It’s difficult to say with any certainty exactly when I developed Transient Epileptic Amnesia (TEA). My feeling is that it began with my post stag-party seizure & collapse in 2010, which was labelled Alcohol Withdrawal Syndrome by the emergency doctor as he was tending to my – first – broken foot. At the time this made perfect sense for I had quit drinking – cold turkey – after a particularly toxic & excessive guys weekend in Vegas to celebrate the upcoming wedding of our dear friend Johnny. “Who knew?”… that you shouldn’t quit drinking suddenly, and that it was better to wean oneself gradually off the booze. The seizure happened at home as I was getting out of bed, a full 3 days after I’d had my last drink. The ER Doc’s explanation made sense, it was viewed as a one-off, and I vowed to never quit drinking again 🙂
Fast forward to May 2012, a full month after I had joined the AA program and gained my sobriety. I awoke disoriented one day but attached no particular significance to this. I was experiencing a brief difficulty with short term memory and was peppering my partner with questions about what had transpired the week prior and what was coming up. Other than a little generalized confusion, my thought was that this was just my brain adjusting to life without alcohol. I wasn’t hungover and this was unusual. After a half an hour of this I shrugged it off as an inconsequential result of quitting drinking. All good.
A month later it happened again. The symptoms were similar but this time it lasted a bit longer – long enough for me to get dressed, leave the house and go grab a coffee. The world appeared slightly changed and both the visuals and the smells were different. I felt like I was a little high, it was slightly hallucinatory but this too dissipated with time, and I chalked it up to further evidence of my post-alcoholic healing. Although I wasn’t overly worried it did register as a unique experience and my level of concern was ramped up to “Level 3”.
The following month, roughly 4 weeks after my previous seizure, I awoke, got out of bed, got dressed, made it to the kitchen and collapsed on the floor. Nothing broken, and I managed to get up quite quickly. This did set off alarm bells however, for myself and my partner, and It was decided that another trip to the ER was in order. What ensued was an impressive trip through the Canadian medical system. Over the next while I was assigned a Neurologist – Dr.Spacey (I kid you not) – and underwent a battery of tests…ECG’s, EEG’s, MRI’s, scans, blood work and conversations with various specialists. I was very impressed with our System and how thorough and attentive it could be – I felt very adequately prodded and poked.
Despite all of this, my Neurologist wasn’t able to come up with a conclusive diagnosis so I was forwarded to an Epileptologist – Dr. Hrazdil. While all of this medical attention and analysis was going on I continued to have these episodes once a month, like clockwork, from May through to December of 2012 – but didn’t suffer another collapse until my final seizure in late December. Throughout this 8 month period , I was more curious than concerned. I had faith in my specialists and was able to witness my episodes more as an observer than a patient. I found the experiences interesting.
In December I was to see my Epileptologist for the last time. Dr H. was 8+ months pregnant and getting ready for maternity leave and motherhood. Despite all the tests, she was uncertain as to the nature of my malady. She had spoken with her supervisor and he was aware of a rare condition called Transient Epileptic Amnesia (fewer than 100 people have been diagnosed with this condition worldwide ) which seemed to fit my list of symptoms, but they weren’t prepared to commit to a diagnosis or prescribe anything as a remedy – just yet – the idea was to “keep an eye on it” and see how things played out. I mentioned to her my suspicion that it may have been predicated on my years of heavy drinking, and the similarity to the Alcohol Withdrawal Seizure I’d suffered in 2010…she remained opaque on this issue and would neither support nor negate it. A few weeks after this final meeting with Dr. H., at the end of December, I had another seizure which resulted in a collapse (my final one) – in the exact same spot that I’d collapsed and broken my left foot in 2010 – the only difference was…this time I broke my right foot.
When you have seizures, collapse, and break things, the medical system fast tracks you, and you move to the front of the queue for further specialist attention. Because my Epileptologist was off having a baby I was plunked back in front of Dr. Spacey – my Neurologist – in rather short order in early January…plastic cast, crutches, contrition and all.
God bless the internet….and Wikipedia. Having received the tentative diagnosis of Transient Epileptic Amnesia from my Epileptologist, I had done my homework and tracked down a bundle of info on Wikipedia, including; symptoms; diagnosis; epidemiology; and treatment etc…and, what finally convinced me that I indeed had TEA was this: “The IQ of people diagnosed with TEA tends to be in the high average to superior range…,” (Courtesy of Wikipedia: https://en.wikipedia.org/wiki/Transient_epileptic_amnesia) …yeah, that was it, it wasn’t the alcohol abuse, it was because I was too smart …I immediately curtailed all excessive intelligence and limited my smart thinking to one day a week 🙂
As I sat with my Neurologist in her office on that cold January morning she asked, “What did your Epileptologist say?..”Well”, I replied, “she thought it might be a rare condition, something called Transient Epileptic Amnesia.” …”Really? Hmmm, I’ve never heard of that before” replied Dr. S. “Well”, I said, “there’s a fair bit of info on Wikipedia”. “Hmm, OK, let me have a look” she said as she pulled out her laptop. For a few minutes she was engrossed in reading about this new condition, and then inquired, “Did Hrazdil prescribe anything for you?” “No”, I replied, “it was just a tentative diagnosis so no prescription was given”. “Well, let’s see what it says on Wikipedia” she said. Diving back into her laptop for a few minutes, with a few nods, “uh-huh’s” and the occasional raised eyebrow she finally went “Oh…OK… Carbamazepine…sure, that’s a fairly well known anti-seizure medication, I can prescribe that for you”…!!…I must admit I was a little stunned…diagnosis to prescription within 5 minutes from Wikipedia! I was torn between the relief of having my condition diagnosed with a prescribed remedy and my inherent mistrust of any information gleaned from the net.
As I sit here typing away on my laptop, in one of my neighbourhood coffee shops, 4 years seizure free, I am still in awe of the implications of the Wiki diagnosis. With fewer than 100 people worldwide diagnosed with this condition, the solution/cure would have been unlikely if not impossible in our pre-connected world…great things ahead for remote communities with limited medical facilities…and one more hurdle overcome on my personal journey of recovery.