User Reviews for Gabapentin to treat Trigeminal Neuralgia
Also known as: Neurontin, Gralise, Gabarone, Fanatrex
Gabapentin has an average rating of 7.8 out of 10 from a total of 31 ratings for the treatment of Trigeminal Neuralgia. 77% of reviewers reported a positive effect, while 16% reported a negative effect.
Neurontin (gabapentin): “I have been on Gabapentin for a few years now and I have found it helping control the Trigeminal Neuralgia pain with 800mg 3x daily. However, also have found that if I forget to take it consistently, the pain returns immediately. I am hoping that it will continue to work for as long as needed. Research I have done indicates that one usually can come off the medicines after 1 yr and that the pain does not return, but have not been so lucky. I have not had any other side effects so far with it nor any other medication I have been prescribed for conditions. One word of note, this medication did help but only after being on it for at least 2 weeks, so my recommendation would be - give it a chance to work when starting this medicine.”
“I have had trigeminal neuralgia for about six years, I am 32. Luckily for me the pain has been bearable and I felt I had not needed medication until this year (2014) when the pain became really agonizing. I have been pain free since starting the med. Every now and then I will get a little twitch or pinch from the trigeminal nerve, but nothing like the shooting pain I was having before. I take 300mg every night before bed. Recently, there was a mix up with the prescription refill and my insurance, and due to these circumstances I went about a week without taking the medication. The trigeminal pain slowly came back and became more and more intense during the time I had run out. This medicine is great, pain went away soon after taking it again.”
“Diagnosed with Trigeminal Neuralgia 12 yrs ago and put on Neurontin(Gabapentin). This worked well for me and I rarely had an incident of Trigeminal N. pain. I've backed down from my 3x day 600mg dosage over the yrs to a 2x 300 mg. with good affect. Recently at age 72 I had a stroke which left me with aphasia and apraxia. My body was relatively unaffected, but my speech is a big problem. Neurologist suggested slowly coming off Gabapentin. I gradually skipped a dose now and again to get to the point of no Gabapentin. Shooting hot pain returned in my temple and down the right side of my face. Back on Gabapentin. This was a good reminder to me as to how much misery Gabapentin was protecting me from. Love Gabapentin!”
“My mom has Trigeminal Neuralgia. This drug has been a true lifesaver for her!!!! She takes 3600 mg/day (two 300 mg every 4 hrs.). If she has a “flare up” (severe shooting pain in jaw area/face) - she takes 3 capsules right away, and it’s the only thing that stops the pain. We are SO grateful for this medication and encourage all TM patients to try it.”
Neurontin (gabapentin): “I was diagnosed with Trigeminal Neuralgia if Feb. 2005. The pain associated with this is excruciating, to say the least. I have never had such pain in all my life. Just two nights ago I was in the ER with another episode. The doctor prescribed me Neurontin. I slept so good last night! The first good night's sleep I have had since I can remember. My episodes happen unexpectedly and it could happen at the drop of a hat. Then I might go a year before another "attack". I just never know when this will occur. But I do know one thing, I would not wish this on my worst enemy. I am praying that the Neurontin will help subside the "attacks" and the horrible pain associated with Trigeminal Neuralgia.”
“I was given this med for TN pain, after I went to my dentist and he found nothing wrong with my teeth. That same day, my dentist called my GP. GP got me in right away. I was sent for facial x-rays to check for sinus infection, nothing. So my GP made several calls and got me into a neurologist, in the mean time, he asked her what he could give me for pain since at this point I had lost 10 lbs and was missing work. They put me on Gabapentin and Amitriptyline. It took a couple of days, but wow, when it started to work it was AMAZING for pain relief. They have upped me to 600mg 3 x a day and now at about three everyday I am a little high. But, the best side effect ever has to be that a my pain, anxiety, period cramp pain and insomnia are gone!”
“I am now 79, but had trigeminal neuralgia attacks for at least 35 years. I would get an unprictable jabbing pain on either the right or the left side of my face about once or twice a year. For years I did not know what caused it and simply toughed it out. It was usually gone after about a week or so. About ten years ago I mentioned it to my family doc who sent me to a nerve specialist. He diagnosed it right away and prescribed Neurontin. Now, when I feel the first jab coming on, I take one or 2 pills and follow it up with additional pills until the pain goes away, usually in 2 or 3 days. ”
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“All branches of the Trigeminal firing with chewing, talking, brushing teeth, etc. Neurontin works wonders. I'm taking 400 mg every 3 to 4 hrs...with relief after 3 doses. HAVE TO TAKE IT REGULARLY. Have taken even higher dose when I had very painful bouts (for 10 yrs) and also had glossopharngeal (9th nerve) neuralgia. Breathe and exercise to keep centered and balanced. No bad side effects like many other medicines I've tried. ”
Neurontin (gabapentin): “Had post herpectic trigeminal neuralgia (one of the worst cases in history according to my doctors). Began treatment with medications available in 1995, which almost destroyed my endocrine system. I tried Neurontin when it came out and today find I can control what used to be chronic burning pain down the side of my face from my scalp to my upper teeth across my right eye with 600 mg of Neurontin taken before bed.”
“Gabapentin has taken my Trigeminal neuralgia pain, which was a 9/10, down to a 2/10. Gabapentin has also greatly decreased the frequency of my pain. Gabapentin is also infinitely more effective than Tegretol for my pain, and with far less side effects. I couldn’t leave my house when it was under 30° because any breeze would set off the neuralgia pain in my teeth. I started 600mg in the morning and afternoon, and I take 1200mg at night as well. I don’t have any side effects from Gabapentin, but I was taking it for sleep for ten years before I started it during the day.”
“I began experiencing trigeminal neuralgia a few years after chemo. I had 5 courses of bleomycin, Velban and Cisplatin (1980s) When I first took Neurontin to control the pain I was taking 900 to 1200 mgs per day. As the symptoms decreased in frequency I weaned off and now take it only when needed. I can feel the changes in my skin when its going to start. I don't wait for the shooting pain, I now take 300 mgs gabapentin at the slightest tingling of my scalp. It helps tremendously. The only problem is saying whatever comes to mind , especially when taking prednisone at the same time.”
“I have suffered from TN for many years undiagnosed. The pain is simply agonising and no pain killer including morphine has even touched it. I have recently suffered a particularly bad attack and ended up in A and E . The doc thought it may be TN and prescribed Gabapentin. 300 mg 3 x a day within 4 hours of the first dose the pain started to ease. By the next day it was probably 75% better after a few days and raising the dose to 1200mg per day the pain was gone. I also suffer from fistulating crohns and AS. I have also found some relief with pain related to these issues. For the first time in 20 years I am not reliant on opioid pain killers to get through the day. For the first few days side effects were quite strong but worth it. I have been lucky for me this drug is a miracle. Its been a short time so I'm not sure if things will continue to go so well. But for the moment I feel better than I have in years.”
“I was prescribed Gabapentin 300MG two to three times daily in conjunction with Percocet for pain related to Trigeminal Neuralgia. Taken together the pain was reduced by two thirds and became more of a dull pain as compared with the constant, sharp, burning red hot poker pain I had been experiencing. I noticed no ill effects from this combination. I was able to function, multitask, strategize and work as a purchaser without problem. I felt a little more carefree than is usual but this did not seem to transfer over into any decision making. The only drawback was that together this combination was only effective for four hours at a time.”
“Diagnosed with TN one week ago. Pain so bad while on vacation in August, I could not function. Searing hot pin pricks on the entire left side of my face. ER doctor suggested TN or a sinus infection. After a week, the symptoms all but disappeared. After several weeks I started to get twinges of pain around my left upper lip area which progressed to include the whole left side of my face. Thinking this was all about my teeth I saw my dentist. He took x-rays and did an examination and told me he thought I had TN. My NP too suggested TN and will be referring me to a Neurologist. In the meantime I am taking Neurontin 300mg 3x each day. The pain did not stop but has gradually lessened over the 1st week. Looking forward to pain free days!”
Neurontin (gabapentin): “I have had trigeminal neuralgia since early 2009. I initially tried Tegratol but was unfortunately allergic to it (anticonvulsant hypersensitivity syndrome). Thankfully I was eventually given Neurontin. I am currently on 1200mg three times daily and it is working in conjunction with paracetamol. It has given me respite from the pain and hopefully will continue to do so until I have my operation in late May 2010.”
“I have had TN since 1997, and remember only needing 100 mg tid for years...but had to gradually increase that as the pain got more frequent and stronger. I am now taking 800 tid, and if the flare is bad, my neurologist says to take it 4 times a day. It is still helping control the pain, and I have been able to work and live normally. My dentist lets me cancel & reschedule if I'm having a flare. I even have some Emla cream to put carefully on the facial area that is most sensitive. There is also something called Warm Skin that a person can use in the winter, if you live in a cold region. That helps, too. I went to one national mtg and a woman was selling scarves with small pockets in them, to put handwarmer packets in! I'm glad I bought one.”
“I have suffered from intermittent Trigeminal neuralgia for 30 years, undiagnosed until 10 years ago. Mostly I've been treated with trileptal, but with the last two bouts I suffered from low sodium as a side effect as well as edema. The trileptal was not controlling the symptoms well. My doctor added gabapentin which immediately helped and allowed me to ease off the trileptal.”
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“Everyone is different. I was on this for many years and the side effects do go away for most people. But I have trigeminal neuralgia and this is the most painful condition that someone can have (They call it the suicide disease because before treatments came out about 50% of people killed themselves. Some still do) Anyway, it worked really well for nerve pain thank goodness. (This disease does not respond to opioids) But at first the side effects are rough but it gets better. If you take it as needed then the side effects are going to be strong each time. Also, I could quit it (I had surgery that worked) but I just started back on it - day 3 now- and noticed that the side effects are stronger now that I am older. It's very uncomfortable but for me, it's worth it for a couple of weeks. It did change my life for the better.”
“I was diagnosed with Trigeminal Neuralgia around my left ear and neck and prescribed Neruda which is Turkish pills including Gabapentin. I started taking 300mg first day, 600mg on 2nd day than 900mg on 3rd and following days. After 3rd day it cut off my pain immediately. But after 1 month pain started again but this time at the right side of my head around my ear. I started using this medicine again and this time it diminished the pain level a bit but didn't really cut it off. Hoping to get well again.”
“I've had TN for several months now. Ended up in the ER with the worst pain I have ever experienced. I was crying and just wanted someone to cut my head off! Was diagnosed with TN and sent to a neurologist. He put me on low dose of Gabapentin which didn't work. He keeps upping the dosage (6 - 9 pills a day) and I still get shocks next to my eye traveling down my cheek to my teeth and tongue. It hurts to eat and talk. I'm going to have him take me off of it and try something else. Thinking about going to pain management.”
“I have been taking Gabapentin (Neurontin) for over 5 years, 300mg, 2x daily. It was prescribed by my rheumatologist for fibromyalgia pain originally. It helped immensely, but was no help with the trigeminal neuralgia, which I've had from childhood. Of course, the TN was not diagnosed until I was 70, after many bouts of extreme facial and dental pain. Luckily the dentist sent me to a surgeon who said I needed to see a neurologist. She prescribed Carbamazepine, which helped briefly, but soon I developed side effects. I had gotten to the point where the TN attacks were occurring every two to three weeks. Now I am on Baclofen 10mg, 3x daily, and it has just about knocked out the attacks. I still take my Gabapentin without fail, daily. I learned the hard way that without them, I have pain all over from the fibromylgia and now rheumatoid arthritis. It probably kept the TN pain controlled for many years.”
“Diagnosed last week after 2 weeks of stabbing pain all around the left side of my head, in my ear, skin hard to touch. My doc on vacation, so I went to a local walk in. Prescribed Gabapentin..300 that day,600mg the next 2 days, then 900.mg. I stopped it today because of thigh pain that made me miserable. Muscle pain is listed as an adverse reaction. 900mg left me with difficulties maintaining my balance. There was some pain relief.”
“It took me 7 years of Dr after Dr, after an assault to get diagnosis of trigeminal neuralgia. The original intense pain slowly subsided but the itching, inside my ear, up to my scalp, down my jaw and neck were unbearable. I often tore my skin to bleeding. I put it off to an allergic reaction as it was intermittent. Benadryl helped to knock me out at night and by day I tried to constrain myself from scratching. When I finally got a diagnosis of trigeminal neuralgia and put on gabapentin, it was like an overnight miracle. Shortly I began to have breakthrough episodes of itching. I am now on 300 mg at bedtime after 6 months. I did experience this month sudden hair loss including a huge patch on the opposite side of my scalp, which I hope is not related to the gabapentin. It does list "Hair disease" as a potential side effect. My Derm is testing me for a host of potential causes.”
“In June of 2018 I was prescribed 300mg/ day of Gabapentin after having allergic reactions to other more effective drugs used to relieve the trigeminal nerve pain. Through the course of the next 6 months my dosage was increased to 3600/mg/day. Over that time period I began to experience pain in my feet, I'm on NO other medication. In Jan. 2019 I underwent Microvascular decompression (MVD) surgery so have been weaned off Gabapentin. I told neurologist about my neuropathy in feet but it was always discounted. Now, I have continued neuropathy in feet, hoping it will go away.”
“I was prescribed Gabapentin for TN as I am allergic to Carbamazepine. Initially (at 100mg 3 x day) I felt jittery but that subsided after a week or so. Once at 300mg 3 x day I began experiencing pins & needles in my arms/hands and legs/feet. My dose was reduced to 200mg x 3 and 5mg Baclofen added. The pins & needles remained in my arms/hands - which was more severe while driving (hands at 2 and 10). This was/is perplexing because that is the type of pain this drug is supposed to eliminate. As I stepped down to 100mg x 3 the jittery feeling returned. Through all this the TN pain was not reduced at all and the pins & needles remains. If you have Type 2 TN, which I do - before you start Gabapentin I would try to assess when your MD feels you should begin to notice a change in the pain. If it doesn't budge at that point in time - I would ask to stop taking this. I am now on 5mg Baclofen 2xday and although pain remains - it hasn't gotten worse which is a blessing with this disease.”
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare professionals.
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