Lets Talk Neuralgia
Updated: Mar 9
Have you ever heard of "suicide disease"...
Yeah, me either. Until I got it.
It started like a lightning bolt from my temple to my face. My initial reaction was okay, this is some new weird migraine. So I asked the doctors (yes, doctors) and they had a couple theories. It was really just a guessing game until: no pain medicine work, no hospital infusion, no triptans, nothing. Thats when I heard the words Trigeminal Neuralgia.
Now, this disease is incredibly elusive. It is rather rare with less than 200,000 cases diagnosed each year. Doctors don't know why it happens, theres no real pattern, it's really just random selection. What they do know is that it is typically caused by a compression of the cranial nerves by an artery or blood vessel. This compression slowly wears down the nerves protective layer causing damage and pain.
Which is what happened in my case. I had compression on the 5th, 7th, and 9th cranial nerves on my left side. The 9th nerve compression is what caused my throat pain, difficulty talking and swallowing. They both made it very hard to eat.
The only real option to "treat" TN is to start anticonvulsant medication and to have MicroVascular Decompression Surgery. I did both, and had an additional MVD on my left side 1 year later. It can't be cured and will have lasting effects.
The thing about TN and GPN is that if you don't have it, you can't possibly understand the pain. You can empathize but you cannot understand. It is more painful than any migraine, injury, childbirth and it has been scientifically proven to be one of the most painful diseases in the world. Literally a hair touching the face can cause pain that could make you cry. This is why it has been nicknamed 'suicide disease' because it causes many to have suicidal ideation and to unfortunately follow through on that to escape the pain.
While I was fortunate enough to receive treatment and just struggle with intermittent flare ups, many are still struggling. So, if you or someone you know is struggling with this disease I encourage to research, reach out, and hold on to hope because it can get better with the right support.