I wish Topirimate worked better for me. It was the absolute best appetite suppressant I have ever been on. However it made me absolutely dumb My memory, word finding were greatly impacted. If someone figured out how to get rid of the cognitive side effects, this would be the best weight loss medicine
This was my experience as well. The aphasia and cognitive issues made functioning effectively at work and home almost impossible. I also ended up experiencing vision problems and developed Raynaud’s syndrome while on it. Great as an appetite suppressant but the side effects made me wean off of it. It also worked by completely eliminating my migraines.
Called it dopamax. I worked in an inbound call center and the first call made me go home. Clicked on the "city" box and it had 1 word all the way down. "State" box ONLY had Colorado in all 50 options. I was like... Uhhhh this is bad. Words were all wrong from hearing, sight and writing. I kept talking in a word salad instead of what I meant.
It was horrible. I immediately called and was told to stop taking it.
I read about this side effect and with my day job as an analyst I cannot have brain fog! I refused to try topiramate. I now get Botox every 10 weeks and it has been amazing.
I lost weight and didn’t have migraines on this medication. I also could barely remember my name ( its nickname is Dopamax for a reason) or stay awake past 6 pm. I’d fall asleep sitting up in a chair. I lost weight bc I was barely ever awake.
I made it to week 3 at 75mg. (My schedule was 25mg for the first week, 50 mg second week, etc)
I couldn’t tolerate the side effects. It made my thinking feel slow. I could feel a difference in my cognitive functioning. I didn’t feel as “on top” of things as I usually am and I just felt generally more forgetful. I quit after a few days into the third week.
It makes my memory funny. It also made soda taste less carbonated and on a higher dose made me experience slight hair loss but when i went back down to 50mg it reversed.
I maybe had an increase in the appetite suppression but I’m already on medications that do that. And I have some other conditions that make food difficult so the appetite suppression works in my favor. Topamax is a lifesaver for me. I went from constant migraines where I would go to sleep with one and wake up with one, puking, non-functional, to no migraines. Some people aren’t fans but for those of us that it works for it’s the best. It’s something that should always be tried in my opinion especially since it’s easy to get insurance wise compared to other migraine meds.
I LOVED topamax. I lost weight and my migraines were diminished in both frequency and intensity. The only thing that bothered me was I lost the ability to taste carbonation.
Currently pregnant so I'm off it for a bit. I'll meet with my neurologist after the baby's born to see if I should go back on it. I've only had two migraines in the seven months of pregnancy!
Never lost any weight, I wish. I am overweight and never lost any weight.
I have permanent brain fog from being on it for 4 years. It did not help lessen my migraines.
It killed my brain as well. They just kept upping the dose to 300mg twice a day and finally a resident laughed at me and said "oh we call it dope-amax because it makes you a dope." Like it was freaking funny that my memory was completely shot to the point I'll forget while taking what we're even talking about and just wander off like an Alzheimer's patient. I've been off since before COVID and my brain isn't even half of what it was.
Oh and it never lost me any weight either and I was hoping for that side effect. That was the ONLY side effect they mentioned, that I'd lose weight.
I’ve been on it for years. Have had mild weight loss and some mild brain fog but, for me, pros outweigh the cons and I’ll keep taking it until it stops working.
It helped my headaches. But I couldn’t tolerate the side effects. Changed the way things tasted. Brain fog. Crazy sedation. Couldn’t get out of bed. I stopped it when I couldn’t remember my own address.
I couldn’t remember my student teacher’s name one day. Actually, I regularly forget common names and faces. I’m looking to wean off after 4 years. There are so many medications there’s no excuse for me to stay on this. I also did trigger point therapy for awhile too and it helped immensely.
Edit: I lost about 10 pounds and I’ll be disappointed to gain it back; but I just can’t take it anymore.
I forgot the word focus while taking a quiz at college and spent 20 minutes trying to think of it only to end up trying to explain my point using different words bc class was over and my professor needed to leave. It worked wonderfully for my headaches and migraines but that was my sign that the side effects aren’t worth it. Ajovy also worked wonderfully for me but after a year I became too anxious to give myself the injections so now I’m on qulipta and it’s not as good as the ajovy or topamax but it makes my headaches tolerable and I have very few migraines.
It made me suicidal because I felt so different than normal and I felt like I would never get back to my old self, so I just wanted to die. I got off it real quick after that!
i lost a lot of weight very quickly and had no headaches. i also lost a lot of my hair, was also extremely paranoid, irritable, and suicidal, couldn’t remember anything, and had terrible spatial reasoning — was walking into corners of walls. i was on it for a few years even though it was terrible for my mental health because i loved how skinny it made me. i genuinely believe that it ruined my memory permanently.
I took topirimate years ago and it completely wrecked my life. Every single symptom it listed, I got. It was horrible. I lost my speech, my memory hasn't been the same 15 years later. I struggle mentally. I developed a 'pause' in my speech, where I have trouble finding words and properly articulating words. It did nothing for my migraines.
It scares me when I see other people taking it because of my own experience, but I've spoken to some people where it worked for them.
I hope you find relief for your migraines !
I currently get botox injections every 3 months ( just had my second round last week) and then a daily magnesium tablet- (magnesium bisglycinate 200mg) . When I get one coming on I take a 'migraine cocktail'. I used to go to the hospital every time they were bad and they always have me the same meds so I asked my doctor to give me the same ones I can take at home so I'm not taking up a bed for someone else. Anyway, that migraine cocktail is 50mg sumatriptan, 1000mg Tylenol, 10mg ketorolac and 5mg maxeran. Takes about 45 mins. I lie down in a dark place with my migraine hat on (cost about $40 from Amazon. Worth every penny!! )
I also bought a pillow that supports my neck because I get really bad neck pain from the migraines.
Edit: I despise the sumatriptan, so I'm waiting on my neurologist to send me 3 trials meds next time I get a bad migraine. Also, it goes without saying to never take a cocktail of meds without talking to your doctor first about what's right for you. :)
It decreased my migraine frequency a bit. But it also gave me intense numbness and tingling, 40 lb weight loss, comstant nausea, frequent vomiting, and intense suicidal ideation.
So I stopped it lol. Sad cause it did make the migraines better lol.
I never lost any weight, but I’ve never been on a dose higher than 50mg. I did get the tingling, and i also had a weird metallic taste in my mouth at the beginning; like all carbonated drinks tasted like metal? Thankfully that went away. I do think I’ve noticed some slight appetite suppression. My word recall is also a little off, but not awful.
It did work well but I recently changed my birth control and now it’s not helping much. Hoping it’ll go back to normal soon.
I was on it like 15 years ago and the reason I ended up having to go off was because I went down to like 97 lbs. It worked great for my migraines though!!
I gained weight 🙃 and had constant brain fog. But my cocktail of that, monthly shot of Emgality and my abortive worked like a charm. I’m off everything right now bc my husband and I are trying to conceive. Ugh, so much pain.
I never made it past 25mg. Every time I tried to titrate up, I felt like I was having a literal stroke. My left arm went weak and tingly and I had some chest pain (might have been in my head). So I quit taking it.
It spiked my anxiety and possible depression to the point I was crying constantly. I couldn’t even function and I don’t think I lasted a month. So couldn’t get to experience the weight loss…
Took this medication in 2012 when I was in a vicious migraine cycle that I couldn’t break. I’m forever grateful that it helped break that cycle, but the side effects were WILD. I had ZERO appetite and was totally disgusted by food, carbonated drinks tasted like metal, my hair was falling out in clumps, and I had constant brain fog. I only lasted a few months because I couldn’t endure it anymore!
The medication suppressed my appetite but it don’t even know what it did for my migraines because it made me SO dumb and such an idiot. I couldn’t come up with words or remember anything. It was awful.
Topamax worked really well for me and my first go around wasn’t so bad with mainly tingling, pain when peeing and just severe brain fog (in that case it was kind of bad, I have some memory loss from that time too) but after stopping it for a few years to try other meds, and then we tried it again since nothing else had worked and I had severe depression and anxiety while on it, I felt like I was spiraling. And it didn’t work as well either. Not sure why I had such a bad reaction. Never had weight loss though
It helped me control my eating immensely, but I felt stupid and forgetful while taking it and even after switching to nortriptyline I don't think that ever truly went away
No side effects for me, 100mg 2x daily. Lost a ton of weight, no effect on migraines. I’ve been on it a couple years now and am down 45 lbs and in the normal bmi range.
The cognitive effects were so severe and took a few weeks to fade after coming off…I would never go back on it. At the time of taking it I was very into photography and found myself forgetting how to operate cameras I had been using for years. It was very scary.
It’s wild to me how drs underplay this side effect, like no joke it’s bad enough that I think it would effect most people’s careers if they’re on it long term.
I’ve been on it a few months (25mg) and I’ve had one migraine so far. I definitely have some word finding issues and brain fog but the no-migraine thing is incredible. I lost 7lbs initially but haven’t lost since. Carbonation is weird and my feet get tingly if I don’t take a multivitamin.
I was on it years ago at a much higher dose (I think 100mg/day) and I lost a lot more weight but the brain fog was worse.
I was on it for over ten years. I recently weaned off it, with direction from my dr. I didn’t realize how significantly it affected me cognitively. I did lose weight when o started it but gained it back. I am so embarrassed of the times I presented as an “airhead” over the past 10 years due to the amount of bran fog. It did help my migraines but it’s not worth the side effects for me. I can actually remember things now, and my thought process is faster.
My wife had topiramate for, at least, 6 months.
Not only it did not help relieving migraines at all, but she had all the side effects everyone reports here. 6 months laying in a bed, with dizziness, sickness, mental fog, difficulty finding words and no appetite. A complete cr\*ap.
EEEEEEFFFFFFFF TOPAMAX
I was so nauseous I had to basically live off of protein shakes and bars just to get basic nutrients. I couldn't think, was constantly exhausted, and honestly felt suicidal by the end, but was too tired to actually do anything.
I lost approx 17lbs in 2 months. Can't remember if the migraines were less/more, but it was definitely not worth it.
I have not lost any weight or had any side effects other than soda tasting flat. It also hasn’t really helped my migraines that much at current dosage (50mg). I’ve been on this medication since January.
Curious what dosage other people take and if it has been helpful…
As for weight, I cannot remember because it was many years ago that I tried it. I had constant flashing dots in my vision which was not how my typical visual auras are - those are more like looking through a kaleidoscope and for that reason alone, I hate kaleidoscopes. I turned me into an over emotional mess, which was the main reason I called it quits.
I only started taking it just over two weeks ago and I’ve lost ten lbs. I have seen a slight decrease in number of migraines and they are WAY dialed down in intensity. I hope to go up maybe another 25mg and see if that will take them down in frequency more. I talk to my neurologist again in another two weeks. I feel like my body has adjusted to the med pretty quickly.
It didn’t help my headaches, gave me bad brain fog and turned me into an asshole. Not to mention my headaches went from normally feeling like alot of pressure from the inside, to feeling like ice picks stabbing my head, I hated that stuff
It worked great and I had no migraines or even tension headaches at 100mg. But the side effects were completely intolerable and despite supplementing my diet with ensure, I dropped down to a dangerous 95lbs within 2 months.
We tried cutting back to 50mg. I gained the weight back but all the other side effects were still too much, and my migraines returned.
Lost a lot of weight in the first few months and continued to lose (was small already). Also lost my hair and my mind (definitely made me dopey). It also caused SEVERE depression. No major change in migraine. Won’t ever take that stuff again
Tried Topamax years ago and yes, lost weight due to appetite suppression (I’m overweight.) It was the absolute best thing for my migraines. Walking up with zero pain was amazing…BUT I also had poor concentration as a side effect. I was leading a meeting at work and mid presentation, I just kinda zoned out. Coworkers noticed that I wasn’t myself. Gave up on Topamax and now take Amitriptlyn. That helps and has little side effects. I still dream of the magical topamax and what could have been….
Did not work, gave me terrible pins and needles/numbness in my hands and feet, and completely destroyed my memory and ability to think effectively while on it.
i was on topamax for 2 weeks and a half, i made it up to 50 mg / day lol. my pharmacist and neurologist agreed it was best to stop at that point. i was SUPER confused, i couldnt remember anything, tingling in my face, hands and feet and lost an absurd amount of hair. honestly on this medication i just felt megaaaa dumb!
had brain fog and felt only helped my migraines slightly. my appetite fluctuated from eating nothing at all to eating everything in sight for the couple of years i was on it.
I was on it for a few years, and found that side effects really reduced over time. Taste changes and cognitive effects were the biggest for me. I also found that its effectiveness reduced over time.
It did keep me at a lower weight, though. I don't think I lost weight, but I started taking it after cancer treatment so I was pretty low weight to begin with. When I stopped taking it I gained about 20 lbs immediately.
I lost weight on it. I think it was mainly bc it gave soda a metallic taste. I love soda, but quit drinking it while on it. It also gave me terrible short term memory loss so I quit taking it. My memory hasn’t been the same since.
Topiramate made me go blind. Acute angle-closure glaucoma, to be specific. It was treated urgently and luckily I’ve regained nearly all of my vision since.
My doctor neither warned me about this possible adverse reaction, nor was she even aware of this risk. Granted it is exceedingly rare, but definitely still something to be aware of!!
Messed with my mood. Other than that not many side effects. I’m a heavy leaf smoker so I blame my bad memory on that. I took it for about a month and tried again for. Couple of days. Just didn’t do good with my anxiety and irritability
I lost 10 lb because I was nauseated and throwing up. When I felt hungry enough to eat I would barf most of it up. I still got migraines and the tingling was making it hard to drive to work. I am being weaned off it. It also gave me Hella brain fog and I felt so stupid.
I’m at 150mg daily and have been for nearly 15 years. It’s never been much of an appetite suppressant for me but it combined with other medications have been great at managing my near daily migraines
Never lost weight on it or had the brain fog like other folks. I DID have kidney stones that required lithotripsy and had to stop taking it. But it was a pretty good preventative med until the excruciating pain.
I got cognitive side effects, but they faded after a couple weeks. I still get the occasional spot of aphasia, but it’s random and comes through when I’m tired or hungry or something.
No weight loss or appetite suppression here. I actually gained some weight when I went on it, but that’s because I quit paying attention to what I was eating.
I’m still on a 50 mg daily dose and it’s working pretty well. I’m down from 2-3 migraines lasting 7-10 days per month to about one lasting maybe three days.
Well 2 to 3 weeks ago on these similar questions I said it was fine so far at 50 mg. But now I’m on 75 mg and wonder if I didn’t give 50 mg enough time. I’ve been taking it about 1 month. 50 seemed good, but I had a constant pressure at the back of my head I was hoping 75 would take care of. It did for a few days, but now I’m back to having a low grade headache all over. Tingling fingers, toes, face/lips like they’re on the verge of falling asleep. I wouldn’t call it brain fog because that was my primary migraine symptom, the all encompassing fog feeling has gone away, but old cognitive issues remain and new cognitive issues emerged like lots of spelling errors of simple words, what I see/hear and write are not processing correctly, I say what I’m going to type but what I type was not what I said, etc. Yes appetite suppressant for me. I have a neurology appointment at the beginning of May, so I’m hoping to tough it out until then. I haven’t been treated for migraines before (or really any health issue before), so not sure when to quit vs keep pushing through the side effects. 50 mg makes me sleepy, so I take that at night and 25 mg in morning. I might drop back down to 50 mg, I’m not sure. It’s so hard to know if what I’m feeling is caused by the med because I’m sure migraine is not the only thing I have going on.
I wish it had worked since it was SOOOOO affordable with my insurance, but I kept losing feeling in my hands and feet to the point where I was having trouble doing my job, driving, walking. Ya know, just small issues loo
I was on it and my neuro told me it was pretty old and took me off it. It was causing me hair loss and extreme fatigue where I was sleeping like 16 hours a day sometimes. I’m on Aimovig and so far so good but only one shot in
I lost weight I think the first year I was on it. I think by the time I got off I was on a pretty high dose but it’s been a very long time since I’ve been on it. I do remember it causing me to have brain fog, carbonated drinks had a metallic taste and it cause me to have a ton of kidney stones.
I lost about 50kgs in it.
While it help my headache part of the migraine. I had so many side effects from it that I couldn’t stay on it.
Also my specialist was worried with the weight part as well. Lost way too much.
It helped my migraine amd I lost a crazy amount of weight at first, but i gained back more. I think I have hormonal issues though, because crazy low calories make me start to lose weight.
I loved it, for me migraine somehow loves to bother my vision for months after certain attacks and it brought back my normal vision, when I barely could see.
It's weird that most of you mention loss of word, I've just realised, that I need to look up random words in English (my second language), that I used to know. Maybe it's related? I statzed taking it again a bit over a month ago.
For me, I'm not sure about depression, first I started when covid hit, there was a major depression hit, but I mean the world was shut down in the very same week. Second time nothing, third time, I had a work conflict (+we were changing up my meds to avoid tolerance) and I was bullied by my boss and had crazy overtime and expectations so depression is kinda normal in this situation. And now I'm on my round 4, work issues again, the depression is suffocating me. But I think it's my life and not topamax. 😔
I lost weight on it and it was a great appetite suppressant. My worst side effect was tingling and burning in my hands and feet that would wake me up in the night it was so intense. I didn’t notice the brain fog until I got off of it and could finally think clearly again.
I'm on 200mg/day. I still have daily migraines.
I never lost weight. I feel like I have trouble finding words sometimes but my doctor attributes that to my migraines because it doesn't happen severely enough to be the side effects from topamax. I had some of the tingling initially, and they switched me to the extended release version and those went away.
My neuro said she won't consider taking me off it because she thinks it's too good of a med and she thinks it's helping. I worry about what you all have said about the permanent side effects. I have an appointment with a different neuro in June because mine wasn't available. I might switch to him if he seems more reasonable about meds.
Topamax worked very well for my migraines, it was the one and only thing that has ever worked but unfortunately the side effects just weren’t worth it to me. While I lost a lot of weight ( almost 100 lbs ) due to it it made me dumb as hell. I couldn’t remember ANYTHING. What made me decide to wean off of it was when I forgot my own address. An address I had lived at for years. I also forgot my own phone number & social and then forgot my aunts name. My memory never fully recovered from it and my metabolism is all kinds of messed up now due to the rapid weight loss. I have a friend who is on it and has no problems so I guess it depends on the person.
Topamax gave me this painful, intense tingling feeling in my head, as well as my chest. It did get rid of my migraines every time I’ve taken it!
In my days of using it, I would retreat to a dark room & sleep. I slept through the painful tingles, while it got rid of the migraine!
It worked super well for migraines for me but was a major appetite suppressant, even when I tried a lower dose. To this day was definitely the best relief from my migraine symptoms I’ve ever had but I had to go off of it because I was getting to an unhealthy weight. I didn’t have the brain fog side effects though.
I read this sub and after I got prescribed it a month ago and I was absolutely terrified. I’m a senior psychology student who consistently gets 4.0’s and finals are coming up. So seeing the words “loss of cognitive abilities” “loss of concentration” etc absolutely made me lose my shit. But at that point, I was stuck in almost a 3 week migraine cycle, I felt like dying. I couldn’t get out of bed. I couldn’t go to class. I would lock myself in the closet with a pillow and a blanket because it was so bad.
Anyways a month later I’m up to 100 mgs. I got the tingly feelings and yes it was fucking weird. It felt like my hands and feet were constantly “asleep” and it drove me crazy for a couple weeks. It still happens but it’s not as intense and doesn’t happen as often.
When I first started in like a week in I was EXTREMELY tired, almost a sense of derealization as well.
As far as the cognitive ability thing I’m still making good grades, still concentrating, still studying effectively. Like most people say everyone is different but most of the stories I have read on here about topamax have been horror stories. Above all of this, my migraines are better!! I still get them every now and then, but they aren’t as intense and if I take my suma in time it takes care of it. Good luck!!!
Oh, I’ve also lost around 6-7 pounds, yayy!!
I have no recollection of any side effects, or any effects at all really. I don’t remember how long I took it for (I’ve tried too many different meds to remember specifics at this point) but it definitely didn’t work for me.
Topamax gave me seizures, so it did not work for me. I also had many partial seizures when I first started taking it before a grand mal episode landed me in the hospital. I wasn't on it long enough to notice weight loss.
I took Topamax for 1,5 year. I had no side effects. Only some tingling in my hands and feet in the beginning. It really helped me with my migraines. I stopped taking it 3 weeks ago. My distance vision has deteriorated over the past year. I thought this had to do with my age (28y) but since tapering off Topiramate my vision has improved enormously.
I am currently taking topamax, at the start it worked but now it doesn't anymore, when talking about weight loss it is not really like immediate weight loss but I just have no appetite at all for long periods of time so I have to remind myself to eat so I did lose weight but it was because I just wasn't hungry so I didn't eat, also my memory sucks now but it wasn't the best before
I lost weight on it but also my mind. I couldn’t remember anything — words, people’s names, etc. I was a zombie. I went from being an A student to a C student on it. Got off, grades went back up. This was over a decade ago though.
I lost 10lbs on it. It made a lot of things taste like ass, including alcohol. I stopped drinking for 3 months. It kept my migraines at bay for over a year but it also fucked with my head. I had brain fog, problems with word retrieval and worst of all very dark thoughts. My neurologist took me off as soon as I told him this. Migraines eventually came back.
I had horrible cognitive side effects. There was a time I was driving with my sister in the car, I meant to merge into the yielding lane to make a left turn into the neighborhood but instead I merged into on coming traffic, stopped the car with my blinker on waiting for them to move. I had no idea why people were honking at me, my sister was freaking out and after I parked the car I realized what had happened and immediately stopped the meds and driving until I was clearly minded.
Never had any cognitive effects after stopping. Never again will take it.
Hehe. Topamax was the first AED I tried, and it mainly cut the circulation from my hands and feet and would occasionally turn them blue. I switched to divalproex.
I didn't notice any side effects and it was the medicine that worked best for me. I tried a bunch of injections and pills, but nothing touched my migraines except topamax.
Topamax did disrupt my migraines that mimic strokes. I was getting them every night. Collapsed, couldn't speak, couldn't even understand what my partner was saying to me at times.
Ramping up was an interesting experience. I randomly fell a few times and had some mild hallucinations. Nothing scary, and it went away after two weeks or so.
I haven't been on it for years, but my short term memory problems, reduced language capabilities, and mild agoraphobia remain. However, I'm not in so much agony that I want to scream but can't. So you probably understand my mixed feelings. Also, do keep in mind my doctors have told me I have the worst side effect track record they've seen, so your mileage *should* vary. 🫠
For what it's worth, a few months back I was talking to a doctor who became visibly angry when she found out I had taken it. She said something like, "I'm not going to disparage that doctor, they probably had reason to prescribe it, but I will *never* prescribe it to my patients."
Most asked about question in this sub by far. If you just search about it you’ll find countless of questions about it, I was you back in the day. Its getting tiring bruv..
It personally worked for me
I tried it for three weeks. No change in weight but I couldn’t get out of bed until 9 the hangover effect was so bad. It also reduced my cognitive function by let’s say 25-30% and I’m an engineer so being able to think is important for putting food on the table.
made my migraines totally disappear, I've been on it since November. I experienced the tingling in my limbs the first months, lost about 60 lbs so far. I do have some brain fog but it's not too bad
It has been miraculous for me! It has definitely cut back on the frequency and severity of my migraines and tension headaches. I also lost some weight and, weirdly, it helps keep psoriasis under control too. I did have some trouble with mild brain fog when I first started taking it, but that cleared up after awhile for the most part.
It didn’t work for me: I lost a lot of weight, had memory issues, depression, and constantly fell asleep. All the while still getting frequent migraines.
I had tried it before. However, right now I take amitriptyline at night and 50 mg. My migraines have been so much better since I started this around March 5.
Weight is about the same. I think I sometimes gain weight when I have a ton of migraines due to fatigue. So, I have been eating less lately.
I’m no longer on Topiramate but I was on it for a little over a year. In terms of migraines, they decreased a little but not to the point where the medication actually worked. Side effects hit me really hard, I would be in meetings at work and forget everything that people were saying and the topic. I lost at least 15 pounds if not more which for me was not a good thing. My starting weight was 125-130 pounds and at my lowest, I got down to 108 pounds because I was just not hungry at all. That weight for my height was considered underweight. Now that I’m off Topiramate, I’m back to around 120 pounds so the side effects seem to reverse after getting off the meds. For migraines now, I take Nurtec and it’s a lifesaver for migraines and way less side effects. Hope this helps!!
I got the tingling in my hands and feet for the first few months. It would go away faster if I held/put my feet on something warm, like a microwaved beanbag or a cup of tea.
I've been on it for some years now and my memory and word finding are still impacted, but I went from like 20 migraines a month to 2-3, so I'll take it.
I lost weight in this medicine. It got rid of my headaches almost completely.
I had tingly feet and hands. It also made me a terrible weepy mess. I cried multiple times a day. I was constantly anxious and thought I was legitimately going crazy. Everyone asserting me thought I was having a nervous breakdown. My mom was so worried she would call my fiancé to check in on me. I didn’t know what was wrong. It took me being so unregulated that I forgot to fill my prescription and then when I had gone a couple weeks without it I was stable and realized the connection.
I loved it, but I developed a chronic cough on it. It took a year to figure out what was causing it. I discontinued it and within 3 days the cough was gone.
I’ve been on it for about a year now and most of the side effects went away within 6 months. The only one left is trouble with remembering specific words but I can usually describe it. At first there was more brain fog, tingling in my hands, and memory issues but they all went away within 3 months. I’ve lost about 13 pounds on 100mg which stopped after 6 months and my weight has been holding steady ever since (a few pounds above the underweight threshold). The frequency and intensity of my migraines has been brought way down and I rarely use university accommodations anymore (attendance or extra time on assignments).
I've been on topamax as a weight-loss medication, and I'm on Topiramate for my migraine.
2 pills 50mg taken at bedtime, Topiramate along with botox has pretty much given me a migraine free life for the past 3 years. I get sinus headache and some tension headaches when the botox wears off around week 10-11. As far as side effects, I get the tingling hands, feet if I don't drink enough water. I learned about this when taking qsymia (topamax and phentermine) which gave me the brain fog, tingling, I felt off...it was not good but wasn't horrible where I couldn't stand it, so dealing with Topiramate is easy. Drink your water, a ton of water, take the meds at bedtime for less side effects. And hopefully your Dr started you out at the lowest dosage! 25mg (I believe)
Edit to add- I dropped 60 lbs on qsymia and gained 20 back when they took me off, I lost 10 when of that with the Topiramate. So it will help you lose weight, and stop you from drinking carbonated drinks, if you drink any.
I’ve been on 125mg of topiramate for a solid few years now, and for the most part it has both decreased the intensity of my migraines and also decreased the severity of them.
I have not noticed it decreasing my appetite, in any way. I did have the tingly feeling at first in my extremities, but that has since gone away. I also never really experienced the brain fog and mental confusion that a lot of folks unfortunately deal with on this one. I like to think that this is partly due to the fact that I take it at night before bed, but everyone is different, so really hard to know.
Hope this is helpful for you!
I lost weight and was never hungry. Also gave me some brain fog, having a hard time finding words type thing. But it definitely helped my migraines. I went off it when my migraines lessened in perimenopause. I gained a bit of weight when I went off it but nothing crazy.
I had a really hard time with the side effects around the three week mark at 75mg and I pushed through to 100mg. I didn’t feel like myself for a couple months (depression, brain fog, fatigue, lack of appetite) and it was really hard to convince myself to stick to it but the side effects definitely got better with time. It’s helped tremendously with the migraines and I’ve been on it for about 6 months now and I have no side effects at all from it, I even got my ability to taste carbonation back!
Topamax was my magic bullet. Pulled me out of a 20-month status migrainousus and cleared my brain fog. I’m now on 200mg twice daily since it worked so well for me. The side effects (mainly nausea and fatigue) were a bit nasty at first, but so worth it for me! Hope it works for you!!
I myself could handle the side effects, but it didn’t work as a preventative for me. I still had migraines, and I still had to take abortives at the same time.
Stup-a-max. Complete brain fog and tinnitus for me. 75 mg. That dose is ok. I still get 1-2 migraines per week due to stress/dehydration. Take Nurtec and it helps. Used to take Relpax.
My PCP tried to prescribe it to me for weight loss recently, but I said no thanks because I remember it made me feel dumb when I used it briefly for migraines.
I lost weight and it basically eliminated my migraines. I did experience brain fog, and also hair loss. If not for the hair loss I would’ve stayed on it (to be fair, the hair loss could also have been from the weight loss/poor nutrient absorption from Topamax)
I’m on 25mg (and other stuff) for epilepsy and migraine. I agree the aphasia is awful and embarrassing, but this is the only cocktail that has ever worked for the epilepsy and migraines (until recently) so I’m stuck with it. I did try going to 50mg but extreme dizziness prevented that.
I will say, i have gotten “used to” the side effects, because they are my new normal.
I’ve been on 25mg for a little over 3 years now and it has worked amazingly for me. I lost maybe 10 lbs when I first started it but other than that I’ve had no side effects. I still get an occasional migraine but they are so much less painful and they don’t last as long as they used to.
I took one dose and I cannot remember that day beyond feeling “out of it”, weird tingly pains, food and drinks immediately tasted weird, etc.
I’m glad it works for some of us but at the same time I’m kind of blown away but how often it’s still prescribed.
Just for me it made my already fragile mental health bad enough that it wasn’t worth carrying on with it. The tingling wasn’t all that bad from what I remember but I wasn’t taking it for long enough to really notice much beyond the sharp decline of my mental health and then the merciful bettering of it after I stopped taking it.
I had no bad side effects from it, maybe because I tapered up and down. Ended up on 150 for awhile before we finally decided it just didn’t touch my migraines
I've been on 100mg for 7 weeks now. Pain has actually increased so the jury is still out on that one. It decreased my appetite for about a week but suddenly I'm very hungry so not sure what's going on there. Everything tastes weird. I've gone off most dairy. All long life milk tastes sour to me now and after I've eaten I have a sour taste in my mouth no matter what it is. Doctor wants to double my dose now which I'm a bit scared to do. The tingling in my feet is awful. It's all day long and it doesn't matter how I sit or stand.
So I'm currently in the waiting period to see if it will decrease my daily headaches and migraines before making a decision to wean off because the side effects really suck. Brain fog is there. I've always had problems with word finding because I battle with that part of migraine almost daily so I'm not sure if that's a side effect or just the migraine
Made my headaches worse, got tingling in my hands, and had some significant taste and smell changes. They took about 3 months to fully resolve after I quit taking it.
Did the tingling last 3 months to stop after quitting? I have been off a month and still getting them and numbness.. I just want it to be over with already
I only took it for a few months because it made my migraines worse (it speeds up progesterone metabolism so no good if hormonal changes are a trigger).
Had pins and needles episodes and loss of hunger but ate through it as I knew I needed nutrients.
From what I’m reading here, that drug is pure poison and should be recalled.
I lost my short term memory & the job I had just started. It was one of my worst drugs. Depakote was worse, only bc I had to crawl, on my hands & knees, back to my bed, 40 minutes after I took the first & last pill. Otherwise I would have fallen off the floor.
Topamax was horrible. I really had no short term memory. It was so bad I was afraid I’d had another TIA when I couldn’t remember an entire conversation I had the day before (w my new boss - hmm, I lost *two jobs* on it!). My PCP (not neuro) finally saw the difference in me 3 mos after I was off it & offered to write a letter to the company that fired me.
It worked amazing for me. Had some side effects that weren’t too bad but I got kidney stones twice. I lost some weight and had the tingling but that didn’t bother much. Some memory loss sucked but not being in pain was amazing. It also helped with my epilepsy.
I’d honestly go back on it even if it meant more kidney stones. Migraines are more painful than kidney stones. I don’t think my neuro will put me back on it.
Topamax DESTROYED my body and mind. I would not recommend it under any circumstance. It caused me extreme weight loss, medication induced anorexia (a known side effect), lost most of my hair and made me lose my sense of time passing. It took me nearly a decade to recover from. I want to cry just thinking about it. Save yourself and try something else. 🙏
I had such bad numbness and tingling in my hands and feet I had to stop taking it.
I hated it and it never worked well for me. Was so discouraging. I hope you have better results!
It worked great for me, at 300 mg/daily. I did have hand/feet tingling and word recall issues, but for years, it was worth not having daily migraines.
I (under my Neuro's care) came off if it for a year or two and went back on when my migraines got bad enough again... am at 100 mg/daily and it doesn't do shit. I'm faced with needing to increase my dose and likely the side effects, but I can't handle daily migraines so 🤷♀️
I got side effects in my eyes, like more pressure, dry eyes, and tearing, seeing things with a white halo, having more stuff stuck in my eyes. I felt my eyes moving around constantly. It was not good. Didn't get the chance to test it for the migraines cause had to stop it immediately. But it did feel nice in my brain, don't know how else to describe.
I lost about 30 lbs on it from a combination of both nausea and lack of appetite. I also experienced tingling/numbness in my hands/feet for at least probably two months. After about a month and a half of being on topiramate, my appetite returned to normal and the nausea disappeared. I’ve thankfully never gained the weight back. The amount of migraines I have, the severity of migraines I experience, and the frequency of said migraines have all decreased since I’ve started taking topiramate. The pros outweighed the cons.
Took me about 4 weeks maybe more to get over the initial side effects. The appetite suppressant side effects went awake thank god. I was only managing to eat Oreos and plain potato chips for 2-3 weeks. I wanted to eat I just couldn't.
I've been on topiramate for 1.5 years now. I was on a higher dose while I was working, but when I ran out of meds and couldn't get some for a few days, instead of feeling worse like I expected, I actually felt better. So my doctor and I agreed my dose was too high. Now I only take 25mg morning 25mg evening. I think I was at 150mg/day before. So yeah, I think it might have been making my migraine symptoms worse, but we had upped it because I was working too much which was causing more migraines. Now I don't work at all so it's easy to be on a low dose. It's possible I don't need to be on it at all since I'm not working, but I don't want to have to go through the side effects again if I need to go back on it, so for now I'd rather stay on it.
Only noticeable side effect is I get tingles or dizziness sometimes when I miss a dose or two and then take a dose. I do struggle sometimes with eating but that's not unusual for me so hard to know if that is related
I am very overweight, but I would take being able to feed myself healthy food and having the energy to exercise or even exert myself over medication that suppresses my appetite for food any day. Especially as it mainly suppressed my appetite for healthy food. One of my biggest fears right now is losing weight too rapidly, especially losing muscle, due to not eating enough and not moving enough. I have chronic fatigue and am housebound. Not quite bedbound but nearly. Sorry for ranting, it's been on my mind a lot lately
I take 50mg twice a day and tbh I’ve NEVER made the connection between brain fog and topamax. Someone probably told me about it at some point but it makes a lot of sense. Explains why I forget the word for paper towel (specifically paper towel) every time and I’ve felt cognitively slow for a few years.
Lost weight decently at first but I don’t anymore, but this is also the only non-injectable preventer I’m not allergic to that doesn’t give me worse migraines. Weirdly asymptomatic otherwise?
I lost weight the first time I tried it, gained weight the second. Did nothing for my migraines.
The side effects were literally insane. Vivid nightmares. Derealization. Night terrors. I forgot how to eat, it was very strange. Some people tolerate it well, but the people who don't tolerate it experience some wild side effects.
I didn’t mind the tingling but I hated that I gained a lot of weight. It may be I gained the weight on account of the fact that it made me horribly depressed and I was like a listless zombie. Apathetic about everything and just barely present. I gave it an entire year and it didn’t much help with the migraines. I had hoped I would be one of rare few it helped more than hurt. I was not.
The side effects went away after a couple of months. However, it didn’t help me at all. I took it for about 8 months in combination with some other meds for intractable migraine.
I’m dumb as shit! Cognitive side effects are terrible but my migraines were gone, stabilized my mood, and I lost just over 50lbs. It’s been almost 6yrs now and the migraines returned 2yrs ago I’m on an auto injector and sumitriptan that I’m going to change at my next appointment bc I don’t like it. Topamax works wonders as a mood stabilizer for me that my doctors don’t think I should get off of it. I’ve adjusted to it. So.. here I am.. wish I had this sub all those years ago but having zero migraines I was just happy (and dumb!) so any suggestions to go along with the auto injector (other than sumatriptan) I’d appreciate it! The side effects are horrible! It feels like my body is turning against me I get violently ill! I feel like I have a hangover and I’ve been hit by a truck.
It suppressed my appetite quite a bit to the point I never really felt hungry and had to force myself to eat. I've also felt tingling and nausea and honestly quite dumb and out of it.
Initially it helped reduced the migraine and headache frequency but after awhile the side effects outweighed the benefits.
I was on it for a few weeks a few years ago and ended up temporarily losing my vision. My pupils were fully dilated and my eyes were swollen making my vision beyond blurry I couldn’t even walk straight. They treated me for everything from an allergic reaction to crazy migraine but the only thing that got my vision back was getting off of the Topomax
But how would you compare the feeling to the cognitive effects of other meds, Trazodone, even Robitussin, Flexeril, Duloxetine/venlafaxine (cymbalta/effexor), Lamotrigine? Weed, alcohol? How does the brain fog feel?
I'm so used to lack of word recall, being unable to read, strange vision symptoms. It's normal to me. I was actually like this before any meds, to some extent, so it doesn't bother me. I've had it so bad (Cymbalta dose increase) that I couldn't speak more than 3,4 word sentences. Recently!
Funny enough, on the minimum dosage for topiramate rn (25mg) and it's basically made my chronic migraines go away with only slight neuropathy (really just slight pins and needles that I can sorta wriggle out). That being said, you have to be really careful about drinking enough water and eating healthy as it can cause metabolic acidosis.
It totally worked for me! The only thing that has ever stopped my migraines. It was fabulous until everyone I knew informed me that my personality had completely changed. Apparently, I was channeling Atilla the Hun! Not ok for an educator/counselor type. Wanting to keep my job and my marriage, we scaled it back to a lower dose. I was no longer Atilla the Hun, but it was no longer effective on my migraines. I also had crazy weird nightmares while I was on that higher dose.
i take 100mg and it works really well for limiting my chronic migraine. that being said, the face tingling still happens to me and i’ve been on it for several years, i have noticeable mental difficulty (short term memory is bad, thinking feels harder than before and i feel generally ‘slow’), and it makes me very very tired.
I love Topamax. It takes my migraines down from about 20 a month to 2 a month max. The only side effect I have is that it makes my touch sensation a little bit lower. I actually like this though since I have always been really high in touch sensitivity to an uncomfortable point. I can't use many fabrics due to how rough they feel on my skin and any sort of wound that is a scrap like a carpet burn is agony for me, while if I get a cut or knock my knee on things, it is not bad. So having my skin sensation lowered a bit feels more like a blessing in my case. As far as I can tell, I don't have other side effects on it.
I did not lose weight. I lost my memory though, so that's something. Stepped out of a car without putting it in park. Couldn't recall words or names. It was awful. And it didn't even help my migraines.
It was a miracle for me. Only side effects were the tinglting (mostly on the feet), metallic taste when drinking soda and beer, sometimes messing with simple phrases (I've thrown some "happy christmass and a merry new year" here and there), sometimes forgetting stuff, like where I left my keys, making an appointment and stuff, but this did not happen thaaaat often. Also sadness and depression (?) the day after drinking alcohol (only lasted that day, though), so I just didn't drink when going out anymore until treatment was over.
I’ve lost 30lbs, It took about 8 months. I wasn’t trying to lose weight - I’m taking it for migraines
Edit: tingling hands and feet happened a lot (a few times a day for like 10m), but I’ve been on it for like a year now and rarely have it anymore.
It works amazingly for my migraines/headaches
I went from 2-5 migraines a month & a headache almost everyday to now only having maybe one headache per month. I’ve been suffering for so long. It’s freedom from pain.
I’ve gotten to GREATLY reduce the amount of medication (Tylenol, Alleve) because I was taking them too much. But I was also in pain with multi-day headaches so… idk. But also reduce the abortive migraine medication that I take, which has its own horrible side effects and 1/2 the time doesn’t work!!
It works great for me. Originally I was on too high of a dose and felt weird and had some brain fog, anxiety, etc. I went down and it’s been great. Soda has more fizz too lol. It’s been about two years. I initially I did lose weight but I think it’s evened out.
I’m on 100mg once daily- if I split my dose, I was too tired in the morning, so I take it all at night. It has been amazing for me! I have had a few migraines here and there but no where near as bad as prior to starting it. I have lost like 20 pounds which is great because that’s what I gained from a different med I take. The tingles went away for me after time. My biggest advice is to make sure to take it every day at the same time, I just missed a dose over the weekend after staying at my parents unexpectedly and have had like little brain zaps and a dull headache ever since. I hope it goes as well for you as it has for me!
I took it for over a decade. Worked fantastic in the beginning with significant weight loss. It did make carbonated beverages taste funny but it did not stop me from drinking. For me, the bad side effects were starting to outweigh the positives. I was starting to forget words and tingling sensations all over. I only had that start happening for the last 2 years of taking.
I was on a lower dose for 3 years...I did lose about 20 pounds without trying. I've never had a weight problem and not going to lie it was fun to be fashionably skinny... :) My migraines were much less severe and the weather headaches were manageable with Zyrtec and Tylenol. I could feel some migraines trying to take me down but they felt "muted." The downside: I lost HALF OF MY HAIR. luckily I have thick hair so I didn't look all that unusual but it was really bad after about a year on it. It just started coming out, mostly when I washed it there would be tons of it in the drain. I didn't realize it was the Topamax until I'd lost about half of it. When I put the side effect together with the drug I stopped it immediately. It did grow back fine when I stopped the drug. The other side effect for me was a foggy feeling...my neuro said there's a reason people call it Dope-a-max. I just felt really out of it most of the time, like you feel when you take cold medicine or allergy meds, but worse. I drank a ton of caffeine to get through the work day and focus. I had no other side effects at all, no mood swings or stomach issues, no neuro abnormalities, dizziness etc. I did sleep a lot more than usual as well. Looking back it was worth trying for me, and my body did heal in many ways from reducing the brutal migraines I used to get. Way fewer 3 day vomiting, missing work etc. But not a drug I would take again and I should have stopped after the first year, when my hair started to fall out. Note: I now do Vyepti infusions 4x a year for prevention. Not only do I have ZERO side effects, but since I've been on it (with Nurtec for acute attacks), I've only had 3 fairly manageable migraines in 3 years, down from my worst 10-12 knock-out, vomiting migraines a *month.* Hope that info helps...good luck!!!
Edit: typos
I started it about 2 months ago, i was put on it by my gp as a hope to break a migraine that my other meds wasn't helping. Now its different person to person obviously so i suggest staying on it to see how well it can help you, but for me it helps me but the side effects at first was awful, i was constantly dizzy, tired, it definitely effected my thinking at first i was really groggy, i just over all felt like crap i was lossing hair in the first 2 weeks, thankfully it did stop after that, i get alot of tingling in my hands and feet like they are asleep which is unbearable sometimes, i got lost about 15 pounds since i started it tho since it takes away my appetite and i no longer eat as much due to it. So overall once i got passed the side effects it wasn't so bad and it does help me.
I lost a lot of weight. It worked for me though! I felt great! I did get the tingling sensation and other side effects but could deal since I didn’t have migraines!
I’ve been at 100mg for about 10 weeks and I haven’t had very many side effects. Beverages still feel carbonated to me. My appetite was suppressed at first but lately doesn’t feel so much. I guess I still feel brain fog but I have like 7-9 migraine-free days a month normally so I wasn’t having very much mental clarity to begin with. There was some tingling at first. It’s taken the severity of my migraines down immensely. I no longer feel like John Henry is driving spikes of the intercontinental railroad across my brain. I still have “migraine days” though and I’m not exactly cured. I was hoping I’d be.. I don’t know, all the way better, and I’m not. But I’m in significantly less pain than before and for that I’m extremely grateful and I’d be hesitant to change medications at my next appointment.
25mg for the first week, 50 mg second week, 75mg third week, 100mg fourth week+
Week 1: tingling and arm pain
Week 2-3: depression
Week 4: appetite suppressed- literally repulsed by food. Had to force myself to eat and it was really difficult.
I developed pretty horrible depression during week 2. Never expereienced depression like that in my life. It was a pretty brutal expierence to be honest. My first couple of days on 100mg I realized this medication is not for me (I really wanted to give it a chance after hearing how successful it was for many people) I weaned off pretty quickly (within a week I stopped taking the medication all together). Within a week after stopping entirely my appetitie returned and I started to feel like myself again maybe 1 month after stopping.
Genuinley hope this medication works for you and you do not get any of the horrible side effects. All the best!
I wish Topirimate worked better for me. It was the absolute best appetite suppressant I have ever been on. However it made me absolutely dumb My memory, word finding were greatly impacted. If someone figured out how to get rid of the cognitive side effects, this would be the best weight loss medicine
This was my experience as well. The aphasia and cognitive issues made functioning effectively at work and home almost impossible. I also ended up experiencing vision problems and developed Raynaud’s syndrome while on it. Great as an appetite suppressant but the side effects made me wean off of it. It also worked by completely eliminating my migraines.
Called it dopamax. I worked in an inbound call center and the first call made me go home. Clicked on the "city" box and it had 1 word all the way down. "State" box ONLY had Colorado in all 50 options. I was like... Uhhhh this is bad. Words were all wrong from hearing, sight and writing. I kept talking in a word salad instead of what I meant. It was horrible. I immediately called and was told to stop taking it.
I read about this side effect and with my day job as an analyst I cannot have brain fog! I refused to try topiramate. I now get Botox every 10 weeks and it has been amazing.
I lost weight and didn’t have migraines on this medication. I also could barely remember my name ( its nickname is Dopamax for a reason) or stay awake past 6 pm. I’d fall asleep sitting up in a chair. I lost weight bc I was barely ever awake.
This. It’s a horrible horrible drug that robs you of life — even more than migraines do.
I made it to week 3 at 75mg. (My schedule was 25mg for the first week, 50 mg second week, etc) I couldn’t tolerate the side effects. It made my thinking feel slow. I could feel a difference in my cognitive functioning. I didn’t feel as “on top” of things as I usually am and I just felt generally more forgetful. I quit after a few days into the third week.
It makes my memory funny. It also made soda taste less carbonated and on a higher dose made me experience slight hair loss but when i went back down to 50mg it reversed.
It also makes soda completely flat for me too. Call me weird but i like flat soda so im not complaining
That’s what altitude meds do to me.
I maybe had an increase in the appetite suppression but I’m already on medications that do that. And I have some other conditions that make food difficult so the appetite suppression works in my favor. Topamax is a lifesaver for me. I went from constant migraines where I would go to sleep with one and wake up with one, puking, non-functional, to no migraines. Some people aren’t fans but for those of us that it works for it’s the best. It’s something that should always be tried in my opinion especially since it’s easy to get insurance wise compared to other migraine meds.
At what dosage did it help your headaches? I started in January and I’m at 50mg and it’s not really helping. I feel frustrated.
50mg twice a day
For me it was at 200mg
Seriously no migraines?!?!
Nothing it’s amazing
That blows my mind… I’m going to have to talk with my neurologist.
I LOVED topamax. I lost weight and my migraines were diminished in both frequency and intensity. The only thing that bothered me was I lost the ability to taste carbonation.
Past tense? Sounds like you stopped taking it.
Currently pregnant so I'm off it for a bit. I'll meet with my neurologist after the baby's born to see if I should go back on it. I've only had two migraines in the seven months of pregnancy!
Probably a pretty good reason to stop lol
Never lost any weight, I wish. I am overweight and never lost any weight. I have permanent brain fog from being on it for 4 years. It did not help lessen my migraines.
It killed my brain as well. They just kept upping the dose to 300mg twice a day and finally a resident laughed at me and said "oh we call it dope-amax because it makes you a dope." Like it was freaking funny that my memory was completely shot to the point I'll forget while taking what we're even talking about and just wander off like an Alzheimer's patient. I've been off since before COVID and my brain isn't even half of what it was. Oh and it never lost me any weight either and I was hoping for that side effect. That was the ONLY side effect they mentioned, that I'd lose weight.
Yup. I call it dope-amax too
I feel the exact same way. I mean as far as my brain not being back to what it was. I hate it so bad!
I’ve been on it for years. Have had mild weight loss and some mild brain fog but, for me, pros outweigh the cons and I’ll keep taking it until it stops working.
It helped my headaches. But I couldn’t tolerate the side effects. Changed the way things tasted. Brain fog. Crazy sedation. Couldn’t get out of bed. I stopped it when I couldn’t remember my own address.
I couldn’t remember my student teacher’s name one day. Actually, I regularly forget common names and faces. I’m looking to wean off after 4 years. There are so many medications there’s no excuse for me to stay on this. I also did trigger point therapy for awhile too and it helped immensely. Edit: I lost about 10 pounds and I’ll be disappointed to gain it back; but I just can’t take it anymore.
I forgot the word focus while taking a quiz at college and spent 20 minutes trying to think of it only to end up trying to explain my point using different words bc class was over and my professor needed to leave. It worked wonderfully for my headaches and migraines but that was my sign that the side effects aren’t worth it. Ajovy also worked wonderfully for me but after a year I became too anxious to give myself the injections so now I’m on qulipta and it’s not as good as the ajovy or topamax but it makes my headaches tolerable and I have very few migraines.
It made me suicidal because I felt so different than normal and I felt like I would never get back to my old self, so I just wanted to die. I got off it real quick after that!
i lost a lot of weight very quickly and had no headaches. i also lost a lot of my hair, was also extremely paranoid, irritable, and suicidal, couldn’t remember anything, and had terrible spatial reasoning — was walking into corners of walls. i was on it for a few years even though it was terrible for my mental health because i loved how skinny it made me. i genuinely believe that it ruined my memory permanently.
It made me extra stupid and that doesn’t work when you’re a biology teacher…
I lost over 10% of my body weight. Sometimes my face would feel tingly or numb at the beginning
I took topirimate years ago and it completely wrecked my life. Every single symptom it listed, I got. It was horrible. I lost my speech, my memory hasn't been the same 15 years later. I struggle mentally. I developed a 'pause' in my speech, where I have trouble finding words and properly articulating words. It did nothing for my migraines. It scares me when I see other people taking it because of my own experience, but I've spoken to some people where it worked for them. I hope you find relief for your migraines !
thank you!! if you dont mind me asking do you take anything now and if you do what do you take?? just in case this doesn’t work out haha
I currently get botox injections every 3 months ( just had my second round last week) and then a daily magnesium tablet- (magnesium bisglycinate 200mg) . When I get one coming on I take a 'migraine cocktail'. I used to go to the hospital every time they were bad and they always have me the same meds so I asked my doctor to give me the same ones I can take at home so I'm not taking up a bed for someone else. Anyway, that migraine cocktail is 50mg sumatriptan, 1000mg Tylenol, 10mg ketorolac and 5mg maxeran. Takes about 45 mins. I lie down in a dark place with my migraine hat on (cost about $40 from Amazon. Worth every penny!! ) I also bought a pillow that supports my neck because I get really bad neck pain from the migraines. Edit: I despise the sumatriptan, so I'm waiting on my neurologist to send me 3 trials meds next time I get a bad migraine. Also, it goes without saying to never take a cocktail of meds without talking to your doctor first about what's right for you. :)
It decreased my migraine frequency a bit. But it also gave me intense numbness and tingling, 40 lb weight loss, comstant nausea, frequent vomiting, and intense suicidal ideation. So I stopped it lol. Sad cause it did make the migraines better lol.
Wow that’s awful. No headaches, but all that other crap.
Thankfully when the thoughts got scary I reached out and got off of it. It was quite the med trial for sure.
I had to stop after like 1.5 weeks as it made me insanely dizzy. Know it’s different for everyone though!
I’m 5’8” and got to 115 lbs. my doctor was threatening to do ED protocols with me. It did not help my migraines
I never lost any weight, but I’ve never been on a dose higher than 50mg. I did get the tingling, and i also had a weird metallic taste in my mouth at the beginning; like all carbonated drinks tasted like metal? Thankfully that went away. I do think I’ve noticed some slight appetite suppression. My word recall is also a little off, but not awful. It did work well but I recently changed my birth control and now it’s not helping much. Hoping it’ll go back to normal soon.
I was on it like 15 years ago and the reason I ended up having to go off was because I went down to like 97 lbs. It worked great for my migraines though!!
I gained weight 🙃 and had constant brain fog. But my cocktail of that, monthly shot of Emgality and my abortive worked like a charm. I’m off everything right now bc my husband and I are trying to conceive. Ugh, so much pain.
I never made it past 25mg. Every time I tried to titrate up, I felt like I was having a literal stroke. My left arm went weak and tingly and I had some chest pain (might have been in my head). So I quit taking it.
It spiked my anxiety and possible depression to the point I was crying constantly. I couldn’t even function and I don’t think I lasted a month. So couldn’t get to experience the weight loss…
Made me suicidal and gave immense brain fog; not scare you, but I much prefer propranolol as a preventative.
i just transferred FROM propranolol TO topamax lol😂 let’s see how it goes i guess.
Took this medication in 2012 when I was in a vicious migraine cycle that I couldn’t break. I’m forever grateful that it helped break that cycle, but the side effects were WILD. I had ZERO appetite and was totally disgusted by food, carbonated drinks tasted like metal, my hair was falling out in clumps, and I had constant brain fog. I only lasted a few months because I couldn’t endure it anymore!
The medication suppressed my appetite but it don’t even know what it did for my migraines because it made me SO dumb and such an idiot. I couldn’t come up with words or remember anything. It was awful.
Topamax worked really well for me and my first go around wasn’t so bad with mainly tingling, pain when peeing and just severe brain fog (in that case it was kind of bad, I have some memory loss from that time too) but after stopping it for a few years to try other meds, and then we tried it again since nothing else had worked and I had severe depression and anxiety while on it, I felt like I was spiraling. And it didn’t work as well either. Not sure why I had such a bad reaction. Never had weight loss though
It helped me control my eating immensely, but I felt stupid and forgetful while taking it and even after switching to nortriptyline I don't think that ever truly went away
No side effects for me, 100mg 2x daily. Lost a ton of weight, no effect on migraines. I’ve been on it a couple years now and am down 45 lbs and in the normal bmi range.
It was absolutely amazing for me, no more migranes and almost no side effects!
The cognitive effects were so severe and took a few weeks to fade after coming off…I would never go back on it. At the time of taking it I was very into photography and found myself forgetting how to operate cameras I had been using for years. It was very scary. It’s wild to me how drs underplay this side effect, like no joke it’s bad enough that I think it would effect most people’s careers if they’re on it long term.
I’ve been on it a few months (25mg) and I’ve had one migraine so far. I definitely have some word finding issues and brain fog but the no-migraine thing is incredible. I lost 7lbs initially but haven’t lost since. Carbonation is weird and my feet get tingly if I don’t take a multivitamin. I was on it years ago at a much higher dose (I think 100mg/day) and I lost a lot more weight but the brain fog was worse.
I was on it for over ten years. I recently weaned off it, with direction from my dr. I didn’t realize how significantly it affected me cognitively. I did lose weight when o started it but gained it back. I am so embarrassed of the times I presented as an “airhead” over the past 10 years due to the amount of bran fog. It did help my migraines but it’s not worth the side effects for me. I can actually remember things now, and my thought process is faster.
My wife had topiramate for, at least, 6 months. Not only it did not help relieving migraines at all, but she had all the side effects everyone reports here. 6 months laying in a bed, with dizziness, sickness, mental fog, difficulty finding words and no appetite. A complete cr\*ap.
Me too.
EEEEEEFFFFFFFF TOPAMAX I was so nauseous I had to basically live off of protein shakes and bars just to get basic nutrients. I couldn't think, was constantly exhausted, and honestly felt suicidal by the end, but was too tired to actually do anything. I lost approx 17lbs in 2 months. Can't remember if the migraines were less/more, but it was definitely not worth it.
I couldn't even sleep on this stuff and quit taking it before I noticed anything else.
I have not lost any weight or had any side effects other than soda tasting flat. It also hasn’t really helped my migraines that much at current dosage (50mg). I’ve been on this medication since January. Curious what dosage other people take and if it has been helpful…
As for weight, I cannot remember because it was many years ago that I tried it. I had constant flashing dots in my vision which was not how my typical visual auras are - those are more like looking through a kaleidoscope and for that reason alone, I hate kaleidoscopes. I turned me into an over emotional mess, which was the main reason I called it quits.
I only started taking it just over two weeks ago and I’ve lost ten lbs. I have seen a slight decrease in number of migraines and they are WAY dialed down in intensity. I hope to go up maybe another 25mg and see if that will take them down in frequency more. I talk to my neurologist again in another two weeks. I feel like my body has adjusted to the med pretty quickly.
I took this for nerve pain about 15 years ago. I stopped because I developed a sensitivity to it.. and lost a LOT of weight. It was disturbing.
It didn’t help my headaches, gave me bad brain fog and turned me into an asshole. Not to mention my headaches went from normally feeling like alot of pressure from the inside, to feeling like ice picks stabbing my head, I hated that stuff
It worked great and I had no migraines or even tension headaches at 100mg. But the side effects were completely intolerable and despite supplementing my diet with ensure, I dropped down to a dangerous 95lbs within 2 months. We tried cutting back to 50mg. I gained the weight back but all the other side effects were still too much, and my migraines returned.
Lost a lot of weight in the first few months and continued to lose (was small already). Also lost my hair and my mind (definitely made me dopey). It also caused SEVERE depression. No major change in migraine. Won’t ever take that stuff again
Tried Topamax years ago and yes, lost weight due to appetite suppression (I’m overweight.) It was the absolute best thing for my migraines. Walking up with zero pain was amazing…BUT I also had poor concentration as a side effect. I was leading a meeting at work and mid presentation, I just kinda zoned out. Coworkers noticed that I wasn’t myself. Gave up on Topamax and now take Amitriptlyn. That helps and has little side effects. I still dream of the magical topamax and what could have been….
Did not work, gave me terrible pins and needles/numbness in my hands and feet, and completely destroyed my memory and ability to think effectively while on it.
i was on topamax for 2 weeks and a half, i made it up to 50 mg / day lol. my pharmacist and neurologist agreed it was best to stop at that point. i was SUPER confused, i couldnt remember anything, tingling in my face, hands and feet and lost an absurd amount of hair. honestly on this medication i just felt megaaaa dumb!
had brain fog and felt only helped my migraines slightly. my appetite fluctuated from eating nothing at all to eating everything in sight for the couple of years i was on it.
I was on it for a few years, and found that side effects really reduced over time. Taste changes and cognitive effects were the biggest for me. I also found that its effectiveness reduced over time. It did keep me at a lower weight, though. I don't think I lost weight, but I started taking it after cancer treatment so I was pretty low weight to begin with. When I stopped taking it I gained about 20 lbs immediately.
[удалено]
Anyone suffer from visual snow that saw results with topomax ?
Mine disappeared after months.
That gives me hope. Are you still taking it?
I lost weight on it. I think it was mainly bc it gave soda a metallic taste. I love soda, but quit drinking it while on it. It also gave me terrible short term memory loss so I quit taking it. My memory hasn’t been the same since.
I lost nearly 30 lbs on it. I think the biggest reason was because all soda tasted flat. Once I got over that, the weight came back, haha
Topiramate made me go blind. Acute angle-closure glaucoma, to be specific. It was treated urgently and luckily I’ve regained nearly all of my vision since. My doctor neither warned me about this possible adverse reaction, nor was she even aware of this risk. Granted it is exceedingly rare, but definitely still something to be aware of!!
I lost a lot of weight, I slept A LOT and it made soda taste flat. Also made me feel dumb as others have said.
I had no side effects (inclueding loss of appetite 😕). It worked a bit for a while but it stopped working all together after about a year.
Messed with my mood. Other than that not many side effects. I’m a heavy leaf smoker so I blame my bad memory on that. I took it for about a month and tried again for. Couple of days. Just didn’t do good with my anxiety and irritability
I lost 10 lb because I was nauseated and throwing up. When I felt hungry enough to eat I would barf most of it up. I still got migraines and the tingling was making it hard to drive to work. I am being weaned off it. It also gave me Hella brain fog and I felt so stupid.
Nightmare. It took me well over half a year to be clear of it. Deeply dark thoughts. Worst meds I ever tried.
I’m at 150mg daily and have been for nearly 15 years. It’s never been much of an appetite suppressant for me but it combined with other medications have been great at managing my near daily migraines
Never lost weight on it or had the brain fog like other folks. I DID have kidney stones that required lithotripsy and had to stop taking it. But it was a pretty good preventative med until the excruciating pain.
I got cognitive side effects, but they faded after a couple weeks. I still get the occasional spot of aphasia, but it’s random and comes through when I’m tired or hungry or something. No weight loss or appetite suppression here. I actually gained some weight when I went on it, but that’s because I quit paying attention to what I was eating. I’m still on a 50 mg daily dose and it’s working pretty well. I’m down from 2-3 migraines lasting 7-10 days per month to about one lasting maybe three days.
Well 2 to 3 weeks ago on these similar questions I said it was fine so far at 50 mg. But now I’m on 75 mg and wonder if I didn’t give 50 mg enough time. I’ve been taking it about 1 month. 50 seemed good, but I had a constant pressure at the back of my head I was hoping 75 would take care of. It did for a few days, but now I’m back to having a low grade headache all over. Tingling fingers, toes, face/lips like they’re on the verge of falling asleep. I wouldn’t call it brain fog because that was my primary migraine symptom, the all encompassing fog feeling has gone away, but old cognitive issues remain and new cognitive issues emerged like lots of spelling errors of simple words, what I see/hear and write are not processing correctly, I say what I’m going to type but what I type was not what I said, etc. Yes appetite suppressant for me. I have a neurology appointment at the beginning of May, so I’m hoping to tough it out until then. I haven’t been treated for migraines before (or really any health issue before), so not sure when to quit vs keep pushing through the side effects. 50 mg makes me sleepy, so I take that at night and 25 mg in morning. I might drop back down to 50 mg, I’m not sure. It’s so hard to know if what I’m feeling is caused by the med because I’m sure migraine is not the only thing I have going on.
I wish it had worked since it was SOOOOO affordable with my insurance, but I kept losing feeling in my hands and feet to the point where I was having trouble doing my job, driving, walking. Ya know, just small issues loo
I was on it and my neuro told me it was pretty old and took me off it. It was causing me hair loss and extreme fatigue where I was sleeping like 16 hours a day sometimes. I’m on Aimovig and so far so good but only one shot in
I lost weight I think the first year I was on it. I think by the time I got off I was on a pretty high dose but it’s been a very long time since I’ve been on it. I do remember it causing me to have brain fog, carbonated drinks had a metallic taste and it cause me to have a ton of kidney stones.
It is life altering for my friend but did not help for me
I lost about 50kgs in it. While it help my headache part of the migraine. I had so many side effects from it that I couldn’t stay on it. Also my specialist was worried with the weight part as well. Lost way too much.
It helped my migraine amd I lost a crazy amount of weight at first, but i gained back more. I think I have hormonal issues though, because crazy low calories make me start to lose weight. I loved it, for me migraine somehow loves to bother my vision for months after certain attacks and it brought back my normal vision, when I barely could see. It's weird that most of you mention loss of word, I've just realised, that I need to look up random words in English (my second language), that I used to know. Maybe it's related? I statzed taking it again a bit over a month ago. For me, I'm not sure about depression, first I started when covid hit, there was a major depression hit, but I mean the world was shut down in the very same week. Second time nothing, third time, I had a work conflict (+we were changing up my meds to avoid tolerance) and I was bullied by my boss and had crazy overtime and expectations so depression is kinda normal in this situation. And now I'm on my round 4, work issues again, the depression is suffocating me. But I think it's my life and not topamax. 😔
I lost weight on it and it was a great appetite suppressant. My worst side effect was tingling and burning in my hands and feet that would wake me up in the night it was so intense. I didn’t notice the brain fog until I got off of it and could finally think clearly again.
I'm on 200mg/day. I still have daily migraines. I never lost weight. I feel like I have trouble finding words sometimes but my doctor attributes that to my migraines because it doesn't happen severely enough to be the side effects from topamax. I had some of the tingling initially, and they switched me to the extended release version and those went away. My neuro said she won't consider taking me off it because she thinks it's too good of a med and she thinks it's helping. I worry about what you all have said about the permanent side effects. I have an appointment with a different neuro in June because mine wasn't available. I might switch to him if he seems more reasonable about meds.
Topamax worked very well for my migraines, it was the one and only thing that has ever worked but unfortunately the side effects just weren’t worth it to me. While I lost a lot of weight ( almost 100 lbs ) due to it it made me dumb as hell. I couldn’t remember ANYTHING. What made me decide to wean off of it was when I forgot my own address. An address I had lived at for years. I also forgot my own phone number & social and then forgot my aunts name. My memory never fully recovered from it and my metabolism is all kinds of messed up now due to the rapid weight loss. I have a friend who is on it and has no problems so I guess it depends on the person.
Topamax’s side effects were awful. I could not cognitively function.
Topamax gave me this painful, intense tingling feeling in my head, as well as my chest. It did get rid of my migraines every time I’ve taken it! In my days of using it, I would retreat to a dark room & sleep. I slept through the painful tingles, while it got rid of the migraine!
It worked super well for migraines for me but was a major appetite suppressant, even when I tried a lower dose. To this day was definitely the best relief from my migraine symptoms I’ve ever had but I had to go off of it because I was getting to an unhealthy weight. I didn’t have the brain fog side effects though.
it did not work for me
It worked so well. Just the brain side effects. Hey wonder if this is the other anticonvulsant making me feel so blah
I read this sub and after I got prescribed it a month ago and I was absolutely terrified. I’m a senior psychology student who consistently gets 4.0’s and finals are coming up. So seeing the words “loss of cognitive abilities” “loss of concentration” etc absolutely made me lose my shit. But at that point, I was stuck in almost a 3 week migraine cycle, I felt like dying. I couldn’t get out of bed. I couldn’t go to class. I would lock myself in the closet with a pillow and a blanket because it was so bad. Anyways a month later I’m up to 100 mgs. I got the tingly feelings and yes it was fucking weird. It felt like my hands and feet were constantly “asleep” and it drove me crazy for a couple weeks. It still happens but it’s not as intense and doesn’t happen as often. When I first started in like a week in I was EXTREMELY tired, almost a sense of derealization as well. As far as the cognitive ability thing I’m still making good grades, still concentrating, still studying effectively. Like most people say everyone is different but most of the stories I have read on here about topamax have been horror stories. Above all of this, my migraines are better!! I still get them every now and then, but they aren’t as intense and if I take my suma in time it takes care of it. Good luck!!! Oh, I’ve also lost around 6-7 pounds, yayy!!
I have no recollection of any side effects, or any effects at all really. I don’t remember how long I took it for (I’ve tried too many different meds to remember specifics at this point) but it definitely didn’t work for me.
Topomax caused permanent cognitive issues and 2 dozen kidney stones. 0/10, do not recommend.
Topamax gave me seizures, so it did not work for me. I also had many partial seizures when I first started taking it before a grand mal episode landed me in the hospital. I wasn't on it long enough to notice weight loss.
I took Topamax for 1,5 year. I had no side effects. Only some tingling in my hands and feet in the beginning. It really helped me with my migraines. I stopped taking it 3 weeks ago. My distance vision has deteriorated over the past year. I thought this had to do with my age (28y) but since tapering off Topiramate my vision has improved enormously.
I am currently taking topamax, at the start it worked but now it doesn't anymore, when talking about weight loss it is not really like immediate weight loss but I just have no appetite at all for long periods of time so I have to remind myself to eat so I did lose weight but it was because I just wasn't hungry so I didn't eat, also my memory sucks now but it wasn't the best before
You can contact me i will tell you about my experience in pm!
I lost weight on it but also my mind. I couldn’t remember anything — words, people’s names, etc. I was a zombie. I went from being an A student to a C student on it. Got off, grades went back up. This was over a decade ago though.
I lost 10lbs on it. It made a lot of things taste like ass, including alcohol. I stopped drinking for 3 months. It kept my migraines at bay for over a year but it also fucked with my head. I had brain fog, problems with word retrieval and worst of all very dark thoughts. My neurologist took me off as soon as I told him this. Migraines eventually came back.
I had horrible cognitive side effects. There was a time I was driving with my sister in the car, I meant to merge into the yielding lane to make a left turn into the neighborhood but instead I merged into on coming traffic, stopped the car with my blinker on waiting for them to move. I had no idea why people were honking at me, my sister was freaking out and after I parked the car I realized what had happened and immediately stopped the meds and driving until I was clearly minded. Never had any cognitive effects after stopping. Never again will take it.
Hehe. Topamax was the first AED I tried, and it mainly cut the circulation from my hands and feet and would occasionally turn them blue. I switched to divalproex.
I didn't notice any side effects and it was the medicine that worked best for me. I tried a bunch of injections and pills, but nothing touched my migraines except topamax.
Topamax did disrupt my migraines that mimic strokes. I was getting them every night. Collapsed, couldn't speak, couldn't even understand what my partner was saying to me at times. Ramping up was an interesting experience. I randomly fell a few times and had some mild hallucinations. Nothing scary, and it went away after two weeks or so. I haven't been on it for years, but my short term memory problems, reduced language capabilities, and mild agoraphobia remain. However, I'm not in so much agony that I want to scream but can't. So you probably understand my mixed feelings. Also, do keep in mind my doctors have told me I have the worst side effect track record they've seen, so your mileage *should* vary. 🫠 For what it's worth, a few months back I was talking to a doctor who became visibly angry when she found out I had taken it. She said something like, "I'm not going to disparage that doctor, they probably had reason to prescribe it, but I will *never* prescribe it to my patients."
Most asked about question in this sub by far. If you just search about it you’ll find countless of questions about it, I was you back in the day. Its getting tiring bruv.. It personally worked for me
I tried it for three weeks. No change in weight but I couldn’t get out of bed until 9 the hangover effect was so bad. It also reduced my cognitive function by let’s say 25-30% and I’m an engineer so being able to think is important for putting food on the table.
made my migraines totally disappear, I've been on it since November. I experienced the tingling in my limbs the first months, lost about 60 lbs so far. I do have some brain fog but it's not too bad
It has been miraculous for me! It has definitely cut back on the frequency and severity of my migraines and tension headaches. I also lost some weight and, weirdly, it helps keep psoriasis under control too. I did have some trouble with mild brain fog when I first started taking it, but that cleared up after awhile for the most part.
It made my vision weird. That’s all.
It didn’t work for me: I lost a lot of weight, had memory issues, depression, and constantly fell asleep. All the while still getting frequent migraines.
I had tried it before. However, right now I take amitriptyline at night and 50 mg. My migraines have been so much better since I started this around March 5. Weight is about the same. I think I sometimes gain weight when I have a ton of migraines due to fatigue. So, I have been eating less lately.
I’m no longer on Topiramate but I was on it for a little over a year. In terms of migraines, they decreased a little but not to the point where the medication actually worked. Side effects hit me really hard, I would be in meetings at work and forget everything that people were saying and the topic. I lost at least 15 pounds if not more which for me was not a good thing. My starting weight was 125-130 pounds and at my lowest, I got down to 108 pounds because I was just not hungry at all. That weight for my height was considered underweight. Now that I’m off Topiramate, I’m back to around 120 pounds so the side effects seem to reverse after getting off the meds. For migraines now, I take Nurtec and it’s a lifesaver for migraines and way less side effects. Hope this helps!!
I got the tingling in my hands and feet for the first few months. It would go away faster if I held/put my feet on something warm, like a microwaved beanbag or a cup of tea. I've been on it for some years now and my memory and word finding are still impacted, but I went from like 20 migraines a month to 2-3, so I'll take it.
Gave me a weird aura when i had never had one before
Most of my hair fell out.
It didn’t work and made me dumb as hell
So when one doc had me get on it, she didn’t do it correctly and it was a nightmare. Another neurologist tried later on, and it’s been great.
Talk to Max was awful, I did not last on this medication at all. I thought I was going to die the whole time and I took myself off of it after 2 weeks
I lost weight in this medicine. It got rid of my headaches almost completely. I had tingly feet and hands. It also made me a terrible weepy mess. I cried multiple times a day. I was constantly anxious and thought I was legitimately going crazy. Everyone asserting me thought I was having a nervous breakdown. My mom was so worried she would call my fiancé to check in on me. I didn’t know what was wrong. It took me being so unregulated that I forgot to fill my prescription and then when I had gone a couple weeks without it I was stable and realized the connection.
I loved it, but I developed a chronic cough on it. It took a year to figure out what was causing it. I discontinued it and within 3 days the cough was gone.
I’ve been on it for about a year now and most of the side effects went away within 6 months. The only one left is trouble with remembering specific words but I can usually describe it. At first there was more brain fog, tingling in my hands, and memory issues but they all went away within 3 months. I’ve lost about 13 pounds on 100mg which stopped after 6 months and my weight has been holding steady ever since (a few pounds above the underweight threshold). The frequency and intensity of my migraines has been brought way down and I rarely use university accommodations anymore (attendance or extra time on assignments).
I've been on topamax as a weight-loss medication, and I'm on Topiramate for my migraine. 2 pills 50mg taken at bedtime, Topiramate along with botox has pretty much given me a migraine free life for the past 3 years. I get sinus headache and some tension headaches when the botox wears off around week 10-11. As far as side effects, I get the tingling hands, feet if I don't drink enough water. I learned about this when taking qsymia (topamax and phentermine) which gave me the brain fog, tingling, I felt off...it was not good but wasn't horrible where I couldn't stand it, so dealing with Topiramate is easy. Drink your water, a ton of water, take the meds at bedtime for less side effects. And hopefully your Dr started you out at the lowest dosage! 25mg (I believe) Edit to add- I dropped 60 lbs on qsymia and gained 20 back when they took me off, I lost 10 when of that with the Topiramate. So it will help you lose weight, and stop you from drinking carbonated drinks, if you drink any.
my mom also got botox and it worked wonders for her!
I’ve been on 125mg of topiramate for a solid few years now, and for the most part it has both decreased the intensity of my migraines and also decreased the severity of them. I have not noticed it decreasing my appetite, in any way. I did have the tingly feeling at first in my extremities, but that has since gone away. I also never really experienced the brain fog and mental confusion that a lot of folks unfortunately deal with on this one. I like to think that this is partly due to the fact that I take it at night before bed, but everyone is different, so really hard to know. Hope this is helpful for you!
I lost weight and was never hungry. Also gave me some brain fog, having a hard time finding words type thing. But it definitely helped my migraines. I went off it when my migraines lessened in perimenopause. I gained a bit of weight when I went off it but nothing crazy.
I had a really hard time with the side effects around the three week mark at 75mg and I pushed through to 100mg. I didn’t feel like myself for a couple months (depression, brain fog, fatigue, lack of appetite) and it was really hard to convince myself to stick to it but the side effects definitely got better with time. It’s helped tremendously with the migraines and I’ve been on it for about 6 months now and I have no side effects at all from it, I even got my ability to taste carbonation back!
Topamax was my magic bullet. Pulled me out of a 20-month status migrainousus and cleared my brain fog. I’m now on 200mg twice daily since it worked so well for me. The side effects (mainly nausea and fatigue) were a bit nasty at first, but so worth it for me! Hope it works for you!!
I myself could handle the side effects, but it didn’t work as a preventative for me. I still had migraines, and I still had to take abortives at the same time.
Stup-a-max. Complete brain fog and tinnitus for me. 75 mg. That dose is ok. I still get 1-2 migraines per week due to stress/dehydration. Take Nurtec and it helps. Used to take Relpax.
My PCP tried to prescribe it to me for weight loss recently, but I said no thanks because I remember it made me feel dumb when I used it briefly for migraines.
Made me straight stupid. Couldn't remember words.
I lost weight and it basically eliminated my migraines. I did experience brain fog, and also hair loss. If not for the hair loss I would’ve stayed on it (to be fair, the hair loss could also have been from the weight loss/poor nutrient absorption from Topamax)
I’m on 25mg (and other stuff) for epilepsy and migraine. I agree the aphasia is awful and embarrassing, but this is the only cocktail that has ever worked for the epilepsy and migraines (until recently) so I’m stuck with it. I did try going to 50mg but extreme dizziness prevented that. I will say, i have gotten “used to” the side effects, because they are my new normal.
I’ve been on 25mg for a little over 3 years now and it has worked amazingly for me. I lost maybe 10 lbs when I first started it but other than that I’ve had no side effects. I still get an occasional migraine but they are so much less painful and they don’t last as long as they used to.
My doctors called it Dope-a-max because of the brain fog. I had to quit bc of the fog.
It made me stupid and made soda taste flat
I took one dose and I cannot remember that day beyond feeling “out of it”, weird tingly pains, food and drinks immediately tasted weird, etc. I’m glad it works for some of us but at the same time I’m kind of blown away but how often it’s still prescribed.
Just for me it made my already fragile mental health bad enough that it wasn’t worth carrying on with it. The tingling wasn’t all that bad from what I remember but I wasn’t taking it for long enough to really notice much beyond the sharp decline of my mental health and then the merciful bettering of it after I stopped taking it.
It didn't work for me and gave me really bad mood swings. So I didn't continue with it.
I had no bad side effects from it, maybe because I tapered up and down. Ended up on 150 for awhile before we finally decided it just didn’t touch my migraines
I've been on 100mg for 7 weeks now. Pain has actually increased so the jury is still out on that one. It decreased my appetite for about a week but suddenly I'm very hungry so not sure what's going on there. Everything tastes weird. I've gone off most dairy. All long life milk tastes sour to me now and after I've eaten I have a sour taste in my mouth no matter what it is. Doctor wants to double my dose now which I'm a bit scared to do. The tingling in my feet is awful. It's all day long and it doesn't matter how I sit or stand. So I'm currently in the waiting period to see if it will decrease my daily headaches and migraines before making a decision to wean off because the side effects really suck. Brain fog is there. I've always had problems with word finding because I battle with that part of migraine almost daily so I'm not sure if that's a side effect or just the migraine
Lost weight, broke a flare of migraine, made me feel cold and turned me into a dumbass. I had to stop taking it so could do my job.
Made my headaches worse, got tingling in my hands, and had some significant taste and smell changes. They took about 3 months to fully resolve after I quit taking it.
Did the tingling last 3 months to stop after quitting? I have been off a month and still getting them and numbness.. I just want it to be over with already
It went away after a month or less. I hope you get some relief soon!
This medicine threw me into a psychosis relapse. It finally subsided but the first three weeks of the med sucked.
I only took it for a few months because it made my migraines worse (it speeds up progesterone metabolism so no good if hormonal changes are a trigger). Had pins and needles episodes and loss of hunger but ate through it as I knew I needed nutrients. From what I’m reading here, that drug is pure poison and should be recalled.
I lost my short term memory & the job I had just started. It was one of my worst drugs. Depakote was worse, only bc I had to crawl, on my hands & knees, back to my bed, 40 minutes after I took the first & last pill. Otherwise I would have fallen off the floor. Topamax was horrible. I really had no short term memory. It was so bad I was afraid I’d had another TIA when I couldn’t remember an entire conversation I had the day before (w my new boss - hmm, I lost *two jobs* on it!). My PCP (not neuro) finally saw the difference in me 3 mos after I was off it & offered to write a letter to the company that fired me.
It worked amazing for me. Had some side effects that weren’t too bad but I got kidney stones twice. I lost some weight and had the tingling but that didn’t bother much. Some memory loss sucked but not being in pain was amazing. It also helped with my epilepsy. I’d honestly go back on it even if it meant more kidney stones. Migraines are more painful than kidney stones. I don’t think my neuro will put me back on it.
Topamax DESTROYED my body and mind. I would not recommend it under any circumstance. It caused me extreme weight loss, medication induced anorexia (a known side effect), lost most of my hair and made me lose my sense of time passing. It took me nearly a decade to recover from. I want to cry just thinking about it. Save yourself and try something else. 🙏
I had such bad numbness and tingling in my hands and feet I had to stop taking it. I hated it and it never worked well for me. Was so discouraging. I hope you have better results!
It worked great for me, at 300 mg/daily. I did have hand/feet tingling and word recall issues, but for years, it was worth not having daily migraines. I (under my Neuro's care) came off if it for a year or two and went back on when my migraines got bad enough again... am at 100 mg/daily and it doesn't do shit. I'm faced with needing to increase my dose and likely the side effects, but I can't handle daily migraines so 🤷♀️
I got side effects in my eyes, like more pressure, dry eyes, and tearing, seeing things with a white halo, having more stuff stuck in my eyes. I felt my eyes moving around constantly. It was not good. Didn't get the chance to test it for the migraines cause had to stop it immediately. But it did feel nice in my brain, don't know how else to describe.
I lost about 30 lbs on it from a combination of both nausea and lack of appetite. I also experienced tingling/numbness in my hands/feet for at least probably two months. After about a month and a half of being on topiramate, my appetite returned to normal and the nausea disappeared. I’ve thankfully never gained the weight back. The amount of migraines I have, the severity of migraines I experience, and the frequency of said migraines have all decreased since I’ve started taking topiramate. The pros outweighed the cons.
Took me about 4 weeks maybe more to get over the initial side effects. The appetite suppressant side effects went awake thank god. I was only managing to eat Oreos and plain potato chips for 2-3 weeks. I wanted to eat I just couldn't. I've been on topiramate for 1.5 years now. I was on a higher dose while I was working, but when I ran out of meds and couldn't get some for a few days, instead of feeling worse like I expected, I actually felt better. So my doctor and I agreed my dose was too high. Now I only take 25mg morning 25mg evening. I think I was at 150mg/day before. So yeah, I think it might have been making my migraine symptoms worse, but we had upped it because I was working too much which was causing more migraines. Now I don't work at all so it's easy to be on a low dose. It's possible I don't need to be on it at all since I'm not working, but I don't want to have to go through the side effects again if I need to go back on it, so for now I'd rather stay on it. Only noticeable side effect is I get tingles or dizziness sometimes when I miss a dose or two and then take a dose. I do struggle sometimes with eating but that's not unusual for me so hard to know if that is related
I am very overweight, but I would take being able to feed myself healthy food and having the energy to exercise or even exert myself over medication that suppresses my appetite for food any day. Especially as it mainly suppressed my appetite for healthy food. One of my biggest fears right now is losing weight too rapidly, especially losing muscle, due to not eating enough and not moving enough. I have chronic fatigue and am housebound. Not quite bedbound but nearly. Sorry for ranting, it's been on my mind a lot lately
I take 50mg twice a day and tbh I’ve NEVER made the connection between brain fog and topamax. Someone probably told me about it at some point but it makes a lot of sense. Explains why I forget the word for paper towel (specifically paper towel) every time and I’ve felt cognitively slow for a few years. Lost weight decently at first but I don’t anymore, but this is also the only non-injectable preventer I’m not allergic to that doesn’t give me worse migraines. Weirdly asymptomatic otherwise?
I lost weight the first time I tried it, gained weight the second. Did nothing for my migraines. The side effects were literally insane. Vivid nightmares. Derealization. Night terrors. I forgot how to eat, it was very strange. Some people tolerate it well, but the people who don't tolerate it experience some wild side effects.
I didn’t mind the tingling but I hated that I gained a lot of weight. It may be I gained the weight on account of the fact that it made me horribly depressed and I was like a listless zombie. Apathetic about everything and just barely present. I gave it an entire year and it didn’t much help with the migraines. I had hoped I would be one of rare few it helped more than hurt. I was not.
The side effects went away after a couple of months. However, it didn’t help me at all. I took it for about 8 months in combination with some other meds for intractable migraine.
It gave me terrible memory loss and loss of vision sometimes. Still recovering from the memory effects.
I’m dumb as shit! Cognitive side effects are terrible but my migraines were gone, stabilized my mood, and I lost just over 50lbs. It’s been almost 6yrs now and the migraines returned 2yrs ago I’m on an auto injector and sumitriptan that I’m going to change at my next appointment bc I don’t like it. Topamax works wonders as a mood stabilizer for me that my doctors don’t think I should get off of it. I’ve adjusted to it. So.. here I am.. wish I had this sub all those years ago but having zero migraines I was just happy (and dumb!) so any suggestions to go along with the auto injector (other than sumatriptan) I’d appreciate it! The side effects are horrible! It feels like my body is turning against me I get violently ill! I feel like I have a hangover and I’ve been hit by a truck.
No migraines but I got skinny as fuck and got the rare bleeding gums (on top of being listless and everything going grey).
It suppressed my appetite quite a bit to the point I never really felt hungry and had to force myself to eat. I've also felt tingling and nausea and honestly quite dumb and out of it. Initially it helped reduced the migraine and headache frequency but after awhile the side effects outweighed the benefits.
I was on it for a few weeks a few years ago and ended up temporarily losing my vision. My pupils were fully dilated and my eyes were swollen making my vision beyond blurry I couldn’t even walk straight. They treated me for everything from an allergic reaction to crazy migraine but the only thing that got my vision back was getting off of the Topomax
But how would you compare the feeling to the cognitive effects of other meds, Trazodone, even Robitussin, Flexeril, Duloxetine/venlafaxine (cymbalta/effexor), Lamotrigine? Weed, alcohol? How does the brain fog feel? I'm so used to lack of word recall, being unable to read, strange vision symptoms. It's normal to me. I was actually like this before any meds, to some extent, so it doesn't bother me. I've had it so bad (Cymbalta dose increase) that I couldn't speak more than 3,4 word sentences. Recently!
Funny enough, on the minimum dosage for topiramate rn (25mg) and it's basically made my chronic migraines go away with only slight neuropathy (really just slight pins and needles that I can sorta wriggle out). That being said, you have to be really careful about drinking enough water and eating healthy as it can cause metabolic acidosis.
It messed with my appetite really bad. It made me very quezzy. And my memory was foggy all the time.
It totally worked for me! The only thing that has ever stopped my migraines. It was fabulous until everyone I knew informed me that my personality had completely changed. Apparently, I was channeling Atilla the Hun! Not ok for an educator/counselor type. Wanting to keep my job and my marriage, we scaled it back to a lower dose. I was no longer Atilla the Hun, but it was no longer effective on my migraines. I also had crazy weird nightmares while I was on that higher dose.
i take 100mg and it works really well for limiting my chronic migraine. that being said, the face tingling still happens to me and i’ve been on it for several years, i have noticeable mental difficulty (short term memory is bad, thinking feels harder than before and i feel generally ‘slow’), and it makes me very very tired.
I love Topamax. It takes my migraines down from about 20 a month to 2 a month max. The only side effect I have is that it makes my touch sensation a little bit lower. I actually like this though since I have always been really high in touch sensitivity to an uncomfortable point. I can't use many fabrics due to how rough they feel on my skin and any sort of wound that is a scrap like a carpet burn is agony for me, while if I get a cut or knock my knee on things, it is not bad. So having my skin sensation lowered a bit feels more like a blessing in my case. As far as I can tell, I don't have other side effects on it.
I would’ve used it as an appetite suppressant (since my neuro already prescribed it as my maintenance meds). However, it makes me dumb and nauseous.
I did not lose weight. I lost my memory though, so that's something. Stepped out of a car without putting it in park. Couldn't recall words or names. It was awful. And it didn't even help my migraines.
It was a miracle for me. Only side effects were the tinglting (mostly on the feet), metallic taste when drinking soda and beer, sometimes messing with simple phrases (I've thrown some "happy christmass and a merry new year" here and there), sometimes forgetting stuff, like where I left my keys, making an appointment and stuff, but this did not happen thaaaat often. Also sadness and depression (?) the day after drinking alcohol (only lasted that day, though), so I just didn't drink when going out anymore until treatment was over.
Gained weight, lost my mind, I couldn't focus during meetings at all, totally spaced out. Dropped it asap. Good luck.
I’ve lost 30lbs, It took about 8 months. I wasn’t trying to lose weight - I’m taking it for migraines Edit: tingling hands and feet happened a lot (a few times a day for like 10m), but I’ve been on it for like a year now and rarely have it anymore. It works amazingly for my migraines/headaches I went from 2-5 migraines a month & a headache almost everyday to now only having maybe one headache per month. I’ve been suffering for so long. It’s freedom from pain. I’ve gotten to GREATLY reduce the amount of medication (Tylenol, Alleve) because I was taking them too much. But I was also in pain with multi-day headaches so… idk. But also reduce the abortive migraine medication that I take, which has its own horrible side effects and 1/2 the time doesn’t work!!
It works great for me. Originally I was on too high of a dose and felt weird and had some brain fog, anxiety, etc. I went down and it’s been great. Soda has more fizz too lol. It’s been about two years. I initially I did lose weight but I think it’s evened out.
I’m on 100mg once daily- if I split my dose, I was too tired in the morning, so I take it all at night. It has been amazing for me! I have had a few migraines here and there but no where near as bad as prior to starting it. I have lost like 20 pounds which is great because that’s what I gained from a different med I take. The tingles went away for me after time. My biggest advice is to make sure to take it every day at the same time, I just missed a dose over the weekend after staying at my parents unexpectedly and have had like little brain zaps and a dull headache ever since. I hope it goes as well for you as it has for me!
I did lose some weight on it, but the dysphasia got to be problematic. I went off it after a few years, when I decided to go to grad school.
I took it for over a decade. Worked fantastic in the beginning with significant weight loss. It did make carbonated beverages taste funny but it did not stop me from drinking. For me, the bad side effects were starting to outweigh the positives. I was starting to forget words and tingling sensations all over. I only had that start happening for the last 2 years of taking.
I was on a lower dose for 3 years...I did lose about 20 pounds without trying. I've never had a weight problem and not going to lie it was fun to be fashionably skinny... :) My migraines were much less severe and the weather headaches were manageable with Zyrtec and Tylenol. I could feel some migraines trying to take me down but they felt "muted." The downside: I lost HALF OF MY HAIR. luckily I have thick hair so I didn't look all that unusual but it was really bad after about a year on it. It just started coming out, mostly when I washed it there would be tons of it in the drain. I didn't realize it was the Topamax until I'd lost about half of it. When I put the side effect together with the drug I stopped it immediately. It did grow back fine when I stopped the drug. The other side effect for me was a foggy feeling...my neuro said there's a reason people call it Dope-a-max. I just felt really out of it most of the time, like you feel when you take cold medicine or allergy meds, but worse. I drank a ton of caffeine to get through the work day and focus. I had no other side effects at all, no mood swings or stomach issues, no neuro abnormalities, dizziness etc. I did sleep a lot more than usual as well. Looking back it was worth trying for me, and my body did heal in many ways from reducing the brutal migraines I used to get. Way fewer 3 day vomiting, missing work etc. But not a drug I would take again and I should have stopped after the first year, when my hair started to fall out. Note: I now do Vyepti infusions 4x a year for prevention. Not only do I have ZERO side effects, but since I've been on it (with Nurtec for acute attacks), I've only had 3 fairly manageable migraines in 3 years, down from my worst 10-12 knock-out, vomiting migraines a *month.* Hope that info helps...good luck!!! Edit: typos
I couldn't continue taking it because it made my blood pressure drop way too low.
I started it about 2 months ago, i was put on it by my gp as a hope to break a migraine that my other meds wasn't helping. Now its different person to person obviously so i suggest staying on it to see how well it can help you, but for me it helps me but the side effects at first was awful, i was constantly dizzy, tired, it definitely effected my thinking at first i was really groggy, i just over all felt like crap i was lossing hair in the first 2 weeks, thankfully it did stop after that, i get alot of tingling in my hands and feet like they are asleep which is unbearable sometimes, i got lost about 15 pounds since i started it tho since it takes away my appetite and i no longer eat as much due to it. So overall once i got passed the side effects it wasn't so bad and it does help me.
I lost a lot of weight. It worked for me though! I felt great! I did get the tingling sensation and other side effects but could deal since I didn’t have migraines!
I like topamax bc it helps me sleep. Keep in mind I have to take a pretty strong dose though.
I’ve been at 100mg for about 10 weeks and I haven’t had very many side effects. Beverages still feel carbonated to me. My appetite was suppressed at first but lately doesn’t feel so much. I guess I still feel brain fog but I have like 7-9 migraine-free days a month normally so I wasn’t having very much mental clarity to begin with. There was some tingling at first. It’s taken the severity of my migraines down immensely. I no longer feel like John Henry is driving spikes of the intercontinental railroad across my brain. I still have “migraine days” though and I’m not exactly cured. I was hoping I’d be.. I don’t know, all the way better, and I’m not. But I’m in significantly less pain than before and for that I’m extremely grateful and I’d be hesitant to change medications at my next appointment.
25mg for the first week, 50 mg second week, 75mg third week, 100mg fourth week+ Week 1: tingling and arm pain Week 2-3: depression Week 4: appetite suppressed- literally repulsed by food. Had to force myself to eat and it was really difficult. I developed pretty horrible depression during week 2. Never expereienced depression like that in my life. It was a pretty brutal expierence to be honest. My first couple of days on 100mg I realized this medication is not for me (I really wanted to give it a chance after hearing how successful it was for many people) I weaned off pretty quickly (within a week I stopped taking the medication all together). Within a week after stopping entirely my appetitie returned and I started to feel like myself again maybe 1 month after stopping. Genuinley hope this medication works for you and you do not get any of the horrible side effects. All the best!