May 4, 2016
I've been on Topamax for a long time. The dosage has fluctuated based on my migraine frequency but it has been a Godsend for me. Recently I have had a large number of "breakthrough" migraines, even with abortives, nasals, narcotics, etc. I've had a very hard time "breaking" them. Massage, chiropractic adjustments along with nerve injections seem to be some of the greatest relievers I get but these are not always available. Speaking with my doctor, he brought up the possibility of Trokendi XR. It is supposed to be the newest generation of Topamax but it is an XR so there is no spike in its release, therefore the user should be able to take a lower dose, once a day with a consistent result (no ups and downs of the med through the day hopefully lower migraine breakthrough).
I'd love to know if anyone has taken Trokendi XR for migraines and if so what have your results been? Have you had side effects? How has your insurance been about covering the medication? Thank you for any information you can share with your story.
May 10, 2016
Hi WT, I posted this in an old thread (w no responses yet though) so I apologize if someone is bored w my story:
Hi all – similar to many of you, I tried Topamax and hated the “heavy/dead to everything” feeling it gave me. I switched to Trokendi XR which is the extended time-release form and that also helped with the side-effects. I used the manufacturer coupons to get the cost down and this year my insurance pays for all after my deductible. I gradually went up to 100 mg and “held” for almost a year and a half. However, I do feel tired a lot and gradually do feel stupider and less eloquent and not good at speaking to adults coherently (not a good thing in my profession) and since i also have started Botox I started a taper down with m neuro’s permission. (My neuro thought I should stay on it since I haven’t been on it “that long,” and even go up in dosage, but he said I could go down very very slowly and carefully monitor symptoms. I spent 3 weeks @75mg and now have been at 2 weeks @50 mg. My problem is it’s so hard to figure out if I need to go back up again or give it time – I have been getting more headaches but I know that can be from the taper down itself, and also the daily spring weather changes have been incredible – sometimes fluctuations of 40 degrees from one day to the next, etc.
One question I have is – when people taper off Topiramate, do you have another prophylactic already picked out? How does one possibly choose?
Another question is, during the taper, is it ever advised to go back up one day if you know you’re going to be more prone to a migraine (for example, a day before thunderstorms and before onset of menses, I could take 75 mg of topiramate instead of 50mg)? Or would that just ruin the taper?
June 15, 2016
I've been on Trokendi XR for 2 1/2 months; beginning with 25 mg and working up to 200 mg. I could not handle that much so went back to 100. I have remained on 100 mg/day for 6 weeks. I started Botox In January and have received 2 applications. At this time, I can't tell the Botox has helped though my neurologist tells me it normally takes three sessions before there is significant improvement. I have daily headaches and chronic migraines and have had for over 25 years. I took Topomax for 13 years and considered it a lifesaver. Though I had some minor side effects, I was able to manage them...mainly cold hands/feet, change in taste buds. Eventually however, it just ceased to work and I quit taking it. Now because of the constant pain, my blood pressure has become an issue so I'm taking a beta blocker also. Still, with all these meds, I'm experiencing 12-14 days a month with migraines. So I would have to say that Trokendi is not helping and I'm planning to talk with my doctor about discontinuing it.
June 3, 2016
I have daily migraines that usually range in moderate severity. The goal with most of the preventative medications I have taken it to take the severity down to mild for half of the days and then to zero for the rest of the days. Trokendi xr does a pretty good job of this. Topamax, however, did not and I really wish people (and Google) would stop considering trokendi xr to be the exact thing as topamax. I have been on 100mg of both for 3 months and then 75 of topamax for 2 months and then quickly went down to 25mg of topamax after a few months because it was the most I could handle.
On Topamax I seriously was unable to function. I am a full time student in high level classes and on topamax I was unable to add 2+2 together. Try learning calculus 1 without being able to add! I haven't lost my ability to do math on trokendi xr. Though I do have some loss of concentration, but not nearly as much as one topamax.
On trokendi xr I have had lactose intolerance. I have always had some sensitivity to dairy, but after beginning to take this pill, the sensitivity quadrupled. However, a quick fix it to take a lactase digestive aid and then to stay away from dairy by substituting with almond and soy milk. This was easy for me because I already did it.
Another issue is the hand tingling. It got worse when I went from 50mg (which I was on for a month) to 100mg (on currently). The pattern I've found it that it usually worsens when you're gripping something for an extended period of time like a steering wheel, a hose, a pencil. Nothing painful. Just annoying. However, while I do complain about these things, remember that if you've taken topamax you can't remember a thing, form basic sentences, or look in the mirror and remember what your face looks like. Trokendi xr is NOTHING compared to that.
I have had a few instances where my face looks a little unfamiliar (this was my big trouble with topamax, I couldn't remember what I looked like which was really scary especially when you're a 16 year old kid whose face is changing anyway). Occasionally I don't remember where I am, but I usually remember pretty quickly. And pronouncing words can be sometimes difficult. But if you keep your words simple then you won't have a problem.
Now, for weight loss. Nothing. Maybe 3 pounds at first? But then I gained it back. I have no desire to eat, but it's nothing like topamax where I would FORGET about food. With trokendi you just won't feel like eating all the time which is probably good if you're a snacker like me.
I have conflicting views on the energy loss/gain caused by trokendi. I have depression (like many migraneurs). Both topamax and trokendi pulled me out of depression. But I think topamax did it because it made me stupid. Trokendi gives me energy partially because I feel better because it lessens the strength and frequency of my migraines. However, when my shot of energy is over (it usually lasts from when I wake up to around 12-2pm) I'm exhausted. Like fall over and kill me exhausted. I have found that constantly snacking (not meals) helps me through this and I do have a cup of tea or half a cup of coffee (I have never drank caffeine before this). Naps do not help. Do not take a nap. You'll feel worse. And then I'll have another shot of energy from 6/7-until I can finally fall asleep. Trokendi makes it hard to sleep most of the time (but it does go in cycles). I (try) to take melatonin before bed and that fixes the problem if I can manage to take it.
I'm so sorry for posting such a giant post, but I have searched high and wide for a post like this telling me what other people have experienced on trokendi and have found nothing except for topamax posts. Feel free to ask me questions (if I haven't filled your head with everything you cared to know and more, lol). And I hope someone else will see this and add their experience. I would LOVE to know how they did on it. I've found no one else.
June 5, 2016
Sorry, I forgot to respond to your second question.
For the face part, I think it's part of the memory loss that many people report from topamax. My brain is very visual, so I think the drug affects my recognition of familiar sights. So my face looks exactly the same, I'm not having swelling, droopy eyes, or the like, but my memory doesn't recall what it looks like. So weird.
May 17, 2018
I was jus put on trokendi xr today I have never taken anything like this before was jus diagnosed with chronic migraines. I have saw post about people's hair falling out and mood swings. I am a full time medical student and mom of three little ones. Any advice on when to take the meds and does it make you sleepy ?
June 3, 2016
Oh, and for insurance. Mine sucks. When my doctor gave me the samples there was a coupon card from trokendi that lasts through 2016 that takes off somewhere around 200-300 dollars depending on how much your insurance will cover. I take 100mg. Originally when I went in to the pharmacy I only needed a prescription for 50mg. That was around $80 (that' with the coupon code and insurance). When we upped the prescription quantity they wanted more than double (around $200). So instead of paying the $200 we actually just take out two prescriptions of 50mg a month and pay $160 total. So far no one has complained.
June 19, 2016
Are u on 50 mg now? I've had so many headaches and migraines this spring, I guess from going back dow. To 50 mg of trokendi but I don't want to go back up. Do u find the 50 mg is effective?