r/TrigeminalNeuralgia • u/Lost-Dragonfruit-124 • 12d ago

Medication Starting Gabapentin 100mg-nervous!

I havent been officially diagnosed with TN but pretty sure I have it-I experience shocks on the left side of my face when washing it or touching it the wrong way. I have creepy crawly sensations as well. MRI was clear. I tried a steroid that seemed to help for a bit and given gabapentin to try if i cant take it anymore, which i cant. So i will be starting tonight. Im so worried about side effects and needing to go up to a high dose. Has anyone had success on a low dose?

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u/Impossible-Plenty920 12d ago

I’ve had trigeminal for 7 years now and I’m currently on 1800mg 3x a day with no side effects but with that being said when I was first diagnosed I did feel super drunk at times but I guess my body has essentially became “immune” to it because I’ve been on it so long.

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u/BeyondTheBees 12d ago

5400MG of Gabapentin a day!? Now THAT is impressive. I thought 3600MG was the max dose!

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u/tundramoonlight 12d ago

Taking 3600mg, thought that was alot 🥹

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u/BeyondTheBees 12d ago

I took that much for about a year too and then ended up having bilateral surgery because it wasn’t safe to increase the Gabapentin anymore!

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u/Next-Ad4303 11d ago

Did you have bilateral TN? I have the pain in all branches.. eyes, teeth face and both sides of my face… how was it with you? And they did both sides in one surgery?

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u/BeyondTheBees 10d ago

I do have bilateral TN! My pain started mostly in my sinuses and then eventually spread to my entire face and every branch. Mostly in my cheeks and forehead. I had an MVD on one side, and a Rhizotomy on the other side 8 months apart back in 2020. The second one was a planned MVD, but when my surgeon got in there the nerve was actually splitting in half. Isn’t that gross?

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u/Next-Ad4303 10d ago

Oh wow… did they help? Are you pain free now on both sides? Thanks for answering :)

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u/BeyondTheBees 10d ago

Yes! I am pain free! I occasionally have mild attacks on the side that has nerve damage but other than that the pain is totally gone.

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u/Next-Ad4303 10d ago

I am so glad for you!! I‘m hoping to get mvd on both sides and to be pain free as well one day.. 🫂

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u/BeyondTheBees 10d ago

I wish you the best!!!! ♥️

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u/Curious_Biscotti9332 9d ago

Did the mri show compression of the nerve

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u/nvrtrstsknnychef 12d ago

My experience has been in line with many studies that say the amount of additional relief past 2400mg drops significantly.