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Prevention Medications

Trokendi XR

  • By WickedT

    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.

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  • By 1bi480g

    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?

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    • By Dorothyofoz

      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.

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  • By Emily

    Hi,
    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.

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    • By 1bi480g

      Hi Emily, I’m so glad you responded.

      Daily migraines – that sounds so challenges. Have you and your doctor considered botox for migraines? I agree that my experience w Topamax was completely different from the experience with Trokendi XR. I am now on to 50 mg w Trokendi XR in my self-weaning schedule and have been “holding” for a month. I have noticed an increase in my migraines to about 2 a week but I am due for my next botox for migraines in a week (last appt was Feb), and also I think spring and the frequent thunderstorms, and work stress and changing work schedules might also be a factor so I think there are too many variables to tell. In any case, I wanted to wait until my next appointment to make any further changes. Are you on a different prophylactic and if so, which one?

      What did you mean by your face looks unfamiliar? Like swollen? Or drooping/loss of control of features?

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    • By Emily

      And thank you for responding too!
      I am currently only taking Trokendi. I’ve been on it for about 2 months and have had (knock on wood) great success! So no other preventative at the moment.
      I was actually on Botox; however, by the end of the third injection and after the fourth injection (so after ~7 months of use) it was no longer effective. My neurologist has explained to me that since Botox is a toxin that our bodies create antibodies to fight it. Somehow I managed to do this in 7 months. The only other reports I’ve found on this happening is for patients who have been on it for 2+ years.

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    • By Emily

      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.

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    • By leahbo4

      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 ?

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  • By Emily

    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’s 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.

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  • By 1bi480g

    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?

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  • By Emily

    I’m on 100mg currently; 50 mg wasn’t enough after a few weeks. The best of luck to you as you figure out your dosage!

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  • By 1bi480g

    Hi Emily, how is it going? I actually weaned off of Trokendi last month and now have botox, petadolex (OTC), and a mirena IUD. I also just started tizanidine. I sne tu a friend request!

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  • By Emily

    Hi!
    I’m glad to hear about the Trokendi for you since I know it wasn’t quite working for you. And I’m glad the Botox is still going well! I’ve never heard of Petadolex. I looked it up and it’s an herbal supplement. I’ve tried a few before and never felt any difference. Do you think this one is “special”, haha. Let me know how it goes! I’ll see if I can figure out how to pm you.
    My migraines are doing really well! In one of the posts above I mentioned a fatigue issue. It turns out that this was not caused by the Trokendi. And the fatigue also has turned into muscle weakness and some almost falls. The doctors are still trying to figure it out, but I’m so extremely excited that my migraines are doing well that it’s almost a relief to only have muscle problems!!
    I’m still on the 100mg and the only side effects I’m experiencing are appetite loss and some speech difficulty here and there. Everything else has went away.

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  • By BayouTigress

    I have been on Trokendi for a while. I started at the lowest dose and am now up to 100 mg and have been there for just over 4 months. I was on each dose for 3 months before increasing. I am also on DepoProvaria on a 10 week cycle. My migraines have decreased from 21+ a month to around 2 a week for about 7 weeks of the 10 week Depo cycle and increase to about 4-5 a week for 3 weeks of the Depo cycle as it wears off. Those 4-5 are more serious and hard to treat. Side effects include dry mouth, tiredness, tingling in feet, heels, knees, fingers, and elbows, trouble finding words, and occasional 20 minute sessions of moderate to severe depression. My insurance did not cover it when I stared taking it which made it expensive ($300/month) but is now picking up more of the cost as it has cut down on how much of my triptan rescue med I need. I discussed with my Dr increasing my dosage but am currently uncomfortable with doing that until I see how the side effects progress. The issue of not finding words is a serious problem with my profession if it gets worse. I did not take Topomax so have no basis for comparison.

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  • By teacher05

    Hello,
    I am new to this forum. I have had migraines with aura since I was in third grade. I have tried so, so many preventative meds, with little success. The migraines seem to be getting worse as of late. I’d say 2-3 per week. My doctor just prescribed Trokendi XR. Of course the first thing I did was Google it. From the little bit I have read (and I don’t know how accurate this is), it appears to be Topamax but repackaged as an extended release, and therefore some have seen better results with Trokendi XR. Is this true? I was on Topamax about 6 years ago, and it was very successful, however, it had side effects that led to me having to stop. I had my hair falling out, kidney stones, on top of the typical “dopamax” type confusion. I also lost a ton of weight, as I was rarely hungry. So…I am pretty nervous about Trokendi XR if it is similar in side effects with Topamax. I was hoping to get some thoughts and opinions from the forum. Thank you so much in advance! 🙂

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    • By GardensatNight

      And your doctor knew about the kidney stones? I take Qudexy which is another Topomax XR and it’s got all kinds of warnings about don’t take this if you’ve ever had kidney stones because it’s a known side effect. I would call their office.

      I can’t speak to Trokendi, but on Qudexy, yes, I have the hair loss, the dopomax effect, etc. If I had the kidney stones, I’d stop taking it though!

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  • By Angela

    i have been taking trokendi for about 5 months now. first it was 100mg, after a few months my neurologist bumped it to 200mg. i got really bad tingling in my hands, and my migraines went from bad to worse in the higher dosage. when i went back to him for my next appointment, he put me back on 100mg and also added in Propranolol 20mg, twice a day. i have not only noticed no improvement, but my migraines have basically come back as if i am on no medication at all. at the appointment i asked if i could be put on something else at this point, but he just decided to put me back on the 100mg since it was working before (only for a few months, which he seemed to ignore). im at my wits end trying to fight for my own migraine relief with my neurologist, but i need to do something.

    i’ve asked about botox but was told insurance usually wont cover it unless 3 different options were tried, so apparently that isnt an option for me yet? (trokendi is number 2 as i was on topamax prior)

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  • By PeterMarwood

    I have suffered migraines with auras since childhood, and was diagnosed with cervical dystonia a few years ago. I was on Verapamil, but when that stopped working I was switched to Topamax. That wasn’t helpful, and I was moved to 100 mg of Trokendi XR. It has proven to be very effective at dramatically reducing my migraine occurrence (sometimes none for months), and the only side effects have been that I got very bad pins and needles in my feet for the first few months, but that dissipated. I have also experienced significant changes in how things taste. I also have been receiving myoblock injections, but my neurologist may switch this to botox.

    The efficacy of the drugs has reduced in the last few months (I have been taking it for about three years), and it has led to a recurrence of historic psychiatric symptoms, and a diagnosis of bipolar II. It turns out that Trokendi is also used to treat bipolar disorder, and it had inadvertently been managing my symptoms. The current treatment plan is to increase my dosage and try to kill two birds with one stone.

    Does anyone else have comorbidity of migraine and bipolar? I’ve been researching at the University of Google and it seems to be a thing.

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