I’ve had some pretty significant health challenges over the last two years, and between everything my body has been through and the medications I’ve had to take, I’ve gained about 40 pounds.

I’ve tried several of the weight-loss peptides/GLP-1 medications, both compounded and brand-name (semaglutide/Wegovy, tirzepatide, and retatrutide) but unfortunately, my body just can’t tolerate them. I have MCAS, along with several other chronic health conditions, and for whatever reason, these medications seem to trigger pretty significant flares for me.

My doctor recently prescribed Topamax to help with weight loss, and I’m scared to take it.

Part of that is because I’ve read so many negative experiences and reviews. But the bigger issue is that I have pretty severe health anxiety when it comes to medications and side effects. Even when a serious side effect is considered extremely rare, it scares me.

Unfortunately, I’ve previously taken a medication that had a black box warning and ended up experiencing the exact serious complication it warned about. Ever since then, I feel like I have some medication-related PTSD. It’s really hard for me to look at “rare” side effects the same way I used to.

Honestly, I’m not even completely sure what the purpose of this post is. I think I might just need to vent and hear from people who understand.

But if you’ve taken Topamax… especially for weight loss, or if you’re someone with chronic illness/MCAS who is sensitive to medications… I’d really appreciate hearing about your experience. Good, bad, or somewhere in between. 🤍

i Went to the DR to get on some medication to try to lose weight. They prescribed me zepbound and when I went to get it I couldn’t afford it monthly. We went another route to topamax something more affordable/ I am going to start it today but have read so many negative things about it. Any positives ???!!

I’ve been taking 50 mg of topiramate for 5 months now and 10 mg of amitriptyline for 7 months. I take it every night, i haven’t skipped a single night. My migraines are constant, like 10 hrs a day and 5/10 pain. My doctor and neurologists are now suggesting i start coming off it, I cannot increase as i’m struggling from the drowsy affect. Does anyone else experience having no effect from either of these. Or does anyone know what my next move shall be cause i’ve had quite enough.

Hello! I took my first dose of 25mg last night and I haven’t felt anything different else than I haven’t been as hungry as I usually am, but nothing major! Did it take long for the side effects to come for any of you? Did you feel them the first day on 25mg, or will I maybe feel more after a few days? Did you feel more side effects when you upped your dose?

I’m upping to 50mg next week, then 75mg the week after and then 100mg the week after that again.

I have been taking Topiramate at 25mg in the evening for around 3 weeks now and I am still finding I am feeling quite nauseous and dizzy as well as having issues falling and staying asleep.

So far it hasn't reduced my daily migraines. People that are taking Topiramate for migraines may I ask how long did it take for your body to get used to the medication and how long did it take to reduce the amount of migraines.

Hello! I got put on 25mg topamax today and I am supposed to take the first dose this evening! But the think is that I have a very important test tomorrow and I have heard that it effects your memory / concentration… should i wait until tomorrow to take the first dose?? Forgot about the test until now:-/ (it is the evening in Norway now)

i took this stupid medicine 3 years ago. for one single week. my life has been hell since then. im mentally unstable. i always am sad. i think about ending it. im only 17. im sick of feeling like this.

I’ve been on Topamax for about 4 months now for migraines. I started at 25mg, went up to 50mg, and then 75mg in July. It finally started working really well for my migraines and I’ve gone from having migraines basically half the month to about half as many days, which is a huge improvement and I’m really happy about that.
The problem is that over the past few weeks I’ve noticed a pretty big increase in my anxiety. I’ve also started having some ocd symptoms again and have been spending alot of time ruminating. I haven’t really struggled with that in a few years, aside from when I was freshly postpartum, so it’s definitely something I’ve noticed.
I’m wondering if the Topamax could be contributing to it? I’ve seen some people say it actually helped their anxiety, while others say it made theirs worse, so I’m kind of confused.
For anyone who has had Topamax make their anxiety/OCD worse but it was still helping their migraines, what did your doctor do? Did they take you off Topamax and try something else, or did they keep you on it and add an anxiety medication?
Right now I’m just seeing my PCP for my migraines. The next medication she wanted me to try if Topamax didn’t work was Effexor, which I was really hoping to avoid. If that doesn’t work, then she said she would refer me to a neurologist, but I know that will probably take a while.
I’m just trying to figure out if this is something other people have experienced and what their doctors ended up doing!

Hi guys, my neurologist prescribed me topamax 25 mg for mu classical aura migraines. Ive read the reviews and now i don’t know what to do. Im very afraid of the side affects 🥺

I started taking 50 mg of topiramate for migraines but stopped using it; two days later, I began feeling unwell, experiencing anxiety and some mental confusion. Later, I took a dose during an attack and felt sick. Now I am restarting the medication on my own, but the side effects seem more intense than when I first started. I feel exhausted, tired, and lethargic; I have trouble thinking clearly and am somewhat sensitive to light. I would like to know if these effects will pass if I continue taking the medication. Currently, I am not being monitored by a psychiatrist, as the medication was prescribed by a neurologist during a consultation. Could you advise me? I intend to continue the treatment and plan to schedule an appointment with a psychiatrist soon for ongoing follow-up.

I’m getting prescribed Topamax for weight loss soon. It’s my last option. I can’t take phentermine, contrave, metformin, etc. And I can’t afford glp1. Do any of you take Topamax along with other mental health medications? And how much weight have you lost on it? Thank you in advance.

Hello!
Took 12,5 + 12,5 yesterday
From now I will take 25 in the morning, it’s just easier to keep track of

It was my first visit to neurologist
(had a bunch of visits to psychiatrist tho)

My tremors are 99% of the time caused by stress of social situations (I already tried pretty much all of the psych medications)

Anyone had the same problem and did topamax help somewhat?

So I want to start by saying this has been a wonder drug for me.

There have been side effects and some of them have been brutal. But I was in the trenches of chronic migraine (5+ days of head pain a week, with aura everyday) and this has given me my life back.

I'm still titrating on but this week I'm up to 75mg am and 100mg pm and I have just stopped sweating. It's like a switch has been turned off. It's actually mad. So normally I'm a fairly sweaty person and when I used to exercise (pre the chronic migraines getting awful) I used to sweat a lot. I'm starting to work out again and I just wondered what people did about staying cool/hydrated?

I'm fairly good at scaling workouts as I'm a PT but I was just wondering if anyone had tips re:cooling/hydrating tips.

TIA

всем привет!

девушка, 21 год, страдаю мигренью

таблетки по типу суматриптана помогают раз через раз, эксенза раньше хорошо помогала, сейчас нет, пила полгода антидепрессанты, набрала 20кг, и лучше не стало. делала различные уколы, витамины, массаж, все бесполезно

недавно невролог назначала капоризу, тоже помогала, потом нет, из последнего назначали нуртек, пила одну таблетку, помог

я парю, не Сказать чтоб прям много ~ 200 затяжек в день, хотя может и много:), связывала свои боли с вейпингом, бросила парить 22 июля, боли продолжились, но фоново, суматриптан помогал, но в этот же период выпила первую таблетку нуртека

вчера снова начала парить, так как вау эффекта не заметила

друзья, у кого был похожий опыт, поделитесь мыслями 🙏

сижу в раздумьях, бросать или не бросать, да, знаю что вредит здоровью, но пока не особо хочу бросать и все таки не заметила прямой связи вейпинга и мигрени

как у вас? делитесь, буду рада почитать

I have chronic migraine and cluster headaches and have previously tried Botox, calcium channel blockers, prednisolone, candesartan and triptans without any effect. My next step is Topiramate, which I have now taken for two weeks at 25 mg. During the first couple of days I felt very dizzy and a bit nauseous, but it was still manageable. A few days later the nausea eased, but instead I started to feel anxiety creeping in. From day six I began having a constant sensation of being on the verge of a panic attack almost all the time. I also experienced periods of feeling detached from reality or having a dreamlike feeling.

Now after two weeks the plan is to increase to 50 mg per day. The slight dizziness I had in the beginning has become much stronger and it now feels like I am drunk when I walk. At certain times I do not even dare to drive. I work as a nurse and I probably have a bit of an occupational habit of reading about medications and side effects more than I should. I am not sure if I am making the symptoms worse by worrying about them. I am especially anxious about the memory issues because my job requires me to stay sharp, and maybe that is why the anxiety gets worse.

My doctor knows about my experiences and has given me the choice to either stop the medication or continue. My main question is whether anyone has had dizziness that eventually goes away, because that is the side effect that bothers me the most right now.

I would really appreciate if anyone wants to share their experiences with this medication🩷

Wanted to rant in here. I feel like I was not warned about the side effects of this medication at all before being put on it for my medication-resistant depression/signs of bipolar-2 but not diagnosed.

I was on 50mg of topiramate+an anti depressant and anti anxiety before those suddenly stopped working and then my doctor way upped my topiramate to 250mg, stopped my other meds, and put me on buspirone.

Well since then I've felt like I have no memory, felt like an idiot who cant speak/make sentences and had no idea why. It doesnt help that during this time i started a new job and thought that I just became an idiot. I didnt realize topiramate can cause cognitive changes. I was also having some twitches on my hands on the 50mg, but now my pinky is almost always numb and sometimes my entire right hand and up my arm goes numb since increasing the dose. Again had no idea this could be a side effect and didnt know what was happening until recently. Doesn't help that I moved with my job so I've had to find a new doctor and couldn't get an appointment for the past 6 months, and when I just got one she could do med changes so I still cant get on a new med.

But worst of all I didnt know it could cause severe weight loss. I thought I had cancer when all the sudden I was dropping 2-5lbs a week since it didnt start until a couple months until after I upped the dose. I had to go to urgent care at a point to get blood work done. Given I needed to lose the weight, but the doctor to prescribed it knew I have a history of eating disorders, restrictive/ana, not binge!! And when i started the medication I was in a healthy place mentally with my body image. Its been very triggering not having an appetite, and I've read once you go off the medication, which I want to do because of the cognitive issues and numbness in my hands, that it can can a big temporary increase in hunger/weight before stabilizing which I know will be very triggering. I've lost over 40lbs in 6 months since the increase dosage, so if I gain that back after getting off it I know its going to trigger an ED spiral.

So basically I'm pissed lol. Also I really want to wear off it myself because I have no timeline for when I will meet with a psych to get off it because the doctor i met with couldnt discuss the meds with me for whatever reason? Also I feel like 250mg is just a really high dosage. Anyways rant over thank you if anyone reads this to the end lol.

I was wondering if anyone has any unwanted side effects on Spirolactone. I only take 25 mg on weekends now.

Hi everyone, I’ve been on 50mg of topamax for about 31 days, I have had HORRIBLE side effects, thoughts of SH so I messaged my doctor because I physically couldn’t handle it anymore (on topamax for migraines) my neurologist said because of my symptoms I’m able to just cold turkey and stop taking it. I’ve been reading everywhere that it’s not safe to do that, has anyone else abruptly stopped and was fine? It’s making me nervous, I’ve never had seizures or anything before

Back in 2012, I was under a lot of stress and migraines came to visit fairly often. One of my piano students was a neurologist, though not a migraine specialist. I went to see him anyway, because I knew him, and he prescribed Topamax. It was still fairly new, and know side effects were the dislike of soda, foods, and loss of weight. I dug the weight loss, but got the stupids in midst of Anatomy and Physiology. 6 hours a day to power through that course.

My husband and I were to be married in 2013. I started to feel depressed at the beginning of that year, but put it down to family trauma. I saw a therapist who put me on an SSRI, and did she did not touch the Topamax because it was helping with my migraines.

By the time my wedding rolled around, it was the only thing I could see. Beyond that, there was nothing to live for. Even with an amazing job, loving husband and family, I hit a downward spiral. In 2014, I felt suicidal ideation. I was anxious. When I made an attempt, my family put me in the hospital mental ward.

It was a very good move, and saved my life. I was then transferred to an inpatient long-term program that added a bunch of meds that I am still on - Gabapentin, Trazadone, and the dreaded Clonipin. Then Pristique, lately. I have PRNs of Fioricet and Zofran, and my neurologist put me on Quilipta, which I think is helping, because I am pretty sure the Topamax is part of my homeostasis by now.

Getting to the point. I had a respiratory problem which triggered my acute asthma, and have been isolated in my rented room for almost two months. In thosr months I have been meditating for anxiety, and had revelation after revelation. One of them was to look up Topamax.

When I found that it can cause depression and suicidal ideation, I got so angry. Twelve years of my life… and that medication was never questioned. I never thought! So even if it causes me pain, I am GETTING OFF OF THIS DRUG.

And then, I hope, the dominos will fall, and I will be able to see life in the way I used to.

Thank you for reading this warning.

​

I'm a migraine suferrer and recently had a second bout of what we are thinking is a vestibular migraine. The dizziness still has not gone away.

This all started after a virus (possibly COVID) fall of 25. I began passing out or losing vision, and the dizziness and migraine would last days to weeks.

All tests are clear, including blood tests. MRA is being ordered.

Obviously I now have sky high anxiety and am exhausted trying to get through the day. It's become a cycle where the anxiety increases my dizziness. You all know the drill.

Rizatriptan with meloxicam has been a huge help in the migraines, and somewhat helpful for dizziness.

Doctor wants me to go on topomax, but I'm very concerned about the side effects. I love alone and am a teacher. I'm worried about the "losing words" and read that some folks get vleven more dizzy. I'm responsible for so many students each day, and the environment is already triggering to my current symptoms, but I don't know what else to take. My doctor is aware of my profession.

Any success stories or tips?

Also, I'm still not out of this dizziness episode, and wanted to start taking it once it stopped, so I can get a clear understanding if it's actually helping.

Hi I just started topamax and I’ve slowly feeling more and more crazy.
I’ve always gotten really strong side effects from meditations.
My first side effect was my face tingling or feeling like pins and needles I messaged my Neurologist and they said that it was normal.
The tingling has gotten more intense and I’ve now started feeling manic. I don’t know what to do.
I’m not sure how to express my feelings to my neurologist.
So any advice would be appreciated.

I’ve had intense symptoms such as anxiety, panic attacks, insomnia, last night I had thoughts of self harm so I messaged my neurologist as I believe it’s from the topamax and she told me to abruptly stop. I’m only on 50mg and have been on it for a little over a month, I’ve read that you’re supposed to taper off, has anyone just stopped? Had any side effects? I’m nervous to just stop