User Reviews for Topiramate to treat Trigeminal Neuralgia
Also known as: Topamax, Trokendi XR, Eprontia Qudexy XR
Topiramate has an average rating of 6.0 out of 10 from a total of 12 ratings for the treatment of Trigeminal Neuralgia. 58% of reviewers reported a positive effect, while 33% reported a negative effect.
Topamax (topiramate): “It took me a year to be diagnosed with Trigeminal Neuralgia - and I had to go to a doctor in Vienna for this, because the doctors in Romania misdiagnosed me - but Topamax is the medicine that really saved my life. Literally! Because I was contemplating suicide, the pain was that bad and nothing else was working for me. I have lost a little weight in the first couple of months and I also have some trouble finding common words while speaking, but otherwise I did not experience any other side effects so far. My cholesterol level is now increasing - I am wondering if anyone is experiencing that as a possible side effect.”
Topamax (topiramate): “I suffered a stroke in '04 and my neurologist prescribed Neurontin to deal with the resulting numbness and tingling on the right side. A year later, and after emergency gall bladder surgery, he put me on a low dose of Topamax instead. It worked well, but I've had to eventually increase the dosage. The side effects were minimal; I needed to lose the 35 lbs I lost (and my wardrobe needed updating :0), and the additional tingling is nothing compared to what I feel when I don't take it. Expensive!”
Topamax (topiramate): “Placed on Topamax for severe migraine and trigeminal neuralgia. 3 days later became disorientated with rash and soreness all over body then skin became scaley. Numbness in both hands and feet. Ceased Topamax.”
Topamax (topiramate): “Every body respond to medicine different, on my case Topamax made everything bad for me, the pain of Trigeminal and Occipital Neuralgia got really bad and I was not able to sleep at night and also give me anxiety, I was not hungry, I was like a zombie, I been with this pain since May 2020, my neurologist does not know why I start with this pain, my MRI and CT scan are normal, the next medication I'm going to start is Gabapentin I'm really hoping this medicine will work.”
Topamax (topiramate): “This did not help my Trigeminal Neuralgia at all even at high doses. It had helped me in the past for neuropathic pain in my neck, so I was surprised but then, Trigeminal Neuralgia was a surprise. The side effects of high doses of Topamax for me were serious cognitive issues hence, no help - bad side effects. I did find other medicines in combination that work - Nortriptiline, Trileptol and Gabapentin.”
Topamax (topiramate): “I only took Topamax for a short time, but the side effects were so bad I had to stop. Primarily, it made me feel goofy. I was in a cloud and had trouble remembering how to get places I went to frequently. I lost the ability to taste bubbles in beverages, and beer or soda without carbonation just wasn't the same. In short, the nickname "dopamax" seemed well earned to me.”
Topamax (topiramate): “Works well with combine with medical Marijuana. I take them at night 2 in the morning. It let's me be able to sleeps at night. I wasn't able to lay down after a fail MVD operations. Since I started the Brand name topomax it help me a great deal.”
Frequently asked questions
- Does topiramate cause weight loss?
- What not to take with topiramate?
- Does topiramate cause hair loss?
- How long do you stay on Topamax for migraines?
“Drug worked fine but side effects almost killed me. I had over 73 kidney stones, two stents and 2 laproscopic Treatments. My renal doctor and urologist couldn't figure out why. Then I saw a magazine article, topamax now used for headaches at 25mg Caution-May Cause Kidney Stones. Was never a warning when I was on 375mg. Stopped it and never another Kidney Stone.”
“I'm giving it a 10 for the decrease of nerve pain and it saved my life truly. However, the weight loss? The only weight I lost was 17lbs walking my dog and Nutra System 2 years ago and gained back 5lbs of that when he got injured 3 months ago. This didn't help me lose one pound. I'm on 75mgs a day, started at 50. It did change my taste, I no longer like orange but does zero for weight loss which I was looking forward to since I have a good 30lbs to lose :) So big ups for the nerve pain and I had no idea it worked on migraines no wonder I hadn't had to have my migraine prescription filled in 2 years! So it has great benefits and I would highly recommend it for other issues but not weight loss. Good luck and happy new year all!”
“I was given this medication because I have a very complicated case of trigeminal neuralgia and after trying all of the others this was one of the last before surgical options. This drug gave me severe memory problems to the point of needing a memory drug used on Alzheimer’s patients and peripheral neuropathy as I did not have it before and only did while on the medication and it went away as soon as I stopped it. I don’t recommend taking it as I wasn't warned that the side effects can become permanent.”
“At first this medicine worked great. I went from Tegretal to this one. I have Bilateral Trigeminal Neuralgia so they started me out at 50mg and bumped me up quickly to 100mg. It seemed to be working great and yes the bathroom trips at first seemed to be never ending but after a while it seemed to calm down. I have been on it for 6 months now but after upping my dose to 150mg, after the pain started to come through with a vengeance, I started having twitching in my eyes and mouth and other side effects happened as well. So I have to stop taking it now and start a new regimen. I did however lose 20lbs so that was a great thing because I was needing that!”
Topamax (topiramate): “I have taken it for 1 and 1/2 years for migraine. Also, after developing chronic lower back pain from degenerative discs it has really helped me cope with the pain.”
Topamax (topiramate): “OK if you can tolerate the side effects”
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.
Learn more about Trigeminal Neuralgia
IBM Watson Micromedex
Mayo Clinic Reference
More about topiramate
- Side Effects
- During Pregnancy or Breastfeeding
- Dosage Information
- Patient Tips
- Drug Images
- Drug Interactions
- Compare Alternatives
- Pricing & Coupons
- En Español
- 1186 Reviews
- Drug class: carbonic anhydrase inhibitor anticonvulsants
- Patient Information
- Topiramate (Advanced Reading)
- Topiramate Tablets
- Topiramate Extended-Release Capsules
- Topiramate Extended-Release Sprinkle Capsules
- Topiramate Sprinkle Capsules