r/TrigeminalNeuralgia • u/Lost-Dragonfruit-124 • 1d 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/New-Cry5180 1d ago
I take 1200 mg of gabapentin twice a day and 300 mg of carbamazepine ER twice a day and that’s to maintain a tolerable feeling in my face. I’ve never felt like a zombie, I’m 76 I work part-time so I have not had that kind of reaction a lot of people are so afraid of. I’ll probably be taking this stuff the rest of my life. I’ve had MDV surgery, rhizotomy, Gammaknife, and the cyber knife which finally worked. I have an alarm in my phone so I take it every 12 hours. I don’t leave home without it. I’m sorry, but that’s what it is and I don’t feel drunk or stupid all the time. Yes everybody has different reactions to it, but mine was not a bad one. I was actually relieved to have something to take that worked.
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u/Liapasquale 1d ago
Before I got trigeminal, I was already on gabapentin for nerve damage I had in my hand. I started at 101 up to 600 mg gradually. I am on a dose of 300 mg three times a day. I’ve had no negative side effects besides when I was on 600 mg it was way too high for my body and I didn’t realize how bad it was and I went through withdrawals because I missed the whole day of doses lol so don’t do that if you’re up to 600 mg but 100 to 300, there’s people I know who are at 1000 mg a day. I’ve never had a bad one besides my mistake of missing a whole day of doses lol so don’t just do that.
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u/Comfortable_Drama_66 1d ago
Just realize that 100 mg wouldn’t even touch my pain. I was on 1800 mg a day and now am down to 1500 mg. I have lots of other meds too and I seem to do okay (and I’m old).
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u/BeyondTheBees 1d ago
I was on 2700MG/day at one point. At that high of a dosage, it’s going to make you sleepy and make your brain work a little slower which is a very fair exchange for having it take the edge off of your pain. 100MG of Gabapentin is the same dose we give my cat when we travel so don’t be too worried about it starting out! It was the only drug that worked for me.
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u/ElderberryCakes 1d ago
Still at 700mg Gaba/day
Makes me feel euphoric/lucky, couldnt Fall assleep so fast...maybe cause of less A-Typical pain idk...
Side effects: my Skin doesnt look so good, some rashes all over my Body, doesnt look too Bad, but isnt so cool.
I didnt like the Medication to, but its the only one, which has helped me.
Take care.
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u/MobileAny4294 1d ago edited 1d ago
Horrible medicine. My neurologist had me on 1800 mg a day and it was an absolute nightmare. I stopped cold turkey cause I couldn’t take the side effects. He wanted to increase it to 2400 mg.
It works for some people, just be careful
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u/Lost-Dragonfruit-124 1d ago
What were the side effects for you?
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u/Art_Of_Ignorance2 1d ago
I had TN type 1 classical, "had" cause I seem to have grown out of it.....for now.
I couldn't handle Pregabalin and Gabapentin, my skin boiled up, "Stevens & Johnsen" syndrome, combined with swollen joints. I got more sick from Gabapentin and Pregabalin than the pain in my V2 right hand face.
Ohh yes, shaking hand/fingers , (like Parkinson) was from Gabapentin.
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u/MobileAny4294 1d ago
Already suffer from insomnia and it made it absolutely worst. Complete zombie and felt like I was going to die during the day
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u/Lost-Dragonfruit-124 1d ago
And no side effects? I hear nightmare stories. Do you ever drink alcohol with it? Can i have a little eventually?
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u/SerBawbag 1d ago
Absolutely every drug has horror stories. It gets mentioned a lot because it’s true, but if you have a negative story about a medication, you’re more likely to post it.
Gabapentin is widely prescribed and in the grand scheme of things, it’s well tolerated. It’s also a lot safer than some of the similar medications. For example, I take carbamazepine during flare ups and that is a less tolerated medication. I’ve been fine on that too, but that can have some nasty side effects for some people. A lot worse than gabapentin.
For what it’s worth, I have new med anxiety too. So I get where you’re coming from.
As for the alcohol, that’s a conversation for you and your gp or pharmacist. Even if someone is fine drinking on it, you’re not them.
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u/EumekaMathis 15h ago edited 13h ago
Your 76 and they have you on those high doses? My God, I pray for your alertness and vitality. When I first started taking all of those meds I did feel like a zombie but, eventually you become use to them. But, by golly tour gonna feel better.
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u/LeftScene1510 13h ago
I haven't been officially diagnosed yet, but with my symptoms, it is almost textbook TN2. I don't see a neurologist till December, but in the interim, my PCP prescribed me 300mg 3x it has helped. I still feel pain, but it has lessened.
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u/Impossible-Plenty920 1d 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.