Trigeminal neuralgia feels like a special kind of hell. It’s hard to find any other way of describing it, though I’ve tried, and I’ve certainly written novels and stories where the main character suffers with this condition. Describing it is never easy. Nerve pain, trigeminal neuralgia, is hard for anyone to understand if they haven’t been through it.
I enjoyed a nice, long remission period. I took myself off gabapentin and was relying totally on CBD oil and pain cream for a few months. It was lovely. I went for a walk on the beach every day (keeping my face covered, of course) and dealt with very minor pains and sensitivity.
Now, the beast is back in full force. I had a horrible pain attack yesterday that lasted two hours, and the left side of my face continues to be sore from it. This morning, I could feel another attack coming, around six a.m., so I got up carefully and went into the kitchen and took 1,200 MG of gabapentin. It helped. I’m back on my prescription, as much as I hate to be. But it seems that I need it, as much as I despise it. I didn’t wake up until 11:00 a.m., then, and I awoke groggy and weak because I haven’t been eating enough.
I’ve lost a couple pounds in the last week or so, since the pain got worse, and I find I’m hungry a lot but I have no desire to attempt to eat anything. Eating means chewing, and chewing hurts.
I’m so grateful that I work from home. The magazine I write for, Mobile Electronics, doesn’t require me to be in any particular place most of the time, so today I’m working from my bed. I dozed for most of the day, in between writing paragraphs, and finally left the house for a little bit around five p.m.
The sun has set. The fear has returned. I fear going to sleep because it means waking up. The mornings are the scariest times of day, because that’s usually when the attacks hit the hardest.
Trigeminal neuralgia is definitely a special kind of hell.
October 7th is Trigeminal Neuralgia Awareness Day. Wear teal, if you think of it. That’s our color.
And to all those other TN warriors out there: You’re not alone. Even though it’s so easy to feel that way.
Rosa, thanks for being so open and sharing this struggle. I’m glad you are back on your meds and with you I’m hoping for another remission. XO Nancy
Thanks so much, Nancy. I hope that by writing about it I can maybe help someone else out there.
I am so sorry you have to endure such pain. I’m always thinking about you and of course wishing nothing but the best for you always. Let me know if there is anything I can do.
Thank you, Ben, you’re the best. Just knowing you’re out there is a comfort!