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Nocturnal Frontal Lobe Epilepsy? Part 2

Continued from part 1

I find a new psychiatrist to see if there is anything else to try. She puts me on clonidine(ok) and sertraline (ok,for the Mild Depressive Disorder she identifies). I try QuetiaPine(no! Zero sleep!) I try Paroxetine(still tired), Trazodone(more tired!).

Then we try Belsomra, and BOOM! I get an immediate and profound full night of sleep at 5mg. I close my eyes, and next thing I know, it is morning! It is the 1st time I had a night where I wasn't aware of rolling around all night long, at least for as long as i can remember. My eyes are sealed shut with sand (which never happens), and my hips are sore, I figure because I l slept on my back (I was always a side sleeper) and I apparently didn't move the ENTIRE night! This is wonderful, glorious! But it is fleeting, the nights get shorter, so the dose is increased to 10mg, and 3 more decent nights, then shortening, 20mg and 3 more decent nights, then the sleeps get shorter and shorter and I am at the max dose, until I return back to my standard 1-2 hours of sleep then rolling around. The psych tries Methylphenidate for daytime, but nothing, I'm still tired and in my mental fog and can even nap after taking those pills.

I start thinking Narcolepsy, and find a Neurologist listed on the narcolepsy network website, and wait about a month to see him.

Aug 2018 - I have an unexpected and glorious experience. A Colonoscopy. I was put under for just 20 minutes, but when i came out i felt something that I don't remember ever experiencing. I felt mentally awake and aware of the world around me. I felt i could initiate and have complex conversations, which i did. I felt... ALIVE. I didn't expect this, and i'm not certain when it wore off exactly (the rest of that day was awesome!) but it was such a great feeling, I would sign up and go thru the extreme prep measures to feel like that for the rest of the day.

Around this time I find some cheap wifi night vision security cameras at Aldi and start videoing my sleep to see whats going on. On 3 second timelapse I notice my feet are kicking almost constantly thru the night. No wonder the bed spreads are getting shredded. (my wife said she noticed I kicked a little, but blamed the fabric issues on my kinda rough and dry heel skin) this seems more like olympic grade swim kicks.

The Neurologist orders another sleep study and the Narcolepsy test, a daytime nap test called MSLT. It feels like it took me 2 hours to fall asleep in their most uncomfortable bed and a weird CPAP mask (i forgot to bring mine), but their report says I fell asleep in 14 minutes and didn't hit REM for 150 minutes. I am pretty sure I was awake most of that time. They wake me after 6 hours and we start the Nap test, which I failed. Even though I slept before 5 minutes each time, I didn't hit REM sleep, he only noted unusual Bruxism, which he felt was good enough to diagnose Non-Specific(of unknown cause) Narcolepsy Type 2, and he prescribed XYREM, (aka GHB, the date rape drug) If anything was going to put me to sleep, this was.

The XYREM does make me unconscious, usually for about 3 hours (it only lasts about that long in the body), so you need to take a second dose to get thru to the morning. I say unconscious, because I am still the same kind of exhausted in the morning, and since I am videoing my sleep still, I can see the same weird and erratic movements happening every 5-30 minutes (usually) and my legs were still swimming the english channel. The Neuro then prescribed Pramipexole, a dopamine agonist, which made a significant and impactful in the legs, it turned the kicking into mostly mild toe twitches and ankle and knee, more like shifting the gears on a motorcycle. But it allowed me to sleep on my back... then the real weirdness started showing up... I send some videos to my neurologist, he orders a 72 hour EEG (but without the synched video camera (this is a MUST!)) I kept recording my sleep like I always do.

Apparently Im a secret rock and roll star, because when I "activate" from sleeping on my back, I wave both hands up in the air to the crowd, give two ok signs, then point my fingers to the audience. It is the weirdest thing to see, when I showed my wife the video, I expected her to say "Nah, you gotta be awake", but instead she said, "You do that kinda stuff all the time, sometimes you say a few random words. I used to try to talk to you, but you would never respond, so I stopped trying."

I had some complications getting the neurologist to see my rock star video, he was holding on to his original Narcolepsy diagnosis pretty tightly. I finally got an appointment, showed him the video and he said, "That's a seizure, you need to see an Epilepsy Specialist."
Apparently Neurologists don't deal in Epilepsy. I feel like I wasted 6 months trying to convince the Neurologist that there was something more than Narcolepsy.

Fortunately I live near a large city, so finding a Epilepsy Center was not too hard, and surprisingly to me, I got an appointment and only need to wait about 1 week to get in.

So... the story continues... it was pretty touch and go for a while, but I feel if I can understand what is really going on with me, then a treatment and maybe even relief is possible. Stay tuned...


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