnia, whatever you want to call it. I cannot function in my day to day life. My EDS is crippling. I cannot continue to just wait so that every night I hope I wake up one morning rested. That's not a game plan. It's not working.

Billy, thats a tough way to live and I really hope you find some answers soon.

Good luck.

Thank you! I am hopeful that we are very close to an answer with the doctors, and ultimately treatment.

And I hope whatever it is, you find a good online support group.

lynninnj wrote: ↑

Fri Aug 12, 2022 11:51 am

Billymadison420 wrote: ↑

Fri Aug 12, 2022 11:50 am

lynninnj wrote: ↑

Fri Aug 12, 2022 11:49 am

Billymadison420 wrote: ↑

Fri Aug 12, 2022 10:51 am

I called and am trying to get my PSG/MSLT moved up. I fell asleep behind the wheel last night and nearly crashed my car. I fell asleep in a meeting today. I can barely function.

Narcolepsy, Ideopathic Hypersomnia, Insomnia, whatever you want to call it. I cannot function in my day to day life. My EDS is crippling. I cannot continue to just wait so that every night I hope I wake up one morning rested. That's not a game plan. It's not working.

Billy, thats a tough way to live and I really hope you find some answers soon.

Good luck.

Thank you! I am hopeful that we are very close to an answer with the doctors, and ultimately treatment.

And I hope whatever it is, you find a good online support group.

For what I/they think it is (Narcolepsy/IH) I found a great one on FB

Tried a night without the mirtazpine. The AHI went way up. No Idea.

https://sleephq.com/public/fa748806-4fb ... 24a5f3ef8e

Btw. Doctor 2 now suspects Narcolepsy without Cataplexy. PSG/MSLT tomorrow to confirm. Both doctors agree.

I was wrong. I do not have narcolepsy. I am just severely depressed. Thanks for the help everyone. I have problems, but it is not my sleep apnea and it is not narcolepsy/IH.