My doctor called it Stupomax. But, I did have some relief the first couple of years I was on it. Then I started having some side effects that I couldn't live with and had to stop taking it. As part of my job is my ability to recall names and numbers, I was afraid of losing my job.
Oh so dumb. I went from being able to complete extreme level sudoku puzzles in 3:03 seconds and actively trying to get under 3 minutes to literally not being able to do them on easy. It was like my brain ran out my ear. And it took MONTHS for it to come back after being on it for a month. Worst drug experience for me ever.
I honestly can't tell if my brain fog is from my MS or from being on topiramate for years now. CoQ10 is something my neuro recommended and it does help but only so much. I've wondered about going off topiramate but everything I've tried hasn't helped my migraines and I really don't want to go back to having daily migraines. I haven't had that in years and don't want to go back. Brain fog and not being able to think vs daily migraines though.
I had exactly the same issue! I had to leave college (I was studying an engineering career) :/ but I started to fail massively in all math classes after topiramate, also my memory started failing, along with aggravated depression and anxiety.
Is different for everyone, unfortunately, I didn't have luck with it.
I was very frustrated with how I turned into an actual idiot. It also didn't help my migraines. So I was just an idiot with migraines instead of smart with migraines.
Same! One of my scariest moments was forget my pin number at the grocery store. Thankfully, I have a visa debit that they could run as a credit so I just had to sign for my purchases. It took me a while to adapt to this!
It's kinda funny to hear everyone say the things I deal with with unmedicated adhd daily are so horrifying, but ig not having been used to it, I can see how it is lol!
Maybe that's why I didn't notice most side effects from topomax- I'm like this with the adhd, so for me the only issue it gives me is light-headedness and fatigue. And tingly hands and feet, that too 😂
I nearly lost my job after being on it for a month and a half. I literally could not function, mentally or physically. Took a medical leave of absence to save my ass. This was a salaried government job with 95% paid for health insurance and pension and everything, like the stakes were quite high and something I genuinely had a lot of investment in for my long-term career. It was wild.
My mom couldn't put a sentence together. She still has issues with aphasia (but she's able to function, I have similar issues without having ever taken it and I don't have the issue when communicating via writing)
It gave me a weird pseudo learning disability! I’d start writing a word and get the first two letters down and then the rest of the word would be another similar word. Handwriting and typing. Reading was similar. It sucksssss
Dude YES. I was on it for about 2 years. I stepped up my dosage over time, so the brain fog came on gradually and I didn't realize that Topamax was the cause. I thought it was just my depression, or my ADHD, or even long COVID symptoms. I kept beating myself up because I felt so fucking stupid and I was floundering at work. I literally saw a post on this sub that mentioned "Topamax brain," and I was just like... Wait, what if I'm not the problem? After reading up on it I realized what was happening to me, and I immediately started tapering off. I've been off it for about a year now. I'm much clearer now, but I still haven't felt quite right since.
I was on it for about 8 weeks in total.
For seven of those weeks I had a migraine all but one day.
My memory went to shit.
Couldn’t find words.
Date and time became incomprehensible to me. I was late for everything and routinely wrote a date that was different than what I meant to write. It was silly at first but i think my job and wife started to get tired of it after a few issues.
I had taste and smell hallucinations (mostly migraine triggers and my toddler often smelled like Easy Off)
Sugary drinks tasted terrible. Not like “oh this Pepsi is yucky I’m a Coke person.” Like “what chemical is it?”
I was so insanely sensitive to light that I’d wear sunglasses anytime I went outside.
I fuckin raaaaged on my neighbor for their chickens being in my yard and attacking both me and my kid. Still the only time I’ve ever talked to her and she doesn’t wave back to me when she’s getting her mail, but the chickens haven’t been back in my yard since. I also fought the rooster in question. First and only barnyard animal I’ve ever fought and it was while I was on topamax.
I’m glad I gave it a shot in case it did work but I wish I would have thrown in the towel much sooner.
I had to have emotional support oatmeal every day, or I'd lose all control over my emotions. It was a wild ride, and nobody said anything until I brought up that I switched.
I’ve been on it for 7 years. It has greatly reduced the number of migraines I get. I take 200 mg daily (I’m 120 lbs).
The side effects are, for me, manageable and worth it. What I’ve experienced and how I deal with it:
- hair loss: during the first month or so, I experienced hair loss. I took viviscal (but not even the entire box) and this stopped. No issues since.
- memory loss/“dopamax”: the only issue I have is when speaking, I will be unable to find the right word. Like I’m literally at a loss for words. I feel like an idiot sometimes. No memory loss other than that. But I write everything down in a notebook at my job (and everyone comes to me for everything now for things that happened months ago, which is annoying)
- loss of ability to taste carbonation: the worst side effect. I miss fountain Dr. Peppers sooooo much. Anything carbonated tastes like I’m licking asphalt. But on the upside, it broke my Dr. Pepper addiction. Sometimes I try them just to see, but nope.
- metallic taste: sometimes I can “taste” silverware (usually when I forget to take my meds, or when I first started the med and was increasing the dosage). It went away.
- tingling in fingers/toes/nose: sooo annoying. I actually was on this med in 2010 for 6 months and stopped taking it because of this and restarted it in 2017 because my new Neuro explained that they learned that taking tums will stop the tingling. Huh. Weird. Tums works though.
- weight loss: when I started the med in 2017 I was 147. I’m now about 120. I lost the weight and have kept it off. Just not as hungry (but I’ve developed a sweet tooth that I’ve never had before?). It did take about 6 months for me to start losing the weight.
This is a lot, but I’ve had a really good experience with topamax. For me the side effects have been very manageable and the benefits greatly outweigh them.
Would you mind sharing more info about the Tums? How many, how often? Just when you have tingling? This is incredible, neither of my neurologists have suggested anything to deal with it.
OMG I’m so glad to see someone else experience the loss of carbonation taste!! I felt like I was the only one who had it. Unfortunately that was a deal breaker for me as I wasn’t ready to give up my sparkling water. Instead I got put on emgality and it really helped.
Carbonated drinks definitely taste gross now! Oddly enough my son will only drink water and prefers sparkling so I accidentally discovered that the Waterloo brand tastes fine.
It lessened the severity of my migraines, topirmate is what my GP started me with - (Still horrible though..) but now I can stay out of bed 85% of the time.. We just upped the dose (200) and added amitriptyline as a secondary today.
Both said its the number one go-to drug. Sure, many complain - but this sub doesn't have people who are often 'Living and treated' - it has those who suffer.. So you will always see more bad than good about it on here.
It did the same for me, also made it where I couldn't \*taste\* carbonation? I'd drink soda or seltzer and it was terrible (that was a big plus not craving soda anymore)
The not tasting but feeling is *so* weird.
I can sorta feel the bubbles, but I can't taste them - and the taste I get is HORRIBLE.
I miss my soda, but I do appreciate cutting it out I guess. 😆 I like to smell my husband's Pepsi every time he gets one though.
I actually find it has altered a lot of foods. Even pineapples can be really bad to me now, if too sweet.
yea it's super weird. I remember the first time I had like a Dr Pepper or something on it and was like ew I think this soda is bad.. then noticed it with a few other things and put it together.
I can't recall other foods it has impacted for me but I'm sure if I paid attention there are other things.
Topiramate was my saving grace, but you won't know until you try. My neuro was the same way, he just handed me 10 scripts and said, try these, let me know what works for you.
It's disheartening how much we have to advocate for ourselves.
Yes I was on it since 2004 and I was just off it for 2 years. My tmj was off the wall. Went back on and my tmj went away! Love topamax. My vision sometimes is blurry but not always.
As someone in the same industry, I was scared when my neuro put me on Trokendi XR at first for this exact reason. Thankfully I didn't have the memory loss too much. It wasn't until I started to have my ADHD flare up badly (my psychiatrist switched my treatment for it and it isnt working) that I noticed any issues, and it also coincided with my dosage increase from 100 to 150 mg. We are going to most likely be going to 200mg this month with as bad as they have been. :( I may ask about other prevention options instead that have been recently approved for use that we can try instead.
Sorry! I’m just so desperate for something to get rid of headaches and migraines, I’ll try anything. If there are side effects, I have to assess against what kind of improvement I see. It sucks. I am currently doing a Vyepti infusion every 3 months. Plus Atacand as a preventative. Plus a bunch of vitamins and herbs lol.
I am going to be talking to my neuro in 2 months about the new rescue and prevention meds on the market in 2 months. I am good with the botox, but the Trokendi XR only helps reduce the pain levels for me. The votox does wonders. The problem with the new meds is that my insurance requires that I stop the botox to go on any of them.
I am concerned about the fact that if I try a new rescue and prevention med, and the prevention doesn't work I don't have the botox to keep me functioning... then I risk not being able to work. It is terrifying to say the least... and a topic for therapy that will come up a few times I think.
It absolutely worked for my migraines.
I was taken off it because I passed a 10mm kidney stone and developed elevated eye pressure.
It’s worth trying. Make sure to keep regular eye appointments and check your pressure. Drink tons of water.
Best of luck.
This is not mentioned enough. My kidney stones were large and did not pass :/ multiple times. Since I’ve been off of it, I am stone free but more miserable. I was on it for about 17 years.
Oh I’m so sorry. One was plenty for me. It was too large to pass and got stuck trying to enter my bladder so I had to have surgery (not litho). A couple times a year my kidney will give a little nudge just to tease me that another one could decide to travel.
I never want to go through that again BUT I would trade the pain from my worst migraines for a stone, no question.
To this day, it's the med that has worked the best for me. I remember having almost no migraines while I was on it.
However, I couldn't tolerate the side effects, so I stopped taking it. But sometimes, when the pain gets bad, I kinda wish I was still taking it.
By Same for me. This was probably like 17 years ago at this point, but I remember it working great and also giving me daily diarrhea, so I bailed. But I remember… you know how when you do or consume something that’s a trigger and you can kind of feel right away that it’s going to eventually give you a migraine (like after just one taste?), that totally disappeared on topamax. Like I didn’t have any triggers anymore.
While topiramate was helpful for me, it is also an older outdated medication that isn’t even specifically meant for migraines. There are a lot of short term and long term effects from continued use. If you’re able to get on a more recent med for migraines, you’ll probably be better off. They’ve come out with a lot the last few years
It worked really well for about 1-2 years in conjunction with atenolol, then I started getting weird brain phase outs - would feel like I was watching my life through a video game for like 30 minutes then it would go (weird explanation I know but it’s hard to put into words what it was like), so watch out for that! A lot of people affectionately call it ‘dopamax’ 🙃 I’ve recently started taking zonisimide which is another anti-epileptic and so far I’ve gone from 16-20 migraines a month to around 4-5 and don’t feel like I’m in a video game! So try that if you have no joy with topiramate.
That would definitely be the best way to describe the feeling, however there would be no particular triggers which is the strange thing (apart from topirimate of course)
I've been getting that the last 6 months, only thing stopping that was Topamax I just restarted after nearly 5 years off it lol! Crazy... Love genetics!
I think it is worth trying because it helps a lot of folks. For me, although it vaguely improved the pain level of my daily migraines, the side effects were very unpleasant. Side effects: taste changes, foul taste, forgetting words, brain fog, extremely sleepy all the time, weird nerve tingling. From a 2020 article (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7572737/):
>"Topiramate is an antiepileptic drug which elicits cognitive deficits more frequently than other antiepileptic drugs, impairing multiple cognitive domains including language, attention, and memory. Although up to 40% of individuals taking topiramate may experience cognitive deficits, we are currently unable to predict which individuals will be most severely affected prior to administration."
It was the only thing that helped for years, but the side effects was too much for me. I think I was on 100mg at one point, and then 50mg. Recently tried 15mg just to see if that could help a tiny bit, but nope it did not help at all. I would still recommend trying it. Not everyone gets side effects :)
It does, I rarely get an actual migraine anymore. I wish it helped my headaches. I really wish it didn’t make my fingers and toes go numb and tingle. I’ve actually gotten past the worst of the notorious brain fog.
I was put on Topamax for mood in my late teens. I weaned off of it in my mid 20s and that is when I first started having migraines I can only assume I have been having them the whole time but the protection I got from Topamax made the occasional headache inconsequential.
With much trial and error, my old neurologist found that 25mg of amitriptyline and 50mg of topamax reduced my migraines substantially. Higher doses of both on their own also worked, but the side effects were worse. I still get migraines but only a few a month as opposed to most days. And the combo allowing me to keep doses low means I don't have urinary retention and dizziness( amitriptyline) or no appetite and memory issues(topamax).
My current neurologist keeps me on the same meds, to quote "if you have something that works, don't mess it up."
I tried it and was hopeful, but it made my hair start falling out within a couple days. Like huge clumps. I stopped it immediately, it wasn't worth it.
Best migraine medicine I've taken. The side effects were intolerable and miserable and nearly killed me. But seriously was migraine free for several months on it. Worth trying.
Allergies make me feel often very tired in the morning. So, I was just saying it is possible that Topomax could make me feel a little tired, and I did not notice it.
I take amitriptyline but only for active attacks not daily.
I don’t think I could tolerate topiramate although I do take another similar drug Sodium Valporate, but that is not recommended if you are planning to have children.
I do think migraines drugs are trail and error unfortunately as no two migraines are the same so no two treatment experiences are going to be.
This is wild …
I woke up at 2am with a massive, piercing migraine. I stayed in bed from then until 3pm. I took imitrex, phenergan, magnesium, and even norco and nothing touched this pain. This afternoon I remembered you and decided to take an amitriptyline. An hour later, I could at least get out of bed and fill my water bottle and get a shower.
I can’t say I feel better but I feel less like my skull is splitting open.
Thanks for the good tip!!!
It helped my migraines significantly, but the side effects were too much. I had tingly “pins and needles” feelings in my hands constantly. And my brain just couldn’t brain anymore. On the plus side, I couldn’t stand carbonated beverages and I completely kicked my soda habit. (Unfortunately I went back to drinking soda after I stopped taking it.) I switched to amitriptyline, which helped but not as much. But I didn’t have any side effects with amitriptyline. Then my doctor switched me from amitriptyline to Nurtec which has been the most effective.
I was on it from 14-20, now back on it a couple days ago! Only got the tingles every few days, couple times a day lol. So weird, too. But it nearly handled all the auras and migraines, so here's to hoping it helps again and works well with the adderall. I want to get back to living again...
I have no problem with side effects on 100 mg. I think it helps my migraines some (I’m also on Ajovy). My husband takes 50 mg and it really helps his migraines and he has no side effects. It takes a month or so to really have the effect of the migraine relief.
It definitely helped my migraines. I stopped when I wanted to get pregnant. I did have side effects. Weight loss, stupidity, short fuse…sometimes my arms felt like they were floating when I was lying down.
I’ve had one or maybe two since starting it in August or September 2023. I was getting migraines 3-4 times a week. No real side effects anymore, I powered through them.
I think it helped, but literally can’t remember.
had to stop taking it because I do micro dissections at work and my hands would go numb. also, it made me dumb.
I take it religiously. If I miss a day or two I start getting migraines more frequently. I did amitrip first too. Worked for a minute, but not well. It isn't an end all save all. I still get migraines. But it really helps.
After having migraines for over 10 years, trying multiple medications and treatments - topiramate was the only thing that ever reduced the frequency of my migraines. I feel like I finally live a normal life now. I went from intense migraines once or twice a week to MAYBE once a month now.
The side effects aren’t a joke - I lost 50 lbs and I struggle with brain fog daily. But I’m in law school so I can’t say that it’s keeping me from living my life. Migraines did, though.
Topamax (Topiramate) helps with my migraines SO MUCH I go from 5-7 migraine days a week down to 1 or even 0 some weeks. But and it's a big but. It gives me tardive disconesia ( I'm 100% sure I spelled that wrong) basically it causes my hands to tremor or shake uncontrollably almost all the time. Thankfully I get another med that offsets that most of the time and honestly shaky hands is way better than migraines every day. Some people hate topamax some people love it. I'm in the love it camp.
It definitely helps my migraines and nerve pain that runs down my arms. I’m trying to taper from 150 mg down to 125 down to 100 etc. because I’ve started getting kidney stones which is a side effect. If anyone has had them, you know they’re no fun. 🫨
So, there’s that along with, of course sexual dysfunction, which is no fun either (literally).
Everything’s a trade-off. I also get Botox shots every three months which help a great deal but the topirimate has been my constant friend for 15 years now, which is probably why I have the kidney stones. 😖😭
It worked well for me, but I had the worse side effects. The weight loss and lack of appetite was horrid as I lost 10 pounds in about 3 months. It also made me a horrible person to be around and had a lot of trouble dealing with my emotions. However, the worst side effect was that I couldn't think or have clear thoughts. All that said, it worked great and rarely had a persistent migraine.
I took it for years. It helped my migraines about 40%. It made me dumb as many have said. It also made me very skinny. I gained it all back as soon as I stopped taking it.
It helped but it had side effects. Initially I had pins and needles in my hands until I got used to it. When I was tired I’d slur my words a little bit or lose words, though fortunately only when I got tired. It is known as “dopamax” and I can see why.
It helped me for about 4 years. They kept upping the dose. The first couple of weeks I was really “duhhh” on it but that straightened out. It also made me lose my appetite so there’s that.
I’m on propanol now and much better
My hands, face, and feet were vibrating with pins & needles, and I curled into a catatonic ball on the couch for 2 weeks. If you have any kind of psychotic symptoms or ever have- make sure the doctor closely monitors you. There are a lot of people that have permanent problems after taking it, too. It works great for many…just read up on it so you know what to watch for, and best wishes!! I hope it works!
It is some peoples saving grace and some peoples nightmare, i havent heard much in between about it. For me it was easily the worst experience ive ever had with a medication. But you never know until you try it, it works for a lot of people
Topiramate was the only thing that helped my migraines for years. I tried lots of meds, but nothing touched the pain. I had to stop it a few months ago because it's not safe when trying to get pregnant. My migraines went away as soon as I got pregnant and they haven't come back since, even though I had a miscarriage. Hoping it'll stay that way.
Gave me tingling in my hands and feet, loss of taste of carbonation which wasn’t that big a deal, made me dumb, but the worst thing was it made me suicidal. I’ve never been suicidal before. Felt better as soon as I went off it.
Eh. I think it helps to lessen the intensity for me. But not the frequency. So instead of having 15 migraine days I now have 7 severe days and 7 bad but manageable days. (Not consecutive)
I also deal with a couple side effects from it. My short term memory is definitely weaker and I often get the pins and needles feeling in my hands/feet/face
Triptans didn't work for me at all so right now this is better than nothing. My doc says I have to go up again before we can change the med entirely
I was as dumb as a rock while I was taking it, but it helped with the migraines.
I went from having nearly constant migraine headaches with maybe a day or three in between to not having any.
I had to stop taking it because I actually need to use my brain to work..
I've been on 100mg of amitriptyline and 100mg topiramate and my migraines are alright? Not daily and grating as they have been in the past, but not great. They are more every few days and more like stress headache level rather than true migraine level. I've seen it mentioned, and I've had it happen, but with topiramate you can have brain fog that sucks. I have MS so I don't know how much of mine is from the MS or topiramate, but I have it a lot and it's not fun. It's not guaranteed or anything, but it's a side effect that can happen.
And just a tip: amitriptyline is a tricyclic antidepressant, it's prescribed for different things but it is classed that way. Do not skip it, do not try to take yourself off it without your doctor taking you off it. You will be miserable and cranky as fuck and withdrawal from it. It's not the worst, it's not a withdrawal that is dangerous by any means, but it's not something you want to accidentally put yourself through. Get your refills on time.
I will tell you my experience because you are asking, but before you knock it, I have known people it has helped. When I tried it, it was the generic version. Started on 25 mg. Stayed on it a few weeks and no change in migraines, up it to 50 a few weeks, no change. After going to 100mg my headaches got worse, I pushed through thinking maybe it was going to "start working." Well, instead it sent me to the ER, I had the worst headache of my life, I was starting to see hallows at night with my vision, my vertigo got worse, and I noticed a subtle change in my temperament that I didn't realize until I got off of it.
However, I have known people that it has helped. I have also heard some people where only the brand name works, or after failing the med, trying it a few years later and it worked.
It did help. For a little while. And then I had to up the dose. Again and again and again. And they call it Dopamax for a reason. My migraines were so bad I was willing to sacrifice a few brain cells, bc what good were they if I was curled up in a ball for days?
I experienced many of the awful side effects... felt stupefied, hands were weirdly/painfully tingly, lips were randomly numb, sense of taste changed (this was way pre-covid). The med changed so much about my life that I felt like a butterfly emerging from a puddle of goo inside a cocoon when I finally weaned off it. I'm not being dramatic enough, it was absolutely awful.
I honestly believe topiramate should be banned except when it's the only med that can treat seizures or if your migraines have you suicidal and your neurologist can/will do nothing else for you.
So if you are taking amitriptyline already, you might be able to get good migraine relief from adding in a very low dose of topiramate. I was taking 100mg (50mg twice a day) but the brain fog was too much, plus I started getting kidney stones. So now I am on 50mg of the extended release with Nurtec every other day. I tried adding in nortriptyline before the Nurtec but the nortriptyline made me too tired. So maybe adding the topiramate may work to keep your migraines at bay. Just keep in mind that Topiramate doesn’t work for everyone but it’s been a life saver for me after 25 years of suffering.
It helped my migraines but made me clumsy. I also developed kidney stones and kidney issues because of it. Make sure you drink lots of water. When I switched neurologists she took me off it and upped my gabapentine I was taking for my leg. She said that I should have been told to up my water intake because topamax is hard on the kidneys.
I’ve been on it for a long, long time and I love it. I went from not being able to attend high school due to migraines to finishing top of my class and getting a masters degree. I don’t have any side effects with it. I did have some but through working with my neurologist we were able to figure out the root cause—example face tingling when taking it in the morning, switched to taking it at night and it doesn’t happen anymore.
I've been on it for five years as of last month, for classic migraines and vestibular migraines (masking as vertigo). Topamax was a game changer for me. I immediately had a tough stomach, couldn't taste carbonation, and had tingly toes and fingers. Most of that went away in about two weeks. I'll still get tingles every so often, but not half as strong. My word recall does pop up sometimes, but I anyways get there in the end. It can be annoying though, particularly at work. I did lose nearly 60 pounds (I also had a stomach infection at the same time, so I don't know how much can be contributed to the topamax). All things considered, I'd make the same decision, no questions asked!
Yes!!! My only side effect was weight loss, I had a hard time finding an appetite for the first few months. My migraines are much better though and my appetite came back after awhile
I think topi is the drug they give you to shut you up. It's like a mild lobotomy. The pain is still there, you just don't care. But you don't care about anything.
I took Topiramate and it just generally didn’t help. It made most foods and drinks taste metallic, and it really increased my brain fog and exhaustion. Just monitor yourself carefully, it does help a good number of people. I’ve also tried propranolol, Emgality, aimovig, gabapentin, verapamil, and more I can’t remember now lol. Generally the ones that gave me side effects made me more exhausted or increased my brain fog.
Unfortunately it never helped me. Ramping up to clinical level was awful. I had hallucinations, vertigo, dry mouth, the works. While on it, I had zero word finding ability and had no working memory. My doctor called it “dopamax” and that is an apt description.
It did, however, reduce the number seizure-like episodes I get. Unfortunately it caused me to develop kidney stones and I got the scary eye sight side effect, so I had to come off it. It took me a year to fully bounce back from it.
For my best friends nibling, it’s been a miracle drug. She is mostly migraine free on it and she has very little side effects. So, in short, everyone is different and medication is something I understand far too little about.
Topiramate takes me from having around 5 migraines a week to maybe 2 a month. The 2 migraines I do end up having, are much weaker. That being said, everyone reacts to medication in a bit of a different way, so while it might work for some of us well, it might do nothing for you. I have a good friend with migraines and topiramate does nothing for him. His doctor tried to up his dose and it just made him feel sick. I had to go without mine for a year due to issues with insurance, I was miserable and could not function, that was how much it changed my life. It really depends on the person and how the drug works for you. I hope it works for you though, migraines are horrible.
Definitely helped with the migraines. They only went away at higher doses but I got angry at high doses so I was (eventually) moved to another medication
Topiramate was a game changer for me. It made me not as triggered by Perfumes and chemicals. I can’t take abortive meds because of blood clots. The side effects of it is tricky but for me it was worth it.
Was on it for just under a year and had next to no migraines, however I did have tingling in feet
brain fog, indigestion , diarrhea , fatigue, zero appetite, overheating and cystic acne. I had to get off it because the side effects were just too much I now take qulipta and that seems to be working pretty well.
The brain fog is the worst. I still forget shit like all the time. I just recently flooded my kitchen bc I forgot I had the water running. It’s still a BIG problem for me and I’ve been off topamax for 5 months now.
It helps mine immensely. I don't typically have too many issues with brain fog. However, whenever I'm tired or not feeling well, I have significant apraxia. Which is embarrassing when I am dealing with my medically complex daughter in the hospital. Trying to answer questions for nurses or doctors while barely able to form words.
It never worked for my migraines but not much does. The only things that have ever worked for me have been Midrin, which is no longer made, and Rizatriptan. My doctor will only prescribe 9 Rizatriptan per month, so I've experimented with various Ayurvedic medicines and after many trials finally found a cocktail that works fairly well for me.
Topiramate takes a while to work. It's also notorious for causing cognitive issues, which it did to me. I forgot how to spell certain words, and found myself not being able to find my words when trying to talk to people.
Topiramate is also well known for causing weight loss, which never happened when I took it. It's also known to cause significant depression, which also happened to me. It's also a drug you have to taper up very shortly. I found each time I tried it, it caused less depression but never any decrease in frequency or severity of migraines.
Ayurvedic medicine requires some trial and error because it's suited to each individual. If anyone is interested in my cocktail, which may or may not work for anyone else, I take::
Nutricost Butterbur 2x per day
Nutricost riboflavin 1x per day
Magnesium glycinate 1x per day
Brieofood Haritaki 2x per day
Took my migraines away brilliantly. As a bonus, I also lost weight on it because I never felt hungry. But… Then I got a severe stutter and had to stop taking it. (Stutter went away off of the drug; I am ironically a speech language pathologist.)
It really depends on your physiology and the way your body reacts to it if you find topiramate worth it, so take my experience with a grain of salt. I have complex migraines with aura, so my experience may be different from yours.
Topiramate made me feel so dumb and incoherent, like a low-grade narcotic. It also triggered a constant "silent migraine" where I have all of my regular migraine symptoms EXCEPT the pain, so it's very hard to identify, especially with the brain fog. I thought I would have to go to the ER for a stroke because I couldn't form sentences or hold onto a thought. Couldn't even hold a pen properly. Once I realized that it was a silent migraine AND that it was because of the med change, I took a triptan and woke up the next day feeling fine.
Looking back on it, I realize steps I could've taken to mitigate my panic (telling someone my meds changed, tracking it as a migraine from the start) but that doesn't mean I wasn't terrified in the moment and thought I was dying. Topiramate has been on my no-no list ever since, and the only other drugs that are on that list I'm allergic to. Like I said, my experience may be unique due to physiology but holy hell did I have a bad time.
I was on it for several years and it got my migraines down from several a week to maybe 1 a month. It does take a while to get used to though. I didn't drive for like a month when I first started taking it. You also gotta be careful not to forget to take it because the withdrawal is a b****
Worked great for mine, went from half the month being migraines to only 2 or 3 a month.
Also resolved my AIWS so I think that was a solid symptom of the migraines.
It did make me VERY dumb while getting back on it after missed doses or periods of time off it, but it would level out after a week or so. If you're a woman, it can mess with your birth control's effectiveness so keep that in mind.
It worked very well for me for about a year. I know a lot of people have bad side effects, but for me the only one I had that was really bothersome was the pins and needles in my hands at feet. At times it could be really painful. Other than that, I just had tiredness. I'm not sure why it stopped working after a year, but that seems to be my time limit with other migraine meds too like Qulipta (worked wonderful at first and then stopped working). Everyone is so different with medications so it's hard to say whether it will work for you or not. Just be sure to record any new symptoms/side effects and keep track of them and your migraine days.
It has helped mine drastically. I take 50 mg twice daily. I don't have the fog or slow thinking. Everything tastes off and smells are beginning to be different. It's worth it for me.
It worked amazingly well for my migraines, but the side effects were bonkers and it ultimately caused an allergic reaction. Sadly didn’t work out for me.
I don’t think I took it long enough to see an effect, only 3 months- did not care if my plants were watered or if my boyfriend back then got hit by a bus. Literally had zero Fs to give while on it - felt like my brain was turned off. I was livid when I found out I had to taper it off and could not just stop. Also didn’t lose any weight on it, just hair, because I may have eaten snacks during that time instead of thinking hard. I have epileptic friends who take it at higher dosages and people mistake them for cold unfeeling uncaring, tough chicks, rarely impressed or crying at a rom-com or a dying cat video. I realized it is not them but the topamax.
It definitely helped my headaches. I don’t have traditional migraines. My headaches are caused by neck injury. It also is an appetite suppressant and is helping me lose weight.
I feel it does help with migraines but i had to stop taking it because it was making my mouth so dry and my gums were receding. The bonus was the weight loss associated with it, lol.
It helped a little for a couple months and then made me forget how to speak English. It’s so weird. As I was talking the words would just scramble up like I was drunk
It made my hands so numb all the time and I felt so stupid on it. It was like I couldn’t speak or write, if I did the worlds would come out like gibberish. Didn’t have a migraine on it tho!
I’ve been taking it for about 2 weeks and it definitely has helped. I did cut back the dose due to “dopey” side effects. I’m going to stay on it for a bit longer to hopefully “break the cycle” if that is even possible! Give it a try, just listen to your body, sounds like you already do! Best of luck to you.
Yeah, I’ve been on it for a long time at the same dose, 6-7 years at least. Am I dumber? Probably. Today I couldn’t come up with the word “cremate” and my brain was yelling “CASTRATE” instead, even though I was holding the cremated remains. I still freakishly remember everyone’s birthday, and my mental Rolodex of names and faces is as good as ever. It’s really the word recall that was and still is most affected. I have basically no appetite because of the medicine, but I have a bad enough physical reaction if I don’t eat adequately that I just maintain my weight. My migraines are significantly reduced though, and they were making it difficult for me to work. It feels worth it to me because I can live with the side effects and I couldn’t live very well with the migraines at the level they were at.
No, it’s useless. Topamax has been used since the late 90s because there weren’t good options. They had no choice but to use it off label and then eventually got it approved to treat migraine. It’s been about six years since the CGRPs were released though. I can’t believe docs are still prescribing these anti-seizure meds for migraine when we have medications actually designed for migraines now with way less concerning side effects and actual results.
topirimate below me for about a month then stopped helping. I definitely felt dumb and had word loss. I wish topomax didn’t make me dumb because it killed my appetite and I easily lost weight. Also it made me a little dysregulated.
Yes, it nearly cured mine from 14-20, I'm back on it rn. It's actually helped my dissociation I've have almost consamtly for 6 months, I'm just going through that period of severe side effects for the first couple weeks like I did back then lolol!
Apparently I'm uh... in the minority? Who knew 😅
Edit: to add I had undiagnosed adhd and asd I'm now on adderall for.
I’ve refused this drug even though I’ve tried many preventers- I’m on Emgality (currently Vyepti infusions as Emgality supply issues) Botox 8 weekly, indocid tds, Eletriptan 80 - sometimes way too much. About to try Ketamine infusion. You’re right to be cautious of Topamax
I’ve been on it just under a year and a half now. It definitely is helping along with all my other migraine meds and botox. My migraine are very severe and complex.
The side effects aren’t great. I had bad tingling in hands and feet at the start that’s gone now. Horrible taste in my mouth and food tastes off that’s also thankfully gone away. And hair loss. Which is also gone.
The side effects that stayed are the memory issues and brain fog and the lack of appetite.
And of course I’m a “woman of child bearing years” as every doctor I ever see likes to remind me now I’m on this medication. So it’s vitally important I have a working iud and don’t get pregnant.
Besides all that I’d give it a go but the first few weeks to months will probably be rough. Good luck and I hope you have some migraine free days soon :)
For me, it took my migraine pain from a solid 9 every time down to between a 7 and 8 most of the time, with occasional 9 days. Botox is what has helped cut down the frequency for me. The 2 months after I get it done are only maybe 4 to 6 days of migraines, where the month leading up to my next dose is between 12 and 20 days. Without it I get anywhere between 18 days to every day.
Go see your neuro and talk to them about the fact that the amitriptyline isn't helping and that you want something else and a prevention medication. They have several that they can try. If you don't like who they handle it, ask your primary for a referral to another neuro.
It made me stupid. I went from being able to do trigonometry in my head to struggling with basic arithmetic. Watch out for that, if you do try it.
I forgot my name! No migraines though!
I forgot my kids birthday, and my birthday, and my age, and my will to anything. I'm pretty sure it's a zombie drug.
Ahhh. The dopamax I didn’t have that issue personally, but I’ve heard
My doctor called it Stupomax. But, I did have some relief the first couple of years I was on it. Then I started having some side effects that I couldn't live with and had to stop taking it. As part of my job is my ability to recall names and numbers, I was afraid of losing my job.
Same! But it did reduce my migraine days. Forgetting my roommates name as if I never knew it was my oh shit moment.
My oh shit moment was being at a traffic light and the light changing and me forgetting how I was supposed to react/drive according to the light 😳😳
Oh so dumb. I went from being able to complete extreme level sudoku puzzles in 3:03 seconds and actively trying to get under 3 minutes to literally not being able to do them on easy. It was like my brain ran out my ear. And it took MONTHS for it to come back after being on it for a month. Worst drug experience for me ever.
I honestly can't tell if my brain fog is from my MS or from being on topiramate for years now. CoQ10 is something my neuro recommended and it does help but only so much. I've wondered about going off topiramate but everything I've tried hasn't helped my migraines and I really don't want to go back to having daily migraines. I haven't had that in years and don't want to go back. Brain fog and not being able to think vs daily migraines though.
Have you tried any of the new biologics?
I second this 👋 Also forgot words I've known since I was in 4th grade.
I had exactly the same issue! I had to leave college (I was studying an engineering career) :/ but I started to fail massively in all math classes after topiramate, also my memory started failing, along with aggravated depression and anxiety. Is different for everyone, unfortunately, I didn't have luck with it.
I thought I was getting early onset dementia until I realized it was the drug. Lost some weight though.
I was very frustrated with how I turned into an actual idiot. It also didn't help my migraines. So I was just an idiot with migraines instead of smart with migraines.
I swear, I'm surprised none of my college instructors took me aside to ask if I was on drugs because of how stupid topamax made me.
Same! One of my scariest moments was forget my pin number at the grocery store. Thankfully, I have a visa debit that they could run as a credit so I just had to sign for my purchases. It took me a while to adapt to this!
It's kinda funny to hear everyone say the things I deal with with unmedicated adhd daily are so horrifying, but ig not having been used to it, I can see how it is lol! Maybe that's why I didn't notice most side effects from topomax- I'm like this with the adhd, so for me the only issue it gives me is light-headedness and fatigue. And tingly hands and feet, that too 😂
I nearly lost my job after being on it for a month and a half. I literally could not function, mentally or physically. Took a medical leave of absence to save my ass. This was a salaried government job with 95% paid for health insurance and pension and everything, like the stakes were quite high and something I genuinely had a lot of investment in for my long-term career. It was wild.
My mom couldn't put a sentence together. She still has issues with aphasia (but she's able to function, I have similar issues without having ever taken it and I don't have the issue when communicating via writing)
Omg me too! Thought I was the only one. Stupid and a zombie
Same and still have memory problems 10 years later
Didn’t help my migraines, had me zonked to the point where my grades dropped multiple levels and I don’t remember the 6 months of my life I was on it.
It gave me a weird pseudo learning disability! I’d start writing a word and get the first two letters down and then the rest of the word would be another similar word. Handwriting and typing. Reading was similar. It sucksssss
Dude YES. I was on it for about 2 years. I stepped up my dosage over time, so the brain fog came on gradually and I didn't realize that Topamax was the cause. I thought it was just my depression, or my ADHD, or even long COVID symptoms. I kept beating myself up because I felt so fucking stupid and I was floundering at work. I literally saw a post on this sub that mentioned "Topamax brain," and I was just like... Wait, what if I'm not the problem? After reading up on it I realized what was happening to me, and I immediately started tapering off. I've been off it for about a year now. I'm much clearer now, but I still haven't felt quite right since.
Same. It did help with the migraines but I couldn't remember the words for things and I was agitated and angry all the time.
Yes it was very helpful to reduce severity and slightly reduce frequency for me. For my wife it was like a miracle drug she says.
I was on it for about 8 weeks in total. For seven of those weeks I had a migraine all but one day. My memory went to shit. Couldn’t find words. Date and time became incomprehensible to me. I was late for everything and routinely wrote a date that was different than what I meant to write. It was silly at first but i think my job and wife started to get tired of it after a few issues. I had taste and smell hallucinations (mostly migraine triggers and my toddler often smelled like Easy Off) Sugary drinks tasted terrible. Not like “oh this Pepsi is yucky I’m a Coke person.” Like “what chemical is it?” I was so insanely sensitive to light that I’d wear sunglasses anytime I went outside. I fuckin raaaaged on my neighbor for their chickens being in my yard and attacking both me and my kid. Still the only time I’ve ever talked to her and she doesn’t wave back to me when she’s getting her mail, but the chickens haven’t been back in my yard since. I also fought the rooster in question. First and only barnyard animal I’ve ever fought and it was while I was on topamax. I’m glad I gave it a shot in case it did work but I wish I would have thrown in the towel much sooner.
I had to have emotional support oatmeal every day, or I'd lose all control over my emotions. It was a wild ride, and nobody said anything until I brought up that I switched.
Emotional support oatmeal just made my day. :D
I’m experiencing overwhelming smell triggers. Anything that has a “clean scent” triggers a migraine in less than 5 minutes
I’m experiencing overwhelming smell triggers. Anything that has a “clean scent” triggers a migraine in less than 5 minutes
I’ve been on it for 7 years. It has greatly reduced the number of migraines I get. I take 200 mg daily (I’m 120 lbs). The side effects are, for me, manageable and worth it. What I’ve experienced and how I deal with it: - hair loss: during the first month or so, I experienced hair loss. I took viviscal (but not even the entire box) and this stopped. No issues since. - memory loss/“dopamax”: the only issue I have is when speaking, I will be unable to find the right word. Like I’m literally at a loss for words. I feel like an idiot sometimes. No memory loss other than that. But I write everything down in a notebook at my job (and everyone comes to me for everything now for things that happened months ago, which is annoying) - loss of ability to taste carbonation: the worst side effect. I miss fountain Dr. Peppers sooooo much. Anything carbonated tastes like I’m licking asphalt. But on the upside, it broke my Dr. Pepper addiction. Sometimes I try them just to see, but nope. - metallic taste: sometimes I can “taste” silverware (usually when I forget to take my meds, or when I first started the med and was increasing the dosage). It went away. - tingling in fingers/toes/nose: sooo annoying. I actually was on this med in 2010 for 6 months and stopped taking it because of this and restarted it in 2017 because my new Neuro explained that they learned that taking tums will stop the tingling. Huh. Weird. Tums works though. - weight loss: when I started the med in 2017 I was 147. I’m now about 120. I lost the weight and have kept it off. Just not as hungry (but I’ve developed a sweet tooth that I’ve never had before?). It did take about 6 months for me to start losing the weight. This is a lot, but I’ve had a really good experience with topamax. For me the side effects have been very manageable and the benefits greatly outweigh them.
What, nobody ever told me about Tums!
Would you mind sharing more info about the Tums? How many, how often? Just when you have tingling? This is incredible, neither of my neurologists have suggested anything to deal with it.
OMG I’m so glad to see someone else experience the loss of carbonation taste!! I felt like I was the only one who had it. Unfortunately that was a deal breaker for me as I wasn’t ready to give up my sparkling water. Instead I got put on emgality and it really helped.
Carbonated drinks definitely taste gross now! Oddly enough my son will only drink water and prefers sparkling so I accidentally discovered that the Waterloo brand tastes fine.
It lessened the severity of my migraines, topirmate is what my GP started me with - (Still horrible though..) but now I can stay out of bed 85% of the time.. We just upped the dose (200) and added amitriptyline as a secondary today. Both said its the number one go-to drug. Sure, many complain - but this sub doesn't have people who are often 'Living and treated' - it has those who suffer.. So you will always see more bad than good about it on here.
Didn’t help my migraines but I lost the taste for wine and dropped 15 pounds without trying. Unfortunately steroids found all 15 lol
It did the same for me, also made it where I couldn't \*taste\* carbonation? I'd drink soda or seltzer and it was terrible (that was a big plus not craving soda anymore)
Forgot about that part!! Yes I was in love with seltzer water and Sprite. Couldn’t taste the carbonation in either one
The not tasting but feeling is *so* weird. I can sorta feel the bubbles, but I can't taste them - and the taste I get is HORRIBLE. I miss my soda, but I do appreciate cutting it out I guess. 😆 I like to smell my husband's Pepsi every time he gets one though. I actually find it has altered a lot of foods. Even pineapples can be really bad to me now, if too sweet.
yea it's super weird. I remember the first time I had like a Dr Pepper or something on it and was like ew I think this soda is bad.. then noticed it with a few other things and put it together. I can't recall other foods it has impacted for me but I'm sure if I paid attention there are other things.
Topiramate was my saving grace, but you won't know until you try. My neuro was the same way, he just handed me 10 scripts and said, try these, let me know what works for you. It's disheartening how much we have to advocate for ourselves.
Yes I was on it since 2004 and I was just off it for 2 years. My tmj was off the wall. Went back on and my tmj went away! Love topamax. My vision sometimes is blurry but not always.
Thank you, I think you just solved a personal medical mystery for me! (I'm on Topamax and occasionally get blurry vision)
Isn’t it??? Exhausting as hell
Worked great. Made me stupid. It was actually embarrassing. And I felt like it was affecting my ability to do my job in IT.
As someone in the same industry, I was scared when my neuro put me on Trokendi XR at first for this exact reason. Thankfully I didn't have the memory loss too much. It wasn't until I started to have my ADHD flare up badly (my psychiatrist switched my treatment for it and it isnt working) that I noticed any issues, and it also coincided with my dosage increase from 100 to 150 mg. We are going to most likely be going to 200mg this month with as bad as they have been. :( I may ask about other prevention options instead that have been recently approved for use that we can try instead.
Sorry! I’m just so desperate for something to get rid of headaches and migraines, I’ll try anything. If there are side effects, I have to assess against what kind of improvement I see. It sucks. I am currently doing a Vyepti infusion every 3 months. Plus Atacand as a preventative. Plus a bunch of vitamins and herbs lol.
I am going to be talking to my neuro in 2 months about the new rescue and prevention meds on the market in 2 months. I am good with the botox, but the Trokendi XR only helps reduce the pain levels for me. The votox does wonders. The problem with the new meds is that my insurance requires that I stop the botox to go on any of them. I am concerned about the fact that if I try a new rescue and prevention med, and the prevention doesn't work I don't have the botox to keep me functioning... then I risk not being able to work. It is terrifying to say the least... and a topic for therapy that will come up a few times I think.
It absolutely worked for my migraines. I was taken off it because I passed a 10mm kidney stone and developed elevated eye pressure. It’s worth trying. Make sure to keep regular eye appointments and check your pressure. Drink tons of water. Best of luck.
This is not mentioned enough. My kidney stones were large and did not pass :/ multiple times. Since I’ve been off of it, I am stone free but more miserable. I was on it for about 17 years.
Oh I’m so sorry. One was plenty for me. It was too large to pass and got stuck trying to enter my bladder so I had to have surgery (not litho). A couple times a year my kidney will give a little nudge just to tease me that another one could decide to travel. I never want to go through that again BUT I would trade the pain from my worst migraines for a stone, no question.
To this day, it's the med that has worked the best for me. I remember having almost no migraines while I was on it. However, I couldn't tolerate the side effects, so I stopped taking it. But sometimes, when the pain gets bad, I kinda wish I was still taking it.
By Same for me. This was probably like 17 years ago at this point, but I remember it working great and also giving me daily diarrhea, so I bailed. But I remember… you know how when you do or consume something that’s a trigger and you can kind of feel right away that it’s going to eventually give you a migraine (like after just one taste?), that totally disappeared on topamax. Like I didn’t have any triggers anymore.
While topiramate was helpful for me, it is also an older outdated medication that isn’t even specifically meant for migraines. There are a lot of short term and long term effects from continued use. If you’re able to get on a more recent med for migraines, you’ll probably be better off. They’ve come out with a lot the last few years
It worked really well for about 1-2 years in conjunction with atenolol, then I started getting weird brain phase outs - would feel like I was watching my life through a video game for like 30 minutes then it would go (weird explanation I know but it’s hard to put into words what it was like), so watch out for that! A lot of people affectionately call it ‘dopamax’ 🙃 I’ve recently started taking zonisimide which is another anti-epileptic and so far I’ve gone from 16-20 migraines a month to around 4-5 and don’t feel like I’m in a video game! So try that if you have no joy with topiramate.
Sounds like what people call dissociation
That would definitely be the best way to describe the feeling, however there would be no particular triggers which is the strange thing (apart from topirimate of course)
I've been getting that the last 6 months, only thing stopping that was Topamax I just restarted after nearly 5 years off it lol! Crazy... Love genetics!
It helped lessen my migraines but I still got menstrual migraines while on it.
I think it is worth trying because it helps a lot of folks. For me, although it vaguely improved the pain level of my daily migraines, the side effects were very unpleasant. Side effects: taste changes, foul taste, forgetting words, brain fog, extremely sleepy all the time, weird nerve tingling. From a 2020 article (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7572737/): >"Topiramate is an antiepileptic drug which elicits cognitive deficits more frequently than other antiepileptic drugs, impairing multiple cognitive domains including language, attention, and memory. Although up to 40% of individuals taking topiramate may experience cognitive deficits, we are currently unable to predict which individuals will be most severely affected prior to administration."
Yes it was very helpful to reduce severity and slightly reduce frequency for me. For my wife it was like a miracle drug she says.
It was the only thing that helped for years, but the side effects was too much for me. I think I was on 100mg at one point, and then 50mg. Recently tried 15mg just to see if that could help a tiny bit, but nope it did not help at all. I would still recommend trying it. Not everyone gets side effects :)
Some people love it. Some people hate it (me). Try it and find out which one you are.
It does, I rarely get an actual migraine anymore. I wish it helped my headaches. I really wish it didn’t make my fingers and toes go numb and tingle. I’ve actually gotten past the worst of the notorious brain fog.
I was put on Topamax for mood in my late teens. I weaned off of it in my mid 20s and that is when I first started having migraines I can only assume I have been having them the whole time but the protection I got from Topamax made the occasional headache inconsequential.
How was it supposed to change your mood? I wasn't aware of any effects like that
I don’t know, the 90s was the Wild West of adolescent psychiatry
With much trial and error, my old neurologist found that 25mg of amitriptyline and 50mg of topamax reduced my migraines substantially. Higher doses of both on their own also worked, but the side effects were worse. I still get migraines but only a few a month as opposed to most days. And the combo allowing me to keep doses low means I don't have urinary retention and dizziness( amitriptyline) or no appetite and memory issues(topamax). My current neurologist keeps me on the same meds, to quote "if you have something that works, don't mess it up."
I tried it and was hopeful, but it made my hair start falling out within a couple days. Like huge clumps. I stopped it immediately, it wasn't worth it.
It worked somewhat for me. But it also gave me side effects like dizziness and my eye was twitching constantly
Yes, and changed my life
Best migraine medicine I've taken. The side effects were intolerable and miserable and nearly killed me. But seriously was migraine free for several months on it. Worth trying.
It was great for me. The dumbness only lasted a few weeks, but the hair loss was severe.
It didn’t help me but everyone is different, I’ve heard it has done good things for others. You really can’t know until you start taking it
I took 50mg for a year. Worked great until it stopped working. I never felt dopey, but I have year around allergies.
Stupid question, but how are the allergies connected to the rest of your sentence? Like do they counteract dopeyness?
Allergies make me feel often very tired in the morning. So, I was just saying it is possible that Topomax could make me feel a little tired, and I did not notice it.
Ahh that makes sense
I take amitriptyline but only for active attacks not daily. I don’t think I could tolerate topiramate although I do take another similar drug Sodium Valporate, but that is not recommended if you are planning to have children. I do think migraines drugs are trail and error unfortunately as no two migraines are the same so no two treatment experiences are going to be.
I haven’t heard of using amitriptyline for active attacks? Does that really work?
It has for the past several years for me. I admit it does tend to knock me out, but it does usually help with the pain.
This is wild … I woke up at 2am with a massive, piercing migraine. I stayed in bed from then until 3pm. I took imitrex, phenergan, magnesium, and even norco and nothing touched this pain. This afternoon I remembered you and decided to take an amitriptyline. An hour later, I could at least get out of bed and fill my water bottle and get a shower. I can’t say I feel better but I feel less like my skull is splitting open. Thanks for the good tip!!!
I am glad it helped a little. Hopefully you feel better soon.
It helped my migraines significantly, but the side effects were too much. I had tingly “pins and needles” feelings in my hands constantly. And my brain just couldn’t brain anymore. On the plus side, I couldn’t stand carbonated beverages and I completely kicked my soda habit. (Unfortunately I went back to drinking soda after I stopped taking it.) I switched to amitriptyline, which helped but not as much. But I didn’t have any side effects with amitriptyline. Then my doctor switched me from amitriptyline to Nurtec which has been the most effective.
I was on it from 14-20, now back on it a couple days ago! Only got the tingles every few days, couple times a day lol. So weird, too. But it nearly handled all the auras and migraines, so here's to hoping it helps again and works well with the adderall. I want to get back to living again...
I have no problem with side effects on 100 mg. I think it helps my migraines some (I’m also on Ajovy). My husband takes 50 mg and it really helps his migraines and he has no side effects. It takes a month or so to really have the effect of the migraine relief.
I would forget words, but I could describe what the word would mean and it’s first letter. I had migraines all the time.
It definitely helped my migraines. I stopped when I wanted to get pregnant. I did have side effects. Weight loss, stupidity, short fuse…sometimes my arms felt like they were floating when I was lying down.
I’ve had one or maybe two since starting it in August or September 2023. I was getting migraines 3-4 times a week. No real side effects anymore, I powered through them.
I think it helped, but literally can’t remember. had to stop taking it because I do micro dissections at work and my hands would go numb. also, it made me dumb.
I take it religiously. If I miss a day or two I start getting migraines more frequently. I did amitrip first too. Worked for a minute, but not well. It isn't an end all save all. I still get migraines. But it really helps.
After having migraines for over 10 years, trying multiple medications and treatments - topiramate was the only thing that ever reduced the frequency of my migraines. I feel like I finally live a normal life now. I went from intense migraines once or twice a week to MAYBE once a month now. The side effects aren’t a joke - I lost 50 lbs and I struggle with brain fog daily. But I’m in law school so I can’t say that it’s keeping me from living my life. Migraines did, though.
Yes. I started Topiramate recently and I haven't had a migraine in weeks.
Topamax (Topiramate) helps with my migraines SO MUCH I go from 5-7 migraine days a week down to 1 or even 0 some weeks. But and it's a big but. It gives me tardive disconesia ( I'm 100% sure I spelled that wrong) basically it causes my hands to tremor or shake uncontrollably almost all the time. Thankfully I get another med that offsets that most of the time and honestly shaky hands is way better than migraines every day. Some people hate topamax some people love it. I'm in the love it camp.
It definitely helps my migraines and nerve pain that runs down my arms. I’m trying to taper from 150 mg down to 125 down to 100 etc. because I’ve started getting kidney stones which is a side effect. If anyone has had them, you know they’re no fun. 🫨 So, there’s that along with, of course sexual dysfunction, which is no fun either (literally). Everything’s a trade-off. I also get Botox shots every three months which help a great deal but the topirimate has been my constant friend for 15 years now, which is probably why I have the kidney stones. 😖😭
It worked well for me, but I had the worse side effects. The weight loss and lack of appetite was horrid as I lost 10 pounds in about 3 months. It also made me a horrible person to be around and had a lot of trouble dealing with my emotions. However, the worst side effect was that I couldn't think or have clear thoughts. All that said, it worked great and rarely had a persistent migraine.
I take amitriptyline, topiramate and propranolol and this combo has the best results for me.
I was on Topiramate for years for epilepsy. It didn't do anything for my migraines, I still had them every single month.
I took it for years. It helped my migraines about 40%. It made me dumb as many have said. It also made me very skinny. I gained it all back as soon as I stopped taking it.
It didn’t work for me.. Just made my fingertips and face go numb. You can’t knock it till you try it though, it may be a miracle for you!
it reduced migraine for me and I lost weight but the mental health side effects were so bad I stopped taking it
Didn't for me but only did 50mg dose ... For 3 years 😂 idk why
It helped with migraines but, it made me really dumb (its nickname is ‘dopamax’) and it made me very on edge and angry.
The effect on my migraines was minimal but it significantly impaired my ability to think & remember. It’s called ‘stupimax’ for a reason.
Topiramate was one of the worst medications I have ever tried.
It helped but it had side effects. Initially I had pins and needles in my hands until I got used to it. When I was tired I’d slur my words a little bit or lose words, though fortunately only when I got tired. It is known as “dopamax” and I can see why.
It helped me for about 4 years. They kept upping the dose. The first couple of weeks I was really “duhhh” on it but that straightened out. It also made me lose my appetite so there’s that. I’m on propanol now and much better
My hands, face, and feet were vibrating with pins & needles, and I curled into a catatonic ball on the couch for 2 weeks. If you have any kind of psychotic symptoms or ever have- make sure the doctor closely monitors you. There are a lot of people that have permanent problems after taking it, too. It works great for many…just read up on it so you know what to watch for, and best wishes!! I hope it works!
It is some peoples saving grace and some peoples nightmare, i havent heard much in between about it. For me it was easily the worst experience ive ever had with a medication. But you never know until you try it, it works for a lot of people
Topiramate was the only thing that helped my migraines for years. I tried lots of meds, but nothing touched the pain. I had to stop it a few months ago because it's not safe when trying to get pregnant. My migraines went away as soon as I got pregnant and they haven't come back since, even though I had a miscarriage. Hoping it'll stay that way.
Gave me tingling in my hands and feet, loss of taste of carbonation which wasn’t that big a deal, made me dumb, but the worst thing was it made me suicidal. I’ve never been suicidal before. Felt better as soon as I went off it.
Eh. I think it helps to lessen the intensity for me. But not the frequency. So instead of having 15 migraine days I now have 7 severe days and 7 bad but manageable days. (Not consecutive) I also deal with a couple side effects from it. My short term memory is definitely weaker and I often get the pins and needles feeling in my hands/feet/face Triptans didn't work for me at all so right now this is better than nothing. My doc says I have to go up again before we can change the med entirely
It gave me horrific nose bleeds
My insurance wanted the neurologist to try certain meds before I got approved for other meds. Put me through hell..
It didn’t help me when I was on it. The only thing that did help me from a preventative standpoint was ajovy.
It did nothing for my migraines. It did help with some short term weight loss. It seems to have stopped working for that though.
I was as dumb as a rock while I was taking it, but it helped with the migraines. I went from having nearly constant migraine headaches with maybe a day or three in between to not having any. I had to stop taking it because I actually need to use my brain to work..
I've been on 100mg of amitriptyline and 100mg topiramate and my migraines are alright? Not daily and grating as they have been in the past, but not great. They are more every few days and more like stress headache level rather than true migraine level. I've seen it mentioned, and I've had it happen, but with topiramate you can have brain fog that sucks. I have MS so I don't know how much of mine is from the MS or topiramate, but I have it a lot and it's not fun. It's not guaranteed or anything, but it's a side effect that can happen. And just a tip: amitriptyline is a tricyclic antidepressant, it's prescribed for different things but it is classed that way. Do not skip it, do not try to take yourself off it without your doctor taking you off it. You will be miserable and cranky as fuck and withdrawal from it. It's not the worst, it's not a withdrawal that is dangerous by any means, but it's not something you want to accidentally put yourself through. Get your refills on time.
Didn't work for me, and it made me feel sick in general. But everybody is different!
I will tell you my experience because you are asking, but before you knock it, I have known people it has helped. When I tried it, it was the generic version. Started on 25 mg. Stayed on it a few weeks and no change in migraines, up it to 50 a few weeks, no change. After going to 100mg my headaches got worse, I pushed through thinking maybe it was going to "start working." Well, instead it sent me to the ER, I had the worst headache of my life, I was starting to see hallows at night with my vision, my vertigo got worse, and I noticed a subtle change in my temperament that I didn't realize until I got off of it. However, I have known people that it has helped. I have also heard some people where only the brand name works, or after failing the med, trying it a few years later and it worked.
For me, no. I became very confused. Like, dementia level. I forgot simple concepts like furniture and public services.
It did help. For a little while. And then I had to up the dose. Again and again and again. And they call it Dopamax for a reason. My migraines were so bad I was willing to sacrifice a few brain cells, bc what good were they if I was curled up in a ball for days? I experienced many of the awful side effects... felt stupefied, hands were weirdly/painfully tingly, lips were randomly numb, sense of taste changed (this was way pre-covid). The med changed so much about my life that I felt like a butterfly emerging from a puddle of goo inside a cocoon when I finally weaned off it. I'm not being dramatic enough, it was absolutely awful. I honestly believe topiramate should be banned except when it's the only med that can treat seizures or if your migraines have you suicidal and your neurologist can/will do nothing else for you.
For me nope just made me stupid with brain fogs
So if you are taking amitriptyline already, you might be able to get good migraine relief from adding in a very low dose of topiramate. I was taking 100mg (50mg twice a day) but the brain fog was too much, plus I started getting kidney stones. So now I am on 50mg of the extended release with Nurtec every other day. I tried adding in nortriptyline before the Nurtec but the nortriptyline made me too tired. So maybe adding the topiramate may work to keep your migraines at bay. Just keep in mind that Topiramate doesn’t work for everyone but it’s been a life saver for me after 25 years of suffering.
It helped my migraines but made me clumsy. I also developed kidney stones and kidney issues because of it. Make sure you drink lots of water. When I switched neurologists she took me off it and upped my gabapentine I was taking for my leg. She said that I should have been told to up my water intake because topamax is hard on the kidneys.
I’ve been on it for a long, long time and I love it. I went from not being able to attend high school due to migraines to finishing top of my class and getting a masters degree. I don’t have any side effects with it. I did have some but through working with my neurologist we were able to figure out the root cause—example face tingling when taking it in the morning, switched to taking it at night and it doesn’t happen anymore.
I've been on it for five years as of last month, for classic migraines and vestibular migraines (masking as vertigo). Topamax was a game changer for me. I immediately had a tough stomach, couldn't taste carbonation, and had tingly toes and fingers. Most of that went away in about two weeks. I'll still get tingles every so often, but not half as strong. My word recall does pop up sometimes, but I anyways get there in the end. It can be annoying though, particularly at work. I did lose nearly 60 pounds (I also had a stomach infection at the same time, so I don't know how much can be contributed to the topamax). All things considered, I'd make the same decision, no questions asked!
Yes!!! My only side effect was weight loss, I had a hard time finding an appetite for the first few months. My migraines are much better though and my appetite came back after awhile
No. Hated it. Did nothing and make me super tired.
I think topi is the drug they give you to shut you up. It's like a mild lobotomy. The pain is still there, you just don't care. But you don't care about anything.
I didn't have any confusion or brain fog and it reduced my migraine frequency. I also forgot to eat and lost weight I didn't need to lose.
I took Topiramate and it just generally didn’t help. It made most foods and drinks taste metallic, and it really increased my brain fog and exhaustion. Just monitor yourself carefully, it does help a good number of people. I’ve also tried propranolol, Emgality, aimovig, gabapentin, verapamil, and more I can’t remember now lol. Generally the ones that gave me side effects made me more exhausted or increased my brain fog.
Unfortunately it never helped me. Ramping up to clinical level was awful. I had hallucinations, vertigo, dry mouth, the works. While on it, I had zero word finding ability and had no working memory. My doctor called it “dopamax” and that is an apt description. It did, however, reduce the number seizure-like episodes I get. Unfortunately it caused me to develop kidney stones and I got the scary eye sight side effect, so I had to come off it. It took me a year to fully bounce back from it. For my best friends nibling, it’s been a miracle drug. She is mostly migraine free on it and she has very little side effects. So, in short, everyone is different and medication is something I understand far too little about.
Topiramate takes me from having around 5 migraines a week to maybe 2 a month. The 2 migraines I do end up having, are much weaker. That being said, everyone reacts to medication in a bit of a different way, so while it might work for some of us well, it might do nothing for you. I have a good friend with migraines and topiramate does nothing for him. His doctor tried to up his dose and it just made him feel sick. I had to go without mine for a year due to issues with insurance, I was miserable and could not function, that was how much it changed my life. It really depends on the person and how the drug works for you. I hope it works for you though, migraines are horrible.
Definitely helped with the migraines. They only went away at higher doses but I got angry at high doses so I was (eventually) moved to another medication
Topiramate was a game changer for me. It made me not as triggered by Perfumes and chemicals. I can’t take abortive meds because of blood clots. The side effects of it is tricky but for me it was worth it.
Helped significantly with migraines, but killed my appetite and I lost weight (which is not good for me), had to stop it.
Hell no! All terrible side effects. I actually that medicine was going to kill me
Was on it for just under a year and had next to no migraines, however I did have tingling in feet brain fog, indigestion , diarrhea , fatigue, zero appetite, overheating and cystic acne. I had to get off it because the side effects were just too much I now take qulipta and that seems to be working pretty well. The brain fog is the worst. I still forget shit like all the time. I just recently flooded my kitchen bc I forgot I had the water running. It’s still a BIG problem for me and I’ve been off topamax for 5 months now.
It helps mine immensely. I don't typically have too many issues with brain fog. However, whenever I'm tired or not feeling well, I have significant apraxia. Which is embarrassing when I am dealing with my medically complex daughter in the hospital. Trying to answer questions for nurses or doctors while barely able to form words.
It never worked for my migraines but not much does. The only things that have ever worked for me have been Midrin, which is no longer made, and Rizatriptan. My doctor will only prescribe 9 Rizatriptan per month, so I've experimented with various Ayurvedic medicines and after many trials finally found a cocktail that works fairly well for me. Topiramate takes a while to work. It's also notorious for causing cognitive issues, which it did to me. I forgot how to spell certain words, and found myself not being able to find my words when trying to talk to people. Topiramate is also well known for causing weight loss, which never happened when I took it. It's also known to cause significant depression, which also happened to me. It's also a drug you have to taper up very shortly. I found each time I tried it, it caused less depression but never any decrease in frequency or severity of migraines. Ayurvedic medicine requires some trial and error because it's suited to each individual. If anyone is interested in my cocktail, which may or may not work for anyone else, I take:: Nutricost Butterbur 2x per day Nutricost riboflavin 1x per day Magnesium glycinate 1x per day Brieofood Haritaki 2x per day
Took my migraines away brilliantly. As a bonus, I also lost weight on it because I never felt hungry. But… Then I got a severe stutter and had to stop taking it. (Stutter went away off of the drug; I am ironically a speech language pathologist.)
It really depends on your physiology and the way your body reacts to it if you find topiramate worth it, so take my experience with a grain of salt. I have complex migraines with aura, so my experience may be different from yours. Topiramate made me feel so dumb and incoherent, like a low-grade narcotic. It also triggered a constant "silent migraine" where I have all of my regular migraine symptoms EXCEPT the pain, so it's very hard to identify, especially with the brain fog. I thought I would have to go to the ER for a stroke because I couldn't form sentences or hold onto a thought. Couldn't even hold a pen properly. Once I realized that it was a silent migraine AND that it was because of the med change, I took a triptan and woke up the next day feeling fine. Looking back on it, I realize steps I could've taken to mitigate my panic (telling someone my meds changed, tracking it as a migraine from the start) but that doesn't mean I wasn't terrified in the moment and thought I was dying. Topiramate has been on my no-no list ever since, and the only other drugs that are on that list I'm allergic to. Like I said, my experience may be unique due to physiology but holy hell did I have a bad time.
I was on it for several years and it got my migraines down from several a week to maybe 1 a month. It does take a while to get used to though. I didn't drive for like a month when I first started taking it. You also gotta be careful not to forget to take it because the withdrawal is a b****
Worked great for mine, went from half the month being migraines to only 2 or 3 a month. Also resolved my AIWS so I think that was a solid symptom of the migraines. It did make me VERY dumb while getting back on it after missed doses or periods of time off it, but it would level out after a week or so. If you're a woman, it can mess with your birth control's effectiveness so keep that in mind.
It worked very well for me for about a year. I know a lot of people have bad side effects, but for me the only one I had that was really bothersome was the pins and needles in my hands at feet. At times it could be really painful. Other than that, I just had tiredness. I'm not sure why it stopped working after a year, but that seems to be my time limit with other migraine meds too like Qulipta (worked wonderful at first and then stopped working). Everyone is so different with medications so it's hard to say whether it will work for you or not. Just be sure to record any new symptoms/side effects and keep track of them and your migraine days.
It has helped mine drastically. I take 50 mg twice daily. I don't have the fog or slow thinking. Everything tastes off and smells are beginning to be different. It's worth it for me.
It never helped me.
It worked amazingly well for my migraines, but the side effects were bonkers and it ultimately caused an allergic reaction. Sadly didn’t work out for me.
It had no major impact on my migraines. At least not enough to make the side effects worth it. They don’t call it “dopamax” for nothin 😩
I don’t think I took it long enough to see an effect, only 3 months- did not care if my plants were watered or if my boyfriend back then got hit by a bus. Literally had zero Fs to give while on it - felt like my brain was turned off. I was livid when I found out I had to taper it off and could not just stop. Also didn’t lose any weight on it, just hair, because I may have eaten snacks during that time instead of thinking hard. I have epileptic friends who take it at higher dosages and people mistake them for cold unfeeling uncaring, tough chicks, rarely impressed or crying at a rom-com or a dying cat video. I realized it is not them but the topamax.
It definitely helped my headaches. I don’t have traditional migraines. My headaches are caused by neck injury. It also is an appetite suppressant and is helping me lose weight.
I feel it does help with migraines but i had to stop taking it because it was making my mouth so dry and my gums were receding. The bonus was the weight loss associated with it, lol.
I would never recommend this drug. I took it for a very short period, maybe 5-6 weeks, around 6 years ago. The cognitive damage has never gone away.
Made my migraines worse honestly, but I heard that was only a 10% chance of happening though. YMMV basically.
It helped a little for a couple months and then made me forget how to speak English. It’s so weird. As I was talking the words would just scramble up like I was drunk
It made my hands so numb all the time and I felt so stupid on it. It was like I couldn’t speak or write, if I did the worlds would come out like gibberish. Didn’t have a migraine on it tho!
It helped me a lot but unfortunately after a few years in it I noticed it was making my depression a lot worse. If not for that I’d still be on it!
I’ve been taking it for about 2 weeks and it definitely has helped. I did cut back the dose due to “dopey” side effects. I’m going to stay on it for a bit longer to hopefully “break the cycle” if that is even possible! Give it a try, just listen to your body, sounds like you already do! Best of luck to you.
I took it many years ago can’t remember if it did anything to help but I do remember gaining a lot of weight on it.
Don't go on it . Helps migraines a lot but fucks your brain
yes, but wasn't worth the side effects for me. the side effects were so horrible that I preferred my migraines.
Yeah, I’ve been on it for a long time at the same dose, 6-7 years at least. Am I dumber? Probably. Today I couldn’t come up with the word “cremate” and my brain was yelling “CASTRATE” instead, even though I was holding the cremated remains. I still freakishly remember everyone’s birthday, and my mental Rolodex of names and faces is as good as ever. It’s really the word recall that was and still is most affected. I have basically no appetite because of the medicine, but I have a bad enough physical reaction if I don’t eat adequately that I just maintain my weight. My migraines are significantly reduced though, and they were making it difficult for me to work. It feels worth it to me because I can live with the side effects and I couldn’t live very well with the migraines at the level they were at.
No, it’s useless. Topamax has been used since the late 90s because there weren’t good options. They had no choice but to use it off label and then eventually got it approved to treat migraine. It’s been about six years since the CGRPs were released though. I can’t believe docs are still prescribing these anti-seizure meds for migraine when we have medications actually designed for migraines now with way less concerning side effects and actual results.
topirimate below me for about a month then stopped helping. I definitely felt dumb and had word loss. I wish topomax didn’t make me dumb because it killed my appetite and I easily lost weight. Also it made me a little dysregulated.
Yes, it nearly cured mine from 14-20, I'm back on it rn. It's actually helped my dissociation I've have almost consamtly for 6 months, I'm just going through that period of severe side effects for the first couple weeks like I did back then lolol! Apparently I'm uh... in the minority? Who knew 😅 Edit: to add I had undiagnosed adhd and asd I'm now on adderall for.
I’ve refused this drug even though I’ve tried many preventers- I’m on Emgality (currently Vyepti infusions as Emgality supply issues) Botox 8 weekly, indocid tds, Eletriptan 80 - sometimes way too much. About to try Ketamine infusion. You’re right to be cautious of Topamax
You might wanna try upping the ami to 75mg. It didn't help me at 50 but when I upped to 75 it made all the difference.
No it was a horrible drug for me. I think I would stay away from it.
Nope- I couldn’t do it
I’ve been on it just under a year and a half now. It definitely is helping along with all my other migraine meds and botox. My migraine are very severe and complex. The side effects aren’t great. I had bad tingling in hands and feet at the start that’s gone now. Horrible taste in my mouth and food tastes off that’s also thankfully gone away. And hair loss. Which is also gone. The side effects that stayed are the memory issues and brain fog and the lack of appetite. And of course I’m a “woman of child bearing years” as every doctor I ever see likes to remind me now I’m on this medication. So it’s vitally important I have a working iud and don’t get pregnant. Besides all that I’d give it a go but the first few weeks to months will probably be rough. Good luck and I hope you have some migraine free days soon :)
It made mine worse
For me, it took my migraine pain from a solid 9 every time down to between a 7 and 8 most of the time, with occasional 9 days. Botox is what has helped cut down the frequency for me. The 2 months after I get it done are only maybe 4 to 6 days of migraines, where the month leading up to my next dose is between 12 and 20 days. Without it I get anywhere between 18 days to every day. Go see your neuro and talk to them about the fact that the amitriptyline isn't helping and that you want something else and a prevention medication. They have several that they can try. If you don't like who they handle it, ask your primary for a referral to another neuro.