Generic Name: Trokendi XR (topiramate)
For Epilepsy "I have seizures but also suffer from severe migraines that became more and more frequent. My neurologist started me on this medication I was an also on 400mg neurontin and was previously on keppra. I’m now up to 100mg daily of the trokendi with the neurontin and my headaches are almost completely gone! I’ve suffered from migraines almost all my life! I feel them try to come once in a while when severe weather is coming or when my hormones are fluctuating but they never fully become a complete migraine. I haven’t experienced the brain fog I’ve heard about, but I do get tingly nerve sensations in my feet, hands and face occasionally. No mood swings, my mood is actually more stable. Hope this helps someone. Also, I don’t have frequent seizures so I can’t really say if it helps with that. My seizures are triggered by traumatic stress, so it’s more of a preventative."
For Seizure Prevention "A little over 2 years ago I was involved in a MVA, and sustained a traumatic brain injury. My neurologist put me on Trokendi XR for 2 reasons - to prevent seizures and migraines. Prior to the accident, I had always been a fairly healthy 5'7 160 pounds and worked out almost daily, and generally are very healthy. After the accident I became almost sedentary, depressed and suicidal. I had gained over 35 pounds but I honestly didn't much care. The Trikendi XR and the Adderall (prescribed to assist with the severe ADD caused by the brain injury) has helped me lose weight along with proper diet and minimum exercise. My seizures have gone from major, grandmal to pseudo-seizures to seldom, and my migraines have gone from daily to about 4 per week."
For Migraine Prevention "It really worked for the migraines, but I started to notice that I was having a difficult time explaining things to friends or family. Literally, I could not find the words to express myself. And it kept getting worse real fast. I sounded like a blathering idiot, and I still do. This isn't just brain fog, I feel like I've lost the ability to properly communicate and at least 30 percent of my vocabulary is shot. Not to mention my blood pressure shot up to 155/110. I'm 5 ft 4 in and I weigh around 135 lbs. I don't normally have blood pressure issues. The side effects of this medication for me outweigh the positive outcome. If I keep taking this stuff, I'll be sitting in a nursing home drooling all over myself not knowing my own name. Once again, this medication did stop my migraines, and not everyone will have the same side effects."
For Epilepsy "I have used this medication for over a decade with excellent results. No seizure activity. No perceptible side effects. Dosage of topiramate ER 50 mg 2X daily. No drug interactions unlike tegretol. No skin issues unlike dilantin. Very benign."
"This medication seemed to cause headaches instead of help. It made me anxious and caused insomnia. It did help with weight reduction as I had gained weight from other meds. But, eventually I started to feel hopeless and depressed because of the pain. It really wreaked havoc on my moods."
"Trokendi XR was a game changer for me! After suffering with chronic neck pain and headaches for several years, this medication changed everything without the side effects of topiramate that made me sleepy, depressed and with a bad taste in my mouth! Unfortunately, I can't afford it and couldn't get financial assistance to continue. What's a mom to so many children to do? Back to Topirimate I go! :-("
"So I have idiopathic inter-cranial hypertension and so far I am up to 50 mg of Trokendi XR and already have the tingling caused by another medicine. I have had decreased appetite and I have always been a been a binge eater so I don't mind the change in eating habits, but haven't experience any confusion. I have prior issues with depression etc but they do not seem to have changed with the medication. I am down to two migraines a week max."
"Game changer in preventing my migraines. Nothing else has worked as well. I experienced no adverse side effects. Unfortunately, my insurance only covers the generic which causes severe side effects for some reason. So it's very frustrating!"
For Epilepsy "No other medication has ever brought my seizures to a stop other than a Trokendi RX. I was very excited because of this positive reaction to Trokendi - NO seizures! Yet as the months moved on my side effects became more and more apparent. I lost my appetite and physical energy, which led to the beginning of depression! I became anorexic and lost over 20 pounds in about 3 months. My weight went from 160 pounds to 138 pounds. The worst part or side effect was I lost all my physical energy!! I became jello. I was always tired. I had so much fatigue and felt the need always to sleep. I had no desire to do anything. I was becoming depressed because of this, my life was not the same anymore. This scared me greatly because I had enjoyed my life, I was an active person who became a couch potato with no desires or pleasures in life. Because of these side effects (mainly lack of energy), I had the stop taking Trokendi and go back to having seizures."
For Migraine Prevention "I have been on Trokendi for several years, and it has given me my life back! I used to get migraines 5 to 6 days a week for decades, and now I may get one once every week or two thanks to Trokendi, and those are easily treatable with sumatriptan, so I don't end up spiraling into a rebound pattern. Side effects: along with going gluten and sugar-free for health reasons, but without trying otherwise, I lost and kept off around 20 lbs. I don't remember other side effects. It's possible there was some brain fog and word recall issues after starting Trokendi, but the real culprit for that was how sick that dang booster shot made me for about two years afterwards, so it's hard to separate the two. I'm subtracting 2 stars because of the price and brain fog. PS- my neurologist said Trokendi XR works better than Topamax, so I have been afraid to try Topamax."
"Was prescribed this for hyperacusis (a disorder in loudness perception)and I think it helped with the symptoms a little bit. It caused some minor issues with moodiness and also dry eye which caused me a lot of eye pain. I called my doctor and was told that the symptoms were temporary and would go away once I stopped taking the medicine. After I stopped taking the medicine, the eye pain persisted and I was told that I needed to see an eye doctor. It's been a couple of years since I stopped taking it and the hyperacusis has gotten a bit better, but I've probably spent over a thousand dollars just trying to lessen the eye pain, between eye drops, other items to help with the dry eye, and seeing 4 different eye doctors, none of who had a good answer. If you experience ANY eye pain while using this medication, STOP IMMEDIATELY, do not run the risk of permanently damaging your body."
Topamax, Eprontia, Qudexy XR, Topiragen
Topamax, Eprontia, Qudexy XR
