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Nocturnal Frontal Lobe Epilepsy? Part 1/2

My epilepsy awareness technically started yesterday. When my neurologist, who was treating me for Non-specific Narcolepsy Type 2 for the past 6 months, finally viewed one of my home videos of what he confirmed looked like a Nocturnal Frontal Lobe Epilepsy. He then told me I would have to see an epileptologist, and I presume, start the entire process of waiting a month or more for an initial appointment, then whatever series of diagnostic processes is required to get to the bottom of this, and hopefully find a solution for some relief. I am so frustrated!

Looking into the info on Nocturnal Frontal Lobe Epilepsy online, it feels like many of the mysteries of my adolescence, college, and 20+ year work career have a root cause! Always tired, sleeping in class, falling asleep when trying to read books, sleeping under my desk at work, drinking 6-10 diet cokes daily, or binging on candy, just to function at all. And, for at least the last 15 years, a reason why the bedspread fabric under my feet gets shredded to bits.

The discovery process was this:

2012 my sleep starts getting noticeably worse (it was always poor for me, but I figured everyone was always tired, to some degree), probably due to work and family stress, I feel like I am hardly sleeping at all. I buy a Zeo Sleep Monitor (a simple EEG) which tells me that I actually am sleeping. plenty of REM sleep, so I guess that's fine.

I notice my work effort (time to complete tasks) starts increasing, it is getting harder and harder to get my work done during the day, so more and more of my nights and weekends are consumed with getting my work done. I always felt like I had to work harder than average to get things accomplished, but at this point it is problematic, deadlines are slipping, work reviews are not as positive as they once were.

My son, born in 2001, is struggling in school, which reminded me of my own school experience (torcher!) we have him evaluated, signs of ADHD and possible auditory issues are discovered. We decide not to medicate him at that time. But I look into the ADHD info (Dr Amen, et al.) and I think, "This is me! This is why!" so I find a psychiatrist and try ALL of the ADD medications, none of them are helpful. I find a ADD support group to find out why, one fellow says Modafinil is the only thing that works for him, my Psychiatrist says that needs a sleep study, which seems like a hassle, so I give up on medications and just keep doing the best I can.

2014 all sorts of bad stuff happen, lose my job (Software Engineer) due to performance, Can't keep up with the new house payments we had built in 2005, file for bankruptcy, marriage is stressed out to the max.

Jan 2017 loose the house to short sale. I go have that sleep study(which I should have done in 2012, I think) which reports Obstructive Sleep Apnea and Periodic Limb Movements (49/hour). I start CPAP. I realize that after an hour or two of sleep that I "activate" and am unable to fall back asleep with the CPAP mask on. My CPAP using friend says, "You'll feel like Rip-Van Winkle on CPAP". I did not, I felt worse. I go back to the sleep clinic and he prescribes Gabapentin and Modafinil. The Modafinil doesn't help keep me awake, it seems to make me more tired. I start Cognitive Behavioral Therapy for Insomnia (CBTi).

CBTi was mostly ok, except for the sleep restriction part. When I would activate after 2 hours of sleep, if I didn't feel like I was going to fall back asleep quickly, I had to get out of bed and do something relaxing until I felt sleepy again. Trying to read a book would make my eyes close, but if I got back in bed, either I couldn't fall back asleep with the CPAP on, or if I did, I activated again and had to repeat that process until the 8 hour sleep window was over. Then I was not allowed to lie down or take a nap until at least 5 hours later. After a day or two of following this rigorously, I felt like I was going to die! The CBTi therapist said you just have to keep doing that, and you will have a breakthru. After 2 weeks of this I had a breakdown! I just couldn't handle it.

They gave me an actigraph, which measures motion on hand, a medical grade fitbit style watch. To wear for 2 weeks. I stopped the gabapentin and did the study. The report showed significant movements during the sleep periods, and some micro-sleeps during the day. They gave me the watch to wear 1 more week, this time using the gabapentin, same results. The CPAP doc says he doesn't know what would cause that. I ask if it's the Periodic Limb Movements, he says, The watch is on your hand, not your leg. He doesn't have an explanation or anything else to try.

Continued in Part 2...

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