Coping, Meds & Supplements, Symptoms, Treatment

Trouble Thinking on Topamax? Study Finds “Language Disturbances”

Migraine preventive Topamax (topiramate) has long been associated with trouble thinking, hence the widely used nickname of Dopamax. A recent study indicates that some people have trouble with language while taking Topamax. Some “language disturbances,” as the authors call it, include:

  • Finding words
  • Substituting a word with another unrelated word
  • Taking forever to get a thought out
  • Meshing words
  • Naming objects

According the Reuters article, “Language disturbances generally occurred within the first month of treatment, were of mild severity, and did not require further adjustment of dosages or discontinuation of topiramate.” I’m not sure what that means. Did the language disturbances subside after a month? Does “mild severity” mean that participants chose to stay on the drug even with the side effects?

The abstract of the original article in the journal Headache, Language Disturbances as a Side Effect of Prophylactic Treatment of Migraine, doesn’t answer these questions, but does raise others:

Conclusion.—It can be hypothesized that a disorder such as migraine, which involves numerous cortical and subcortical circuits implicated in the transmission and behavioral and emotional processing of pain, represents a facilitated substrate for the occurrence of language disturbances due to topiramate. This could be the expression of a more generalized impairment of cognitive processing. These aspects should be investigated in prospective studies involving larger migraine patient samples.

My interpretation: The make up of a migraineur’s brain is such that Topamax’s language side effects can flourish. Language problems could be only one part of overall impaired thinking. I believe this means that Topamax impairs thinking, but most migrainuers will attest that our minds are fuzzy even without Topamax. That’s the research I want to see.

Do these findings fit with your experience of Topamax? Take The Daily Headache’s Topamax & migraine survey.

64 thoughts on “Trouble Thinking on Topamax? Study Finds “Language Disturbances””

  1. I took this awful medicine for 3 years, while my Dr. Acted mystified why I went from being a very clear conversationalist to being a brain fogged idiot. Even months after I went off of it, I lost the chance at 3 jobs because I couldn’t make sense with enough questions at the interviews.

    I finally found some help. There are herbs that are aimed at assisting brain function, that were recommended by my acupuncturist. The one I’m taking is called Agile Mind, but there are others with similar ingredients. I’m not back to 100%, but at least 80%.

  2. I started taking topiramate in January of 2016 for bipolar depression. It was great, so I thought. I was out of bed! Happy, losing weight. Able to get back to spending time with family and friends. Not until Aug did I start to notice that I was slow at responding in conversations. A good friend told me that I was talking strangely and not making sense. I went on the defensive and I’d cry for no apparent reason. Then I noticed I couldn’t remember names of my friends. Sometimes I didn’t recognize their faces. I thought I was going crazy. It wasn’t until Sept 2018 that a neurologist I started going to ( after doing a brain scan) told me to quit taking the topiramate; it was causing my problems. I quit. That was over a year ago. I’m better but I still have memory problems and problems putting sentences together. The Dr said some of the problems would be permanent.
    Everyone is different. This is my story.

  3. The Va Prescribed Topirmate to me I was in the Psychiatric Ward to Control Agression. By the Time I got home from the hospital I had nearly full blown Aphasia for 30% of my day. I still Have issues with this Weeks after Stoping the Meds completely. It’s painful almost as It feels So much like being trapped in my own head. It did nothing for my anxiety (in fact it made it worse). To me It’s Poison. But everyone is different. I’m truly happy for those who have found this drug helpful. This was not the case for me

  4. So I’d like contribute my currently mixed experience with Topamax. It’s not all bad or all good. I’ve been prescribed it as a mood stabilizer (it has multiple purposes), due to clinical depression, generalized anxiety, PTSD, and recently diagnosed rapid-cycling bipolar disorder—yeah, I know, my brain is a mess! Topamax causes a number of linguistic impairments: slurred speech, malapropisms (replacing a word with an irrelevant word), difficulty naming objects or explaining ideas, difficulty with memory and language recall, and slow thinking in general. I am a foreign language teacher, so these are particularly obstructive (if that’s even the right word). Topamax might also be triggering hypomania for me. However, I’m sticking to it, because in spite of the moderate language difficulties, I suspect I’ve had focal onset seizures since childhood, and whenever I stop Topamax, they come back and they scare me. I’ll take the language and memory impairment over the alternative, especially since I’m killing two birds (PTSD triggers and seizure? triggers) with one stone.

  5. Also – the language issues continued for the six months I was on Topomax. I discontinued it after losing my job and health insurance. It probably was not the best treatment for my migraine; getting my blood pressure and glucose under control has been much more effective and reducing the number and severity of migraine episodes. And I find that naproxen and an anti-nausea do a better job of stopping a migraine episode than anything else I have found, with much fewer side effects.

  6. Thank goodness I worked in the tech world while I was on Topomax. Speaking was an enormous pain – I couldn’t express myself in the precise, compact ways that are my norm. When speaking I would have to hunt for words, or use their definition or other strings of smaller words to get my point across. I was speaking on the same level my daughter did at age 3. Writing was much less affected than speech, so I could still compose sensible emails and documents, but I dreaded meeting my coworkers in the hall on the way too or from the coffee pot.

  7. I’m so glad this is here. I felt like I was losing my shit! Its terrifying! So thanks to all!

    I’m terrible at tracking, but I noticed that I couldnt find a word several times one day… then the next… I realized I had also been having weird mini blackouts… I have an extensive vocabulary and good memory, so those are 2 things I noticed… then I started realizing that I have been slower with more pauses, long moments where I try and remember what I was saying… my dad had mentioned it awhile back with something else and now I can see it…

    Then I went to unlock my car… and I didnt know which button it was. Like, the window buttons, the mirror… it was only a minute, but I was baffled.

    I believe I just went up to 200 about 2 months ago.

    I’m so scared. I need to be told this isnt forever. That myillness didnt steal one more thing from me.

    Thank you for sharing also.

    Nevertheless, I want people to know I was on it fine for many years and took topamax at high doses, 200 and 250 for all of my 20’s. I wanted to cut down on the 18 meds I was taking, and it felt like it no longer did anything so I stopped.

  8. I have been on and off this medication so many times I cannot count… My doctor initially prescribed it to me to help with weight loss. A seizure med for weight loss? That should have been enough for me to stay away. But I tried it along with phentermine. The first couple weeks it seemed like a miracle drug. I notice a decrease in appetite and a boost of energy and rapid weight loss. So I ignored the painful numbness in my feet and hands. Sodas tasted flat to the point where I stopped caring to drink them at all. But then I began to feel delirious at times and incredibly high at other times. Then I ended up at places with no recollection of how I made it there. Or I would start off having a normal conversation then the next minute I would be enraged for no apparent reason or weeping like a baby. Needless to say but less than 2 months of taking this med i was diagnosed with bipolar 1. I never had it before but every time I’m on it I gear myself for a few visits at the local mental health office. Makes me wonder if a few pounds on the scale is worth the vision problems, the mental confusion, the embarrassing speech mishaps, the hair loss, the euphoria that eventually turns to mania, the tingling in your feet and fingers, rapid hearbeat. I feel dumb that this med has now caused psychological damage that I don’t will ever be repaired. FDA should ban it seriously.

  9. My doctor put me on topomax 3 days ago. Today I attempted to say good morning and couldnt. The words were on my mind i just couldnt speak them. I became super anxious and started crying. The whole day i was frustrated and emotional. I was cold and felt totally out of it. Saw my wonderful nurse at work who told me to stop it and that it would take 48 hours to get out of my system. Needless to say I will never try it again. It was scary and frustrating. It seemed like my bones were in pain as well. And to top it off I had a beast of a migraine that woke me up in the middle of the night. I have been getting shooting sharp pains in my head the whole afternoon. I guess this medicine is not for me good luck to all that suffer from migraines. They have been so debilitating for me lately.

  10. I’ve been taking topamax for 8 years. At first, I didn’t notice any fuzziness or memory problems, but the past year or so, I feel like I’ve turned into a bumbling fool. I use the wrong words in sentences (for instance,
    I tried to say “I went to Firehouse.” but I actually said “I went to Prudential.”) I mash parts of different words together in sentences and end up speaking complete gibberish, I have a really hard time with word recall, and sometimes my mouth doesn’t want to say what I want it to and says what it wants. I hate this medication…. But it’s the only medication I can take that doesn’t interact with any of my other bipolar meds. So I have the choice… Be crazy or stupid… I’m beginning to lean toward crazy at this point.

  11. Decided to quit Topamax which I’ve been on a week. I’m very tired and in a fog with difficulty thinking. Today I eat interviewing someone and came out with the wrong words a couple of times for no reason. I also am having trouble remembering.

    On top of all that, I’ve had a migraine today, so what’s the point?

    I’m sick of taking tablets that seem to make me worse and which have long term side effects. How come no one warned me of this when I was given them?

  12. I went through all of the medications preventative including Topamax and Relpax for onset. Dilaudid and Morphine for pain relief. These migraines occured 2-3 times a week and could last for days. When I wasn’t having migraine I had a headache. I’m in AZ. In September 2017 I finally decided to get my Marijuana card…pretty much out of desperation. The pain specialist had prescribed the Fentynal Patch!! I was already having enough side effects from all the pharmaceuticals. On 10-6-17 after leaving the chiropracter with no relief from the migraine that had set on the night before we decided to go to the dispensary for the first time.
    I can honestly say I regret now that I did not start using the CBD/THC 1:1 Ratio Sublingual in 2010 when this became legal in AZ. That was my last sever migraine. I take 15 mg every night before going to bed and when I feel the onset of one I take additional drops. Granted yes- I don’t drive when I have taken it but when I have a migraine I am bedridden anyway!

  13. I’m 13. I was diagnosed with pseudotumor cerebri about a week ago. I am not overweight at all and get a sufficient amount of exercise due to the fact that i play soccer all year round though my diet could improve. Since then I have had a spinal tap so they could determine the severity of the disease and from there my neuro prescribed topamax. So far I haven’t noticed a change in the headaches but the side effects of the medicine have started to kick in for me these include fuzzy thoughts, language disturbances, confusion, and according to my parents increased irritability. I am very smart. I’ve always been high honors so the fuzzy thoughts, confusion, and language disturbances are very frustrating because i have never experienced trouble with things like spelling or coming up with words or remembering names. This is all very scary especially being in the middle of the year and starting a new semester tomorrow.

  14. Horrible drug. It never even helped prevent my migraines in the end. The side effects were brutal. A ton of my fair fell out, I got very foggy and stupid (realized I shouldn’t speak in business meetings) and was very tired all the time. My max dosage was 150mg, that dosage triggered my significant hair loss. I’ve been off it for 3 years now, and my word recall never full recovered. My friend who is a pharamacist said people with seizure disorder who truly need it have a very hard time tolerating it as well.

  15. I was taking Maxalt years ago when I was able to connect language disturbance associated with it. I dread business meetings as it was embarrassing to not able to formulate simple sentences. The side effect is still there since I stopped taking the medication. Krill oil had helped with memory and acupuncture helps with migraine.

  16. I was not on Topamax for headaches, but bipolar depression. I had all the same symptoms as listed above. I took the medication for about 7 months. Just switched out meds today. My father has dementia and I actually thought I was getting early onset at 40. I hope my memory comes back soon.

  17. I was on Topomax for 12 years, and I have been off it for over 5 years, but my language skills have not improved. I still have trouble finding words or expressing myself as intelligently as I could previous to taking Topomax. For me, it seems as if my IQ dropped 20 points and it’s permanent condition.

  18. I was taking topiramate but I too was having such a hard time with getting out even easy words so having any conversation was difficult and it made me feel stupid! It also caused me to be quick tempered and say things I never would normally say. The one positive thing it did for me was majorly decrease my appetite so I had control over my overeating but unfortunately that only lasted a very short time then even with a dosage increase it didn’t have that effect anymore. I also heard from my cousin that her doctor said taking topiramate thins your skull.

  19. I was on Topomax for 12 years, and at first I thought it was a miracle drug as it certainly helped my migraines, not to mention I lost a few pounds. The first adverse symptom I had was losing the ability to spell, sometimes even simple words. Next, I needed glasses for the first time in my life ( I was 38) which I thought was age related, however my eyesight quickly deteriorated and my prescription had to be strengthened over the next several years. My memory began to go a bit, and I felt as if my IQ dropped about 20 points. I used to be eloquent in speech and writing, and suddenly I couldn’t finish sentences or remember simple words. This was disturbing as I am a teacher, so I eventually went off it. I have been off it now for 4 years and I have had no improvement in my word retrieval skills or memory. I have gradually begun to have night blindness over the last several years and I wonder if that could be caused by Topomax?

  20. I was on high doses of Topamax. The strange thing I experienced besides the usual side effects and the dumbing down of my cognitive functions and joint pain, was that other areas of the brain were opened up. I remember when my two friends were speaking Spanish I understood exactly what they were saying and I said something. They were shocked. I also had a vivid past life memory that was in the way distant past. Has anyone had this experience?

  21. I have been on topamax around 12 yrs for migraines. I stopped for a yr or so and my stools returned to normal. I had to go back on at a lower dose, only 50mg. The last couple years, the loss of words has gotten worse. I have forgotten people’s names I worked with for 1.5 yrs completely at one time. Yes spelling is shot too. Typing- fingers don’t respond, like I have dislexia or something. I am afraid to make mistakes at work. Along with other medical problems, I am going on disability. I have had migraines for 20 years.

  22. I started Topamax a couple days ago and I have definitely noticed this- not in just one language I speak but in all three. I have difficulty recalling words, remembering the order of letters in words, the order of words in sentences, and today I had to write an essay and as I reread it, it made absolutely no sense because each sentence was completely unrelated from the one that preceded it. Topamax has definitely made me more emotional and I feel like crying all the time- literally. And so far it hasn’t done anything to help my migraines so all in all I give it a 0/5 stars so oh well maybe it needs more time.

  23. I started Topamax because I was having Auras pretty consistently and I’ve been on it for two days and I’ve already had my taste buds change and my sentences become harder to put together. I didn’t at first think these had anything to do with Topamax until I noticed that every soda I tasted had an awful taste. I couldn’t hold a conversation either. So I googled it and sure enough I found the culprit. I’m now very weary on whether or not I should continue as I’m in college for communications and I’m going to have to do a lot of speaking.

    1. The initial side effects will pretty much go away. But the memory problems will get slowly worse over time. My doctors told me it was symptom of aging… Very scary to have the memory problems I had at 55. I subsiquently found out I had hypothyroidism. After my thyroid was adjusted with medication, I did experience memory improvement. I then decided I could not count on the doctors to correctly diagnose my memory problem if my thyroid problem was not diagnosed with 8+ years of increasing symptoms. I decided to discontinue any medication I could that had memory issues as a side effect. ( All of my medications are prescribed for maigrain.). A noticeable improvement to memory has occurred just after a month of discontinuing. ( I took the generic brand ), and I hope the improvement continues. I am staying off topimax until it is known if the drug causes permanent memory issues. I take imitrex for the migraines which have increased after stopping topimax. Not sure which drug will be worse in the long run, but the imbarasement and inability to function with the memory problems are something I can’t tolerate.

  24. My migraines we becoming unbearable and affecting my daily life. Having them three to four times a week and living with severe nausea as well which it took me a while to realize was related as I didn’t always have a headache with this. I pushed back on Topamax because of all the horrible things I have read about it. Finally I couldn’t take anymore and I caved. I’m only at 25mg BID and it’s been AMAZING. and nothing short of a miracle. I have now realized that I have probably had a form of chronic fatigue or pain/fibromyalgia for most of my adult life because what a difference I am feeling! Relief in my body where I didn’t even realize I needed it-I just thought it was a part of aging!!!! So the down side is word finding. Several times a day I struggle and this has always been a strength of mine. HOWEVER, in treating illness there are risks and benefits and this is something I am willing to trade in order to feel so much better in terms of reduced pain. In so many other ways my mind is clearer and sharper because I am better rested and my body is not stressed as it once was. Very grateful for topamax.

  25. ive been been prescribed topamax for two reasons , 1 …bolts of pains in my head & lingering headaches in which the dr says migraines and 2…stubborn excess weight that won’t come off ( about 40 lbs ) . The pro’s …no headaches since I’ve started the RX , I’m working my way up in dosage to 25mg four times a day , cons…slowed or delayed thinking ……uuuugh , will my body adjust to this like other medications need time to allow the body to adjust or will this always be this way ? And will it get worse as the dosage increases ?

  26. I’m back and it turns out Topomax may not be the culprit I made it out to be or was so afraid it was. Here it is six months later and I’m in a new city and state where I can’t receive the magnesium treatments PRN because the neurologist here has never heard of them. It doesn’t matter that they worked fabulously in San Antonio, Texas at the University hospital. The doctor here has never prescribed it and is hesitant to do it PRN. It is valueless randomly once a month.

    Okay, back to daily agony! As to Topomax I begun to experience more episodes of Transient Aphasia – getting lost in my neighborhood. I experience both verbal and cognitive and ONLY during periods of extreme migraine pain. Topomax is not the culprit for this and this symptom and the other “new developments” over the past eighteen months they have all had a similar pattern. None of the symptoms are related to any change in my Topomax dosage.

    Thanks for listening.

    1. Hi Cyndie, thanks for the update. It’s common for migraine symptoms to change over time and for new ones to develop. Cognitive dysfunction (including language difficulties) is definitely a migraine symptom, though research is only beginning to understand how significant this is. Were you getting magnesium infusions? It’s not a super common migraine treatment, but it’s used fairly widely. If your current doctor can’t help, another should be able to. Best of luck getting your new doctors sorted out.

      Take care,

  27. Here’s a kicker… I started taking Topamax for essential tremor and it seemed affective. As my dose increased I began having word finding difficulty but so did my husband who wasn’t on Topamax. He also started misnaming things as well which totally added to the fuzzy thinking I was trying to overcome. His word misnaming eventually led to a doctor visit which led to an MRI… which led to a diagnosis that no one wants to ever receive… Glioblastoma multiforme or GBM. The worst brain tumor Dx there is. Two months prognosis without treatment, 15 months with surgery, radiation and chemo. He survived 15 months and it was a horrible 15 months! Had I known I would have followed his wishes and not done surgery. My poor husband…

  28. Kerrie and all,

    It is vital to truly support one another in what I have come to realize is a non-vocalized agony that I have virtually suffered within my own head for too long. I am loved, cherished and blessed, but my HA’s are misunderstood and mostly tolerated by everyone who loves and cherishes me. Until my youngest daughter and now my sweet middle grand daughter began saying their hurt my ex-husband always thought I was being overly dramatic. No my hair hurts!

    Kerrie, I appreciate your reply more than you know. ;-). I want prevent as many others as I can from giving up and let them now my experiences are similar or very different from theirs. Medical science is working faster than ever – it doesn’t feel like it when you can’t hold your eyes open or your head up, but if you’re reading this you haven’t given up hope yet – and any if a cure isn’t found a better remedy is on way.

    By the way, my dosage has been 400 mg a day for the past two years. It was increased slowly in 25mg at first and the in 50mg increments. I never had and dramatic “all of sudden OMGosh” side effects. They built up.

    1. Cyndie, I absolutely agree that there are new developments all the time. It can feel like they take forever to arrive, but we’re definitely learning more about headache and migraine all the time.

      Take care,

  29. I am a 54 year old accountant. I have a Masters Degree in Accounting. I have been taking a very high dose of Topamax for nearly 5 years now. I have to take another medication because of the severe (yes, severe) fibromyalgia that is caused by the Topomax. I have wicked neuoropathic pain (tingling like pins and needles) in my hands and feet perioducally. I have my blood checked every six months to verify that my organs, mainly my liver, is not being damaged by this high dose. It is not.

    Now for the reason I am posting on this board. I am on disability now because despite the Topomax’s high dosage I still suffer from horrific dehabiliatating pain, mobility issues, and language issues (I stutter when the pain reaches a level 7 or greater) and at times I have hearing loss for hours or days at a time. This was happening before Topomax.

    Recently I began having really serious trouble with memory, not the occasional not finding the wrong, but inserting the wrong word and horrible times when I can’t recognize my own neighborhood! I have lost a lot of weight on Topomax. I was good with that, even as insane as it will sound when I had to drink Ensure to maintain a healthy weigh. The pain is unreal and I was told I excelerated the weight loss (5 lbs a week, I lost a lot of weight rapidly) by not eating enough carbohydrates. I didn’t have a lot of weight to lose so it was frightening AND this did not happen when I first taking Topomax. Recall I have been on it 5 years, the weight lss has happened in 2014. It has been effecting my memory marginally all along and that has gotten SIGNIFICANTLY worse in the past 6 months.

    I am tapering off it now and hoping for good results. I wanted to let everyone out there know about Magnesium infusions and magnesium’s use for migraines. It gives 100% pain free weeks. Weeks not hours or days. I have suffered with migraines for 34 years and I’ve literally been prescribed everything – I am blessedly well insured. I even paid $6K out of pocket for adult braces, 8 years ago, hoping that would help with the pain – my teeth were/are straight, I was told it might correct a jaw problem I clearly don’t have. With the magnesium IV’s, as needed at onset of a headache, and 500 mg supplement a day I was able to stay pain free for six months!!!! 🙂 I only needed 3 magnesium IV’s. My neurologist writes the prescription. I have them done at an infusion center.

    Anyway, magnesium works when nothing else ever has. Good luck. I hope there is no long term damage from my long term, high dosage use of Topomax, but if there is it will have been my undoing for taking for granted that the side effects weren’t “so” bad. I should have been more vigilant. My body is my temple. Life is good.

    1. Cyndie, thanks so much for sharing your story. You’ve been through a lot! I’m so glad to see that magnesium infusions are helping you. It’s so hard to weigh side effects vs. benefits. We all have different thresholds for which symptoms we’re willing to tolerate and that changes over time. Don’t be too hard on yourself. 🙂

      Take care,

  30. Dopamax user for about 5 years. I’ve come here to find out if there is anyone that found/heard the stupidness went away with a lower dose? It sounds like it’s permanent brain damage. Third job interview that I haven’t been called back on. Doctor doesn’t want to lower the dose and it’s easy to forget the frequency and duration of those days of torment. I love imitrex and it is the miracle drug for me, but doesn’t stop the frequency and doc doesn’t want me taking it as much as I need to. Sucks when you are intelligent and have so much to offer, but sound like an idiot every time you open your mouth. I have to stop this drug, but the torture and endless days of pain scare me to death. In Central TX and there is only one good neuro that has thousands of patients. Any ideas? Suggestions? Thanks for reading. And hang in there!!

  31. I just took my last Dopamax today! Thankfully! Though it did help to diagnose a childhood nurological disorder called Todds syndrome or ( Alice in wonderland syndrome.) I had never understood why my life was full of shrinking/spinning rooms, growing giant people, painfull feelings through my body and constant anxiety, other strange halusanation type visions, sounds and feelings. I instently had worse symptoms taking Topamax. Ive spent a year and a half with phychiatrists that had no clue what was wrong. I did research and found a support group one day. Went to a nurologist who knew of the syndrome and finally started getting answers.
    Now weaning off Topamax Ive had a migraine every day. Stabbing, pushing, pain thats normally only releived by sleeping. But even a full 8 hours sometimes does nothing. But even on Topamax I would have migraines lasting 1hour to 4 days 3-4x a month so averaging one a week sometimes more.
    Im still getting the migraines. Im craving caffiene but I went off it completely a year ago except a bit thats in the dark chocolate I sometimes eat. So should I use caffeine again or no? I’ve also cut out red meat, and. I had cut out dairy but I lost over 40lbs over the summer not trying to. Now my Dr. is afraid for my health. My protein levels are scary low. My toenails were pealing off completely. I’m on high dose vit D prescription and I have Pernicious anemia so I give myself Vitb12 shots. Does anyone have any natural suggestions for migraine relief? I’ve tried a few things. Cool cloths soaked in apple cider vinegar along with hot baths in the same. I would like to try a birch bark pultice but I am not sure of drug interactions or overdose. Also if anyone knows of a good everyday natural laxitive ( not prune related) and weekly or the like natural enima additive thats gentle as well as cleansing. I can eat fiber all day and #2 still only happens once a week at most. I want to get off the prescription laxitives I’m on vynase 24 mg 2x per day plus metamucil 1 scoop 3x daily and miralax 2tbls daily. I also eat tons of fruits and veggies, I eat frosted mini wheats daily. Only whole wheat bread. I try my hardest to eat well. Then once my body is full of bm Im not hungry at all until I go. I feel this may be part of my migraine issues. I have no clue how I lost so much weight this summer not going bm and eating all the fiber, cerials, vegies & fruits, chicken, fish… oh and I drink water all the time. It wasnt until this month that I began eating dairy and drinking milk. Now I drink a 20oz bottle of whole dark chocolate milk each day. Otherwise I stick to water. Drinking 4-5 16.5oz bottles a day. Any real suggestions or help with any of this will be welcome. My buisness email is Please no adds or comments beyond this discussion.

  32. I, too, was a regular migraineur. Several times per day, several hours each, every 2-3 days. They started out-of-the-blue last December. No injury–just started. Neuro useless…insists i must have had them all along, or a family history, or an injury—doesny listen to me. Puts me on Topa. Since then I, too, have had the strange tingling in the feet. And the language problems–oh, boy!! I am a French teacher!! imagine my day! Fortunately, it seems to only affect my ability to recall words in English. Not only that, but I have 5 kids of my own, ages 5 to 17, and they look at me like ” mom, what ARe you talking about?”
    I have cut my dose back to one tablet twice a day, since i see the doc later this month, but I honestly don’t think I can do this much longer. I’d almost rather have the headaches. At least then I’ d not have to worry about messing up at my job…

    1. It is sometimes difficult to decide whether the treatment is worth the cost. In this case, cost being mental ability. I hope you and your doctor are able to find a treatment that’s effective without having such side effects.

      Take care,

  33. I am a daily migaineur, in that my pain never stops but jumps up and down rarely dropping below a 5 on the pain scale. It has been 5 years now with nothing working except abortives. I am on my third month of Topamax (revisiting going higher and longer this time). After the first month (a push up to 100mg) I started leveling out on my pain to a constant. My average daily pain level before was about a 7 but that was with ups and downs. The second month (up to 200mg)my pain completely leveled off to a constant 7 (with the 8 and up’s still there). The doctor adjusted the time of day i take the meds for this month in an attempt to get my sleep under control (I never in all my life had a regular sleep pattern, though I do understand it’s importance, it wasn’t an issue when I didn’t have the migraines..)anyway now I am still mostly a constant 7 with a few under 7 upper 6 days but still with the 8 and ups…but I have had to take my demerol and hydrocodone this month (dec/jan) and I try very hard not to because I can’t stand it. I usually just take toradol when I hit 8. Has anyone else had the topamax increase their pain or not so much increase it but regulate it? I never realized how much the lows meant in my daily rollercoaster of pain until my pain was handed to me as a constant/level and higher pain. I haven’t found any one else being affected like this. And I had to spell check and reread this several times because things just dont come out the way i want them to anymore and make sense.

  34. I was prescribed Topamax to treat the migraines that normal – strong painkillers couldnt make better, by that i mean 1 box of panadol or panadine a day. First time taking it had tingling sensations near my feet area, I initially thought that it was tinea or something, it improved overtime. Massive weight loss was seen with this medication – complete loss of appetite. the first time taking topamax the “troubled thinking” wasnt really obvious it was when i stopped then started which made it really apparent, writing essays and reports for uni work would take forever because i could not jot down ideas then when it came to substitituing a different word to avoid repetition i found it really difficult. the so called “light trailing” was also experienced.
    despite the negatives topamax has stopped my migraines so far, hopefully it wont come back.

  35. Topamax has helped me a great deal with my chronic daily migraines due to grinding and clenching teeth at night and premature arthritis in the neck. I will say it has been a career and social nightmare for someone who has never had a speaking problem in their life. I’m a college grad and going on interviews and when the nerves kick in the word loss is even worse, I sound like Cher from the movie Clueless. It’s devastating and I’m self conscious. Now reading I’m hearing certain vitamins can help with the issue– I’ve read vitamin C. Google it..

  36. I just stumbled upon this website searching for something else about topamax. I’ve been taking it for about 5 or 6 years now. I take it for bipolar disorder. I take 300 mgs a day. For the first few months I had a metallic taste in my mouth, and I had tingly hands and feet for like two years but it went away. I have almost no side effects now. I do get some brain fuzziness occasionally but I never know if its me or the topamax 🙂

  37. I’ve only been on it for a week. I suffer weekly migraines that last 3-4 days each. I got the migraine this week, but it was relieved with over the counter motrin, which is a first. I take 25 mg of generic topamax twice a day. The only side effects I have noticed are tingling in my hands and feet if I stand too long or grip the steering wheel too tightly. I have noticed that I sometimes am a wee bit slower with formulating my sentences. I am a NICU nurse and I was discharging a baby the other day and I had to stop a second and gather my thoughts before explaining something to a mom. I was told the mental fog may occur, but to do crosswords and soduko when possible to keep my mind exercised. I am hungry all the time, I hope that lets up soon.

  38. I almost cried when I read about the “language disturbances” associated with topomax. It certainly described my situation. I began having migraines about a year ago and after they increased to several a week went on Topomax early last summer. I spent several excruciating weeks not being able to find the appropriate words and totally mind fogged. I’m an academic and luckily it was the end of the semester or it would have been a disaster. It does seem to cut down the frequency of migraines greatly and the side effects are some tingling of the feet and hands, ringing in the ears sometimes, but still I don’t feel a 100% unfogged mind wise yet. But at least the migraines aren’t so common.

  39. I have been on topamax for about 5 years now. I take it for headaches & pain for fibromyalgia. It works well for me but I have the problem with my language as well as memory. But, I had this before I started taking it. I’m going to be layed off from the job I have been working at for three years because I have made too many errors. I’m devastated. I have had headaches since I was a kid too. I tried going off topamax in 2007 and the headaches & pain started immediately. I had the tingling hands in the beginning & it went away. Unfortunately, I didn’t lose any weight from topamax. I hope I will be able to get another job. I’m divorced & 53 years old.

  40. i am a victim of “looking for words” as well. (and i work in radio) but it beats having the pain of the migraines!

  41. Most of the experiences here with Topamax are negative, so I just want to share my positive experience. I really think it works differently for everyone. I’ve been on Topamax for 3 months, starting at 25 mg and working up to 100 mg and it’s been like a miracle for me. I had headaches nearly every day, but have had only 2 or 3 since starting Topamax.
    The side effects are mild – some tingling in my feet, some diarrhea and mild mental slowing. I’m a little slower finding words and doing math in my head, but it’s minor. I’ve also noticed a worsening of the blurry vision, attributing it to the normal middle-age need for reading glasses, but maybe that’s the Topamax too. Regardless, the pain relief is well worth it for me.

  42. i just started topamax (topiramate) about a month ago for migraines (20 years plus now). it makes me nauseated and i have lost 8 lbs so far. i also experience trouble thinking and word-loss. the most problematic side effect by far is a daily headache and eye pain. has anyone else experienced this? how does a drug that is supposed to assuage these pains end up causing them? and are these the pains that are early warning signs of the rare but documented side effect of blindness? i welcome any insight. thank you!

  43. I have language impairment as a symptom of migraine. I do not take topamax, can only imagine how difficult it would be to talk if taking topamax. Have taken maxalt mlt – not always effective and find imitrex useless, too. Hydrocodone takes care of most of the pain. I am unable to take preventative medication as I am trying to get pregnant.
    The inability to express myself through speaking is not only embarrassing but puts me at a disadvantage in my profession as a real estate agent. Sometimes I stammer trying to get a thought or word out of my mouth. I’m glad to discover other people suffer from the same affliction. I have had mush mouth for years and was told it was from ADD – perhaps it is ADD and migraine. Ugh! Is there a connection ADD and migraine?

  44. I just started. I have daily headaches and have been taking oxycodone almost everyday for 10 months. I had 3 bouts of meningitis last year. This past week I felt sick and I lost words. My next was stiff, my joints were stiff, my lower back…and still the headaches. So of course I called my doc and told her I might have the mildest case of meningitis. And then I looked up the side effects:
    # Viral infections
    # Joint pain
    # Weakness
    # Sore throat
    # Dry mouth
    # Indigestion
    # Mood problems
    # Back pain
    I realize I’m on a small dose of Topamax so it could take awhile but at this point I’ve got chronic dailies and something’s got to give.

    Lets hope the symptoms ease up. My neuro isn’t even sure it will help since I don’t have migraines.

    Pegboard, coat rack, same thing right? At least the guy at Lowe’s has memory loss due to sleep apnea so he could relate.

  45. i’ve tried imitrex as well. i’ve tried so many things too. imitrex gave me these shooting pains that didnt help any either. i’m in the management field of IT field as well, so u can only imagine the effects that topmax has had. i stopped taking topamax for awhile only to have the migraines, of course come back. i decided to go back to it and find ways to cope in the mean time. that makes making ample use of spell check, and trying to exercise my memory. i know that sounds ridiculous, but migraine pain is no joke. i’ve been living with them since i was a kid too. i’ve tried everything from natural remedies to medications, and topamax seems to do the trick… *sigh* :/

  46. I’ve been on not only Topamax but also every other “preventative” med invented, including Sansert and Depakote, not to mention all of the others you can think of. All of them, but especially Topamax, made me mentally confused, inarticulate, unable to type on the computer without a zillion mistakes (not a good thing for a manager in the computer biz), and physically clumsy. If a drug wasn’t helping to prevent the migraines, invariably the doctor (and they all had the same suggestion) wanted me to increase the dose and give it more time. Yeah, right, I couldn’t function, hmmm, good idea doc. I’ve had migraines since I was eight years old and for me, the market introduction of Imitrex injections, then the tablets, was a Godsend.

    So if you’re experiencing mental confusion or any other debilitating symptom from Topamax, it won’t get better with time. It’s your body, your decision, not the doctor’s. Personally, I couldn’t stand the side effects.

  47. I’ve been taking topamax for about a year now. I’m not sure what’s worse, the migraine pain subsiding a little with topamax or the inability to formulate sentences, speak, and spell like I used to.

    i’m trying to make the decison to stop taking topamax at this point.

  48. I had the same problems and also started to have seizures when exposed to strobe or flashing lights. It got so bad that just driving along a tree lined road with sun light and shadow cast on the windshield was enough to make me feel like I was going to seize. I never had seizure problems before that. I stopped almost two years ago, I still have language and thinking problems from time to time, but luckily the seizure problems stopped after I stopped the Topamax.

  49. I have been on topamax for YEARs and I continue to have the issues with missing/finding words, taking forever to get a thought out, and naming items. I wish I could find something better, but it is still better than daily 10 out of 10 migrianes.

    It is frustrating because, before the Topamax (and headaches) I used to be a good public speaker, now it is difficult to formulate words in a meeting.

  50. Same issues with me and Topamax although I must say nothing else has worked to help with my migraines. I have been on it for about 8 months now, 4 at a steady dosage…and no, the problems have not subsided. It’s like the words are in my head and I can’t pull them out…

  51. This was a huge problem when I took Topamax, and it’s why I stopped taking it (not being able to find words/finding the wrong words is terrible when you’re a journalist). I still have problems a year after stopping it: I kept saying “Safeway” instead of “safehouse” today without knowing it.

    1. I had the same issue. I have been placed on it at four different occasions over a period of probably ten years. The last time, the “maximum” dose was twice what my previous neuro told me. I have been off of it for about six months now, and still am having issues trying to find words when speaking. I was trying to look up if there are any studies of lasting issues such as these. I have almost daily headaches, sometimes progressing to migraines, so perhaps this is part of the issue as noted in the article. But would be interesting to see if any of this has a relation to Topamax.

      1. Ex, I have heard of people having lingering language issues after Topamax, though you’re right that the problem could be the daily headaches. Sorry I can provide more information.

        Take care,

        1. Yes! I did the same thing when I was on Topamax in 2005. I couldn’t find the right words for simple things. For example, one day I was at a yard sale and I was asking the owner about some lawn ornaments that were clearly turtles. I kept referring them as “frogs”. The owner just laughed as I corrected myself each time..but I felt stupid.

  52. I had this problem with Topamax as well. In fact it is why I got off of it. Now I am on zonisamide (Zonegran) and it is starting to happen again.


  53. This happened to me while I was on Topamax. Really excruciating. I’ve had it on other meds, too, but this was by far the worst.

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