“I wonder if I’ve been changed in the night? Let me think. Was I the same when I got up this morning? I almost think I can remember feeling a little different.” Alice’s Adventures in Wonderland, Lewis Carroll
Night is an old and familiar foe, one I have fought since childhood. Whenever I have a good night’s sleep I feel as if I have accomplished something wonderful. TLE has made all the difference between falling gently asleep versus wrestling with an imaginary enemy.
As a child, I had always had some difficulty with pain, usually head pain, and a change in perception during the night. I was often uncomfortable without being able to put my finger on why I couldn’t sleep well. Then, in the early days of my diagnosis I would not only feel things, but I would also see them. Just closing my eyes seemed to set in motion a whole series of physical responses such as restlessness, pain, voices, and what I think of as alphabet soup. It’s not really alphabet soup— it’s swirling, disturbing visions of demons or images of numbers that seem to be in lights. Some nights it was one light, either pink or green, that bore down on me like the headlight of an oncoming train moving behind my closed eyelids. I was terrified in the beginning as this developed, but eventually stopped being affected by the show. In addition to the fireworks and scary images, there was a feeling of being touched. Invisible hands running up and down an arm or leg, or even moving across my cheek.
Oddly, I remember the tactical experiences from childhood more than anything else. The sensation of touch on my legs made me kick them in the night until I fell asleep, worn out from the constant movement. In college, things escalated due to the stressors I had added to my life. I was now staying up very late with my boyfriend (now my husband) drinking coffee, smoking cigarettes and discussing everything you can imagine. I did not want to give up these late night conversations and at the time had no clue what they were doing to the condition I did not even know I had. When the violent, visual, and tactical hallucinations started, I was at a loss.
All of this night stuff presented a problem. Try telling your doctor that you see the morphing face of Satan and an oncoming train when you close your eyes. So yeah, I kept that whole thing to myself. I cannot even imagine having a doctor not want to refer me to a psychiatrist as many suggested doing. The latest unfortunately was last year when I complained to my GP that I was feeling a lot of fatigue, depression, and no appetite. She immediately suggested I head down the hall to be evaluated by the resident psychiatrist. I resisted, then went home to call a healthcare professional in another state and explained my problem. After some probing of the details, she determined I was unable to process cyanocobalamin, a synthetic form of Vitamin B12. It was in six products I was taking at the time. I stopped taking it and I was fine a few weeks later.
The morphing demons and the oncoming train responded in much the same way when I was treated for seizures. Though I would not be able to continue on the medication very long, it did stop the night stuff. To me this is proof positive that all these things were manufactured by the TLE. They were not residue of childhood fear or emotional instability. They are somehow part of the epilepsy. They are never very far away, and the frequency of their visits depends on how well I am managing my seizures that particular day.I tried to explain to several of my neurologists how medication impacted my experiences and issues, such as hallucinations and perception changes, but I was immediately sorry. One doctor declared I must be schizophrenic (despite the fact that I was rational and far too old a person to be an undiagnosed schizophrenic). At the time, I was going to a good therapist who was helping me deal with the crisis that my TLE had caused. The fact that she knew it was the illness when a neurologist could not understand it just floored me.
The question becomes, as William F. Buckley Jr. used to say, how much you tell your doctor, at what point do you do it, and what should you expect? I guess all of us needs to be thoughtful about symptoms, observant about what changes them, and aware of how strong or fragile we are feeling.
When my demon alphabet soup and runaway train show up at night, I am no longer frustrated and discouraged by their arrival. Now this event serves as a reminder of how far I have come with the TLE. I only wish the medical field had made as much progress in actually looking at the events in an individual’s life and understanding that not everything that is seemingly bizarre is a product of the mind—it might be a product of the brain.