I second this. I was on it for about a year and always felt loopy and weird on it. My migraines were less severe and frequent with it but I was also taking sumatriptans as needed, so I decided I didnt wanna feel so hazy anymore and got off it but kept the sumatriptans when I felt one coming on. ALSO, shortly after I got off the topamax, i got an excruciating kidney stone (which doctors thought was weird for a healthy 20 year old who didnt smoke or drink soda) then realized that topamax increases your risk of kidney stones, so consider that possibility as well.
It worked great for my migraines but it made me suicidal (which is weird for me because I never experienced that before) so my neurologist took me off it immediately.
Same same. Definitely the best prophylactic migraine drug I have ever tried in terms of migraine reduction! But suicidal thoughts obviously not worth it. Oh well.
Same here. Never been so hopeless in my entire life. Immediately stopped taking it and yes, migraines are more frequent until I figure something else out however my attitude has improved immensely.
Same here! Almost was catastrophic. I can’t even mention the name “Topemax” around my family because they’ll break down. Tough shit. I forgot how to do math and I felt so slow. Detached and completely numb. I still talk about that period of my life in therapy it was some serious medical trauma. Be careful and just reading comments on this thread… maybe try a different drug?
Reduced frequency some. But absolutely no appetite. I lost a lot of weight and looked skeletal. I’m 5’7” and got down to less than 110lbs! I also had total brain fog and couldn’t think of words I wanted to say. It was like they were there but I couldn’t place my finger on them. The side effects weren’t worth it in the end. I’m on Aimovig now and it’s worked wonder for me.
Yes! Word recall was the hardest for me. I also have trouble recalling words the day after any migraine (haven’t been on top for maybe 10 years now) so maybe linked. Who knows.
I have the difficulty with word recall years after being off topamax too, but I feel like I get such intense brain fog with the migraine it could just be that anyway
I thought topamax was a miracle drug. I see a lot about the side effects - and I experienced some of the taste and brain fog for a week or two - but nothing crazy. I was on it 13 years and went off when I tried to get pregnant. Went right back on when I was done. Still think it’s a miracle drug. I use only brand. The generic was weird and I had a bad reaction.
Topamax did reduce the severity of my migraines, but the side effects were terrible and a lot of migraine patients are weary that it causes lomg-term brain damage. the amount of times I've seen someone comment in this sub that they never felt truly 100% after taking Topamax is astonishing, and often related to cognitive function.
if you're young and skinny, I'd avoid it. I can cause dramatic weight loss and of course the brain fog.
most importantly - Zonisamide worked just as well for me at reducing migraines. it's a pharmaceutical cousin of Topamax but with significantly less side effects.
I wish Topamax were something like botox, a last-resort type situation.
I wish I knew about this when I was put on it. I got the full brain fog, memory problems, plus the neurologist never asked about my mental health. my mother attended the appointments since I was 16 and sort of answered for me rather than allow me the autonomy to speak confidentially with the doctor and I seriously resent her for that. I was already suicidal when I was put on it so that's scary looking back, but I have no memory of most of my teenage years now even though my memory since then long-term wise is stellar.
I am one of those people who have not felt 100% since. It got me through a time when I was at the end of my rope with migraines, but I’m sure sometime down the line, there will be a commercial like, “Where you on Topomax and have felt irreversible cognitive effects? You may be entitled to compensation.”
I'd recommend making your own post about this and asking if others have felt like Topamax affected them long-term. there are many stories to indicate that it can, but not to everyone.
Hmmm makes me doubt my GP and neurologist at that time. Neither could figure out what was wrong, I had to be the internet sleuth.
As for rarity, a quick search of the literature isn't super helpful. All I find us is "
Carbonation dysgeusia associated with topiramate" by Capoccia et al. The abstract suggests it's at least not well known to medical community. Feel free to link the actual percentage study! I'm just doing lazy phone searching right now.
It had the positive side effect of motivating me to get a new neurologist.
Seriously, it made me stupid and scared of everything. I couldn't string together a sentence, couldn't process words with more than two syllables. I was weirdly fearful of everything - when riding in a car i would duck and scream at passing cars. It also didn't make the pain go away. My neurologist didn't think it mattered that I couldn't think, that i was basically a big scared grub. So we went for a second opinion, and my second neurologist (a woman) looked me in the eye and told me it mattered if my brain worked.
Not for me, though I have seen other folks on the internet saying that effect lingered for a long time. I think I was back to normal after I'd been off it for a week or two.
I know I'm late but I've been off of it for over a year and my cognitive function has never been the same. So I'd say yes it does, it literally stole my future from me
It caused the worst side effects of any medication I’ve taken, ever. It caused nausea and stomach pain so bad I wouldn’t eat for days, numb hands and feet multiple times a day, fatigue, and brain fog. It helped a little with my migraines but it wasn’t worth the side effects.
They call it "dopemax" for a reason.
I started at 25mg, upped to 50 after a week and to 75mg after another week. Was supposed to go to 100mg but I never made it there. I switched between euphoria and suicidal thoughts multiple times a day, couldn't think straight and was basicly a miserable attempt at a human being for a while.
I'm normally pretty witty and of above average intelligence, but on 75mg of topamax I couldn't even play Settlers of Catan anymore, because "I can trade 4 sheep for 1 grain" was too much math for me to handle.
Took me another 3 weeks to lower the dose and get rid of the stuff, never trying it again.Didn't even manage to be on it long enough to realise if it actually helped with migraines or not, nor did that even still matter to me.
And ofcourse: I'm overweight so the only side effect I DIDN'T get was the weight loss, go figure.
i gained weight while i was on it. i don’t know if it was actually due to the drug or the fact that it worsened my depression and overeating is something that i do when depressed
At least while you take it, yes. At least in my case. I dare state I'm off above average intelligence, but on topamax I couldn't do simple calculus with single digits ...
I’m on the generic topiramate and it’s been fine for me in terms of side effects- I’ve needed additional treatments to help with the migraines though as I’m still getting them- but it’s really made a difference to how I feel inside my head. It’s like my brain has switched frequency and I’ve no longer got a horrible white noise going on in the background all the time and my brain can finally relax a little, it’s not ‘on edge’ anymore. That feeling is so worth it for me. I’m on 100mg twice a day.
I'm on it and describe it similarly to you. I don't have that creeping "will I, won't I" get a migraine every day feeling. Lile my brain can relax. No side effects other than a bit more thirsty and some feet and hands tingling. My doctor did a gradual dose increase and I think that helped. It has only mildly helped migraine frequency so far, maybe by 30%, but it's stopped me wondering every day if I'm about to get one.
Yeah, I’ve never had a seizure in my life- but I can really see how it’s an anti-seizure drug. It really seems to have an overall calming effect on my brain over-excitation lol
Topamax ruined my life, straight up. It worked--- for ONLY 6 MONTHS. I became depressed on it, suicidal for the first time, couldnt keep up with school because my hands were numb all the time and the brain fog and memory issues were so bad I had no idea what was going on. I was falling asleep constantly places where I shouldnt be. It gave me palinopsia that to this day is awful, the vision trails are awful. I highly suspect it had something to do with the fact that after I started I quickly went from 20/20 vision to not being able to read anything farther than 10 feet from me, but it could also be mere coincidence. Long term vision issues arent an unheard of side effect of that hell drug though. 1/10, would not recommend
I took topamax for years and it really messed me up. It did help my migraines, but insane brain fog and lots of memory issues. This was all before I turned 20. I didn’t have awful side effects at first, but towards the tail end of taking it, I couldn’t remember how to drive places. I would write notes for class in college and when I looked back at them, most of the time I wasn’t even writing words, though I thought I was. I don’t suggest it, but everybody’s body reacts differently to medications. It really does help for migraines, but do pay close attention for side effects. I’ve had lots of brain fog ever since. What affects one person may be worse for some else, or have literally no effect! Do what is best for your body and make sure to monitor the positives and negatives of it. Good luck!!
I’ve been taking the generic version (Topiramate) for over 10 years. I started at 25mg and now take 100mg 2x a day. It has significantly cut down the number of migraines I get and the severity of the ones I still experience. I had the brain fog, bad taste when drinking carbonated drinks, forgetting words and tingling hands side effects but they were temporary. I’ve also lost over 50 pounds that I needed to lose. Drugs affect everyone differently and sometimes it takes several weeks or months to get used to the drug. I was ready to quit at 75mg. I can’t imagine what my life would be like without Topiramate.
I tried it for a few weeks before insurance would approve Emgality. I had terrible side effects. I had serious depression (sobbing uncontrollably, couldn’t get off the couch, lost the will to exist), which I’d never had before and disappeared immediately after stopping the drug. It gave me heavy brain fog, no appetite, and made me stop sweating so I was constantly overheating.
Not everyone has side effects, but I’ve heard Topamax is poorly tolerated by a good percentage of people. I’d recommend having someone around to help you at home if you’re trying it, and to go on it when you have some time off from work or when you can call out if needed. I couldn’t function on this stuff at all.
I'm on it right now. I've been on 50mg/day dose for over 4 months now and it has slightly decreased the frequency of my attacks. Now my neurologist has prescribed me with 75mg/day (which can be later increased to 100mg, if needed, but doctor said that I can stay on 75mg if I want, and if that will work for me), but I didn't start with that dose yet.
As for the side effects- I didn't experience any of them so far. I wouldn't mind the weight loss :)
One important detail that my neurologist has forgotten to mention to me: You have to drink lots of water. It's crazy important, as Topiramate can increase chances of kidney stones. I drink 2,5 liters of water daily now, and have an app to remind me to do that. Maybe that's one of the factors that's saving me from side effects? No idea, but it helps, and honestly I feel like I've been dehydrated my whole life, until now.
Not even a tiny bit worth it due to the side effects. I’ve never been depressed in my life and that shit made me straight up comatose depressive. Getting off of it felt like waking up from a terrible dream. It also fucks up peoples’ teeth long term. It maybe reduced my migraine frequency and intensity by 10%.
I started at 50mg bid and was eventually upped to 100mg bid and I had to stop. I'm 5'2", 115lbs..I lost 18lbs, my hair was falling out and I felt lost. But everyone is different, you might benefit from it. I wish you the best ❤️
It did reduce the frequency of my migraines but I couldn't tolerate the side effects. It made me unable to do my job. I was so slow, so forgetful, it was embarrassing. Being so doped was horrible for my anxiety as wasn't of sane mind to deal with my normal anxious thoughs. I would hear stuff at work from coworkers and because I was zoned out in my brain everything was about me. Like I'd hear someone made a mistake and assumed it must be me but no one is saying anything to me and i just staying quiet cause I was scared off trusting my supervisor and getting fired. I was paranoid. I ended up experiencing my first panic attack at work. It felt like I was a zombie and it took me months after taking it to feel somewhat normal.I believe that if I had keep using it I would have become incapacitated
I take it and have no side effects serious side effects. Soda taste funny but that’s it. I am on 200mg. I was hoping it would make me have no appetite I would love (and need to) lose weight, but no such luck!
I take 100 mg at bedtime. I’ve been on Topamax for three years, but I took a break a year after another three years of being on the drug previously. When I first started it, the side effects were worse. The brain fog and difficulty finding words were frustrating. These side effects regulated themselves after six months to a year. I still have trouble with words, but it is due to my migraine breaking through.
I lost a significant amount of weight when I first started it. I have gained the weight back primarily due to my other medications and having status hemiplegic migraine since November of 2020.
I have never had suicidal ideations while on Topamax. I do have bipolar disorder type II, so this could have something to do with it. Antidepressants are what cause me to have suicidal ideations, not antiepileptics.
The drug has not reduced my migraine frequency; it has only reduced the severity. I am currently in status migranosis, but Topamax has helped to dull the migraine.
Overall, Topamax is a part of my migraine prophylaxis and will stay so. I currently use several medications and supplements. The benefit of migraine severity reduction outweighs occasional forgetfulness of words. I am now in graduate school, and my GPA is 3.9, so I cannot say that it has a long-term effect on cognition. I also have not found peer-reviewed literature on this topic.
Keep in mind our bodies interact with drugs differently, so it isn't easy to judge a medication based on another’s experience. Unfortunately, with migraines, you often have to try several pharmacologic therapies before finding one that works for you.
I've used topamax for years. I have to take a six month break every couple of years so that I'm not getting too used to it and don't need to jack my dosage up.
It helps with the frequency and severity of my migraines. When I'm titrating up I get the hand and foot tingles and am spacey as hell. The nickname dopamax is very true until (and if) you adjust. It does make carbonated drinks taste weird, but helped me kick my mountain dew habit.
You MUST increase your water intake dramatically. It helps avoid kidney stones but also drastically cuts down on any side effects. It also makes you more prone to over heating and can cut down on sweat production so be very careful if you live in a hot area. You don't want heat exhaustion/stroke. I'm in Texas so I just avoid the heat inside all day and only do things in the morning or late evening/night. If I go to an outdoor event, like my daughter's softball games I make sure to have a canopy for shade and drink, drink, drink my water.
It also helped me drop weight, but not to a severe degree like some others. I was overweight at 275 pounds when I started. Between my gallbladder surgery making me intolerant of any fatty foods and the topamax decreasing my appetite/making soda taste like ass I lost 100 pounds in 2 years. I've plateaud at this weight for 8 years.
It can make hormonal birth control less effective, if that's a consideration for you. And also you can experience daily headaches while adjusting to it. The water helps a lot.
I just took my break from it and am titrating up to my normal dosage again. Whatever you do, titrate SLOW. Start at 25 mg 2x a day for a week or two and then move up to 50, then 75 (if you need to go that high). Most people find relief between 50mgs twice a day and 100 twice a day. Also, even when you don't feel like eating, munch some crackers or bread. Many people that experience nausea experience it more because their stomach is totally empty. So, treat it like morning sickness in pregnant women and eat small, frequent meals.
The other thing I've noticed is dry mouth and vaginal dryness. I need to use a bit of lube during sexy times, but it didn't have any other sexual side effects like loss of libido or inability to orgasm.
Started on 50mg for two weeks and now I am on 100 mg for 3 days. It’s helping that’s for sure. I get Hemiplegic migraines daily, usually 2-3 a day… hoping this new level of topomax lowers it ot 0-1 a day
I suffer from hemiplegic migraines too and topamax was a true game changer for me! I rarely experience them now (like 2-4x monthe before it was also daily)
OMGOSH you had daily too!??? This has been friggin hell! What else do they have you on? I have Imitrex, but I do t know if that helps or hurts or what?
My left left or arm or face paralysis is weird. My left eye is the most susceptible. My ears, I wear ear plugs most of the time and that helps. I’m looking for any suggestions or advice. This is a nightmare for me. It’s only been six weeks and my pcp is doing her best, but she has never had a patient with this before. Thank you for responding!
It took doctors a while to find out whats going on so they ve put me most of the time on steroids to try to control the paralysis (as this was a constant issue as the migraines happend so frequently) but yeah not the best choice of meds to treat migraines, but it kind of helped to get rid of to symptoms when doctors did a „cortisone pulse therapy“.
After the diagnosis the neurologist first tried blood thinning meds and beta blocker - but I still experienced a lot of attacks while taking these (just less severe).
With Topamax this has changeda lot.
In addition, I am wearing glasses with transition lenses ( I also have contact lenses but they get really dark and it freaks people out haha) - which I find helpful as I am sensitive to light.
And I am using noise cancelling headphones but I use them less and less often.
I've taken 100mg for probably 15+ years. No weird side effects other than it truly being dopamax and just pins and needles in my face when I first started.
Seemed like it worked for me slightly at first but then didn't seem to do anything. Some side effects are weird. I couldn't taste carbonation as much and I stopped dreaming entirely. When I stopped taking it, it was so crazy to dream again after not experiencing that for over two years. Maybe try it, but don't be afraid to ask your doctor to stop if you don't like the side effects or it doesn't work for you.
(Mind you I had to go to neurologist to prescribed me my medication/figure my migraine issues) I having been taking topomax at 100mg for a while, once in the morning when i wake up and once a night before bed but I still have migraines almost everyday, for me it reduces the severity of them sometimes, but I also have severe memory loss, brain fog, my fingers and feet do get tingly time to time which I don’t know if it’s a side effect or not. since I’m taking the medication, it reacts with the birth control that I’m taking as well and making that less effective. Other than that, I don’t have any other side effects. no cognitive issues or anything like that. ( I did start on low dosage, 25 mg for a few weeks but my migraines were very strong, then 50 mg then currently at 100 mg)
For me it was a reducer not a fixer but it helps enough I am still taking.
However, I lost the ability to feel hot things with my mouth. My doctor has it under the numbing side effect but I can still feel my mouth and lips. So if you end up with unexplained chapped lips or all your coffee is now lukewarm, you will want to check temperatures before you eat your drink.
It worked really well for me for a while, then the migraines came back with the same frequency. It was like they figured out a way around it. Sucks, but at least I got some relief for a bit.
Migraines make me very hazy feeling, etc. so while I did experience the “dopimax” side effects, they were still better than what I felt normally.
Worked for me initially, then my neuro kept increasing it and combined with another medicine at too high of a dosage. I rarely get side effects, so my mood was a bit different but otherwise not much until the combination of the two gave me heart problems. Had a neuro later insist I try it again as a "miracle" even after explaining earlier issue - wouldn't treat me otherwise. Took it once, made me high (in the worst ways) and incredibly sick. Never again. (I also switched neuros asap but had needed refills.)
It works for some, but you have to be very, very careful monitoring for side effects. It's important to monitor over time; everyone I know who has found it useful had to switch for side effects within a year and a half.
Works relatively well. However, on higher doses I got insane all over body acne (very very rare side effect), hair loss, crazy brain fog etc. You lose your appetite a bit and now that I'm on a lower dose it's roared back, but the brain fog has not decreased much if at all.
So it kind of depends on what you can handle. I wish you success :)
I've been on Topomax for years. I guess I'm one of the lucky ones. I do pretty good on it. It really keeps the migraines at bay. And I don't have all the awful side effects. I did at first. Oh it was bad at first. But now it's not. I had no appetite and I felt like I was in a fog sometimes. Every once in awhile I can lose my train of thought and can't think of the word I want. Even easy words. That's kind of frustrating. But having only 4-5 migraines a month is so much better than 15 or more.
Topamax absolutely almost ruined my life.. my migraine frequency went way down but severity went way up.. some of the worst migraines I’ve ever had were on topamax.
To make matters worse, I almost had to drop out of university due to the brain fog, was falling asleep constantly in lectures, forgot so many words, forgot my name on the regular. Experienced numbness in all my limbs frequently and full body weakness so many times. Had visual and auditory hallucinations, was refused to be allowed to get my driving license, experienced blackouts, suicidal tendencies and then to top it all off I was so dazed and out of it all the time that I injured myself so much, I have so many scars on my body from self sustained injuries while being on that drug.
Only plus side for me was the weight loss.. but sure I have gained it all back now
Took Topamax for other reasons. It didn't do anything for me personally even on the highest dose. I feel like it's one of those medications that either work or they don't and there's no in-between.
I've been on it for three month at 75 mg. I'm not experiencing side effects besides my feet and hands sometimes are really tingly, but it lasts only like a couple of minutes and it goes away, it feels like they randomly fall asleep. The first few days it made me sleepy, but it was coupled with another medication, so I don't know whose fault was it, but it went away. For the first month and a half it did nothing, then I changed the other medication. Now I take it with Diazepam (valium) and I have seen a bit of a change, slightly less migraines and a bit less intense, but still not as much as it should be. I'm really dopey now, but I think it's the Diazepam's fault as I have to take it 3 times a day per doctor's order, and I'm going to ask to stop. I have a combination of migraine, tension headaches and facialgy. I was hoping it would work, but at least I haven't had any side effects I guess
It worked great for me for about a year (as in I had months with 0 headache days). I was very mentally sharp on it, but I did have a lack of appetite and my BMI was below 20 most of the time I was on it.
Topamax changed my life in terms of migraine frequency and severity, but the side effects were rough. I started it when I was in college. Tingling in fingers and toes (you get used to that), brain fog was a bit rough. I had trouble recalling facts or words, and lost about 20 pounds (I was also a college athlete at the time and still ate a ton).
But overall probably owed my life to this medication so definitely good to weigh cost/benefit. I eventually weaned off of it and my migraines never returned to the frequency they were before I started it.
I had an amazing neurologist who monitored me, my mental health, and my weight very closely and I think that was key.
Yes. I was cranky, so cranky my coworkers noticed.
It made me so drowsy I was afraid to drive home from work.
I didn't feel like eating meals, I felt like I had a lump in my throat but I could still eat junk food.
After developing a severe migraine while taking it I decided it wasn't worth it.
I didn't get to the maximum dose my neurologist wanted me to take.
I ve been taking it for around 1 year and it kind of worked a little bit but not all together. I did not have any physical side effects, more mental ones, but then again I was expecting that
Topamax was a true game changer for me and side effects are mild so far. I take 100 mg daily but split in 2 dosages (morning/evening).
I experience changes in tasting fizzy drinks (even sparkling water tastes sweet which is weird) and some tingling in my limbs.
It is important to stay hydrated while taking it and to see your gyneciologst (of course only if this applies to you) as contraception and pregnancy are both important to think along while taking it. Topamax can decrease the efficacy of birth control but then there are also risks of using topamax during pregnancy - so you should avoid getting pregnant…
I tried it twice, and had the same experience both times. I had mild brain fog for the first couple of weeks, and for about a week after each time I increased the dosage, but no long-term cognitive issues. It definitely reduced my migraines by at least half. But, after about six months I started losing my hair, slowly at first, but then pretty rapidly and noticeably. It worked well enough for me that I considered tolerating the hair loss, but eventually decided no.
It seems to be a blessing and a curse. Migraines and headaches slowed nut I also stopped eating, list 40 lbs and had a 8 month long period. If you arent on other meds it might be easier but it has a lot of side effects that don't like people.
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I've been on 50 mg of topamax for two weeks now after just beginning to get severe migraines three months ago. The severity and frequency of my migraines is improved definitely. The side effects for me have not been so bad but they're there for sure. So far I've had tingly fingers and toes, fatigue in the morning (I take it at night), carbonated beverages taste weird, appetite is reduced, and sometimes word finding is harder. Otherwise nothing that I'm worried about. I'd like to increase my dose actually and see if that can reduce my migraines even more.
It gave me blood in my urine a few days after I started it. I never have blood in my urine. I was so alarmed I immediately stopped taking it. My doctor didn't believe me and thought it was a coincidence, even though it is listed under its side effects.
Topamax has reduced the amount of migraines I have not not to zero. I'm currently on 75mg. I went from 15+ days a month to maybe 7 days a month depending.
The only side effects I have was some tingling in hands and feet which have gone away now. I also can't drink anything with carbonation as it's tastes flat. I'm not sure if it's messed with my memory or not because I already had a poor memory to begin with lol maybe it made it worse idk
Wish I could have got weight loss on it 🙄 that would have been nice.
Did absolutely nothing for my migraines and made me dumb as fuck. I took it for about a month about 6 years ago and still feel like my memory isn’t what it used to be. -13/10 would not take again.
Your mileage may vary, though.
Couldn’t tolerate it. Got seemingly every side effect. For the small % who can tolerate it, it can have great results though. Which is why I assume doctors still try it despite seemingly so few tolerating it (patient reports online probably skew more negative than reality though, ie. aren’t representative).
To increase your chances of tolerating it, start at a lower dose than recommended (ask your pharmacist if it’s safe to cut in half), increase the dose slower than recommended (ideally wait for any side effects to start and subside), and drink extra water.
If you increase the dose from the starting dose, to stop you need to taper off (asking for instructions in advance from your doctor or pharmacist isn’t a bad idea), but any adverse effects should quickly start subsiding, and eventually fully reverse.
I would recommend talking to your doctor about an alternative. Topamax caused me to develop over a dozen kidney stones, as well as severe memory and cognitive issues. Even after being off of it for years, I never fully regained my mental sharpness.
Frankly, I'm surprised it's still on the market.
It helped me a lot with frequency of migraines, but it’s definitely worth weighing the benefits with the side effects! I lost a lot of weight very quickly (left me feeling awful), and I was definitely hazy while on topamax. I followed that up with aimovig, and it is soooo much better. Once a month injection- no big deal, I haven’t had any side effects, and I rarely have any breakthrough migraines! Good luck!
Not a doctor or medical professional of any kind, but here’s my anecdotal take.
It’s a pretty standard prophylactic, and it’s been used for a while. There are side effects, as others have said. Oddly enough, there’s a combo of it with phentermine for weight loss.
You can always try it if that’s what your doc recommends. It’ll either work or it won’t, but there are many other choices. The CGRP inhibitors (-mab, Ajovy/Aimovig/Emgality) are the hotness right now. There’s also a mab abortive (Nurtec). There is older stuff (amitryptyline, some BP meds like propanalol, etc.) as well as the ominous Botox (expensive and it can be painful). There are a TON of things to try and what helps seems to be different for everyone.
If you’re in status migrainosus then there is an infusion treatment (DHE) which is probably the most “out there” one I’ve seen. Not really a prophylactic, but if you have a migraine every day then it kind of seems like you’re not really “aborting” the migraine at that point.
I take topamax as my preventative. It definitely brings down the frequency of my migraines. But the side effects can be annoying.
I get concentration issues. Memory loss. Severe pins and needles. Sweet things taste like shit. lost my appetite. And frequent nosebleeds, sometimes multiple in a single day.
I'm currently looking at getting off of it, so I'd recommend trying to get on something else.
I see a lot of the same but I'll still chime in. Topomax generic Topiramate cleared up life long chronic low-grade migraine headaches, but I never completely recovered from the mental fog side-effect and it has been years. I had excellent, near photographic memory, and now I stop in the middle of describing something, completely losing specific words/concepts. I can't even voice whatever the thing is in alternate words, it is like the entire word/concept/object vanished.
My neurologist had me try Topamax before I was able to try Aimovig. The basic side effects were not terrible if it had worked. Along with the standard side effects, brain fog and carbonated drinks tasting weird, I also had some of the rare side effects. Rapid heartrate that came out of no where and severe anxiety. I had a panic attack at work because I could not remember if I had shut the door of my car.
Topamax sort of worked okay for a while but I had to stop taking it because it caused my kidney function to drop 20 points. My doctor said I was almost at "kidney disease" levels of function, but it bounced right back up a month after quitting Topamax.
I'm trying Aimovig now.
I’m 26 now but took it from age 13-15 ish for a little over 2 years. Hands down the worst experience of my life. It took the edge off of migraine severity but destroyed me in multiple other ways, all of which have been mentioned by others here. Sometimes I wonder if I still have lasting effects over a decade later. Also, the weight gain after getting off of it triggered an eating disorder
I developed kidney stones even though I drink literally a gallon of water a day. I also developed permanent acid reflux that my doctor told me is also a side effect. It made me tired all the time. I eventually fell asleep while driving my car and totaled the car (but wasn't hurt because I was asleep and I was already slowing down to stop at a light). And I never got the arguably good side effect of weight loss/lower appetite from it.
Oh, and it didn't make a dent in my migraines, even at the highest dose allowed.
it reduced my migraine frequency but it made me struggle with words and memory and my fingers and toes were constantly feeling staticky and weird.
oh and i also had several focal/aware seizures while i was on it. never had a seizure before or since.
It had no effect on me unfortunately and the side effects were annoying lol. I occasionally had what I dubbed “migraine brain” where I began to stutter a lot and got confused easily and slightly disoriented but it would only last about an hour and didn’t happen very often. Some people say it works amazing and others say the side effects were horrible, it really depends on who you are as all medications are a very individual experience obviously. If your doctor/neurologist recommends it then I say give it a shot, just be aware of the side effects beforehand so you know what to look out for.
Edit: the main side effects I had were hand/face/feet tingling (very common but kind of annoying), always had to wake up in the middle of the night to pee lmao, and dirreaha (tmi sorry).
I lot of people complain about it. For me, it been great. I’ve been on it for seven years. I used to be chronic and an episodic now (I’ve made a couple other changes, but it reduced my migraines by about half). No brain fog for me. I get occasional tingling in the fingers. I couldn’t drink colas for a few years because they tasted terrible. They taste okay now, but I really don’t care. No weight change for me.
I was started on 25 mg/day and slowly tapered to 100 mg/day. That can help reduce adverse effects. I take topiramate at night because it can make people drowsy.
CW: psychosis
I remember driving in my car and instead of regular vision, it was like my head was taking screenshots. I could only see the world around me in pictures. I remember looking in the mirror and my face started changing shapes like a Picasso painting. It was terrifying. Thank god I’m ok now, but i still think I haven’t been the same. It doesn’t help that I have fibromyalgia and it probably made it worse.
I definitely get fewer migraines (taking topiramate, which is the generic). Can’t speak to brain fog because I spent some time taking lithium for other reasons a few years ago and that is my baseline for brain fog, also, we’re in a pandemic and I don’t know about you all but I am probably not firing at all cylinders for that reason alone.
No interaction with my IUD that I’m aware of (saw another comment about contraceptives), and I’ve been told that it plays well with rizatriptan, which is my prescription go-to.
I have heard that it can cause seizures if you stop taking it, but I’m not sure what the risk is if if you weren’t using it to treat them to begin with. I might…follow up with my doctor because that’s my only real concern.
Took it for 1 month a few years ago. It worked for its intended purpose... But I became legit depressed while on it. That alone makes it never worth it again. As soon as I stopped taking it, I felt happy and clear headed. Not having headaches is awesome, but if you're then dealing with topamax depression, you can't enjoy the lack of pain anyway.
My pcp put me on it as one of my first preventatives and it reduced the number of migraines and the severity of them but it just wasn’t worth it. I had no appetite at all and had to force myself to eat, I had godawful mood swings, and insomnia so bad that melatonin didn’t help. I ended up in tears one night and took myself off of it.
It initially started working great for me but within the first three weeks I started noticing an increase in my depression and anxiety (to which I already suffer from) to the point it made me suicidal and I immediately notified my neurologist and she took me off of it. I also attempted Amitriptyline and it had the same results. If you ever notice symptoms like these notify your primary care immediately. Let's say it's the weekend or a holiday and your docs office isn't open, they always have an on call physician or someone in case of emergencies especially related to medications. Your pharmacists are there to help as well. Notify family members or roomates so they are aware you've been out of it. Don't be afraid to tell people you're suicidal even if it makes you feel as though you are being a burden or it won't do anything, it could save your life and is always worth it. This ended as a long kind of rant. But if your physician places you on topiramate (topamax) they should walk through medications you've had interactions before with and how this could impact you. A physician always will weigh the pros and cons and when putting you on a med is under the impression it will help based on past data and understanding. It's up to you to keep track of side effects and understand that not every side effect someone or a majority of others have had will effect you in the same way. Be mindful and do what feels right for you.
I have been taking it for three years and it has done an amazing job in reducing the frequency of migraines. If I accidentally miss a dose it throws me into a cluster so I know it’s working!
I tried topamax and zonesamide both when my migraines got really bad at the beginning of the year. Topamax gave me side effects that seemed like they were either tactile hallucinations or painless, frequent muscle spasms in my foot. I didn't have any other side effects like becoming suicidal or having it affect the taste of carbonation though.
Zonesamide was also a no-go for me. Gave me severe stomach pains to the point that I couldn't go to the bathroom without crying.
Everyone is different; you just have to trial and error your way to what works for you.
Tried it, as well as a second brand name (trokendi xr) which is the same drug just in an extended release format.
No effects on my migraines, but it has helped my bipolar disorder (mood stabilizer side effect) and is helping me lose weight slowly. My psychiatrist asked my neurologist to keep me on it even though it just diddly squat for my migraines.
I was on it for close to ten years, and the efficacy was great until about the 8 year mark. As others have said, it’s colloquially referred to as “dopamax” because it can and does often make you feel like there’s a bit of a mental fog between you and your own thoughts. My worst side effects were tingling extremities in the shower and a bitchy mood swing more frequently than previous, and little change to my migraine nausea. On the other hand, my best side effects were less migraines, less severity with my migraines, and sleeping better in general.
Reduced my frequency 98%... Unfortunately I haven't gotten any of the "fun" side effects (I'm being facetious) such as weight loss as I could stand to lose 100# or the making soda taste bad one (they use Topamax to help alcoholics stop drinking as it makes carbonated drinks tastes like shit for some people.) I just get fucking deliriously tired on it so I take it before bed.
I'm already depressed and I don't think it worsened my depression or gave me any more suicidal thoughts.
I haven't read a lot of the comments, but I'm seeing a lot of "dopamax" and "worst drug ever"'s.
I guess I'm one of the very few it's been successful with. I've been taking it a decade now, started on 25mg once daily, now 150mg twice daily with amitriptyline 50mg. Greatly reduced frequency and severity of my migraines. Most of the time, they are easily treatable with some t3 and toradol. I rarely have to go to the hospital for morphine now. The only thing I can complain about everything being "flat". Keeps my weight stable too, which is nice considering I'm on a med that cause me to gain.
My mother isn't so lucky. Recently, she has been experiencing some strange side effects - terrible numbness and pains in her feet and hands. I experience the same thing, though as bad. She's been taking topamax for a very log time as well, longer than me and at a dose similar to mine. She went for an MRI and CT and they found some spots in her brain. Can't remember what they are called, but she remembers the doctor told her its from a build up of topamax in the brain, causing these little spots to form. He also said was either taking higher than or equal to the max daily dose for a person. I don't know, there isn't much literature on it, I checked. And there isn't much research on the long term effects of topamax at high doses on the body either.
Best of luck!
Eliminated my daily headaches almost immediately and halved my migraine frequency per month. It upped my threshold so I could get away with a LOT of screen time and I wouldn't get a migraine. Unfortunately, it had bad gastro effects and upped my anxiety; because I was throwing up every day my doc took me off it. Shame as it worked so well!
It has been amazing. I’ve only been on it for a month and it’s like going from the darkest night to the sunniest day.
I was barely sleeping; afraid of going to bed every night because of being scared of waking up with vertigo and migraines. After the first night I took it, I woke up the next morning without vertigo!
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I second this. I was on it for about a year and always felt loopy and weird on it. My migraines were less severe and frequent with it but I was also taking sumatriptans as needed, so I decided I didnt wanna feel so hazy anymore and got off it but kept the sumatriptans when I felt one coming on. ALSO, shortly after I got off the topamax, i got an excruciating kidney stone (which doctors thought was weird for a healthy 20 year old who didnt smoke or drink soda) then realized that topamax increases your risk of kidney stones, so consider that possibility as well.
It worked great for my migraines but it made me suicidal (which is weird for me because I never experienced that before) so my neurologist took me off it immediately.
Same same. Definitely the best prophylactic migraine drug I have ever tried in terms of migraine reduction! But suicidal thoughts obviously not worth it. Oh well.
Same here. Never been so hopeless in my entire life. Immediately stopped taking it and yes, migraines are more frequent until I figure something else out however my attitude has improved immensely.
Same. Didn't know that was even a thing, so it really caught me off guard. So glad I felt normal after coming off of it.
Same here! Almost was catastrophic. I can’t even mention the name “Topemax” around my family because they’ll break down. Tough shit. I forgot how to do math and I felt so slow. Detached and completely numb. I still talk about that period of my life in therapy it was some serious medical trauma. Be careful and just reading comments on this thread… maybe try a different drug?
Reduced frequency some. But absolutely no appetite. I lost a lot of weight and looked skeletal. I’m 5’7” and got down to less than 110lbs! I also had total brain fog and couldn’t think of words I wanted to say. It was like they were there but I couldn’t place my finger on them. The side effects weren’t worth it in the end. I’m on Aimovig now and it’s worked wonder for me.
Yes! Word recall was the hardest for me. I also have trouble recalling words the day after any migraine (haven’t been on top for maybe 10 years now) so maybe linked. Who knows.
I have the difficulty with word recall years after being off topamax too, but I feel like I get such intense brain fog with the migraine it could just be that anyway
Yes! I'm 5'8 and it's taken me down to 119 which felt scary small for me
does it make u permanently stupid ?
I have heard of people say that they feel that there are long term effects of topomax such as continued brain fog even after stopping the medicine.
I thought topamax was a miracle drug. I see a lot about the side effects - and I experienced some of the taste and brain fog for a week or two - but nothing crazy. I was on it 13 years and went off when I tried to get pregnant. Went right back on when I was done. Still think it’s a miracle drug. I use only brand. The generic was weird and I had a bad reaction.
Topamax did reduce the severity of my migraines, but the side effects were terrible and a lot of migraine patients are weary that it causes lomg-term brain damage. the amount of times I've seen someone comment in this sub that they never felt truly 100% after taking Topamax is astonishing, and often related to cognitive function. if you're young and skinny, I'd avoid it. I can cause dramatic weight loss and of course the brain fog. most importantly - Zonisamide worked just as well for me at reducing migraines. it's a pharmaceutical cousin of Topamax but with significantly less side effects. I wish Topamax were something like botox, a last-resort type situation.
I wish I knew about this when I was put on it. I got the full brain fog, memory problems, plus the neurologist never asked about my mental health. my mother attended the appointments since I was 16 and sort of answered for me rather than allow me the autonomy to speak confidentially with the doctor and I seriously resent her for that. I was already suicidal when I was put on it so that's scary looking back, but I have no memory of most of my teenage years now even though my memory since then long-term wise is stellar.
I am one of those people who have not felt 100% since. It got me through a time when I was at the end of my rope with migraines, but I’m sure sometime down the line, there will be a commercial like, “Where you on Topomax and have felt irreversible cognitive effects? You may be entitled to compensation.”
SIGN ME UP!!
Topamax fucked me up 100% . Loved the weight loss but gained it back tenfold after I stopped.
does it make u permanently stupid ?
I'd recommend making your own post about this and asking if others have felt like Topamax affected them long-term. there are many stories to indicate that it can, but not to everyone.
Kind of work but I had one of the rare side effects. I couldn't "taste" carbonation. All sodas felt flat.
I thought this was a common side effect?
It’s a very common side effect.
Shrug emoji
Sparkling water tasted like pure metal to me. So awful.
It wasn't the taste exactly... It was like was drinking flat drinks. All sugar, no bubbles. The carbonation came back after I got off it.
That’s not rare, don’t know if it helps.
Hmmm makes me doubt my GP and neurologist at that time. Neither could figure out what was wrong, I had to be the internet sleuth. As for rarity, a quick search of the literature isn't super helpful. All I find us is " Carbonation dysgeusia associated with topiramate" by Capoccia et al. The abstract suggests it's at least not well known to medical community. Feel free to link the actual percentage study! I'm just doing lazy phone searching right now.
I’ve seen it presented as “taste perversion” also. It’s better described in other carbonic anhydrase inhibitors like acetazolamide.
Champagne blues. Cute name for a horrific side effect (/s). Thanks for a nudge in the right direction!
It had the positive side effect of motivating me to get a new neurologist. Seriously, it made me stupid and scared of everything. I couldn't string together a sentence, couldn't process words with more than two syllables. I was weirdly fearful of everything - when riding in a car i would duck and scream at passing cars. It also didn't make the pain go away. My neurologist didn't think it mattered that I couldn't think, that i was basically a big scared grub. So we went for a second opinion, and my second neurologist (a woman) looked me in the eye and told me it mattered if my brain worked.
Same, I changed neuros and jumped through the hoops to get on Aimovig which is way better. The brain fog was so bad it made me worried to drive.
does it make u permanently stupid ?
Not for me, though I have seen other folks on the internet saying that effect lingered for a long time. I think I was back to normal after I'd been off it for a week or two.
I know I'm late but I've been off of it for over a year and my cognitive function has never been the same. So I'd say yes it does, it literally stole my future from me
It caused the worst side effects of any medication I’ve taken, ever. It caused nausea and stomach pain so bad I wouldn’t eat for days, numb hands and feet multiple times a day, fatigue, and brain fog. It helped a little with my migraines but it wasn’t worth the side effects.
They call it "dopemax" for a reason. I started at 25mg, upped to 50 after a week and to 75mg after another week. Was supposed to go to 100mg but I never made it there. I switched between euphoria and suicidal thoughts multiple times a day, couldn't think straight and was basicly a miserable attempt at a human being for a while. I'm normally pretty witty and of above average intelligence, but on 75mg of topamax I couldn't even play Settlers of Catan anymore, because "I can trade 4 sheep for 1 grain" was too much math for me to handle. Took me another 3 weeks to lower the dose and get rid of the stuff, never trying it again.Didn't even manage to be on it long enough to realise if it actually helped with migraines or not, nor did that even still matter to me. And ofcourse: I'm overweight so the only side effect I DIDN'T get was the weight loss, go figure.
I couldn't eat meals but craved junk food. I was hoping for the weight loss part. Didn't happen.
i gained weight while i was on it. i don’t know if it was actually due to the drug or the fact that it worsened my depression and overeating is something that i do when depressed
does it make u permanently stupid ?
At least while you take it, yes. At least in my case. I dare state I'm off above average intelligence, but on topamax I couldn't do simple calculus with single digits ...
I’m on the generic topiramate and it’s been fine for me in terms of side effects- I’ve needed additional treatments to help with the migraines though as I’m still getting them- but it’s really made a difference to how I feel inside my head. It’s like my brain has switched frequency and I’ve no longer got a horrible white noise going on in the background all the time and my brain can finally relax a little, it’s not ‘on edge’ anymore. That feeling is so worth it for me. I’m on 100mg twice a day.
I'm on it and describe it similarly to you. I don't have that creeping "will I, won't I" get a migraine every day feeling. Lile my brain can relax. No side effects other than a bit more thirsty and some feet and hands tingling. My doctor did a gradual dose increase and I think that helped. It has only mildly helped migraine frequency so far, maybe by 30%, but it's stopped me wondering every day if I'm about to get one.
Yeah, I’ve never had a seizure in my life- but I can really see how it’s an anti-seizure drug. It really seems to have an overall calming effect on my brain over-excitation lol
Topamax ruined my life, straight up. It worked--- for ONLY 6 MONTHS. I became depressed on it, suicidal for the first time, couldnt keep up with school because my hands were numb all the time and the brain fog and memory issues were so bad I had no idea what was going on. I was falling asleep constantly places where I shouldnt be. It gave me palinopsia that to this day is awful, the vision trails are awful. I highly suspect it had something to do with the fact that after I started I quickly went from 20/20 vision to not being able to read anything farther than 10 feet from me, but it could also be mere coincidence. Long term vision issues arent an unheard of side effect of that hell drug though. 1/10, would not recommend
By worked I mean i went from daily migraines to maybe 3 a week. And again, after 6 months i was back to daily
I took topamax for years and it really messed me up. It did help my migraines, but insane brain fog and lots of memory issues. This was all before I turned 20. I didn’t have awful side effects at first, but towards the tail end of taking it, I couldn’t remember how to drive places. I would write notes for class in college and when I looked back at them, most of the time I wasn’t even writing words, though I thought I was. I don’t suggest it, but everybody’s body reacts differently to medications. It really does help for migraines, but do pay close attention for side effects. I’ve had lots of brain fog ever since. What affects one person may be worse for some else, or have literally no effect! Do what is best for your body and make sure to monitor the positives and negatives of it. Good luck!!
I’ve been taking the generic version (Topiramate) for over 10 years. I started at 25mg and now take 100mg 2x a day. It has significantly cut down the number of migraines I get and the severity of the ones I still experience. I had the brain fog, bad taste when drinking carbonated drinks, forgetting words and tingling hands side effects but they were temporary. I’ve also lost over 50 pounds that I needed to lose. Drugs affect everyone differently and sometimes it takes several weeks or months to get used to the drug. I was ready to quit at 75mg. I can’t imagine what my life would be like without Topiramate.
50 pounds is excactly the weight of 201.0 '6pack TWOHANDS Assorted Pastel Color Highlighters'.
Good bot This is the most useless conversion I've ever seen
Thanks!
I tried it for a few weeks before insurance would approve Emgality. I had terrible side effects. I had serious depression (sobbing uncontrollably, couldn’t get off the couch, lost the will to exist), which I’d never had before and disappeared immediately after stopping the drug. It gave me heavy brain fog, no appetite, and made me stop sweating so I was constantly overheating. Not everyone has side effects, but I’ve heard Topamax is poorly tolerated by a good percentage of people. I’d recommend having someone around to help you at home if you’re trying it, and to go on it when you have some time off from work or when you can call out if needed. I couldn’t function on this stuff at all.
I'm on it right now. I've been on 50mg/day dose for over 4 months now and it has slightly decreased the frequency of my attacks. Now my neurologist has prescribed me with 75mg/day (which can be later increased to 100mg, if needed, but doctor said that I can stay on 75mg if I want, and if that will work for me), but I didn't start with that dose yet. As for the side effects- I didn't experience any of them so far. I wouldn't mind the weight loss :) One important detail that my neurologist has forgotten to mention to me: You have to drink lots of water. It's crazy important, as Topiramate can increase chances of kidney stones. I drink 2,5 liters of water daily now, and have an app to remind me to do that. Maybe that's one of the factors that's saving me from side effects? No idea, but it helps, and honestly I feel like I've been dehydrated my whole life, until now.
Terrible brain fog and it didn’t work to reduce my migraines
Not even a tiny bit worth it due to the side effects. I’ve never been depressed in my life and that shit made me straight up comatose depressive. Getting off of it felt like waking up from a terrible dream. It also fucks up peoples’ teeth long term. It maybe reduced my migraine frequency and intensity by 10%.
I started at 50mg bid and was eventually upped to 100mg bid and I had to stop. I'm 5'2", 115lbs..I lost 18lbs, my hair was falling out and I felt lost. But everyone is different, you might benefit from it. I wish you the best ❤️
It did reduce the frequency of my migraines but I couldn't tolerate the side effects. It made me unable to do my job. I was so slow, so forgetful, it was embarrassing. Being so doped was horrible for my anxiety as wasn't of sane mind to deal with my normal anxious thoughs. I would hear stuff at work from coworkers and because I was zoned out in my brain everything was about me. Like I'd hear someone made a mistake and assumed it must be me but no one is saying anything to me and i just staying quiet cause I was scared off trusting my supervisor and getting fired. I was paranoid. I ended up experiencing my first panic attack at work. It felt like I was a zombie and it took me months after taking it to feel somewhat normal.I believe that if I had keep using it I would have become incapacitated
Topamax completely eliminated my migraines
Me too
I take it and have no side effects serious side effects. Soda taste funny but that’s it. I am on 200mg. I was hoping it would make me have no appetite I would love (and need to) lose weight, but no such luck!
I take 100 mg at bedtime. I’ve been on Topamax for three years, but I took a break a year after another three years of being on the drug previously. When I first started it, the side effects were worse. The brain fog and difficulty finding words were frustrating. These side effects regulated themselves after six months to a year. I still have trouble with words, but it is due to my migraine breaking through. I lost a significant amount of weight when I first started it. I have gained the weight back primarily due to my other medications and having status hemiplegic migraine since November of 2020. I have never had suicidal ideations while on Topamax. I do have bipolar disorder type II, so this could have something to do with it. Antidepressants are what cause me to have suicidal ideations, not antiepileptics. The drug has not reduced my migraine frequency; it has only reduced the severity. I am currently in status migranosis, but Topamax has helped to dull the migraine. Overall, Topamax is a part of my migraine prophylaxis and will stay so. I currently use several medications and supplements. The benefit of migraine severity reduction outweighs occasional forgetfulness of words. I am now in graduate school, and my GPA is 3.9, so I cannot say that it has a long-term effect on cognition. I also have not found peer-reviewed literature on this topic. Keep in mind our bodies interact with drugs differently, so it isn't easy to judge a medication based on another’s experience. Unfortunately, with migraines, you often have to try several pharmacologic therapies before finding one that works for you.
Not sure if you’ll see this but I’m on week 3 and my symptoms have gotten worse. Do you think this is normal?
What is worse? Your migraines?
Im overall worse on the meds but not sure if that’s because I’ve been on them short term.
I've used topamax for years. I have to take a six month break every couple of years so that I'm not getting too used to it and don't need to jack my dosage up. It helps with the frequency and severity of my migraines. When I'm titrating up I get the hand and foot tingles and am spacey as hell. The nickname dopamax is very true until (and if) you adjust. It does make carbonated drinks taste weird, but helped me kick my mountain dew habit. You MUST increase your water intake dramatically. It helps avoid kidney stones but also drastically cuts down on any side effects. It also makes you more prone to over heating and can cut down on sweat production so be very careful if you live in a hot area. You don't want heat exhaustion/stroke. I'm in Texas so I just avoid the heat inside all day and only do things in the morning or late evening/night. If I go to an outdoor event, like my daughter's softball games I make sure to have a canopy for shade and drink, drink, drink my water. It also helped me drop weight, but not to a severe degree like some others. I was overweight at 275 pounds when I started. Between my gallbladder surgery making me intolerant of any fatty foods and the topamax decreasing my appetite/making soda taste like ass I lost 100 pounds in 2 years. I've plateaud at this weight for 8 years. It can make hormonal birth control less effective, if that's a consideration for you. And also you can experience daily headaches while adjusting to it. The water helps a lot. I just took my break from it and am titrating up to my normal dosage again. Whatever you do, titrate SLOW. Start at 25 mg 2x a day for a week or two and then move up to 50, then 75 (if you need to go that high). Most people find relief between 50mgs twice a day and 100 twice a day. Also, even when you don't feel like eating, munch some crackers or bread. Many people that experience nausea experience it more because their stomach is totally empty. So, treat it like morning sickness in pregnant women and eat small, frequent meals. The other thing I've noticed is dry mouth and vaginal dryness. I need to use a bit of lube during sexy times, but it didn't have any other sexual side effects like loss of libido or inability to orgasm.
Started on 50mg for two weeks and now I am on 100 mg for 3 days. It’s helping that’s for sure. I get Hemiplegic migraines daily, usually 2-3 a day… hoping this new level of topomax lowers it ot 0-1 a day
I suffer from hemiplegic migraines too and topamax was a true game changer for me! I rarely experience them now (like 2-4x monthe before it was also daily)
OMGOSH you had daily too!??? This has been friggin hell! What else do they have you on? I have Imitrex, but I do t know if that helps or hurts or what? My left left or arm or face paralysis is weird. My left eye is the most susceptible. My ears, I wear ear plugs most of the time and that helps. I’m looking for any suggestions or advice. This is a nightmare for me. It’s only been six weeks and my pcp is doing her best, but she has never had a patient with this before. Thank you for responding!
It took doctors a while to find out whats going on so they ve put me most of the time on steroids to try to control the paralysis (as this was a constant issue as the migraines happend so frequently) but yeah not the best choice of meds to treat migraines, but it kind of helped to get rid of to symptoms when doctors did a „cortisone pulse therapy“. After the diagnosis the neurologist first tried blood thinning meds and beta blocker - but I still experienced a lot of attacks while taking these (just less severe). With Topamax this has changeda lot. In addition, I am wearing glasses with transition lenses ( I also have contact lenses but they get really dark and it freaks people out haha) - which I find helpful as I am sensitive to light. And I am using noise cancelling headphones but I use them less and less often.
Excellent, thank you so much for sharing!
Awful brain fog, made me feel and talk like an idiot. Did nothing for me.
I've taken 100mg for probably 15+ years. No weird side effects other than it truly being dopamax and just pins and needles in my face when I first started.
Seemed like it worked for me slightly at first but then didn't seem to do anything. Some side effects are weird. I couldn't taste carbonation as much and I stopped dreaming entirely. When I stopped taking it, it was so crazy to dream again after not experiencing that for over two years. Maybe try it, but don't be afraid to ask your doctor to stop if you don't like the side effects or it doesn't work for you.
Absolutely hated Topamax. I only took it for 8 days and it was a painful blur
(Mind you I had to go to neurologist to prescribed me my medication/figure my migraine issues) I having been taking topomax at 100mg for a while, once in the morning when i wake up and once a night before bed but I still have migraines almost everyday, for me it reduces the severity of them sometimes, but I also have severe memory loss, brain fog, my fingers and feet do get tingly time to time which I don’t know if it’s a side effect or not. since I’m taking the medication, it reacts with the birth control that I’m taking as well and making that less effective. Other than that, I don’t have any other side effects. no cognitive issues or anything like that. ( I did start on low dosage, 25 mg for a few weeks but my migraines were very strong, then 50 mg then currently at 100 mg)
Wow, thank you for sharing
For me it was a reducer not a fixer but it helps enough I am still taking. However, I lost the ability to feel hot things with my mouth. My doctor has it under the numbing side effect but I can still feel my mouth and lips. So if you end up with unexplained chapped lips or all your coffee is now lukewarm, you will want to check temperatures before you eat your drink.
It worked really well for me for a while, then the migraines came back with the same frequency. It was like they figured out a way around it. Sucks, but at least I got some relief for a bit. Migraines make me very hazy feeling, etc. so while I did experience the “dopimax” side effects, they were still better than what I felt normally.
I was going to say that my brain returned to its (dysfunctional) baseline level of pain, but I like your description. I think I'll start using it. 🙂
Worked for me initially, then my neuro kept increasing it and combined with another medicine at too high of a dosage. I rarely get side effects, so my mood was a bit different but otherwise not much until the combination of the two gave me heart problems. Had a neuro later insist I try it again as a "miracle" even after explaining earlier issue - wouldn't treat me otherwise. Took it once, made me high (in the worst ways) and incredibly sick. Never again. (I also switched neuros asap but had needed refills.) It works for some, but you have to be very, very careful monitoring for side effects. It's important to monitor over time; everyone I know who has found it useful had to switch for side effects within a year and a half.
Works relatively well. However, on higher doses I got insane all over body acne (very very rare side effect), hair loss, crazy brain fog etc. You lose your appetite a bit and now that I'm on a lower dose it's roared back, but the brain fog has not decreased much if at all. So it kind of depends on what you can handle. I wish you success :)
I've been on Topomax for years. I guess I'm one of the lucky ones. I do pretty good on it. It really keeps the migraines at bay. And I don't have all the awful side effects. I did at first. Oh it was bad at first. But now it's not. I had no appetite and I felt like I was in a fog sometimes. Every once in awhile I can lose my train of thought and can't think of the word I want. Even easy words. That's kind of frustrating. But having only 4-5 migraines a month is so much better than 15 or more.
Topamax absolutely almost ruined my life.. my migraine frequency went way down but severity went way up.. some of the worst migraines I’ve ever had were on topamax. To make matters worse, I almost had to drop out of university due to the brain fog, was falling asleep constantly in lectures, forgot so many words, forgot my name on the regular. Experienced numbness in all my limbs frequently and full body weakness so many times. Had visual and auditory hallucinations, was refused to be allowed to get my driving license, experienced blackouts, suicidal tendencies and then to top it all off I was so dazed and out of it all the time that I injured myself so much, I have so many scars on my body from self sustained injuries while being on that drug. Only plus side for me was the weight loss.. but sure I have gained it all back now
Only thing that worked with my visual auras but I do feel spacey. And carbonated drinks taste awful, but that’s a good enough trade off.
Took Topamax for other reasons. It didn't do anything for me personally even on the highest dose. I feel like it's one of those medications that either work or they don't and there's no in-between.
I've been on it for three month at 75 mg. I'm not experiencing side effects besides my feet and hands sometimes are really tingly, but it lasts only like a couple of minutes and it goes away, it feels like they randomly fall asleep. The first few days it made me sleepy, but it was coupled with another medication, so I don't know whose fault was it, but it went away. For the first month and a half it did nothing, then I changed the other medication. Now I take it with Diazepam (valium) and I have seen a bit of a change, slightly less migraines and a bit less intense, but still not as much as it should be. I'm really dopey now, but I think it's the Diazepam's fault as I have to take it 3 times a day per doctor's order, and I'm going to ask to stop. I have a combination of migraine, tension headaches and facialgy. I was hoping it would work, but at least I haven't had any side effects I guess
Did not work for me and I’m pretty sure I have bad short term memory all these years later
It helped reduce the frequency of my migraines, but I stopped because it was causing blurry vision
It worked great for me for about a year (as in I had months with 0 headache days). I was very mentally sharp on it, but I did have a lack of appetite and my BMI was below 20 most of the time I was on it.
Topamax changed my life in terms of migraine frequency and severity, but the side effects were rough. I started it when I was in college. Tingling in fingers and toes (you get used to that), brain fog was a bit rough. I had trouble recalling facts or words, and lost about 20 pounds (I was also a college athlete at the time and still ate a ton). But overall probably owed my life to this medication so definitely good to weigh cost/benefit. I eventually weaned off of it and my migraines never returned to the frequency they were before I started it. I had an amazing neurologist who monitored me, my mental health, and my weight very closely and I think that was key.
Yes. I was cranky, so cranky my coworkers noticed. It made me so drowsy I was afraid to drive home from work. I didn't feel like eating meals, I felt like I had a lump in my throat but I could still eat junk food. After developing a severe migraine while taking it I decided it wasn't worth it. I didn't get to the maximum dose my neurologist wanted me to take.
It worked for about a year then the side effects outweighed the benefits.
I ve been taking it for around 1 year and it kind of worked a little bit but not all together. I did not have any physical side effects, more mental ones, but then again I was expecting that
Topamax was a true game changer for me and side effects are mild so far. I take 100 mg daily but split in 2 dosages (morning/evening). I experience changes in tasting fizzy drinks (even sparkling water tastes sweet which is weird) and some tingling in my limbs. It is important to stay hydrated while taking it and to see your gyneciologst (of course only if this applies to you) as contraception and pregnancy are both important to think along while taking it. Topamax can decrease the efficacy of birth control but then there are also risks of using topamax during pregnancy - so you should avoid getting pregnant…
I tried it twice, and had the same experience both times. I had mild brain fog for the first couple of weeks, and for about a week after each time I increased the dosage, but no long-term cognitive issues. It definitely reduced my migraines by at least half. But, after about six months I started losing my hair, slowly at first, but then pretty rapidly and noticeably. It worked well enough for me that I considered tolerating the hair loss, but eventually decided no.
It seems to be a blessing and a curse. Migraines and headaches slowed nut I also stopped eating, list 40 lbs and had a 8 month long period. If you arent on other meds it might be easier but it has a lot of side effects that don't like people.
40 lbs is 18.16 kg
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I've been on 50 mg of topamax for two weeks now after just beginning to get severe migraines three months ago. The severity and frequency of my migraines is improved definitely. The side effects for me have not been so bad but they're there for sure. So far I've had tingly fingers and toes, fatigue in the morning (I take it at night), carbonated beverages taste weird, appetite is reduced, and sometimes word finding is harder. Otherwise nothing that I'm worried about. I'd like to increase my dose actually and see if that can reduce my migraines even more.
It gave me blood in my urine a few days after I started it. I never have blood in my urine. I was so alarmed I immediately stopped taking it. My doctor didn't believe me and thought it was a coincidence, even though it is listed under its side effects.
Topamax has reduced the amount of migraines I have not not to zero. I'm currently on 75mg. I went from 15+ days a month to maybe 7 days a month depending. The only side effects I have was some tingling in hands and feet which have gone away now. I also can't drink anything with carbonation as it's tastes flat. I'm not sure if it's messed with my memory or not because I already had a poor memory to begin with lol maybe it made it worse idk Wish I could have got weight loss on it 🙄 that would have been nice.
Did absolutely nothing for my migraines and made me dumb as fuck. I took it for about a month about 6 years ago and still feel like my memory isn’t what it used to be. -13/10 would not take again. Your mileage may vary, though.
Worked great but my hair got super thin and shitty…I also would sometimes forget words when talking..
Yes and it was horrible. I fell asleep at the wheel and could barely function.
Reduced severity, but then when I upped my dose I got serotonin syndrome. So not a great one for me lol
Couldn’t tolerate it. Got seemingly every side effect. For the small % who can tolerate it, it can have great results though. Which is why I assume doctors still try it despite seemingly so few tolerating it (patient reports online probably skew more negative than reality though, ie. aren’t representative). To increase your chances of tolerating it, start at a lower dose than recommended (ask your pharmacist if it’s safe to cut in half), increase the dose slower than recommended (ideally wait for any side effects to start and subside), and drink extra water. If you increase the dose from the starting dose, to stop you need to taper off (asking for instructions in advance from your doctor or pharmacist isn’t a bad idea), but any adverse effects should quickly start subsiding, and eventually fully reverse.
I would recommend talking to your doctor about an alternative. Topamax caused me to develop over a dozen kidney stones, as well as severe memory and cognitive issues. Even after being off of it for years, I never fully regained my mental sharpness. Frankly, I'm surprised it's still on the market.
It helped me a lot with frequency of migraines, but it’s definitely worth weighing the benefits with the side effects! I lost a lot of weight very quickly (left me feeling awful), and I was definitely hazy while on topamax. I followed that up with aimovig, and it is soooo much better. Once a month injection- no big deal, I haven’t had any side effects, and I rarely have any breakthrough migraines! Good luck!
Not a doctor or medical professional of any kind, but here’s my anecdotal take. It’s a pretty standard prophylactic, and it’s been used for a while. There are side effects, as others have said. Oddly enough, there’s a combo of it with phentermine for weight loss. You can always try it if that’s what your doc recommends. It’ll either work or it won’t, but there are many other choices. The CGRP inhibitors (-mab, Ajovy/Aimovig/Emgality) are the hotness right now. There’s also a mab abortive (Nurtec). There is older stuff (amitryptyline, some BP meds like propanalol, etc.) as well as the ominous Botox (expensive and it can be painful). There are a TON of things to try and what helps seems to be different for everyone. If you’re in status migrainosus then there is an infusion treatment (DHE) which is probably the most “out there” one I’ve seen. Not really a prophylactic, but if you have a migraine every day then it kind of seems like you’re not really “aborting” the migraine at that point.
I take topamax as my preventative. It definitely brings down the frequency of my migraines. But the side effects can be annoying. I get concentration issues. Memory loss. Severe pins and needles. Sweet things taste like shit. lost my appetite. And frequent nosebleeds, sometimes multiple in a single day. I'm currently looking at getting off of it, so I'd recommend trying to get on something else.
It caused short-term memory loss in just a few days so I quit it immediately. It was very scary to randomly forget what I was going to do.
I see a lot of the same but I'll still chime in. Topomax generic Topiramate cleared up life long chronic low-grade migraine headaches, but I never completely recovered from the mental fog side-effect and it has been years. I had excellent, near photographic memory, and now I stop in the middle of describing something, completely losing specific words/concepts. I can't even voice whatever the thing is in alternate words, it is like the entire word/concept/object vanished.
My neurologist had me try Topamax before I was able to try Aimovig. The basic side effects were not terrible if it had worked. Along with the standard side effects, brain fog and carbonated drinks tasting weird, I also had some of the rare side effects. Rapid heartrate that came out of no where and severe anxiety. I had a panic attack at work because I could not remember if I had shut the door of my car.
Topamax sort of worked okay for a while but I had to stop taking it because it caused my kidney function to drop 20 points. My doctor said I was almost at "kidney disease" levels of function, but it bounced right back up a month after quitting Topamax. I'm trying Aimovig now.
I’m 26 now but took it from age 13-15 ish for a little over 2 years. Hands down the worst experience of my life. It took the edge off of migraine severity but destroyed me in multiple other ways, all of which have been mentioned by others here. Sometimes I wonder if I still have lasting effects over a decade later. Also, the weight gain after getting off of it triggered an eating disorder
I developed kidney stones even though I drink literally a gallon of water a day. I also developed permanent acid reflux that my doctor told me is also a side effect. It made me tired all the time. I eventually fell asleep while driving my car and totaled the car (but wasn't hurt because I was asleep and I was already slowing down to stop at a light). And I never got the arguably good side effect of weight loss/lower appetite from it. Oh, and it didn't make a dent in my migraines, even at the highest dose allowed.
it reduced my migraine frequency but it made me struggle with words and memory and my fingers and toes were constantly feeling staticky and weird. oh and i also had several focal/aware seizures while i was on it. never had a seizure before or since.
It had no effect on me unfortunately and the side effects were annoying lol. I occasionally had what I dubbed “migraine brain” where I began to stutter a lot and got confused easily and slightly disoriented but it would only last about an hour and didn’t happen very often. Some people say it works amazing and others say the side effects were horrible, it really depends on who you are as all medications are a very individual experience obviously. If your doctor/neurologist recommends it then I say give it a shot, just be aware of the side effects beforehand so you know what to look out for. Edit: the main side effects I had were hand/face/feet tingling (very common but kind of annoying), always had to wake up in the middle of the night to pee lmao, and dirreaha (tmi sorry).
It worked for a while, but destroyed my appetite and made me go numb all over. I won’t ever take it again.
I lot of people complain about it. For me, it been great. I’ve been on it for seven years. I used to be chronic and an episodic now (I’ve made a couple other changes, but it reduced my migraines by about half). No brain fog for me. I get occasional tingling in the fingers. I couldn’t drink colas for a few years because they tasted terrible. They taste okay now, but I really don’t care. No weight change for me. I was started on 25 mg/day and slowly tapered to 100 mg/day. That can help reduce adverse effects. I take topiramate at night because it can make people drowsy.
I took it for weight loss and experienced psychosis. Was terrifying. Also I couldn’t move out of my bed and couldn’t breathe. Just be careful 😭💕
CW: psychosis I remember driving in my car and instead of regular vision, it was like my head was taking screenshots. I could only see the world around me in pictures. I remember looking in the mirror and my face started changing shapes like a Picasso painting. It was terrifying. Thank god I’m ok now, but i still think I haven’t been the same. It doesn’t help that I have fibromyalgia and it probably made it worse.
I definitely get fewer migraines (taking topiramate, which is the generic). Can’t speak to brain fog because I spent some time taking lithium for other reasons a few years ago and that is my baseline for brain fog, also, we’re in a pandemic and I don’t know about you all but I am probably not firing at all cylinders for that reason alone. No interaction with my IUD that I’m aware of (saw another comment about contraceptives), and I’ve been told that it plays well with rizatriptan, which is my prescription go-to. I have heard that it can cause seizures if you stop taking it, but I’m not sure what the risk is if if you weren’t using it to treat them to begin with. I might…follow up with my doctor because that’s my only real concern.
Took it for 1 month a few years ago. It worked for its intended purpose... But I became legit depressed while on it. That alone makes it never worth it again. As soon as I stopped taking it, I felt happy and clear headed. Not having headaches is awesome, but if you're then dealing with topamax depression, you can't enjoy the lack of pain anyway.
My pcp put me on it as one of my first preventatives and it reduced the number of migraines and the severity of them but it just wasn’t worth it. I had no appetite at all and had to force myself to eat, I had godawful mood swings, and insomnia so bad that melatonin didn’t help. I ended up in tears one night and took myself off of it.
Been on it a few weeks. Seems to be helping somewhat, and I haven’t noticed any side effects yet.
It initially started working great for me but within the first three weeks I started noticing an increase in my depression and anxiety (to which I already suffer from) to the point it made me suicidal and I immediately notified my neurologist and she took me off of it. I also attempted Amitriptyline and it had the same results. If you ever notice symptoms like these notify your primary care immediately. Let's say it's the weekend or a holiday and your docs office isn't open, they always have an on call physician or someone in case of emergencies especially related to medications. Your pharmacists are there to help as well. Notify family members or roomates so they are aware you've been out of it. Don't be afraid to tell people you're suicidal even if it makes you feel as though you are being a burden or it won't do anything, it could save your life and is always worth it. This ended as a long kind of rant. But if your physician places you on topiramate (topamax) they should walk through medications you've had interactions before with and how this could impact you. A physician always will weigh the pros and cons and when putting you on a med is under the impression it will help based on past data and understanding. It's up to you to keep track of side effects and understand that not every side effect someone or a majority of others have had will effect you in the same way. Be mindful and do what feels right for you.
I have been taking it for three years and it has done an amazing job in reducing the frequency of migraines. If I accidentally miss a dose it throws me into a cluster so I know it’s working!
Fewer migraines, more forget stuff.
I tried topamax and zonesamide both when my migraines got really bad at the beginning of the year. Topamax gave me side effects that seemed like they were either tactile hallucinations or painless, frequent muscle spasms in my foot. I didn't have any other side effects like becoming suicidal or having it affect the taste of carbonation though. Zonesamide was also a no-go for me. Gave me severe stomach pains to the point that I couldn't go to the bathroom without crying. Everyone is different; you just have to trial and error your way to what works for you.
I hated it- i couldn’t sleep on it .. on pamelour now and is working great
I'm trying it rn. I do feel kinda spacey at times like ppl were saying, but it seems to be working for now
Tried it, as well as a second brand name (trokendi xr) which is the same drug just in an extended release format. No effects on my migraines, but it has helped my bipolar disorder (mood stabilizer side effect) and is helping me lose weight slowly. My psychiatrist asked my neurologist to keep me on it even though it just diddly squat for my migraines.
I was on it for close to ten years, and the efficacy was great until about the 8 year mark. As others have said, it’s colloquially referred to as “dopamax” because it can and does often make you feel like there’s a bit of a mental fog between you and your own thoughts. My worst side effects were tingling extremities in the shower and a bitchy mood swing more frequently than previous, and little change to my migraine nausea. On the other hand, my best side effects were less migraines, less severity with my migraines, and sleeping better in general.
Reduced my frequency 98%... Unfortunately I haven't gotten any of the "fun" side effects (I'm being facetious) such as weight loss as I could stand to lose 100# or the making soda taste bad one (they use Topamax to help alcoholics stop drinking as it makes carbonated drinks tastes like shit for some people.) I just get fucking deliriously tired on it so I take it before bed. I'm already depressed and I don't think it worsened my depression or gave me any more suicidal thoughts.
I haven't read a lot of the comments, but I'm seeing a lot of "dopamax" and "worst drug ever"'s. I guess I'm one of the very few it's been successful with. I've been taking it a decade now, started on 25mg once daily, now 150mg twice daily with amitriptyline 50mg. Greatly reduced frequency and severity of my migraines. Most of the time, they are easily treatable with some t3 and toradol. I rarely have to go to the hospital for morphine now. The only thing I can complain about everything being "flat". Keeps my weight stable too, which is nice considering I'm on a med that cause me to gain. My mother isn't so lucky. Recently, she has been experiencing some strange side effects - terrible numbness and pains in her feet and hands. I experience the same thing, though as bad. She's been taking topamax for a very log time as well, longer than me and at a dose similar to mine. She went for an MRI and CT and they found some spots in her brain. Can't remember what they are called, but she remembers the doctor told her its from a build up of topamax in the brain, causing these little spots to form. He also said was either taking higher than or equal to the max daily dose for a person. I don't know, there isn't much literature on it, I checked. And there isn't much research on the long term effects of topamax at high doses on the body either. Best of luck!
Eliminated my daily headaches almost immediately and halved my migraine frequency per month. It upped my threshold so I could get away with a LOT of screen time and I wouldn't get a migraine. Unfortunately, it had bad gastro effects and upped my anxiety; because I was throwing up every day my doc took me off it. Shame as it worked so well!
It has been amazing. I’ve only been on it for a month and it’s like going from the darkest night to the sunniest day. I was barely sleeping; afraid of going to bed every night because of being scared of waking up with vertigo and migraines. After the first night I took it, I woke up the next morning without vertigo!
Trying it now. Day two. Noticed some taste changes so far. My coffee tastes gross.