Transient Epileptic Amnesia

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:   …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.


Embracing Sobriety

I attempted to quit drinking in the old-fashioned way – set an arbitrary date, in this case, wait until after Christmas and New Years (classic!) and then quit on January 1st, 2012 –  but I failed once again because my resolve wasn’t there and I had not yet – genuinely – embraced “the program”. I had started attending a few AA meetings, but was allowing myself to drink when out of town. This – as I’m sure you can appreciate – resulted in more road  trips, holidays and vacations to justify my ongoing habit.

The initial AA meetings were good but I was still only making a halfhearted effort. It’s as if I had observer status but was not yet a member. I watched and listened and even got up and shared, but in fact was continuing to allow myself these out-of-town excursions for the purpose of having benders on the road. A holiday to Mexico with my partner C. did not turn out to be one of my finest performances, multi-day long beer and pot benders with my buddy Dave resulted in the most depressing hangovers I’d ever experienced, and I even found myself “cheating” on occasion by surreptitiously drinking at events in Vancouver that I’d foresworn. It wasn’t until my fateful road trip to the Sunshine Coast in late April that somehow my “Higher Power” stepped in to provide me with the epiphany I need to see the light.

I love road trips. After I’d walked away from the purchase of a property in Halfmoon Bay 6 months prior I decided that Pender Harbour was more to my liking and that I’d focus my property search there. A little 3 or 4 day trip up the Sunshine Coast gave me a chance to have a little adventure and to hit all of my favourite pubs enroute. On April 24, 2012 the last evening of my trip I’d closed down the Grasshopper Pub and had returned to my camperized van to polish off a bottle of wine that I had stashed there. Perhaps I smoked a little weed too, but it really doesn’t matter, I was wasted either way and in no condition to drive. But that didn’t stop me. At some point I felt like I needed to access the internet and I remembered that Wheatberries Bakery in Sechelt had accessible WiFi that I could use, so, I decided to drive the 40 kilometers  down the coast to do so. It was late, it was dark, it was a little cold and the road from Pender Harbour to Sechelt is a windy undulating snake that is somewhat dangerous to navigate at the best of times. With the tunes cranked up and a wine bottle in one hand I ventured forth. Now…nothing catastrophic happened dear reader, I made it to my destination in the wee hours, parked the van, and basically passed out safe & sound until sunrise the next morning,  where coffee and muffins awaited me just feet away from the van at Wheatberries.

But this time was different. This time, on April 25, 2012, I received my wake-up call, and I couldn’t ignore it anymore. The thought that I might actually injure someone else with my drinking and driving was enough of an epiphany to encourage me to quit for good. I called my sister-in-law.

I have known T. for 30 years and, in all that time, she and her husband – my brother in law – have been sober. I knew that I needed sound advice as to what I had to do next. What did I need to do to gain my sobriety? I was, at that point, convinced that I was facing a life or death situation and was willing to do whatever was necessary,  and that T’s learned words would put me on the right path. “Well, George, you’ve got to do 90 in 90”, she informed me in her occasionally stern manner. “What’s that? “, I cringed. “You have to do 90 meetings in 90 days…it’s the best way to overcome your addiction” she said, authoritatively. (She truly knows her stuff). “How is that even possible?” I whined. “Well,” she said, “How often do you drink?”…”Daily” I admitted…”And how many hours a day do you dedicate to your “hobby”? she inquired….”Well…anywhere between 4 and 8 hours, I guess, unless cocaine is involved, then of course all bets are off” ….I got her point. This time, I could no longer put it off. There were no more excuses, no more rationalizations or failure to be tolerated. I would enter the program and embrace it in its entirety. Whatever was asked of me I would do. I knew that AA had saved millions of people from the scourge of alcoholism – I wanted to be one of them. I had arrived.

There are over 100 AA meetings a day in Vancouver. I was fortunate that there were at least a dozen I could attend within walking or cycling distance of my home in Kitsilano. This made it relatively easy to fulfil my commitment to do the 90 in 90 program. During this time, I did not miss a meeting. There is a meme floating around out there that claims it takes 21 days to break a habit. When you are dealing with something as grave as drug or alcohol  addiction it makes complete sense to go the extra mile and really purge the urge, with a 90 in 90 program. I now know people who have even doubled up and done two or three meetings a day, and others who, even after years of sobriety continue to attend meetings almost daily. Its a good program, a great program and – as a mechanism that saved my life – I have nothing but the highest regard for it and can give it nothing but the highest praise.

There are many varieties of meetings with a broad array of members. I have found that there is something valuable to be learned & witnessed in any meeting I have attended. If you leave your mind open, an opportunity for growth and learning will enter. I was fortunate when I entered the program that I wasn’t haunted by the desire to drink – it felt like the obsession had been lifted. Despite this, I moved through the days and weeks and months quite cautiously. I didn’t want to take anything for granted and I cherished every milestone & chip along the way to my one year of sobriety. I had a home group and a sponsor (the amazing and wonderful Phil) and I did a modicum of service work where I could. I’ve made some very good friends in the program and have met some incredibly strong & fabulous people whom I admire.

Within a month of quitting drinking and entering the program I started having unusual episodes of disorientation upon waking. These events happened monthly – almost like clockwork every four weeks – and left me briefly confused about the recent past and the near future…I was convinced that it was just my brain acclimatizing to not being hungover every morning and that these episodes would diminish. After 6 months of this, including  two collapses and a broken foot I was tentatively diagnosed with a very rare condition called Transient Epileptic Amnesia which kept me fairly close to the medical system in Vancouver while I was also working on my completion of one year of sobriety.  Fun times. It was also during this year that my ex-wife – Elaine- was essentially dying of early-onset Alzheimers in an institution that my son and I had her admitted to in 2011.

(The reason I am telling you all of this dear reader is because this blog, Embracing Sobriety, comprises my year of necessary personal transformation & healing following the abysmal previous seven years ( Death Mask Chronicle Parts 1 & Part 2 and just prior to the glorious rebirth and ecstasy I would encounter on the next path moving forward, Searching for Shavasana (Part 1) and (Part 2)…Embracing Sobriety is a bridge between the darkness and the light…a critical requirement before salvation and forgiveness could enter.)

If you are familiar with the AA program you will know about Step 9. Step 9 is one of the pillars of the program and involves making amends or restitution to those we may have harmed during our years of active alcoholism. My ex wife was definitely someone to whom I needed to make amends, and I arranged to do so. Unfortunately, by the time I entered the program, Elaine was in her 11th year of fighting a losing battle with the early-onset Alzheimers that she had been diagnosed with at the young age of 48, and that would soon take her life. But I would try. Although she was confined to a wheelchair in a dementia ward in an institution, and could no longer talk, we truly had no way of knowing what she might be receiving from us through our talks with her. With this thought in mind I went to see her and wheeled her out into the courtyard and sunshine where we could be alone. I must have spoken to her for 20 minutes, basically taking ownership for whatever bad behaviour I had engaged in that may have contributed to the end of our 11 year marriage. She made small noises which I took as some form of acknowledgement, and, I like to think that it gave her some comfort to know that I had quit drinking and that our son would benefit from my reformation in her absence. She died several months later, one week before my first year of sobriety.

Mostly, the experience of gaining sobriety is a positive one. Beyond the fundamental fact that you are likely saving your life and improving the lives of all around you there are very tangible benefits: you gain clear-headedness;  more energy;  more self-love & self-respect; you are likely saving many hundreds (thousands) of dollars  per month, and , if lucky, gain a rosy outlook on the future and life in general. Christmas 2012 though, my first Christmas in sobriety, was absolutely depressing!  …the holidays…Christmas dinner…social events…without booze – who dreams this stuff up? I knew that I’d picked up a little S.A.D. (Seasonally Affective Disorder) along the way but this was painful. The skies were relentlessly grey and the thought of having company for dinner was anathema to me. Some things are just meant to be endured. On the road to sobriety there are many such things. One day at a time Georgie, one day at a time.

Three days later, after this most bleak of festive times,  I would have a seizure – my last – within minutes of getting up in the morning . As I walked towards the bathroom I collapsed – briefly – onto the floor which resulted in another broken foot – this time my left. I had cracked three metatarsals, a non-weight-bearing injury which would put me in a boot and crutches for the next six weeks. This was the third and, hopefully, final time that I would be hauled out of our home via ambulance.

Most alcoholics bottom out prior to entering the program. I had a moment in January 2013 – a few weeks after this episode and a full 9 months after gaining sobriety  – that I consider to be my tragicomic low point. It was nighttime. I had recently come down with a nasty cold and was lying in bed trying to sleep, wearing my protective boot and trying to suppress a cough so as not to wake my partner C. The cough was winning so I decided to go and sleep on the couch in the office…gingerly making my way down the hall on my non-weight-bearing injury…perhaps I crawled. While lying on the couch feeling miserable I could hear – a few feet away from me in the dark – my cat Jet, puking up her dinner and a hairball. “Perfect”, I thought…there was nothing to do but try and clean this up so I hobbled/crawled into the kitchen to get a rag and came back to deal with her mess. While there, in the dark, wearing my boot and leaning over her vomit while on my knees, my nose started to run profusely into her upchuck…I began to giggle…then I laughed until tears came to my eyes. The ridiculousness of my situation and the full realization of the journey that had brought me to this point seemed like the best of tragicomic farce. Hilarious, pathetic, poignant and cathartic…damn, it was just plain funny! And the beauty was that the moment was priceless and necessary…much like my epiphany on the Sunshine Coast, this moment served as a corner that needed to be turned…my foot might be broken but my sense of humour was intact….God I was…lucky! 🙂