Generic Name: Topiramate Extended-release Capsules
Brand Name: Trokendi XR
I have been on trokendi for 2 months. I had started with topirmate but it started hurting my stomach. It felt like I was swallowing acid. When I started topirmate I had the same side effects as everyone. Fog brain, slurred speech, tingling in my hands, feet and even tongue, food tasted weird, I was super thirsty, and I had mood swings. I decided to suck it up with all of this because my migraines were gone. To be able to function and play with my kids was better for me. As soon as I switched to trokendi these side effects went away. I don’t know if my body adjusted or if it was because it was a slow release but it is the best thing that has happened to me.
I took this medication for awhile. I don’t even remember how long because it messed with my memory. Brain fog, sharpness. I suffer from bad headaches everyday of my life. They get so bad it makes my eyes swollen and distorted. But anyways it helped for a little and then I started noticing I’m still taking Tylenol everyday because I have a headache. Wish I lost some weight on it. I did lose hair though and I felt it made me easily agitated. All of that wasn’t worth it for me so I stopped cold turkey. Didn’t notice anything bad about stopping either with withdrawals or anything. Might have affected my mood but I don’t remember. Still trying to grow back my hair :(
Dizzyness, slurred speech, short term memory loss, no energy, loss of appetite, forgetful, frequent urination with incontence, hair breaking/ loss, very brittle finger / toe nails, increase headaches. Many more issues. Please do not take this medication. I went off of this cold turkey. It has been a bit over 2 weeks now. I am feeling so much better. Also able to start managing my life again.
Horrible side effects. Intense dizzy spells, whirling sensations, numbness in my face and hands, difficulty concentrating, slurred speech, and extreme anxiety. Lost 12 pounds in two weeks.
This medication almost killed me. I lost 30 pounds and at 125 lbs and 5’10’ I did not need that. My short term memory was destroyed, I was so tired I could hardly walk. MyBP was 53/30 and it caused neuropathy in both hands which is now permanent. I could not eat and whatever I drank tasted like metal. This medication ruined mylife. My hair, fingernails and toenails fell out. I M now on disability. DO NOT EVER TAKE THIS!
I was on trokendi XR 200 mg for about a year! My insurance stopped covering my usage because I was "prescribed too often" although I was under care of a neurologist during my treatment! Expensive and AWFUL side effects, I constantly felt spaced out and forgot words and sentences in the middle of speaking. I got more headaches while taking the medicine but they weren't as painful as my regular migraines so I toughed it out. I finally had enough of all the side effects and went cold turkey, of course they immediately stopped a week after my last dosage.
This medication was not near as effective as the same Strength dose of the short acting version given twice a day. I felt no benefit, and regressed in my condition. I returned to taking the standard topiramate twice daily after almost two years of struggling and within two weeks my symptoms have improved significantly. Night and day difference.
I developed cluster headaches at age 60. I tried topamax regular and had the same side effects as others have described. My neuro switched me to the 25mg XR, and no more side effects, and about 1 cluster headache per year now.
Was taking topiramate 25 twice daily, migraines down to 2-3 a month. Neuro had me start taking Trokendi XR 25, then 50. The migraine has come back to stay, and won't leave. If improvement doesnt happen soon going back on the topirmate 25 twice daily.
I started with 20 migraine days per month, and 0 headaches. My neurologist switched me from 100mg Topamax to 100mg Trokendi, which led to constant headaches on top of migraines. The neurologist increased dosage to 150mg after 2 months, then 200mg after another 2 months. I went to my primary, asked him to refer me to a different neurologist, and to reduce the Trokendi until I can get to the new one. Trokendi has a 0% copay, which meant I still owed $48 dollars on a 30 day supply of the 200mg dosage. The coupons are good for a year. I checked online. The pharmaceutical company that owns Trokendi has made sure a generic wonâ??t be available for at least 3 years, meaning if I were to stay on this my copay will be a minimum of $300 come Feb 2020. Itâ??s already hellish to be on it after 4 months. I see no reason to stay on this drug.
I began having terrible side effects. Low mood, no energy, depression finally kicked in at 6 weeks. Riddled with anxiety. If you suffer from any slight mental illness or have family history I would not take this. It made me feel crazy. Within 2 days of being off of 100 mg dose all the side effects were 75% gone. Terrible drug! Also you lose your appetite, nothing sounds appetizing. Still have migraines almost every day.
This medicine is TERRIBLE!! I only took Trokendi XR for 2 days!! That’s it and I already had a bad experience!! I had 1 seizure out of no where with NO HISTORY of them anywhere last year Nov 9th, 2018 and have been fine ever since and been pretty much cleared. Anyways go to neurologist to make sure my head is okay, no tests done just givin meds and day one i had a head ache and the meds made it into a migraine, it was so bad, also had a terrible night sleep. Day two, two hours after taking the medicine I got a horrible headache on the right side of my head then about an hour later that side of my head went numb and I did not like that feeling at all. Also I just felt very weird and later go home and go up the stairs and I get crazy dizzy and hard to breathe. Another horrible night sleep. The next day, not even touching those meds, I am STILL FEELING LIKE CRAP! I felt light headed and dizzy and felt like was floating all at once and I woke up with still a small headache slowly getting worse and going numbe in a small area. Also Thinking or even trying to talk it felt like the words were escaping me, hard to explain but Then it changed and I felt like I was going to pass out then for the rest of the day I was extremely nauseous, barley eating anything, I so light headed and dizzy that I had to hold onto the walls to make sure I didnt fall. A lot of this is hard to explain EXACTLY how I was feeling but overall DO NOT take this medication! I didn’t dare take it a third time.
I had a severe reaction to 25mg of Trokendi. Paranoia and insomnia. One of the worst reactions I've ever had to a drug. My Dr. was a big fan, but it did not work with my body chemistry.
Effective - But lookout for the Side Effects! I'm reading reviews to see if others are having similar side effects. I'm experiencing a major flareup of Rheumatoid Arthritis that I suspect may be triggered by this medication. I also have really bad heartburn a yeast infection and can sleep all day. I was on Topamax years ago, so I expected the brain fog, pins and needles in my extremities, and change in appetite. I wasn't prepared for all the other things. On a happy note, the headaches are gone. Or at least I can't remember them!
seemed to help at first, went from 25, to 50 to 100mg. At 100mg I thought I was useless, just lying in bed, no energy. Went to 50, now on 25. I had all along the tingling in the fingers and feet. I'm stopping completely at this point, I now have bone pain, tingling fingers and feet, frequent urination, back pain, and signs of kidney stones. These are considered serious side effects!
Two hours after taking the it I start to hallucinate , it effect's my walking in the evening . Then during the day my speech is effected and very tired . I have only been on Trokendi 200 mg xr for 1 1/2 mo's now , but when I see my nero Dr will ask to take me off this awful med......... Also the acne on my face , nor is helping my MIGRAINES !!!!!! that I suffer on a daily , nightly basis.
Since my stroke in 2013, I started to take topiramate in 2016 to prevent possible simple partial seizures or a type of migraine which mimicked my stroke symptoms. Unfortunately, regular topiramate was slowing me down even more than my regular functionality (which was already slow from the stroke). My neurologist prescribed Trokendi XR, and since then, my brain fog has greatly improved. While I still have "slowing," it is more manageable. I am able to complete my daily tasks without feeling like I can't have an adult conversation. I am a teacher, and actually feel like I can do my job while taking Trokendi XR. With topiramate, I would be stressed all the time, trying to "get my words out."
After trying Topomax, Primidone and a variety of other drugs I just about given on a drug remedy until my doctor recommended Trokendi XR. I went through different strengths and found that the 50mg worked best for me. It is not a cure but it has defineltly improved my symptoms especially hand shaking. The generic DOES NOT work for me at all.
Been taking for 5 months and only one migraine. Before this tried everything had migraines 2-3 times a weeks. I take .25m at night, no issues, love it.
Like most everyone else, I started low dose and worked my way up. On the 25, 50 and 100MG I was still having migrains, but not many side effects. My dr. Started me on 200MG and I became a different person, for the worse. I had no energy, I was confused all the time, no appetite.. just physically here. Id drive, and forget where i was going. Go shopping and forget what i bought. Have meltdowns in parking lots because i couldnt find my car, and had no memory of parking it. I don't recommend it at all. I'm getting a Cervical Medial Branch Block procedure this week, hoping for the best. I refuse to take Trokendi anymore.
