Gabapentin dosage for trigeminal neuralgia?

Posted by pointeofview @pointeofview, Sep 14, 2021

I am currently on 1800 mg/day of gabapentin, but am still having a fair amount of pain. On a scale of 1 to 10, the background level is about a 2 with occasional flares to a level of 5 or 6.
Does anyone have luck with gabapentin, and if so, what dosages?

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I know well the horrors of Trigeminal. I was fortunate having a doctor who recognised it immediately. Carbomazaprine worked magically for the first few years but later was replaced by a succession of drugs ending with Gabapentin which never worked even at large doses but left me as a zombie. The only thing which has worked for me is Trigeminal Rhizotomy. While the nunbness of the facial nerves is a nuisance there is no pain and I have been free of it for several years. Of course I dred any thought of a return of this terrible scourge. If I were younger I would have had the full surgery but at 87 it a bit much considering my Aortic Aneurism.

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@dianecostella

I take 1,800 milligrams as well. It does help my pain somewhat (I have small fiber neuropathy). I still have pain though. My neurologist also had a compound pharmacy make me a pain compound. The first one wasn’t strong enough so they made me a stronger one. It’s expedited $170 a pump bottle. It helps but I am never pain free. The Gaberpentin does give me horrible brain fog but I I don’t think I could survive without it.

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This is my first time on. I have had headaches for over 85 days and I am taking gabapentin. It sometimes work and sometimes not. I have a mengianoma and am waiting for an appointment with neurosurgeon to tell me about. I’m very nervous about it and have asked for an earlier appointment but have to wait a month. Live in Canada.

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@smudie

This is my first time on. I have had headaches for over 85 days and I am taking gabapentin. It sometimes work and sometimes not. I have a mengianoma and am waiting for an appointment with neurosurgeon to tell me about. I’m very nervous about it and have asked for an earlier appointment but have to wait a month. Live in Canada.

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Hello @smudie, Welcome to Connect. I know it's scary when waiting for an appointment. Here is some information that hopefully will help with the waiting. --- "A brain tumor diagnosis can be frightening, but if you've been diagnosed with a particular brain tumor called a meningioma, there are reasons to be optimistic." --- Meningioma Treatment: https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/meningioma-treatment

I thought you might find the following older patient story helpful aslo --- How a Brain Tumour took over my Life
Diagnosis and removal of a benign meningioma: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074780/

If your doctor prescribed Gabapentin to help with the headaches and it's not working that well, can you ask if there are other options to help until you have your appointment?

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I take 200mg at night, 100 mg in morning and 100 mg at noon. So far have been pain free but who knows whether I'll continue to be all right. Prior to this had a terrible 10 - 15 minute event which is worst pain I have ever experienced.

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I have been reading the many comments in this feed. I have both Trigeminal Neuralgia and Occipital Neuralgia. I have pain when laying down, and I cannot lay on my right side without it causing major pain on the right side of my head and face. I can't wear my glasses for over 5minutes before pain starts. My MRI's show age related disc degeneration, however, NOT in c1,c2,c3 ( which are the nerve that cause head and face pain). But I know this is the primary cause of my pain, because I can move my head and feel the nerves light up. Nothing shows up on an MRI "like a compressed blood vessel" which is typical for TN. I just did a nerve ablation to see if it will help.. 3 weeks in and NOTHING has improved. If anyone who has TN has talked to a spine doctor and had success I would love to know who that doctor is. I did see a neurologist at Mayo, but he classified my situation as cervicogenic heads.. and my situation has gotten much worst since my appointment with him in January. He does not do injections/nerve blocks or anything like that, ( old school doctor) ... I think I need to see someone else at Mayo... If I could find a doctor who can find the "source" of the pain and do surgery I would consider it, but only if they could clearly see what was pressing on the nerves. Any help is GREATLY appreciated, I'm desperate.

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@lisa2022

I have been reading the many comments in this feed. I have both Trigeminal Neuralgia and Occipital Neuralgia. I have pain when laying down, and I cannot lay on my right side without it causing major pain on the right side of my head and face. I can't wear my glasses for over 5minutes before pain starts. My MRI's show age related disc degeneration, however, NOT in c1,c2,c3 ( which are the nerve that cause head and face pain). But I know this is the primary cause of my pain, because I can move my head and feel the nerves light up. Nothing shows up on an MRI "like a compressed blood vessel" which is typical for TN. I just did a nerve ablation to see if it will help.. 3 weeks in and NOTHING has improved. If anyone who has TN has talked to a spine doctor and had success I would love to know who that doctor is. I did see a neurologist at Mayo, but he classified my situation as cervicogenic heads.. and my situation has gotten much worst since my appointment with him in January. He does not do injections/nerve blocks or anything like that, ( old school doctor) ... I think I need to see someone else at Mayo... If I could find a doctor who can find the "source" of the pain and do surgery I would consider it, but only if they could clearly see what was pressing on the nerves. Any help is GREATLY appreciated, I'm desperate.

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This is just a thought, I was in two car accidents, the last one was near fatal. Because the cars I was using had no seatbelts, naturally I was thrown into the windshields head first and smashed each one. I had disk damaged in the neck, between the shoulder blades and in the lower lumbar area. Each one has acted up over the years, the neck mostly in the C3 to C5 area I believe.

I told you about the accidents since I can empathize with you. Roughly 15 years ago, I was exposed to a drug resistant bug and so no medicine would kill them. Finally my ENT suggested the only drug he had to choose, the drug of last resort it’s called because it kills 99.99% of all bacteria in the human body, good or bad. Before he’d prescribe it, he decided to have a special scan done. It involved scanning from the top of the head straight down to the lower part of the neck. This kind of scan might help detect a pinched nerve in the center of the spinal column. The doctor showed me the scan on his computer, looks weird seeing yourself inside from that direction but it could help you. Good luck.

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I've been taking 2400 mg of Gabapentin per day for TN. I've had no pain at all for a year. Then in December I had a very aggressive flareup. I was desperate and called my doctor. He increased my dose to 3300mg. Per day. It worked after 3 days I was pain free again . But I'm worried and scared that I'm on such a high dose. Where do I go from here if I have another awful TN attack in the future? Isn't the maximum dose per day 3600mg? Does anyone know?

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@mlougefre

I've been taking 2400 mg of Gabapentin per day for TN. I've had no pain at all for a year. Then in December I had a very aggressive flareup. I was desperate and called my doctor. He increased my dose to 3300mg. Per day. It worked after 3 days I was pain free again . But I'm worried and scared that I'm on such a high dose. Where do I go from here if I have another awful TN attack in the future? Isn't the maximum dose per day 3600mg? Does anyone know?

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Hello @mlougefre, Welcome to Connect. Drugs.com mentions a different maximum dose for gabapentin for different conditions with 2400 to 3600 mg/day for epilepsy, 1800 mg per day for Postherpetic Neuralgia and 600 mg daily for Restless Leg Syndrome.

-- https://www.drugs.com/dosage/gabapentin.html.

You might find the following discussion helpful:
-- Trigeminal neuralgia: What helps stop the pain?:
https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-5/

Have you discussed your concern with your doctor or pharmacist?

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Hello grandma7,

Does it take care of the hypersensitive skin?

Thank you,

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one of my neurologists, she's sick & has retired, told me to build up slowly during the day, the highest dose to be taken at bedtime. 300 first, 300 in the afternoon, then 400 at bedtime. back then that didn't work. so i just took more. it makes me panicky, just knowing how the pain will be, but today i started having an episode that fingers crossed is not so bad so far. i wear an upper denture, removed it, & didn't do what she had said, took 600 mg @4 pm. using cane (have multiple sclerosis), kept on doing laundry, a few hours later brushed teeth, put denture back, ate egg salad with a lot of mayo to make it soft. pain did return after brushing teeth second time later on, then weirdly stopped. my mouth had begun to feel numb. the pain didn't spread yet. But 300, 300, 400, increase dosage at bedtime if necessary, that's what she advised,.

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