Generic Name: Topiramate for Diabetic Peripheral Neuropathy (topiramate)
Topamax (topiramate) "After having developed neuropathy post surgery, I was suffering daily. I had tried Neurontin with little relief and was prescribed Topamax initially at 25mg. Over the last 6 years, I've been titrated up to 300 mg and can tell you that this drug has helped tremendously. Initially, I had common side effects: difficulty finding words, I lost weight about 20 pounds, and found that I had some tingling in my hands and feet. These issues generally resolved in time, or I have just grown accustomed to them. For anyone who initially has issues with the side effects, try and stick with the medicine for a little bit unless totally intolerable, it gets better."
Topamax (topiramate) "I was diagnosed with trauma-induced neuropathy in my left heel following an injury that became infected, developed cellulitis, and an ulcer. It took 2 months of intensive treatment for my foot to heal, but about 3 weeks after I returned to work, I started experiencing sharp, electrical-type pain in my heel. It was excruciating. My doctor prescribed Neurontin at first, but I was not able to tolerate it. I was switched to Topamax, and within a day, I had full relief, and since then, I have been pain-free. Yes, I am a juvenile diabetic, but I had never had problems with my feet until this happened. The neuropathy is confined to my left heel only. Topamax is the best. The side effects are minimal, but even if they weren't, it's worth it to be pain-free."
Topamax (topiramate) "Topamax has helped my diabetic nerve damage more than any other drug that my doctor has prescribed for me, and it does not have all the other nasty side effects, including the weight gain. I get enough of that from the insulin. I love taking the Topamax. I'm on a low dose (25 mg) but it sure has helped me."
Topamax (topiramate) "Day one, Topamax helped my neuropathy. I’ve tried everything. When I say everything, I mean everything: opioids, Lyrica, gabapentin, Cymbalta, injections in my spine, and I’ve even considered surgery. One 25 mg dose, and I felt better than I have in 20 years. I hadn’t been able to lay on my left side comfortably for over 5 years. The first night, I slept 4 hours straight on my left side. Not only does it help the pain, it keeps the muscle tension down from the nerve aggravation. I will say I got some pretty crazy side effects the first couple of days like drooling, sleep paralysis, very realistic dreams, muscle pains in my armpit area, and upper respiratory symptoms, but those all went away within 4-5 days. I am extremely happy with this medication."
Topamax (topiramate) "I've been taking 25 mg/day for 3 weeks for nerve damage/back pain. I love this medication! It has some interesting side effects...(I have tried Gabapentin, Lyrica, Tramadol, and Percocet - but had really bad experiences on all of them.) The tingling goes away after a week. Hot flashes - too young for this! Mentally in a better place - I was in a depressive funk before taking it. Cleared my head a bit - I actually want to get better now and am walking/making an effort b/c I'm able to because my pain is manageable. I still get random shooting pains, but not as harsh. Major con is my hair is falling out!!! Any suggestions on hair loss? OTC supplements I take with it: AZO Cranberry Urinary Tract Health, B12, biotin, PNV, and fish oil. Drink lots of water!!!"
"I've heard so much about topamax and was given it for nerve pain I have heard that its infamous nickname is "dope-amax" which I find hilarious but have fortunately not experienced yet thank God! I have however, coined another nickname for it: "skinnymax" as I have been taking it one week and am wasting away on it! I have to make myself eat. My pain management doc put me on it because Lyrica and Depakote caused weight gain. I wasn't fat to begin with. Just didn't want to go down that road. I'm currently on 25mgs bid. The only other side effect besides loss of appetite is mild drowsiness. I am 5'2 and last I weighed in at 115. I haven't weighed but if I go below 105 I will have to stop. Still it is a great drug!"
"I started taking Topiramate several years ago for pain/neuropathy, as I read these posts I found out it could also be helping my obesity, fibromyalgia, Crohns and my smoking. I stopped taking it about two months ago because I was having kidney stone problems and thinking this medicine could be the reason why. In the two months I have gained 25lbs, I'm in so much pain I can't wrap my head around it, and my smoking is got in out of control. I had no idea this medicine could or was helping all my other issues so I'm going back on it to see if I loose the weigh, control my pain, stop smoking, Although kidney stones can be the most excruciating pain ever! I'd rather have that pain once a year than suffer every day in my other pain."
"I have taken topiramate 200 mg for nearly 20 years for diabetic neuropathy. It has been a miracle drug for me. Prior to taking this I was literally incapacitated and unable to work due to debilitating pain. Like others I had some issues in the beginning but it was well worth it. I am an RN who has many colleagues with diabetes and for whatever reason their MD's refuse to prescribe this for them; preferring Lyrica which in most cases piles on pounds and for most has little to no effect. My A1C has always stayed around 6 or below, for me this has also helped in conjunction with drug therapy."
"I was recently prescribed topiramate 25 MG tablet for neuropathy caused by type 2 diabetes. I can not find any other place on here where this drug was prescribed for neuropathy, but so far it appears to be helping."
"Male, then 59, 5'8"tall, 254 lbs. Lost 59 lbs effortlessly taking 100 mg/day over 24 months. Weight lost remained after stopping. Didn't help with neuropathy. Inspired me to lose 35 additional lbs. through low carb diet. Now age 69, weigh 160 lbs"
"Its finally working! Takes around 9 days at 50 mg to kick in in a sustainable way (for me at least). Unlike nuerontin, there is no fatigue, no malaise, no significant memory loss, no agitation, no anger. Also taking 150m Welbutrin which significantly lifts my spirits so this might be counter balancing things - who knows."
"I was prescribed topiramate for neuropathic itch. Continuous itching all over my body caused by damaged nerves. I got every bad side effect. I can't remember simple things. I'll go to do something and forget what it was. I misspelled my own name. I had a 4.0 in high school and suddenly I can't spell.... I feel like I have dementia. My thoughts escape my mind so frequently I can't have a conversation with anyone. I feel dumb. My eyes hurt. My hair is coming out in large amounts. I want my clarity and my health back. This medicine really should not be on the market. I will never take another medicine again! It helps block the nerves but the site effects aren't worth it."
"Final Review - - In the end its not working at all. Has completely pooped out. All along it was hit and miss (a stretch of good nights then nada, increase dose, repeat), and kept me on the edge of being almost pain free. It has also given me insomnia!! Currently at 50mg and will be discontinuing. Have now tried nearly every thing there is to try. (Lyrica: anger. Amitriptyline: good but pooped out. Neurontin:, good (worked straight away at 150mg) but significant malaise, loss of interest in anything, loss of memory, anger, sexual dysfunction etc, etc. Cymbalta: 60mg good, but eventually insomnia and anxiety. Effexor: good, but pooped out at 75mg and anxiety. Was prescribed Tramadol at one point: definitely not going there. May be a few others that I've missed. Not sure were to turn ..... Increase the Effexor? Go back to lower dose of Neurontin? The only thing keeping me sane now is the Wellbutrin. The chronic pain of neuropathy is a thief - it steals every thing from you."
"I actually take it for my Psoriatic arthritis for neuropathy. Took only 30 for days worked great but my blood pressure went from 128/78 before starting to 178/116 the day I stopped it . My Doctor told me it probably wasn't the Trokendi XR because there is no listing of raising blood pressure in the list of side effects, but 1 week after stopping it my BP is back to normal . USERS BEWARE !!!"
Topamax (topiramate) "My real issue is chronic post-breast surgery and cancer treatment chronic nerve pain (which is not on the list): Second day. OMG, I thought gabapentin and nortriptyline side effects were bad! I have a job and I have to talk to people. I could never take this drug and work. And I wouldn't want to quit working to take it. Doctors think this is helpful. Welcome to being a lab rat, I was still in pain, my eye and the surrounding area hurt, continuously drinking water, couldn't concentrate, felt like what it must be like on amphetamines, that lasted ~9 hours and then I CRASHED and shortly after had a total meltdown. I do not need to ever feel that way again as I try to help myself."
"As others have indicated, topiramate/topamax is also used off-label to treat non-diabetic neuropathy such as from trauma, genetic/developmental diseases, autoimmune damage, dysautonomia, etc. I started taking it for migraines, and my Cleveland Clinic specialist adjusted the dose to help lessen my thermoregulatory symptoms (a small fiber neuropathy thing in dysautonomia, mitochondrial disease, etc.) and ahhhh! Agreed that cymbalta, lyrica, et al were a total bust for me. Terrible allodynia and hyperalgesia and so many doctors unable to help at all. Cleveland clinic has been a blessing and I'm not allowed off topamax even for surgery or testing now (they tried once, bad things happened), which is fine with me bc it helps! I take it via trans-gastric jejunal feeding tube with no problems crushing (never a clog with several meds together) using silent knight pouches... I believe the skinny tail in my intestine itself is 8 French now. Hope that helps my fellow tubies!"
"Have taken 25mg for nearly a week for neuropathy. Seemed to sort of work for first 3 days as as had 3 good nights sleep and burning was only mild. Accepted that as part of the tingling experience that others reported. But then they just stopped working - with all the behind the neck sweats returning, which is always a sign that the feet are on fire and things are not working at all. Increased to 50mg with no effect what so ever. Do these take a while to work? I know that for me neurontin worked straight away (same night) whereas Lyrica took a few weeks to kick in, both of which which were nasty (side effects-wise) with neurontin being the worse of the two (agitation/anger/memory/malaise) (yet the best for pain relief) Not going to increase any more with the Toprimate - disappointed! Really wanted these to work. Running out of 'workable options'. Neuropathy ruining my life. Live pain or live like a disfunctional zombie from medications: choose the poison!"
Topamax (topiramate) "I was just put on Topamax 25mg BID. Took my first dose 6 hours ago and my neuropathy feels better already!!! Should I just stay on 25 mg? What time of day should I take it?"
"Got this to help with nerve pain and I lost over 50 lbs in 6 months. Ididn't even try. Just didn't want to eat crappy food anymore. Strangest thing really..."
Topamax (topiramate) "I had the worst effects from this medication made me very loopy and could not remember anything. It made feel like balanced my balance was off. I would not recommend this medicine for anyone."
"25mg for neuropathy works within 24 hrs! Early days. Will need to see if it continues to work. Taking 150mg bupropion to offset any side effects that I previously experienced with nasty neurontin."
Topamax, Trokendi XR, Eprontia, Qudexy XR, Topiragen
Topamax, Trokendi XR, Eprontia, Qudexy XR
