Thursday, January 31, 2013

One week on..

I'm not sure what the weather has been like in your neck of the world, but here in Southwestern Ontario (100 miles west of Toronto), it's be absolutely bizarre. Last week we hit lows of -15C (5F) with a windchill below 0F to an anticipated high of 12C (53.6F) today and an anticipated 14C (57.2F) tomorrow.

Why the weather bulletin, well it has to do with my Trigeminal. I've noted over time the impact the weather seems to have on the effects of my condition. When I used to share this with others, it was hard for them to understand. It's appears that many others suffer from the same irritations, as you can see from the sample posts of other sufferers on DailyStrength's TN group.

Effects of weather on Trigeminal, Causes of facial pain,
Source: Disney from Google
Recent posts from TN group:

Here we go again! The changes of season that I use to Love is now painful. The change in temp or rain is killing me. by: BostonTN

Icy wind is my most consistent trigger, and caused my last attack. I take huge precautions against getting blasted on the side of the face, but have gotten hit there anyway on occasion. Have you noticed a specific pattern with allergies? Some people's attacks seem to correlate pretty nicely with the sharp allergen increases that happen during seasonal changes. by: Jady

A while back, I was given an opportunity to travel to Palo Alto, CA and meet with three incredibly talented specialists at Stanford's Medical Center. I was there to see about participating in a limited trial to find out if an already approved drug could be re-purposed to help in pain management. Unfortunately, the new application did not work quite so well for me, though I did learn a real valuable lesson. You see, it was the very first time that I was encouraged, in fact instructed to monitor and record my pain cycles. What I learned was that the pain is typically always there just in varying degrees (we measure on a scale of 1 - 10) and,  that in knowing comes the opportunity to manage the pain. It also means that I've become a more typical Canadian, paying much more attention to weather forecasts.

So a week on and the weather is playing havoc. I'm keeping positive and focusing on the tasks at hand. Thankfully, Joan is a great calming, caring and empathetic presence in the evenings when I'm not as active as I'd like to be.  Here's a post that can sum up our feelings at times, I post this as I hunker down to stay out of the swirling 55km winds and dropping temperatures outside.

I keep hearing people talk about how much they love the change of seasons and the fresh, crisp air - if only they knew. I used to like it as well, but now it just means more pain and less time outdoors. Honeycrisp apples are available this time of year and they are my favorite. I have to be careful because biting into one and having the sweet, tart juices in my mouth (and chewing) can trigger the pain... Ugh - by: LadyBug.

I'm not usually someone that spends a great deal of time in support groups, but I feel a real affinity for these folks across North America that are sharing their experiences, best practices and understanding.

What is nice about working in 2013 vs when I was first diagnosed is technology. I can still work fairly effectively and when I can't get out (usually doesn't stop me), I can now have a Skype call or Google hangout to advance those in person meetings that are so necessary in business.

Thanks for listening and look forward to staying in touch.

Wednesday, January 23, 2013

The condition my condition is in...

I thought the best place to restart my blog was with a little personal insight about myself.

I've been told on numerous occasions to get my head examined, and in 1996, it became apparent I really needed to. On a blustery day in late fall, I stepped off a streetcar in midtown Toronto, heading home from a very rewarding day of work.  Though the wind was up, to that point it had been a great day and I was looking forward to a relaxing evening at home. As I stepped off the car, I felt a sudden shock on the left-side of my face. I initially thought I'd been hit by a stone/bullet, who knew. There was no blood or anything to show any physical issue, other than the excruciating pain and the fact that my eye was now closing.

I made it home and the odyssey began. I'll keep this part short, after months (in fact 18 of them) and five trips to different ear, nose and throat specialists, I was introduced to a very compassionate and caring neurologist in Toronto who diagnosed my condition as Trigeminal neualgia (Great breakdown from the U.S. National Library of Medicine Trigeminal Neuralgia explained). Essentially the way I normally explain it, the protective coating on the facial nerve (much like an electrical wire) has been stripped and the live nerve (wire) is exposed and easily triggered. The pain that occurs is hard to describe and unless it's completely shut down my eye and I'm unable to speak briefly, hard for others to see. The condition comes and goes and can occasionally be controlled by medication that make me feel very dopey (I avoid taking it whenever possible).

Chronic Pain, Facial pain, Tic douloureux
Source: Wikipedia Commons
      I've had my condition for so long, that I've actually learned for the most part to manage the pain via meditation, relaxation techniques, being as busy as possible and more. In 2011, with Joan's blessing and Spencer's great concern, I visited a neurological surgeon in London to discuss the option of having surgery. The verdict is still out on the overall effectiveness of long term relief, and we're still looking at this option. The major downside is the absolute fear Spencer has (unfounded, but he is only 10) and the amount of recovery time (the surgeon said up to 12 weeks at home).

But to get back to the purpose of this post; since December 2012 the pain has increased significantly again. This is not unusual as it can ebb and flow when it strikes, but this recent bout seems more pronounced. It's most aggressive when it first returns, and I'm out of training in managing it. I'll be rescheduling another appointment with the surgeon and revisit the options. The medication I'm taking is less effective today than it was initially and frankly, I'd rather manage the pain and be lucid than not.

So to the purpose, I'm going to use this form to track the progress and share with you our family's journey. In addition, I'm asking for your assistance. Part of my pain management program is trying as hard as possible to control how I relate to others. I've found that when battling the issue, I can lose patience much faster than normal. If you catch me feeling sorry for myself or being rude, please kick my butt. It's a fine line for me occasionally as I can be a passionate defender of my beliefs ;). Spencer is really good at keeping me grounded. They say that what can't kill you, only makes your stronger. This definitely can't kill me, but it is very annoying at times.

Thanks for listening and for understanding. Have a great week - I plan on it. :)

I'll be starting a new blog as well focusing on business, social media, customer relationship management and more. That blog will be written twice weekly and the first edition will be out in February 2013.


With props to Kenny Rogers and the First edition: