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Prevention Medications

Anticonvulsants – Antiepileptic Drugs

  • By Cindi

    I’ve been on Topamax for a few years, and the tingling fingers didn’t last very long for me. My problem was the cognitive dropping or forgetting of words. You know that feeling of having thta word on the tip of your tongue? That happened alot to me, and I facilitate adult classes several times a month! I managed because I (and my students) had a good sense of humor, but there was no way I could increase the dosage when my migraine pain started becoming problematic again. So looking at something else now…

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  • By CM

    I had the same issue when I was on Topamax. I got the worst tingling in my fingers and toes. It wasn’t all that effective with my migraines, so I was okay to stop it.

    Does anyone have experience with Gabapentin (Nerontin)? I had migraines that were reasonably under control for years, but all of the sudden my body went absolutely crazy this summer and I was at an 8/10 for 3 months straight and I’m down to being in bed with a migraine for only 60% of the month instead of 100%. It’s really out of control.

    It seems to be fairly new since I can’t find a lot of information about it, but it seems to be used frequently for people who have had issues with Topamax before. I’m just looking to see if it’s worked for anyone. I’m in the middle of nursing school and I’m not sure how much longer I can live a life where I only leave my bed to go to class.

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  • By Teri Robert

    CM,

    Gabapentin isn’t new. Quite the contrary. It’s been around long enough to go off patent. The brand name is Neurontin. I’ve never tried it, but I do know of people for whom it’s effective.

    Teri

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  • By Ellen Schnakenberg

    CM – I used gabapentin years ago. For me, I found that I gained weight with it – a lot of weight, even past where I was when pregnant. And I am a normally skinny person. Aside from that, it was during the time I was taking it that I began to suffer aphasia. Not all my aphasia was attached to Migraine attacks, leaving us to wonder if it was the medicine that contributed (aphasia is a known side effect) or the Migraine process itself. It did seem to minimally help my Migraines, but not enough to keep taking it with this severe set of side effects.

    Aside from my own experience, I caution everybody that their experiences will vary, sometimes greatly. Gabapentin has a fairly good track record of helping patients, and a trial is not a bad idea. Just be aware of the side effects, start low and titrate slowly up to try to minimize them, and then give it a chance (3 months) to do its work. Sometimes it takes combinations of medications to really work well too, so keep that in mind as well.

    Good luck!

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  • By gerrik1

    I am on Gabapentin and have been for about 8 months. But I am also on Zonegran (anticonvulsant)I have been worked up to 400mg a day. Went from almost daily migaines to just daily headack and 2-4 migraines a month. So much better. Have been on Topomax, Depakoate and many other anticonvusants. Have been suffering since 2003 and see a specialist at a Headacke Center.

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  • By CM

    I really appreciate the responses! Every time I try a new medication it makes me SO nervous. I’m up to 1800mg/day on Gabapentin and I haven’t had a headache practically since I started it, which is pretty incredible. I spent most of the last 6 months in bed with migraines 18-30 days in a month, so it’s a much-welcomed improvement.

    To those who’ve been on Gabapentin (Neurontin) before: Did you experience blurred vision? I’m feeling like I have the hardest time focusing on small print even with glasses. I did get a recent exam so unless something has changed in the last 2 weeks, my Rx shouldn’t have changed. I know it’s listed as a side effect, but I’m interested to know if it goes away.

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  • By Ellen Schnakenberg

    CM – I wish I could answer that for you. Your eye doctor should have information for you which may be more valuable than that which you would get form your prescribing doctor.

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  • By MsMillie

    I started Topamax yesterday (took 25 mg at night). I woke up at an odd hour of the night, then went back to bed. When I got out of bed for good, I felt hungover (although I don’t really know what feeling hungover is like since I don’t drink, ha) and groggy all day. I just felt so *loopy* at work and felt like I was someone else, fatigued, and out of it. I definitely do not like how it makes me feel. Ha, it was only one pill but I’m reluctant to try anymore.

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  • By Laura w

    I’ve tried Topamax two separate times and I just could not handle the side effects….mostly with my emotions. I’ve been on Cymbalta for a couple of years now and it has seemed to stopped helping. I got referred to a neurologist finally and he had me start Vimpat (started yesterday). Still taking Cymbalta because of how hard he says it is to come off of it. Will do that once we get a med that works finally. Anyone else taking Vimpat?

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  • By Ali A.

    Hi everyone,

    I was just prescribed Topimirate (generic version of Topamax) and had a pretty rough first week on the medication. I suffered from severe dizzy spells, confusion, and definitely found that I was unable to concentrate at work or come up with certain words and form cohesive sentences, whether in emails or when speaking. It’s definitely scary, but I’m going to stick it out and see if it gets better. The headaches are subsiding, and that’s definitely a relief — and the reason I went on the medication in the first place. I wish the side effects weren’t so strong, because Relpax really works for me and didn’t have any side effect when I took it on the onset of a migraine… I just didn’t get enough pills per month to cover the amount of migraines I get.

    Fingers crossed!

    -Allison

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  • By Chris Hicks

    Allison, thanks for sharing your experience, so far, on Topamax. Having been on many, many preventative medications over the years I definitely know what it is like to run into significant side effects. As long as your physician knows the extent and serverity of these side effects and still wants you to continue then the choice is yours. I have followed both paths before.

    I have, at the encouragement of my neurologist, stayed on a medication when the side effects were significant. My neuro, at the time, always talked about how long it would take a new medication to get into the system and start to have an effect. If I encountered side effects before that time the decision was whether or not to endure the side effects while waiting for the intended benefit of the medication. In your case, it sounds like you have seen a decrease in your migraines so the benefit is there. The real question for you is whether or not the unpleasant side effects will subside (in some cases they do). Have you discussed that with your physician? I encourage you to have such a conversation with her/him about the side effects you are experiencing. The ideal is to have a partnership with your physician where you talk and share and work toward a course that you both can support.

    On the flip side of sticking with it is the idea of stopping the medication. Again, in your case you are seeing a decrease in migraines and that is a great thing! So, have the side effects risen to the point where they are worse than the migraines? Sometimes it is tough to say one way or another on this question. Again, I think having a conversation with your physician could be tremendously helpful. The insight and input from a medical professional can be a very important piece of making a decision to continue or stop a medication. And, of course, if you decide to stop you will need to follow the advice of your physician as far as how to stop. Usually there is a prescribed plan that takes you down on dosage in steps until you are completely off the medication.

    In any event, the choice is ultimately yours. I know my journey has taken me down many failed paths with various preventative medications. I always tried to go as far as my neuro suggested so that I could say I had given it a thorough attempt. When discontinuing medications I always worked with my neuro to stop in a plan, stepped way that ensured a safe transition off the medication.

    I sincerely hope that the relief you have found from the migraine continues and that the side effects lessen to the point where they are nothing more than insignificant.

    Take Care,
    Chris

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  • By Ali A.

    Hi Chris,

    Thanks for your response! I should have clarified that the side effects have already gotten better as well — although there are still glimpses of them. I’m hoping that the longer I’m on the medication, the more my body gets used to it and the more they subside (along with the migraines!). I’m only on 25mg, and who knows- maybe that will work for me. I never thought I needed a preventative treatment; I used to get a few migraines a month and the Relpax worked for me — but out of the blue I started getting chronic (daily) migraines and there didn’t seem to be an end in sight. Since I only get 12 Relpax pills a month, that clearly was no longer an option.

    I’m seeing my neurologist this week for a check-in and to discuss how the medication has been working and next steps, etc., so we’ll see.

    Can I ask what treatment(s) you are currently using? What works best for you?

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  • By Chris Hicks

    Allison,

    Currently I am on Lyrica and Seroquel. I have been on Lyrica for over a year now and the Seroquel for a few months. I cannot say that either seems to be doing too much.

    The one treatment that has brought some limited relief is Botox. I have had two rounds of injections and am due for my third round in 14 days (not that I am counting). I have posted, in a few places here, my experiences with Botox. Basically it takes a couple of weeks to start working and builds up to a reduction of somewhere in the 40% neighborhood (down from about 100%). Unfortunately the effects tend to wear off before the next round, which can be no more frequent than every 3 months.

    So this is not a complete solution as there are gaps of about four to six weeks where the migraines are “out of the box”.

    Aside from these treatments I have a number of abortive medications. None of them are very effective. In fact, I intend to discuss medications with my neuro in two weeks when I go in for the Botox.

    I am thankful to have found some relief. I continue my quest for a more complete solution. During times like this, where the migraines are back, full-force, I struggle to be thankful for much.

    Take Care,
    Chris

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  • By Nancy Harris Bonk Moderator

    Hi Allison,

    Welcome! Topamax is a medication that can be used for migraine prevention. Relpax is not a prevention medication, rather an abortive medication that stops the migraine process. Using that many Relpax a month could increase your risk of getting medication overuse headache, moh which was formerly called rebound. This is a problem because we want the pain to go away but if we take migraine abortive medications such as the triptans like Relpax or any kind of pain medication, prescription or over-the-counter, more than two or three days a week can create moh. Here is some information about moh; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    Topamax is also a medication that needs to be tapered up very slowly. This is important to avoid potential unwanted side effects and get the most benefit from it. Let me share information on Topamax dosing with you in this link; https://migraine.com/migraine-treatment/topamax/dosage/. Try to keep in mind it can take up to three months before we see a reduction in our migraine frequency and severity as our body adjusts to the new medication. Also during this time potential side effects may lessen.

    I hope this helps,
    Nancy

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  • By wen

    Hi all,

    I like Chris have gone the Botox route, but with really unhappy results. The first round I was really happy even though I had the expected headache for a fews days after the injections; but oh what a relief once that subsided, no migraine for months.

    My second round has been horrific, that was well over 2.5 months ago and I have had the worst experience and I have been in a cave since. Two days after the injection began the most excruciating migraine ever that is just now edging off. We first tried a round of steroids (boy I was fun to be around during that time) and I did get some relief). Once I was off those, the symptoms all came back, then my specialists ordered Tizandine and I slept for three days but I have some relief as I was actually able to stick my head in the sunlight yesterday for 15 minutes without withering in pain. So, maybe the worst is over.

    Other medications I am taking include Relpax, (this works but I of course ran out of it a long time ago and insurance would not refill)and and topomax (preventive 100mg 2 x daily) obviously not working too well..

    I tell you all this just so you are aware that some people do not have the be results. I am not sure why the second injections were so bad for me and I will be discussing this with my doctor when I see him next, but I do not want to repeat this experience and the loss of almost and entire summer.

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  • By Nancy Harris Bonk Moderator

    Hi chance,

    Welcome to the discussion forum, we are so glad you shared your story with us.

    Botox does not work for everyone, I’m sorry to say and I’m sorry your experience was so bad.

    I did want to mention however, that if we take migraine abortive medications like Relpax and/or pain relievers, whether they are over-the-counter or by prescription, more than two to three days a week we run the risk of getting medication overuse headache o,moh. Having moh can land us in an endless cycle of pain migraines that are more difficult to treat. Let me share some information on moh with you; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    Let me know what you think,

    Nancy

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  • By karelallen

    I have been taking Topamax for about 2 years. It helped with migraines, but I sure did experience the “stupemax” effect, which never went away. My migraines started getting worse a couple of months ago so I just recently saw a neurologist for the first time.

    He has me taking Keppra and told me to stop Topamax (75mg)with no tapering off. He said it was such a low dose I didn’t need to taper off. I just started this less than a week ago and I’m feeling quite strange. I’m not sure if this is because of starting the Keppra, quitting Topamax, or a combination of both.

    I feel very fatigued, forgetful, off balance, and twice as stupid than I did while taking Topamax. I’m just wondering if this is normal for switching meds like this?

    I haven’t seen any discussions on Keppra and am also wondering what other people experience with it.

    Thanks!

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  • By AmyBabee

    Dear Karelallen, Nancy, Keri and Ellen have been drumming it on the blogs and virtually most of the posts on this site about tapering off topamax or any of these ‘serious’ medications. You dont just stop cold turkey. That Dr. who asked you to quit just like that after 2 years did not give you a good advice. If it was after 1 month or so, I can understand. I believe you should have gone down gradually to the lowest dose before you finally quit. Now you are feeling like c–p due to quiting topamax suddenly.It even says not to quit the medication suddenly on the pack that comes with the medication. It is not normal. Do your best to read other people’s posts on this site and learn more. Knowledge is power. I started taking topiramate yesterday (on 25mg), so far this morning I feel like am in a haze and will keep taking the rest of the 30 tabs which the Dr. gave me for trial. Praying and hoping it works to reduce frequency of daily migraine for me and that the side effects wont knock me out so much.

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  • By karelallen

    Thanks Amy2013. It’s so frustrating to go to a specialist that is supposed to know what they’re talking about, only to find that I still have to do a lot of my own homework still. I decided I’m going to taper myself off the topamax and see how that goes.
    I hope you do well on topamax and it helps you. If it works, the minor side effects are well worth the relief. You have to keep pushing through the haze and hopefully it will get easier.

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  • By Nancy Harris Bonk Moderator

    Hi karelallen,

    As the others have mentioned it’s real important to taper off certain medications such as Topamax. Sometimes I’ve heard doctors switch out the medications for one another if they are in a similar class. But, for many of us that’s not a great alternative – tapering slowly is.

    Keppra has been found to help some with migraine prevention. On another topic, are you aware of your triggers? This is really an important part of migraine disease. If we can identify our migraine triggers we may be able to reduce their frequency and severity. We have information on triggers in this link; https://migraine.com/blog/migraine-management-essential-trigger-management/.

    Let me know how you are doing, OK?

    Nancy

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  • By HannahS

    Hi all…

    I’ll apologise in advance – this post may drag on a bit! (I might split it into two posts…)

    After a year of my doctor trying me on beta-blockers to prevent my weekly migraine attacks (with no success) he finally referred me to a neurologist. The neurologist prescribed me sumatriptan injections to use whenever I had a migraine attack -which have proved to be a lifesaver- as the tablets didn’t even touch the sides (nor did the wafers) and recommended my doctor try me on either; sodium valproate (epilim), gabapentin (neurontin) or topiramate as preventative medication.

    We started with sodium valproate – after three months on this there was no change to my migraines which still appeared each week, nearly like clockwork. I experienced no side-effects when using or stopping sodium valproate…

    Next to try was gabapentin – starting at a low dose and reaching a dose of 2400mg a day. After 3-4 months at 2400mg I experienced no change to my migraine frequency, just the same old weekly attacks. So my doctor suggested I weaned off the gabapentin, and start topiramate. I was to take away 300mg a day, therefore being gabapentin free after 8 days… After about 2 days of weaning off I experienced a horrendous anxiety attack in the evening – didn’t think much of it once I’d dealt with it and continued the ‘wean-off’!

    So, the day after my last gabapentin tablet I had THE most horrendous migraine I had ever had… I was on a training course at work and only the lord knows how I managed to drive home, I don’t actually remember!! Once I got in I collapsed on to my bed. The pain was unimaginable, I couldn’t move to be sick, I was burning hot and freezing cold at the same time, the room was spinning and I was drenched in a pool of sweat. I was on my own and was so scared. When the pain finally subsided I was left with palpitations, chest pains and tingling in my extremities along with anxiety… This lasted a couple of days. In the end my other half took me to the emergency room where the doctor told me that it was more than likely that I had withdrawn from gabapentin too quickly and was suffering with withdrawal symptoms!!!! I didn’t feel well for about 2 weeks after that.

    I was scared that I had wrecked my migraines by trying gabapentin, and that all of my migraines would be as bad at that one that led me to the emergency room! Thankfully it appears that one was a one off… I mean yes, they are still bad, but crikey – not as bad as that one!!

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  • By HannahS

    Me again….

    After the gabapentin chaos, I decided to let my body settle for a good few weeks before trying the topiramate. My migraines remained the same – every week.

    I’ve now been on topiramate for just over 4 weeks and so far so good – I haven’t had to use an injection for 25 days so far (I was using one a week). I’ve still been having weekly ‘attacks’ but they have been mild and I’ve been beating them with ibuprofen… Long may this continue. 🙂

    I started on 25mg a day and increased 25mg a week to the dose I’m on now – 100mg, (50mg am and 50mg pm).

    At the moment the side effect have been minimal… Thankfully. I suffered with a slightly upset stomach each dose increase day, and have had tingly hands and feet but only slightly. So far I have been lucky, I have read some horror stories about the side effects.

    I’m really hoping I’ve found the answer to my weekly attacks… and that topiramate won’t eat my brain – I kind of need it for my job! 😉

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  • By Nancy Harris Bonk Moderator

    Hi HannahS,

    Thank you so much for sharing your story with us. Unfortunately it can take many different medications until we find the correct one that reduces our migraine frequency. And as you many already know, it can also take up to three months before we see a reduction in our migraine frequency and severity. During this time potential side effects may lessen too.

    To help with weekly attacks it may be a good idea to try and figure out your triggers – if you haven’t already. Migraine triggers can include certain foods, sound, light, odors, inconsistent sleeping patterns and many more things. Let me share this information with you on triggers; https://migraine.com/blog/migraine-management-essential-trigger-management/.

    Something to keep in mind when taking migraine abortive medications (Imitrex)and/or over-the- counter pain relievers is we can get medication overuse headache or moh. This can occur if we take these medications more than two to three days a week. Here is information on moh for you; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    Keep us posted on your progress!

    Nancy

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  • By HannahS

    Hi Nancy,

    Thank you for your response!

    I have really struggled to work out what my triggers could be, so I have just been trying to cut down/avoid the common migraine triggers. If I know I’m going to have a stressful week at work I ensure I get plenty of rest and stay hydrated and eat well etc to try and balance it all out!

    Since starting the topiramate I have gone 32 days without using a sumatriptan injection – this is the longest time I have gone since 2011… Prior to this I wouldn’t use more than one injection a week and I desperately tried not to use more than two a month, to avoid the MOH.

    So… at the moment I continue to do well on the topiramate and I still have everything crossed that this continues! I will keep you all updated – thank you for your support! 🙂

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  • By Star71

    I’m currently taking 400 mg of Topamax for my migraines.
    I suffered well over 20 a month before Topamax and I’m now down to between 5-7.
    For those I take 600 mg of ibuprofen and if it gets really bad my doctor has prescribed a mixture of Benadryl and anti-nausea medicine. It works like the shots they give you in the ER, w/o the ER trip.
    I have had severe side effects like the tingling/numbing hands and feet, the memory confusion, sleepiness, blurred/double vision, weight loss (42 lbs. in about 3 months) and food tasting like crap.
    So yeah I’ve got lots of negatives, but I’ve tried all the others like imatrex, etc… and they made me deathly ill. So I’ll stick to these pesky side effects that I can handle…

    Also on a side note, I’ve done all the testing as far as triggers go… We’ve tested hair products, make-up, foods, you name it, we’ve tested it… NOTHING seems to be the main cause… And now b/c of the meds, all I drink is water so I know it’s not caffeine b/c that’s not even a staple in my diet.

    Has anyone had any success getting SSI for their migraines?
    I work underneath florescent lights and I know that they are one of the few things that do trigger a migraine to come on and bad… I hate it!!!
    After about 3 hours, it starts!!! Thank goodness I work 4 hour days!!! That last hour is like an additional 4 hours….

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  • By Pendragon

    I’ve had some experience with both Gabapentin and Epilim.
    Worked up to a dosage of about 2000mg/day of Gabapentin, which gave me no side effects, but did not help my migraine at all.
    Next I started on Epilim (which I’m currently on). Worked up to 1600mg/day, again giving no side effects but not helping my migraine. My doctor then dropped the Epilim back to 1000mg/day and added in Isoptin, apparently the combination of the two of them can have some positive effects in migraine patients. Will wait and see what happens, have to build up the Isoptin slowly due to it being a blood pressure med, and I have normal blood pressure, so I can’t afford to do it quickly or else I run a risk of hypotension. Been increasing it slowly, and seeing my doctor weekly for blood pressure checks. So far, no ill-effects, so we’ll see how it goes.

    Has anyone tried/heard of pregabalin? It was another one suggested by a psychiatrist I saw, but I haven’t tried it.

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  • By Debs

    I’m in the UK and I take pregabalin. Been on it now for 6 months taking 50am and pm. I also take duloxetine(think u call it cybalta), and doctors just gave me indomethacin to try a pain manager as had no relief recently. And trying replax as tried every other triptan without success.

    I’m very aware of moh as neurologist used to give me valuum and tramadol for pain and I ended up addicted to then. Only way off was cold turkey. But i survived. Now I only use triptans and pain meds sparingly.

    I haven’t found pregabalin making any difference yet. Thought I did have 1 pain free day while being on it so far so that’s a bonus

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  • By Kristin

    I am interested in some other preventative medications myself. I have been on topamax and depakote for quite some time (years) with worsening migraines, 20+ a month now, some very severe. I know there are other alternatives out there. I have just started a new job and I’m seeing a new physician next week who can hopefully get me referred to a neurologist with a new outlook on medications, both preventative and for acute treatment. I haven’t had anything good for some time for acute headaches as I had a severe reaction to triptans, so that cuts out a lot of things!!

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    • By Star71

      KristinMB,
      I too have severe reactions too triptans and the doctors look at me like I’m crazy.
      They don’t want to believe me and one even asked if I was sure and wanted to try again since I was older now and MIGHT have outgrown it…
      Ummmm, NO!!!
      I’m sure, I don’t want to break out in hives and swell up and possibly go into anaphylactic shock…
      What a jerk…
      The Topamax keeps my migraines ‘manageable’ so I can function on a day to day basis, but I still have them on a daily basis and I’ll get 10+ a month that are still severe.
      That’s down from the 20+ but I’m still having the daily ones and that’s not a good thing, those should have ended.
      The only positive thing is the weight loss… :0)
      I’m hoping for a neurologist… I’m just waiting for my insurance company to give the OK.
      I could be waiting forever…

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