My journey with chronic pain started in March of 2013. I was watching a movie and I got this sudden, sharp pain in my left jaw area. It didn’t last long, thankfully. After that, it happened again during the summer, but this time it lasted longer. Nothing I tried at home helped. I called my primary care physician, and he started trying different medications to see what helped. Nothing did. Eventually in October of 2013 he diagnosed me with trigeminal neuralgia. He referred me to a neurologist who confirmed the diagnosis.
Medication helped keep the pain under control mostly for about a year.
I was able to continue in school (I was studying medical physics), but by the summer of 2014 things were getting unbearable and the medications weren’t keeping the pain at bay, so I had a consultation with a neurosurgeon. I was a candidate for surgery to try and decompress the nerve. After that consult, I ended up in the ER several times a month. By October I had had enough and scheduled the operation for December that year. It was a long wait from October to December, but in mid-December I had what is called a Microvascular Decompression to remove any blood vessels that were compressing the nerve. When I woke up, I had complete pain relief and thought it was over.
Unfortunately, the relief didn’t last. I got two weeks of pain relief and then it came back full force. I was signed up for the spring semester at school, so my neurosurgeon decided to try and compress the nerve with a balloon to damage it. That didn’t work at all. School was a struggle that semester. In hindsight, I should have done a medical withdrawal. In May of 2015, I had what’s called a partial sensory rhizotomy. That’s where they go in and sever the lower two thirds of the nerve. That actually helped! It did a lot to help control the shocks. But after that, I ended up getting an infection and had to have another operation to remove the plate covering the burr hole and a bit of the dura replaced. The infection almost killed me.
In October of 2015, I had the right side of the nerve decompressed and severed. Severing the nerves helped the shocking pain, but it didn’t help the dull, crushing, achy pain. However, that procedure, along with the medications I take, made it bearable enough that I don’t have to go to the ER for pain control. Aside from the oral medications, I also get infusions of IV medications every other week, which help dull the pain immensely.
Fast forward to February of 2020 and it was clear that my trigeminal neuralgia was progressing.
Along with the dull, crushing ache, I got a burning sensation in the lower two thirds of my face. Picture a bad sunburn where you can’t have anything touch it and nothing helps alleviate the pain. That’s what it felt like. My neurologist said that my condition was progressing, which meant my old pain relief management regimen wouldn’t be enough anymore.
Before the coronavirus stuff, I was considering having another surgical consult this summer, but I have been advised to wait until there’s a vaccine to do that. I would like to try some type of neurostimulator or have the nucleus of the nerve destroyed, but that’s off the table until at least next year.
Aside from the trigeminal neuralgia, I also have several other chronic pain conditions. I have occipital neuralgia, which causes pain in the back and sides of my head. It’s a side effect from the operations I’ve had to treat the trigeminal neuralgia. I also have intercostal neuralgia, which is pain between the ribs, due to having a cardiac loop recorder flip sideways and damage the intercostal nerves. I have chronic migraines, which are helped by the infusions. I went from 15-20 migraine days a month down to zero to two. Starting infusions was life changing! And lastly, I have a rare genetic disorder called acute intermittent porphyria. It can cause severe pain, but luckily it doesn’t cause problems unless I’m having a flareup, and there are things I do to prevent the flareups, like eating a high carbohydrate diet.
“Health is a crown the healthy wear, that only the sick can see.”
Living with chronic pain has definitely taught me a lot of life lessons.
Namely to take time and smell the roses. I know it sounds cliché, but it really is the truth. Whenever my pain levels are low enough that I can get out and enjoy life, I don’t take it for granted. I also learned what’s important in life. Before, I was a workaholic. Since becoming disabled and unable to work, I figured out how much life I had been missing out on. What’s important is spending time with family, friends, and loved ones. Don’t let life pass you by and never take your health for granted. You never know when it will all be taken away.
This reminds me of one of my favorite quotes: “Health is a crown the healthy wear, that only the sick can see.” There’s no better way to sum it up. Never take your health for granted, because one day it can all come tumbling down.
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