I awoke this Sunday morning as I often do, speaking gibberish and then my arms began to shake. A partial seizure, I thought. My rib cage muscles locked in place. This was new. I could handle the shaking, but no one can go without breathing. I still had some control over my back and in fighting it ended up flopping around like a fish out of water. I really can't breathe! I thought. All the while I stared at my sleeping wife beside me. She's a heavy sleeper and I had no control of my hands so I couldn't wake her to help me. I was terrified she'd roll over and find my corpse. Just as my fear had escalated to an all out panic, the seizure stopped. I felt like crying, it's normal for me after a big seizure, but I didn't feel like giving in. It would be better to lay here and breathe deeply. I had my cry yesterday, I thought.
I had been on vimpat (lacosamide) for three weeks. Dosage of all antiepileptic drugs (AEDs) has to be ramped up over time so the body doesn't have a negative reaction. I was on day 8 at full dosage Friday evening when my inner right thigh began to itch. As the itch spread to my entire body, no body part was immune, even the inside of my eyelids itched! When large angry red welts began to form on my legs, I knew this was what the doctor had warned me about, the much dreaded rash. Asian patients of Chinese descent are genetically more susceptible to it and have to take a blood test before being allowed to begin antiepileptics (AEDs). There haven't been enough genetic studies done on how these drugs effect everyone else so the rest of us have to cross our fingers and hold our breath. The rash can be as mild as measles or as serious as toxic epidermal necrolysis, about as sexy and often as deadly as ebola. Considering this, all doctors tell patients to stop medication immediately and seek medical attention if a rash occurs. In my case, I called my insurance provider's nurse hotline and then contacted my doctor's office. After a night of claritin and much longer than desired cold oatmeal baths, everything was calm by the next morning.
Saturday morning I remembered there was just one problem. I had to go back on tegretol (carbemezapine) to prevent the serious bouts of extra seizing that can occur by stopping an AED too quickly. Tegretol, being an old school sodium channel blocker, eats at least 20-30 IQ points while in the bloodstream. I didn't care for the dizziness, nausea, and double vision vimpat caused, but at least I had my brain back. I could read and retain information again. I could hold conversations. I could walk from my living room into my study and remember what I needed to retrieve. Last week, it stopped all of my trigeminal neuralgia issues, including breakthrough pain. I was getting my life back. Tegretol steals that and so much more. Many people on it can barely function enough to work. Most certainly can't drive. I'm lucky enough to live in a city with extensive public transportation, but there's no way I could navigate it alone while on that medication. Tegretol makes me zone out so badly I can't safely cross the street unaccompanied. I once found myself at a crosswalk and had to fight to remember what I was doing there. The world around me was visually fuzzy, there were bags with sandwiches in my hands, I must have gone out for lunch. I struggled to concentrate long enough to make it through the next crosswalk. Going back and forth on old and new AEDs is like repeatedly reliving Flowers For Algernon. There needs to be more research. We need better drugs.
Maybe it was how I was raised, but I try not to cry over frivolous things. No one had died and no one was dying, so no tears are necessary. Seizures happen to me often, two to three a day, so I tell myself it isn't worth the time to cry over. I haven't over having one yet, but yesterday I did cry, my third cry this year, including the death of an associate, and the knowledge a loved one who's dealt with inoperable cancer for the past two years will also soon die. I don't know why I keep count. Maybe to prove to myself that I haven't gone soft. Knowing whatever freedom I had Friday morning would be gone by Monday wasn't what made the tears start. That wasn't the worst of it. It was the awareness that I wouldn't be smart enough to care by Monday afternoon.
I once had a 63 year old co-worker who had a prolapsed uterus, easily solved by surgery, but her health insurance wouldn't cover it. Her doctor told her the only option was for her to have a hysterectomy. Saucy woman she was, she replied, "How'd you like it if I cut your balls off?!?" Her doctor immediately understood her point and allowed her to set up a payment plan to prepay for her surgery. I dare not say anything of my feelings on AEDs to my doctor. I've read a significant number of TN and epilepsy patients posts about their end results. Typically, doctors think anyone who is unhappy enough to complain about the negative side effects of AEDs, like not having full faculty of their brain-as normal human beings do, must be unhappy enough to need antidepressants. Are you fracking kidding me?!? No thanks! I know it's the standard solution because depression is a textbook side effect of every neurological disorder. Neurological patients with non-immediately life threatening disorders are supposed to smile, take it, and just be happy to be alive. It's not enough. Quality of life matters. I'd like to see every neurology student forced to take tegretol over 2 weeks holiday break to create more sympathetic neurologists. By the time they have the official MD title, it's too late to instill compassion. I know none of us wants to be confrontational with the doctors entrusted with the care of our brains, but we deserve to lead full lives as much as they do.
Until then, all I can hope for is something that won't make me itch and lose my mind.