Last post

So …

A while back, I was talking to a friend who asked when I was going to post something on the blog. After a while I realized that he meant this blog, not my regular blog. I had long forgotten about this site, written in a period of gloom and brain-fogginess.

Here’s my final update. I’ve completely changed medication to Lamotrigine, and I am loving it. After 9 years on Dilantin, it feels like I have woken up from a long sleep. I didn’t realize how dopey I was feeling until this change, and its an amazing difference. And no more bleeding gums – that’s a bonus!

I’m also back driving. Not being able to drive was certainly an inconvenience, but I learned to get by with a combination of walking, getting rides with family/friends, cab rides when needed and cycling. More exercise and less carbon dioxide – how can I go wrong?

In general, life is feeling pretty cozy again. I’m not feeling motivated (judging by the time between posts, I don’t know if I ever was) to keep going on this blog. I’ll continue blogging, of course, on stigmergicweb.org, my main blog, but this is the last post here.

So long and thanks for all the fish.

Mind altering drugs

This may come as a shock to many people who know me, but I take mind altering drugs on a regular basis.

Perhaps some explanation is in order. After my second seizure (9 years ago now) which came at the tender age of 30 years, I was officially pronounced by a neurologist as being epileptic. Epilepsy, at least according to Wikipedia (I’m feeling to lazy to get up and cross the room to look at a paper medical reference right now) is a common chronic neurological condition that is characterized by recurrent unprovoked epileptic seizures. So I have seizures because I am epileptic, and I am an epileptic because I have seizures – a bit of a circular definition but it will suffice.

Upon being so diagnosed, I was prescribed Dilantin (chemical name of Phenytoin sodium, and also known as Epanutin). I have had a love-hate relationship with Dilantin. The love part is pretty straight-forward – while diligently taking it over the past 9 years, I have only had 2 seizures one of which was probably due in part to my not taking the Dilantin. An outcome of this is that I have been allowed to keep my driver’s license and, apart from a little time-out from driving after each seizure, been allowed to operate a motor vehicle. Another benefit is relative absence of the “If I had a seizure …” game, which goes something like this.

I’d like to go for a bike ride. If I had a seizure while I was riding my bike, how bad would that be?

Or here’s another fun one that’s been dogging me this summer.

Gosh it’s hot out today – I’d sure like to go for a swim. If I had a seizure while I was in the swimming pool, how bad would that be?

Freedom from the If I had a seizure … game has definitely made it worth taking the medication. On the other hand, Dilantin has not been without its drawbacks. Side effects that I have experienced:

• dry mouth. I know this doesn’t sound too bad, but when I sleep my mouth dries out and the bacteria that inhabit my mouth (yours too – this is not due to lack of oral hygeine) have a party and cause some really funky bad breath, to the point where my daughter at age 3 would not kiss me in the morning until I had swirled a little Listerine around first. I think that this is also the cause of the possible gingivitis experienced by many Dilantin users
• chronic mental fogginess. Unless I have about 10 hours of uninterrupted sleep, I feel drowsy and foggy-brained until about 2 hours after I wake up. After my third seizure, which was 8 years ago, my dosage was increased enough to cause my blood levels of Dilantin to be in the toxic range; for the month that I was on this too-high dosage, I don’t think I ever managed to think clearly and I was perpetually tired. Even with my Dilantin blood levels in the therapeutic range, the mental fogginess cuts into my enjoyment of life and effectiveness as a parent, spouse and teacher due to decreased mental stamina.

Luckily, relief from Dilantin is on the horizon. I saw a neurologist last week, and he has prescribed that I switch from Dilantin (which, as an added bonus, can accumulate in the cerebral cortex over time, according to Wikipedia) to lamotrigine. The process involves slowly increasing my dose of lamotrigine over the next 2 months while maintaining my dose of Dilantin – what effect this will have on my brain remains to be seen. Once the lamotrigine dose is up to full strength, I will phase out the Dilantin over a period of 4 weeks. I’m a little nervous about having two mind-altering chemicals wreaking havok on my brain, but the chance to get away from Dilantin seems worth it. I have been feeling over the past year that the Dilantin induced brain-fog is getting worse over time (or I’m just getting old, but I’d like to blame some of my mental shortcomings on the medication), so I’m happy to try something else even if possible side-effects include headaches, dizziness, insomnia or a sometimes fatal rash called Stevens-Johnson syndrome. Admittedly, that last one does worry me a bit, but I haven’t been scratching so far!

My seizure history, Part 2

Hmm – this blog is in danger of becoming moribund (and probably will be fairly low-frequency for postings), but so far this summer, my time has been pretty much exclusively devoted to family. We are, as a result, having one of the best summers I can remember!

I’ve recounted my first seizure, or at least my recollection of it. So here’s the story of my second, which happened about 9 years ago. Reflecting on events from that long ago is a bit of a double edged sword – I’m sure I’ve forgotten a few details, but I’ve learned to see some of the humour in the situation.

Like the first seizure, my second came in the morning. In fact, I was still in bed. I had hit the snooze button on the alarm a few times, and I was enjoying a lazy start to me day. There is no dignity in this fact – I was not doing anything heroic, dignified or even sociable when the brain decided to reboot. And the next thing I knew, I was in a room in a hospital with a nurse standing over me, smiling that comforting-and-reassuring-but-still-concerned smile that nurses often have, then asking me if I knew who I was and where I was. I passed the quiz with flying colours.

Unline the first seizure, when I tried to get up I not only had sore muscles and a few bruises, but also a very sharp pain when I tried to move my left shoulder due to the fact that when I had my seizure, I had somehow managed to dislocate my shoulder. You’d think that lying in my bed should be a fairly safe place, but I had managed to have a seizure and dislocate my shoulder while lying there!

After many trips to X-ray (showing only a small chip from the ball of my shoulder joint, but that tiny chip managed to cause a lot of pain), it was time to re-locate the shoulder. You might think that this would involve some pleasant looking physiotherapist or massage therapist gently rubbing the shoulder while softly humming John Denver songs in a hypnotic fashion as the shoulder joint gently crept back into place. Sadly, this was not the case. The last thing I remember before the re-location procedure was being given a shot of morphine and gently sinking into a warm, happy place. This was followed by my wife being asked not merely to just step outside the curtain, but to leave the room and, if at all convenient, perhaps this wing of the hospital. This was followed by my being held down by four(!) interns, while the resident pushed my shoulder back into place very quickly and suddenly. I have also been told that, despite the morphine, I managed to make the interns work very difficult for them while simultaneously demonstrating some of the more interesting vocabulary I learned while a member of the Canadian military reserve forces.

After all this was over, I was seen by a neurologist who decided that since I had had two seizures I now officially had epilepsy. Apparently having one seizure is chalked up as being a bit of bad luck, but having two seizures makes you an official member of Club Epilepsy. I was prescibed Dilantin to control the seizures. I’ve had mixed feelings about Dilantin, but I think that’s probably best left for another post.

Silver linings

It has been nearly four weeks since the seizure. I am often asked by friends and family how I am doing, and I have to admit that I’m doing not too badly. I think my brain has successfully rebooted. Physically I am doing much better – I feel rested up and the aching has gone out of my muscles. (And my tongue feels better – non-epileptics may not understand why this is important, but it is!)

There have been lifestyle adjustments. I am not driving for a while (the good folks who issue drivers licenses will, I am sure, let me know exactly how long this should be), but the weather has been decent enough that I’ve been walking to work most mornings. The walk is now something I look forward to every day, and I’m hoping to continue doing that as long as I can. On days when my daughter has school (she goes every other day to Kindergarten), we all start off walking together. That get’s me about a third of the way to work, then I’m on my own. I carry the cell phone with me when I am walking, just so I can phone my wife to let her know when I get to work. I’m probably safe, but it reassures her that I am safe.

Since I’m not driving, we parked one of our cars for the duration. I don’t know if it will save on gas – my wife is often providing me with taxi service – but we did get a fair bit of cash back on the insurance since the car is not going to be on the road for the next few months (but hopefully no more than that!).

I am, under firm persuasion from my family doctor, getting more sleep. Before the seizure, I would often get only 5 or 6 hours of sleep per night. With a 3 month old and a nearly 6 year old in the house, our lives are often organized around the kids, and after they are asleep we can turn our attention to other things like washing dishes, doing laundry, prepping lesson plans, marking for school or blogging. Once that was done, we might get to sleep at 1:30 or 2 in the morning, then start the whole thing over again at 7 or 7:30. My doctor made it quite clear that this was not acceptable, so it is earlier to bed from now on! Blogging has pretty much faded away for now. Being better rested means that I am not as dependent on caffeine during the day, which was another lifestyle change suggested by the doctor.

The seizure and its consequences on my life have certainly been inconvenient, but I can’t say that some good hasn’t come out of it. Summer is coming up and school will be out for me and my daughter, but my wife and I are planning on keeping up the morning walk routine. Starting our days out together is definitely a silver lining.

My seizure history, part 1

My history with epilepsy and seizures is a bit of a reversal from how many people experience it. Most people who experience epilepsy are under 18 or over 65 (at least, that's what it says on Wikipedia – Epilepsy). For those who experience in childhood, they quite often grow out of it as they get older.

In contrast, I had no indication of any seizure disorders as a child. My first seizure occurred when I was 29. I was working as a teacher on a temporary contract, and it had been an especially busy, hectic, stress-filled and sleep deprived week. Ironically, I had actually taken the Friday off to reward myself for getting through the week. I was feeling so eager about my day off, in fact, that I got out of bed early to go make breakfast for my wife before she went to work. And the next thing I knew, I was in the emergency ward of the hospital. I don't recall any feeling of anxiety – more like a slow awakening. I had hit my head when I fell, but it didn't appear too badly damaged, and I had chewed my tongue while having the seizure so it was really sore.

Since this was an isolated event, I was not classified as an epileptic, since epilepsy is defined as recurring seizures. But I did get scanned in every way available to medical science including an EEG, CAT scan and MRI (although the MRI wasn't until a couple of months later). The outcome of all this scanning was that there was no identifiable cause of the seizure. This is actually a good outcome since when an adult starts having seizures with no previous history, if a cause can be found it is usually something nasty like a tumor. Sometimes no news is good news.

The downside was that I was restricted from driving for 3 months after the seizure. This was a bit of a nuisance but not really too onerous. A colleague from work lived close by, and she graciously provided a ride for me for most of the remainder of the school year (I was allowed to drive again just one week before the school year ended). My wife and I were childless at the time, so we didn't need to provide parental taxi service to any kids. And once my time without driving was up, I was looking forward to driving again without further impediments. Unfortunately, my brain had other plans for me, but I'll save that for part 2.

Down the rabbit hole

It started yesterday. I was working alone at the school, taking a look at some stuff on the computer. And that's the last clear memory I have …
… until I was walking in the hallways of the school. It was a Sunday, so I was alone. Most of the hallways were dark. As I tried to figure out where I was going, I ran into one of my colleagues who asked me a couple of quick questions. I'm not sure what kind of answer I gave, and even though I had given the answer, it felt almost like I was watching myself respond. My mental driver, in a sense, might have been behind the wheel, but he wasn't driving. You might think this would make me feel some sense of panic, but the detachment I felt from the whole episode prevented any kind of anxiety forming in me. How concerned for your own well being do you truly have when you watch a movie? That's what it felt like to me.

Eventually, I found my way back to my room. I still wasn't sure what had happened. It was just after 5 p.m., when I had promised to be back home, so I was concerned that I was late. Making my way back into my room, I saw that my shoes were on the floor by the door – very strange. Walking back to the computer where I was working I saw that I had also left my glasses sitting on the table. This was eerie – I never took off my glasses, and I reached up to my face to verify what I could see. My glasses were indeed off my face. It started to dawn on me what may have happened, and the soreness on the right side of my tongue verified my suspicions. It had been 8 years since my last one, but I had just had a tonic-clonic seizure (also known as a grand mal seizure). Only once I started to realize what was going on did any sense of anxiety develop.