Temporal Lobe Epilepsy and Me

It’s been nearly four years since my bipolar diagnosis, when a wee little issue has cropped up. Mainly, that I have been having seizures ever since I was seven, and that I wasn’t screened for epilepsy when I was hospitalized, and that in fact Temporal Lobe Epilepsy is often misdiagnosed as a psychiatric disorder because among a whole host of symptoms it affects mood, emotions, behaviour, etc etc. The more I read about it, the more sense it makes. I’m called bipolar because I have a specific set of symptoms, but when taken into context of my entire body, the seizures, and other cognitive and physical effects, it’s becoming clear that I was most likely completely misdiagnosed. I know what you’re going to say “But you had manic psychosis, that’s not epilepsy.” Oh contraire! The fact was I was taking a high dose of antidepressants, which lower a person’s seizure threshold and I most likely had a cluster of seizures which kicked of several weeks of mania. Yep, epileptics can go into long stretches of mania. And between seizures, we can have intense depressions with suicidal features.

The weird symptoms I have which are particular to temporal lobe epilepsy (TLE) includes incontinence, tingling in my hands, uncontrollable jerking of muscles, butterflies in my stomach, gastrointestinal problems, sudden (how did they say it), basically I suddenly have to shit immediately without warning of more than thirty seconds. I often have a runny nose (and this makes sense because I have between ten to twenty seizures a day) which is indicative of temporal lobe epilepsy and what happens after a seizure. I’ve had a runny nose for years and years and years, and I wipe it with my right hand which points to the possiblity that it’s my right temporal lobe with the issues. At this point in my life it’s progressed to the point that I have difficulties remembering instructions (which lost me a job). Hallucinations, delusions, anxiety, racing thoughts, intrusive thoughts, waves of fear, are all symptoms of temporal lobe epilepsy. People with TLE also report religious transcendance.

Considering my seizures and my occasional grand mal, I’m pretty sure it’s epilepsy. However I also think that bipolar disorder itself is a form of non-convulsive epilepsy, and some research is pointing that way. It’s pretty suspicious that some of the best drugs out there for BD are anticonvulsants originally designed for epilepsy. I’ve been reading all kinds of crap on the internet, epileptics have a high chance of getting psychiatric disorders, psychiatric patients have a high chance of getting epilepsy. What if the vast majority of mental illnesses are in fact forms of epilepsy? After all, epilepsy does have some tests which can be done to diagnose it, although they might prove inconclusive, while mental illnesses have NO clear test or diagnostic technique beyond someone’s opinion who isn’t well educated on other medical illnesses which could cause psychiatric symptoms.

Some people even say that the DSM IV needs to be completely overhauled so that each illness is preceeded by a list of treatable medical conditions which may mimic these disorders. I’ve been reading about misdiagnosis and you would not believe how many people with brain tumors are just put on psych drugs and ignored until their tumors literally begin to deform their skull after years.

I was never referred to a neurologist. I was never given a CAT scan, EEG, or MRI. I wasn’t even asked if I had a history of seizures. The only thing they wanted from me in the hospital was to change my behaviour so that it wouldn’t bother or annoy anyone anymore. Essentially I was having a psychic equivalent to weeks of an unceasing grand mal seizure without appropriate care. Some of the meds I was on and continued to be on until recently lowered my seizure threshold, making me worse than before.

Before I ever started taking psychiatric medicine, I had issues, I won’t deny it. But the worst ones, hallucinations, delusions, psychosis, confusion, memory impairment, those began after I started with medication.

Currently the two medications I’m on now which are working really well for me are Epival and Lamictal, which were originally designed and are still used for epilepsy. There are also a few other medications I could take which might allieviate most of my symptoms. If medication doesn’t work I could get a Vagus Nerve Stimulator implanted, and if that doesn’t work I could have surgery on my temporal lobe which would cut either a small portion out or part of my brain the size of a fist.

Sooo, it’s a lot to figure out all at once. I’m getting a referral to a neurologist and I hope to see him at the end of November or early December. Also epilepsy qualifies me to apply for medical marijuana exemption under category 2, which is definitely cool!

It’s kinda sad, when I contested my diagnosis EVERYBODY got so fucking pissed off at me and told me I had to blindly accept it because I was crazy while they were sane. They didn’t know anything about me except a mere fraction of what I was experiencing and have experienced. And I think of how many people out there are diagnosed with mental illnesses when really we should be getting a much higher quality of care and actually examined for other possible causes.