When I started my blog, I soon found out I was not the only one who travels with chronic pain and a chronic illness. But I did not find that many people speak about travel with chronic pain on their blogs. I would like to use this space and share more inspiring stories from other travel bloggers who travel with chronic illnesses and chronic pain. Next in the serie of Chronic Illness Chronicles is family travel blogger Megan from WanderToes. She has an amazing story to tell about her daughter Katie and their travel with chronic pain because of Trigeminal Neuralgia.
What is Trigeminal Neuralgia?
When Katie was only 11 years old her Trigeminal Neuralgia started. She was playing with a friend, when she started getting what she called “headaches”, but later we realized she actually meant face pain. She tried to ignore it, but it escalated and she came home in tears, which was very unlike her.
For the next 45 minutes, she lay in bed sobbing. I’m not at all quick to panic, but I was on the phone to her dentist and pediatrician twice each during this first attack. Nothing they told me helped, and they could think of no cause. And then the pain just stopped as quickly as it had begun. This was our introduction to a condition described as one of the most painful known to mankind called Trigeminal Neuralgia, or TN for short.
Trigeminal Neuralgia occurs when one, or in rare cases both, of the Trigeminal Nerves that provide sensation to the face has flawed myelin. If that myelin breaks down and there is anything touching the nerve, such as a blood vessel against or around the nerve, it begins acting like an uninsulated wire.
This triggers excruciating pain on the corresponding side of the face with the slightest stimulation. A cool breeze, any touch or kiss on that side of the face, even eating and breathing can trigger an attack. Katie’s Trigeminal Neuralgia attacks occurred roughly every 12 to 48 hours, and grew in length from 45 minutes to over three hours.
Traveling with Trigeminal Neuralgia
Our travel while Katie’s Trigeminal Neuralgia was active, was often seeking doctors to help us. Early in our TN journey, the children’s hospital in our area told us they had no experience with this, and we should look elsewhere.
Travel to get help for Trigeminal Neuralgia
So, Katie’s Trigeminal Neuralgia took us to New York City, the surgeon couldn’t help us, but we chose to make the best of it and spend some time in Time Square, see Mary Poppins, and have lunch at Ellen’s Stardust Diner.
Travel tip: We fly instead of any long driving to minimize time away from a place to lie down.
Katie’s first MVD brain surgery was in Baltimore, MD. So, we made many trips to Baltimore for consults, testing, and then surgery and follow up. We would have lunch at the Inner Harbor and visit the National Aquarium if she was up for it during these times.
Katie’s first visit to the west coast of the United States was because her Trigeminal Neuralgia had relapsed, and we were there to see another neurosurgeon. We traveled to California for a consult, and then again to have a second brain surgery. We landed at Long Beach airport (an adorable little airport that looks like it fell out of the 1950s) and drove straight to Huntingdon Beach to walk on the beach. Katie stood in the water and chased some birds. When we got in the car, she grinned at me and said, “For a little while, I forgot all about TN.”
Travel Tips: We notified the airline she is a medical priority. We can board early and get extra attention from flight attendants. We also keep all her medication in the easiest to access bag so we aren’t caught unable to get it.
Travel because Trigeminal Neuralgia was Just Life
That brings me to the other kind of travel while her Trigeminal Neuralgia was active: Travel because this may be our new normal. Travel because life with chronic pain is hard, and if travel brings you joy and distraction from the hard parts, it’s worth making it happen.
Travel to Yellowstone National Park
We went to Yellowstone National Park for a long weekend. I will never forget landing at Bozeman Yellowstone International Airport and having a message from the office of the neurosurgeon in California. I was explaining who I was and about Katie’s TN as we walked through the airport. It’s weird the associations we have with those times now.
Then we went on to have a great weekend in Yellowstone and Big Sky, Montana. We had just gotten Katie into a controlled time with her pain, so we spent the weekend seeing buffalo, bald eagles, Old Faithful, the Celestine Pool, and even had a grizzly bear walk near us. There were many times during that trip that Trigeminal Neuralgia was pushed out of our minds.
Travel to Hawaii
Leading up to Katie’s second brain surgery, we decided we needed a whole family decompress time. So, before we headed to California for her surgery and recovery, our family took off to Hawaii for two weeks.
We fed swans and koi and accidentally swam with huge turtles and a sea lion.
And we had Hawaiian Shave Ice and Puka Dogs, and snorkeled under the most amazing rainbow I’ve ever seen. We also found that in the warm, mild climate of Hawaii, Katie didn’t have any Trigeminal Neuralgia pain. Don’t think we haven’t tucked that thought away.
Can you travel with Trigeminal Neuralgia?
I’m sure some people think we were crazy for hauling our “sick” daughter around the country at a time like that.
Travel brings her joy.
It brings us joy.
We were having discussions about long term outlook for a kid with Trigeminal Neuralgia. And we were discussing possible side effects of brain surgery and phrases like “then we’ll move her cerebellum out of the way.” Travel helps us put the big, bad, scary stuff out of our mind for a time. We became a bit of a Carpe Diem family, and when Katie was doing well, we wanted to take full advantage.
Travel with Chronic Pain
The wonderful news is that Katie’s second brain surgery for Trigeminal Neuralgia was successful. We are over 3.5 years past that surgery, and she has never gone back to the horrid pain attacks of TN. We are thrilled, thankful, and living life without Trigeminal Neuralgia.
However, all her body has been through due to Trigeminal Neuralgia means that she does have residual chronic pain. As she recovered from surgery and went off the high doses of medication, we found that her Trigeminal Neuralgia pain faded. Now for the most part isn’t a factor in daily life any longer. But her Trigeminal nerve is still not perfect, having been through the trauma of Trigeminal Neuralgia and two surgeries. For Katie, this means that if she gets sick or exhausted, or stressed out, her Trigeminal nerve can fire up and remind her she needs to take care of herself.
Travel to Europe despite the chronic pain
In 2015, we traveled as a family to England, France, Belgium, and the Netherlands. The first two days in London, Katie had Trigeminal Neuralgia pain that was enough to have us texting her neurosurgeon and fearing we would have to turn around and go home.
The pain did recede and we continued with a wonderful trip, but that was how we discovered that jetlag is an issue for her.
We need to give her more time to recover when traveling.
Once she had the time to rest, she loved London: climbing Lord Nelson’s statue in Trafalgar Square with her sister, Lydia, and both girls buzzed with excitement as we explored Harry Potter Studios in Leavesdon.
Her time in Paris introduced her to the French Language, which she loves and is now studying in school, and frites with mayo in Belgium and the Netherlands are amazing!
Travel Tip: Build in restful days to minimize the impact of jetlag, and recover from tiring activities.
Travel with chronic neck pain
Since her surgeries, she has also had neck pain surface as a side effect. If we don’t address it as soon as it starts, the pain of this can be long lasting, keeping her in bed and taking large doses of ibuprofen for many hours. Sleeping in a bad position, moving her neck abruptly, and tension in the neck muscles can cause it to start up. Over the past 3.5 years, this pain has become a chronic part of her life. She goes through waves of time with more triggers and less, but we always have to be cognizant of it.
Travel to Thailand
When we flew to Thailand last December, we upgraded our seats so she was able to lie flat to sleep. Yep, it increases our travel costs, the literal price we pay for traveling with chronic pain. When we arrived in Thailand, we front loaded the travel with restful activities to try to avoid a chronic pain flare.
We stayed around our friend’s neighborhood the first two days, then moved on to relaxed sailing around the Thai islands. Only after these things did we take on the more active portion, exploring all there is to see in Bangkok and a day trip to Ayutthaya.
Travel Tip: Consider springing for the upgrade to give your body comfort it needs.
Take it slow when you travel with chronic pain
Recently, we flew cross country to experience totality of the solar eclipse. As we landed, her neck pain was starting up. We got Ibuprofen in her, and she used her hoodie and both girl’s backpacks to create a headrest for herself as we drove to our hotel, where she laid down to rest for several hours.
Thankfully, this kept the pain from taking hold, and we were able to head out for a late dinner. The next day, we took it slow and just walked across the street to a field to watch the eclipse. She laid back and used my legs as a pillow to support her head, and caught the best eclipse pictures of any of us.
Travel Tip: Hold your plans lightly and be ready to cancel or reschedule as necessary.
Katie’s Travel Future with Chronic Pain
I could blather on about my hopes for her future with travel, despite her chronic pain issues. But instead, I’m going to let Katie tell you in her own words. So, this is from Katie:
Katie about chronic pain and her travel plans
I know chronic pain means I always have this, but I hope my pain is less and less, and I don’t have to worry about it. But, I know it is a real possibility that won’t happen. I still think I will travel in my life, and even on my own. It’s pain, but it’s not going to kill me. It temporarily disables me sometimes, so I just work with that.
The worst part for me is if it happens in transit. While I’m actually in a plane, car, or train, it’s hard for me to do the things I need to immediately to minimize the pain. Those are the times I have to plan for the most. Once I get to wherever I am going, as long as where I’m staying is nice enough place, having pain happen there isn’t much different than having it happen at home. I’ll deal with it the same way, so why let it keep me from traveling?
The truth for me is, whether I’m at home or traveling, there are some things I can’t do. I can’t be really active in high heat. Something about that can set my pain off. I can’t pack my days full, from the time I wake up until the last minute when I fall asleep. If I exhaust myself, I will pay for it in a chronic pain flare up. I’ll never be the party girl who pulls all-nighters. Having chronic pain, I have to prepare differently than other people for travel, and I have to spend my travel time differently than those who don’t fight chronic pain. But that’s just what my life is, and I can’t let it stop me from doing what I love.
Travel as much as we can
For our family, we have had to live each day, month, and year as it comes. Right now, Katie has chronic pain, so we have made the adjustments we need to continue to travel together. Trigeminal Neuralgia is never considered cured, and we have watched those we love relapse with the condition. Because of that, we, maybe a little more than most, want to do what we love whenever the opportunity presents itself instead of waiting for a vague future that makes no promises. But in reality, that’s true for every single one of us.
Follow Megan and her family on wandertoes.com, as they continue to travel the world, regardless of the chronic pain. Do you travel with chronic pain or a Chronic Illness? And would you like to be featured on this blog in the Travel with Chronic Illness Chronicles? Please contact me with your details at firstname.lastname@example.org and you get a change to share your story!