Hi those on topomax / Topiramate, what side effects have you experienced? I need something else as triptans don’t work. Can you please tell me your experience? Does it make you lose weight as it states?

62 Answers

vibrant.termites75
Answered 5 months ago    reply

You can lose weight as it can cause a decrease in appetite initially. I would make myself eat. Because as migraine sufferers we really need to watch our nutrients! My other side effects were tingly feet/zeroes and fingers.


Parson_Loan
Answered 5 months ago    reply

Hi my side effects was feeling like I'm in a fog, forgetting and losing hair. My neurologist is weaning me off this week and we are going to try another medication.


courageous.jiggle94
Answered 5 months ago    reply

Losing your hair? I always feel like I have brain fog and my memory is shocking so don’t think it’s going to be good for me

Parson_Loan
Answered 5 months ago    reply

Yes hair loss. It's not a documented side effect but it is a side effect. Read up on it where a lot of people on topmax was losing tons of hair. And I'm one if them, I saw a huge difference of hair loss every time I washed my hair.


fairley.trisha
Answered 5 months ago    reply

I had difficulty thinking and finding words. did not like it

courageous.jiggle94
Answered 5 months ago    reply

That is one of my migraine symptoms

fairley.trisha
Answered 5 months ago    reply

kenna I agree, those will be common during an attack. But topamax made feel stupid

courageous.jiggle94
Answered 5 months ago    reply

trisha sounds awful . What else have you tried?

fairley.trisha
Answered 5 months ago    reply

kenna I tried a bunch of triptans in pills, nasal sprays and liquid form. Imitrex game an anaphylactic reaction (so scary). I gained a lot of weight with Nortriptyline and game me palpitations. Now I am on propranolol. I cannot tell you if it works, but I don't feel major side effects.
I am considering cbd oils and the daith piercing. will see. So you use anything that works?

courageous.jiggle94
Answered 5 months ago    reply

trisha nothing that works that’s why I’m currently searching

fairley.trisha
Answered 5 months ago    reply

It is so frustrating, isn't it?


camellia_94
Answered 5 months ago    reply

Dumb as a rock.

courageous.jiggle94
Answered 5 months ago    reply

?

LoreenDunning
Answered 5 months ago    reply

She means that cognition problems is a side effect

courageous.jiggle94
Answered 5 months ago    reply

loreen thank you

camellia_94
Answered 5 months ago    reply

Sorry, yes. I literally barely know my name from the first day on it. And I'm a teacher, so that's no bueno.


CKaitlin85
Answered 5 months ago    reply

Topomax can make you very stupid. can’t remember basic words, passwords, etc. I couldn’t tolerate it, but I tolerate Trokendi (extended release version) much better


rashpoultry
Answered 5 months ago    reply

No side effects.


jacklyn_93
Answered 5 months ago    reply

Made me eat like a pig and forgot my date of birth couldn’t handle it


O_Rawson
Answered 5 months ago    reply

Same thing lose hair and my memory really bad I take toprimate200mg 1 time day


courageous.jiggle94
Answered 5 months ago    reply

Sounds as if most have similar side effects , not sure I want to try it as I work with children

CKaitlin85
Answered 5 months ago    reply

Trokendi is much better. But also much more expensive as it’s not generic

CKaitlin85
Answered 5 months ago    reply

Depending on your insurance coverage though

colstonamina
Answered 5 months ago    reply

I'm a preschool teacher and tried it, worse decision ever. Made my migraines so severe, I was at a 7-8 pain daily, vs 4-6 before. I missed 6 days of work in less than 2 weeks, and two ER visits within 6 days. It was horrible. Also had breakthrough bleeding almost the whole time I was on it.


maegan.ferreira68
Answered 5 months ago    reply

Had these same side effects plus ringing in my ears, that took months to go away after coming off. Everyone is different but some the same.

jacklyn_93
Answered 5 months ago    reply

Yes I have vertigo ringing in ears can’t go out on my own. I feel that my family are arguing with me because they don’t understand. I have to come up and down self medicate I hate this drug but what can we do. Reminds me of alcohol hate the taste but love the affects


Migdalia_Massey
Answered 5 months ago    reply

Ringing in my ears randomly not often, hair loss but that has calmed down now a year on. Pins and needles still there but not as bad as starting off. Memory like a goldfish! Weight loss was the biggest side effect 9st 4lb now at 7st 11lb. But I also eat like a pig! On 100mg a day now and have had 1 migraine since Nov, seems we have found a sweet spot


GosnellKimi18
Answered 5 months ago    reply

No weight loss, things taste funny in the beginning, I have been on it for over 10 yrs


angla.r
Answered 5 months ago    reply

I was on it for 4 days, I already told the doctor I tried it but she pushed it on me. It cost me 221.64 because she gave me a 90 day prescription. I had even worse migraines and nausea and loose bowels. I stopped it on Thursday after repeatedly trying to get hold of her with no return call. I still feel nausea and have diarrhea. But then again, that's just one persons reaction. I seem to react badly to all migraine medications.


Behnke.70
Answered 5 months ago    reply

I just started it and have been beyond exhausted. No energy and if I could I would literally sleep 24/7. I also have had a terrible headache. I’m thinking of calling my dr and telling him it’s not working.


louellaellsworth
Answered 5 months ago    reply

I have hands n feet tingling brain fog stutter more seems like my hands don't want to work when I need them to makes my migraines even worse than normal more dizzy spells


S.Ewell
Answered 5 months ago    reply

It made me gain weight and made me so sick I was in the hospital for a week!


ancientoxbird96
Answered 5 months ago    reply

Developed word-finding problems and still have that problem even though I haven’t taken topamax in years

lewd.merchant
Answered 5 months ago    reply

I still have the problem too, it’s so frustrating!


G_Pereira95
Answered 5 months ago    reply

Terrible brain fog and hair loss


Laure
Answered 5 months ago    reply

It helped my migraines a lot, but side effects ended me up in the hospital.


Catalina.possessive
Answered 5 months ago    reply

Forgetfulness, speech impairment. Made it impossible to think for me.


castorena_beatriz59
Answered 5 months ago    reply

It changed my life
Medicine has a very different effect on every time
I didn’t lose weight and have not had these crazy side effects most people have thsnk gd


gratifiedmole80
Answered 5 months ago    reply

Please realize your body chemistry is unique to you. So your experience will not be exactly like anyone else's. Ask people about any medication and you'll find people that couldn't take it because of side effects, people it didn't work for and those that it did what it's supposed to with minimal or no side effects. I have chronic migraine, fibromyalgia and trigemnal neuralgia and with every condition going through meds or treatments is my own personal journey. I no longer look at side effects unless I start to experience something.
You never know how a medication will treat you until you try it.


extralarge.umbrella75
Answered 5 months ago    reply

Numb/tingly hands and feet, not spatially aware, numb tongue, crying and couldn't stop, couldn't taste food, panic attacks, couldn't think and don't remember a thing about my vacation which coincided beginning the RX except for the tears and other sx. It was a no go within a week for me.


extralarge.umbrella75
Answered 5 months ago    reply

On the other hand, an acquaintance started them and has done fabulously on them.


warycharla
Answered 5 months ago    reply

The only side effect I had with it, was a constant craving of sweets, and it didn't help me, so when I met my specialist she took me off of it.


Dodie_Baucom90
Answered 5 months ago    reply

Brain fog, metallic taste of foods, hand tremors

Dodie_Baucom90
Answered 5 months ago    reply

I know I had others but it has been almost a decade at this point. It didn’t really help either though so I didn’t stay on it.


kisabelle
Answered 5 months ago    reply

Was very very crazy med


L.Marilou86
Answered 5 months ago    reply

I’ve been on it two years and it saved my life. That is not an exaggeration. I have side effects to this day - numb/tingly hands, feet and face (less often now but happens more than once a week), almost no appetite (lost 20 lbs and fight to not lose more), stomach issues (less now), more cramping with periods, forgetting things (but thanks to migraines I already did that a ton). I don’t have hair loss with it - however, when I took frova with it I lost hair in clumps immediately. I do take 10,000mcg biotin a day and have to have my hair thinned every six weeks when I get it cut.


a.thomasina81
Answered 5 months ago    reply

Just starting back on it after other things not working. On lowest dose this time. Better.My old doctor bumped me up to higher doses. too much too soon. so I got off of it. Had trouble thinking , extremely tired, hair loss. This time not noticing so much on lower dose. easier to handle. We'll see how it goes. For me, it makes me feel like not eating as much. I am a nurse so have to be careful what I take on a regular basis. Love my job, but also need to work since being divorced.


ficklepackage
Answered 5 months ago    reply

Did nothing for me.


ludicrousIrvin
Answered 5 months ago    reply

Been on it for a year and half. have some word finding problems and fuzzy thinking any time we have to do a dose change for about 2 weeks. I almost never have an appetite and have removed a bit over 60lb in that time. I have another 60lb to go before I'm at my goal weight so using it to my advantage to learn new eating habits. the one side effect no one told me about was it makes everything carbonated taste bitter!


Tracee_F
Answered 5 months ago    reply

I take 800 mg of magnesium, 400 mg of B2 and Feverfew. It works without the side effects of the prescription drugs (although the VA does supply the mag and B2).


esmeralda_wiley
Answered 5 months ago    reply

I haven’t found topamax helps with weight loss - I may not be taking a high enough dosage (50mgs). I find it causes tingling in my hands and feet and depression. It has halved the amount of migraines I get, so that’s been a positive for me.


Gehring_Ione13
Answered 5 months ago    reply

Hair loss, ringing in the ears, little bit of weight loss, and tightness in shoulders and neck. Tingling in face, hands. Memory loss or cloudy brain.


Paige86
Answered 5 months ago    reply

I took trokendi xr for a while. I got pins and needles on my face, hands, and feet a lot. I experienced a lot of other stuff I thought was related to the medication but my doctor thought probably wasn’t - congestion, heartburn, a weird smell I could swear I smelled but no one else did. I eventually went off it because it didn’t stop my migraines.


jealous_wong
Answered 5 months ago    reply

Didn't work for me either 1


snobby_koala95
Answered 5 months ago    reply

I used topomax for a long time. I never had any side effects. I didn’t experience weight loss either much to my disappointment


peacefulhollenbeck
Answered 5 months ago    reply

I used to take 400 & it made my migraines worse & the side effects were out of control. I'm taking 200 now & it's better. I did trokendi but it just didn't cut it & the side effects sucked.


mayhew.90
Answered 5 months ago    reply

I’m on 100mg. Hair loss, brain fog and memory loss.


WenonaHyatt32
Answered 5 months ago    reply

Lost weight but also experienced a little brain fog. The negative symptoms went away in a few months. Don't be afraid to try it, everyone has different experiences on it personally it saved my life.


Merilyn
Answered 5 months ago    reply

Everyone is so different. For me I didn't lose weight but I got brain fog and felt like I couldn't think clearly. Soda tastes metallic and I had dry mouth. The symptoms however went away after about 3 weeks. Only the icky soda remained. But for some people it's a miracle drug!


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