I talk about a lot on my blog, and I'm always really open about everything I experience. But sometimes I'm not, and it's because some symptoms I can't fully understand. For many years I have been dealing in varying capacities with what I loving call "Neuro wake-ups." It's a sweet way of saying frontal lobe seizure, but I hate the "S" word. I don't like to throw it around out there into the universe, because it's an intense word and it has such a polarizing feel. I guess a part of me just thinks it carries a stigma and I don't want to go down that road by attaching it to myself. Denial? Fear? Perhaps both. But that's besides the point, because it's what is happening. These occur at night when I fall asleep, but sadly they don't occur without my knowledge. I wake up to them and very much live through them.
These "neuro wake ups" vary in intensity from night to night, but overall as the years go by they have gotten much worse. I can't seem to find a link to it, there is no rhyme or reason for it. Some nights I won't have any episodes, and other nights I will have them all night long (10-20). Some nights they are very minor, other nights they hit very intense. Some nights they will stop happening after 3:00 A.M, and other nights they will continue on until 10:00 A.M. The point is, lately my nights have been the true definition of what most people call a nightmare. I average about 3-4 hours of sleep a night if I'm lucky, and that's only in the morning/afternoon. It takes a toll on my brain as well; these "episodes" leave me feeling very groggy the next day. I can't read, write coherent sentences, or get my thoughts out like I wish I could. It's like someone stuffed my brain with cotton. Alas, my blog has suffered greatly as well as my ability to respond to emails. I often document my episodes in journal entries, and after much though and deliberation I decided to share some of my inner-most entries describing various neurological episodes I've had over the course of the last month. I searched for years to find someone else out there who experiences what I experience and HOW I experience it, to no avail. Because my episodes present so oddly, I always felt like an outsider that no one could help. Traditional methods of treatment do nothing for me. It's my only hope that by sharing this, although it's kind of dark, that someone may read this one day and not feel so alone.
Journal Entry, February 3, 2016 - 4:13 A.M
I lie here begging for sleep. My brain feels like someone ran a cord from a faulty outlet into my brain stem, and it's misfiring, sending zapping shocks. I am utterly exhausted, but when I shut my eyes and fall asleep I get hit with waves of jolts and brain zaps. The zap starts in the frontal cortex and I feel it spread through my brain and trickle down to my stomach where a contraction starts up and I feel simultaneously like I will be sick and if I am gasping for air. All while I'm partially paralyzed and partially flailing my arms to try to breathe. My heart rate shoots up, I'm dry heaving, and as the feeling slowly passes my body trembles and I'm drenched from night sweats. Eventually this all eases, and I am exhausted. Right now, I am exhausted. It's unrelenting. No amount of exhaustion can bypass them. No amount of distraction or deep breathing can suppress them. I know when I go back to sleep it will strike again... this was the 3rd attack of the night. I want to sleep, but what do I do when I know sleep is a scary place?
Journal Entry, February 27, 2016: 5:40 A.M
My brain felt weird. I was still awake when I got dizzy, and then the front of my head got weird, like it was tingly & frontal cortex had a pressure on it. I tried to get to sleep but I woke up at 4:45 gasping for air and not knowing where I am, lots of nausea, and very confused. I panicked. I knocked over my water trying to get help. When I finally got my bearings I was covered in sweat, my heart rate was up to 140, and I was scared. I am still scared. I didn't recognize my own room, and that freaks me out. It feels like someone took my brain captive and is playing a cruel game of tug of war. I desperately long for sleep...
Journal Entry, March 1, 2016: 6:30 A.M
I never want to experience that again. I don't know what it was, but I don't want to have to ever feel it. I laid down to sleep rather early tonight, and awoke to my usual frontal lobe seizure, full of gasping for air, heart rate spike, dry heaves, panic, sweats, etc. But this time, something was very different afterwards. I was awake, but half of my brain was asleep. I can only describe it as, half of my brain was awake, and half was not awake. It was a terrifying state to be in. I got up and walked around, I drank a glass of water, but this disassociated out of body feeling persisted. I could not snap out of it. But when I tried to go back to a full sleep my brain wouldn't let me do that either, triggering frontal lobe attacks each time I tried. I was trapped in this bizarre existence where I couldn't wake up my brain. Eventually, after more than an hour of this cycle I managed to fall into a deep sleep, and this time when I awoke I awoke fully. But my frontal lobe felt very strange... like it was being tickled by a feather in the inside. It still feels that way. When I relax I feel like I am fainting, even though I am lying flat... Sleep for tonight eludes me.
I put all of my faith in God's hands, always. But I am human, and I find myself stumbling when worries and thoughts consume me. It feels like my waking life is full of pain & the only escape I have from it with sleep is also full of pain. I waver with worry on some days, wondering if anyone will ever be able to fix my brain, and repair the damage that the Lyme disease has done to it. Can it be reversed? It truly feels sometimes like my brain is not my own, and it's a scary sensation to come to grips with. I know this post was a bit "darker" than most, but I didn't want to continue with silence on my blog. I felt like it was time to open up about this topic, and put my fears aside.