This year marks the 24th year I have been dealing with TN type 1 and type 2 and Bell’s Palsy. Before you ask “have you tried…?” Yes, I’ve tried it. I’ve tried it all, it seems. Over a dozen neuropathic medications, a dozen more pain medications like narcotics. I’ve tried microvascular decompression surgery, rhizotomy, motor cortex stimulator, injections, nerve blocks, lidocaine and ketamine infusions, chiropractic care, craniosacral massage therapy, medical marijuana, acupuncture… you get the point. And each of these options has been met with various degrees of success, but many brought on more problems than I had before. For instance, the rhizotomy left me with severely slurred speech. I developed vertigo, which left me walking with a cane for two years. And this was all before I turned 35.
After the rhizotomy, my pain specialist introduced me to a nurse who teaches neuroplasticity at Pain Consultants of Oregon. I’m sorry, neuro-pla-what? Something I haven’t tried! I embraced the opportunity to learn something new. And neuroplasticity allowed me to hone in on the things that I can influence, since so many of the other treatment options were dependent on factors out of my control.
I had never heard of neuroplasticity, so perhaps you haven’t either. Let’s break it down. Neuron + plasticity = neuroplasticity. It is also known as “brain plasticity,” an umbrella term that describes lasting changes to the brain over the course of a person’s life. It gained popularity in the back half of the last century when medical research indicated that there are parts of the brain that remain changeable (or “plastic”) even well into a person’s adult life. Previously, consensus had been that the brain develops during a critical period in one’s childhood and then remains unchanged throughout adulthood. Wait, what? I can change? My brain can still change? Therefore my perception of the pain can change? Sign me up.
Imagine my surprise when I learned that I’ve been incorporating neuroplasticity into my daily life all along. I can drive from my house to my son’s school without thinking about where I’m going. I’m on autopilot, if you will. My brain has adapted to just know how to do this, thereby freeing up space in my brain for other information. Another example: a friend of mine works in a hospital, and she can tune out all of the constant beeping of the machines. Her brain learned how to do that over time. That’s neuroplasticity in its simplest form.
But this ability of our brains to change over time plays an interesting role when pain is factored in. One thing to note – there are big differences between acute pain and chronic pain. Acute pain is the result of tissue injury or bone damage, like a broken finger for instance. Chronic pain, on the other hand, is the disease. In the case of chronic pain, the brain makes maladpative changes to its wiring that make us feel lousy and change ourbehaviour. For people with persistent pain, the brain’s signals don’t allow us to tune out the pain, but rather they go into overdrive and cause us to focus on it.
People with pain can experience a memory or “echo” of their original pain – such as amputees feeling “phantom pain” or MVD patients feeling “ghost pain” while healing. Our brains have been wired to hone in on the pain. But that can change. In the past few years, researchers have begun treating patients who suffer from chronic pain by teaching skills used in neuroplasticity, enabling them to rewire their brain to not feel (or at least decrease the sensation of ) pain. Think of these changes as the brain’s way of tuning itself to meet your needs. But how does that work?
One analogy to explain how the brain builds new neural pathways as new information or pain signals are introduced would be to think of the brain as an old radio (not the digital kind). If you were trying to listen to a particular station and could only somewhat make out the song but started to hear static, you would adjust the knob of the radio to get a clearer signal. Less static, more music. Building new neural pathways is the same thing – the more you focus and practice something, the better you become at learning that new skill or overcoming that obstacle or, in our case, tuning out the pain. By doing this, new neural connections are established in the brain as synapses that don’t usually fire at the same time start to sync up; this helps us sharpen our new skill.
Does it work? Science is starting to point to the notion that it does. Here’s a real-world example: researchers studied the brains of cab drivers and bus drivers in London and looked at the size of their hippocampus, the part of the brain responsible for spatial recognition. It turns out that cab drivers have a larger average hippocampus size than their counterparts on the bus. This seems logical: bus drivers are creatures of habit, driving the same defined routes day in and day out. But cab drivers are constantly learning new roads, neighborhoods and taking different paths based on traffic, construction, etc. Their brains have had to grow and adapt to their new challenges.
It turns out you can teach an old dog (brain) some new tricks. Here are a few basic tools that could be considered neuroplastic techniques to help you use the positive aspects of neuroplasticity and rewire the nervous system connections not associated with pain • New hobbies to help you use the positive aspects of neuroplasticity and rewire the nervous system connections not associated with pain
- Learn ways to manage stress and reduce the focus on your pain
- Exercise and movement done in a “paced” way can help reduce your hypersensitivity to pain
- Retrain the way in which your mind and body interpret and respond to pain
So how have I done it? Well, I’ll admit – I was a bit hesitant and it wasn’t easy. It still isn’t easy, even with a lot of practice. It’s a daily effort and it took me a good 12-18 months to really learn the process for me to be able to find the tools I keep handy in my toolbox in order to live a pretty productive life. Learning to meditate has for sure been the most difficult part for me. As simple as it seems to learn breathing techniques, they take a lot of mental energy to keep going.
Neuroplasticity techniques, mindfulness and lots of selfcare have helped me to not only regain my ability to speak, I’ve also gotten my vertigo issues under control to the point I can walk without a cane. My pain levels generally stay low so I can go on with my day. I am able to volunteer within the community and have lots of family time. My favorite byproduct of incorporating neuroplasticity in my daily routine has been finding all the fun and pleasures in life. My biggest joy is my son; I try and make sure we have some kind of adventure on a regular basis so I get to see the world through his eyes. Even on days I have increased pain, I find myself able to force the pain aside and enjoy the day instead.
It’s been important to find the main triggers that cause the pain and act in a way that intentionally fights them. Don’t get me wrong, I still avoid intense triggers, for instance hot days with the direct sunlight on my face, freezing cold weather or gusty winds. I try to go out in the overcast sunny days and enjoy my wind chimes on my patio. I go for walks with my son, even when it’s a little breezy outside. On days I choose to stay in, I love writing, reading, scrapbooking and baking. I keep a list handy of ways I can care for myself, either outside or inside. The better I feel, the more I find to add to this list – just more tools for the toolbox.
With enough practice, it’s said neuroplasticity could be seen as a “cure” or a way to heal what ails you. I think that’s a stretch. Of course someone who has lost a limb is not going to regrow it. The arteries that are wrapped around my trigeminal nerve are not going to magically unwrap themselves. I do believe, however, that neuroplasticity can get me to a state of remission. When I have an attack that’s more than I can handle, it’s a sure sign I haven’t been working on taking care of myself as well as I should have been. Of course there are some stressors and triggers in life that are beyond my control. What’s most important is I refuse to let the attacks get me down. I now know I’ll have more good days than bad, it takes work and persistence for it to become a way of life.
If I could give anyone advice on pursuing neuroplasticity as an option, it would be to not give up. Even with painful conditions like trigeminal neuralgia, neuroplasticity gets easier the longer you practice it. Attacks are not uncommon for me but the duration and intensity of the pain have been reduced significantly since I introduced neuroplasticity into my treatment.
Look, let’s be real here. I’m not a doctor – none of us on the YPC is. We’re all patients, just like you. And just because this has worked for me doesn’t mean it will work for you, or work in the same way. If there’s only one truth about facial pain patients it’s that each of us is different and has a unique story. The tools in my neuroplasticity toolbox will differ from yours. But if you’re like me and feel like you’ve tried everything, why not give it a shot?
For more information on neuroplasticity, here are a few resources we’ve found helpful:
Neuroplastic Transformation Workbook by Michael Moskowitz and Marla DePolo Golden
The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity by Norman Doidge
This article originally appeared in the Fall 2016 edition of the FPA Quarterly Journal, written by Jenny LeCompte as told to Melissa Anchan. Both are TN patients and YPC board members.