Meds - Topiramate (Topomax)

Has anyone tried this Med? I don't like the thought of being on meds but I have an on again off again headache through the day, every day.

Is this med more for preventing headaches, or to cure a headache on the spot?


Corrinart, I took topomax a few years ago for the full, recommended year. At that time it was considered a preventative and I think? it still is. It is one of the few drugs that can (I believe?)have an affect on intercranial pressure. I understand you not wanting to take meds, I’m the same way, but if you find something that helps with pain then go with it. I think being in chronic pain is harmful in itself. Let us know how it goes, I hope you get some relief with it.


I wish there was one that worked. Have had headache 24-7 for 3 months. Mothing works. But i havent seen neurologist yet. Just diagnosed 2 days ago. Have mri tomorrow. I guess to confirm and see how bad it really is

Ogott, let us know how your appointment goes :slight_smile:

Ogott said:
I wish there was one that worked. Have had headache 24-7 for 3 months. Mothing works. But i havent seen neurologist yet. Just diagnosed 2 days ago. Have mri tomorrow. I guess to confirm and see how bad it really is

I could not take it. The side effects are horrible. I lost weight because nothing tasted good.

My daughter took it, but it did not help. We were seeing a headache specialist as well as chiari surgeon. Scheduling surgery in a few weeks.

I’ve been taking it since June of last year. It is the first thing that has helped. It has cut down on my migraines, and on my Chiari headaches. The reason it can help the Chiari headaches is that one if the side effects is that it can decrease the CSF. Another benefit, for me, is that it also helps with the nerve pain that I experience.

The only ‘bad’ side effects I’ve experienced are : I can not drink carbonated beverages any more because they taste like jet fuel ( this is healthier, but I miss my morning Coke!) and sweets don’t taste the same.

I had gained about 60 pounds in 3 1/2 months on Lyrica and lost about 35 of it while on the topamax …I’m hoping the rest will come off soon

I took it and plus side was I lost weight that was the only good thing. I had horrible memory issues couldn’t find my words.

My ex-neurologist put me on that crazy medication-It's actually used to treat Epilepsy and prevent migraines. For me, the side effects of the medication outweighed the benefits. It made my hands and feet tingle and go to sleep to the point that they were so "dead" I couldn't even wiggle them-I actually fell once because of it, I couldn't drink anything carbonated (which wasn't that big of a deal) because it altered the taste-It tasted like straight carbonated water, I didn't like/want to eat anything sweet because it altered the taste so much, I lost WAY too much weight (sounds strange for a female to say that but I'm 5'3", a mom of 3 children and I dropped down to 105 pounds-too skinny!), and the medication literally made me stupid. It gave me horrible memory loss..I don't know how, but it altered my thought process. If someone asked me a question I could not answer them on the spot without stumbling over words, stuttering, or having to stop in mid-sentence to try to find the appropriate word(s) I wanted to say. It was extremely irritating, embarrassing and it really lowered my self-confidence.

Aleve liquid gels are usually a miracle worker for me when it comes to headaches, unless they are REALLY bad.

I took it. I did not help me the first 3 months on it I lost 50 pound and did not want to eat... it was awful for me.. I ended up going to my regular doctor who had to run a whole list of blood work because of my mood swings, my weight loss and other issues... so ended up going to a new Neuro. Who has gave me gabapentin which has work for the headaches.

I take it and I think it has cut back on my daily migraines but I also stopped working as a massage therapist at the same time I started taking it. The one thing I can say is it keeps me from eating! nothing ever sounds good. In April 2014 I was 142lbs but then the migraines got bad and I started throwing up every day and started losing weight. Then I started the topomax and on Sept. 20th 2014 I was 124lbs. I never thought that I would hat e being told I look great because I've lost so much weight. I might look great but I feel like Hell and I miss eating good food!

My first week on Topomax I was the entertainment at work. I couldn’t keep a thought straight and I locked myself out of my computer 3 times in one day. I never really felt like it helped with the headaches but at the time they wanted me to stay on it because I was being checked for seizures. I’m with Brandi, Aleve is my drug of choice. Unless to bad then it’s off to bed for a day or two.

I started getting migraines at 12 (34 now, so 22 years) and Topiramate has been my miracle drug. I've tried many things over the years, and after starting Topiramate last October I've been (almost) migraine free. There were some funny side effects in the beginning (crazy dreams and night-time hallucinations during the step-up process, lasted no more than two weeks) and I've lost 40 pounds, no complaints there.

Before I took Topiramate daily I was spending (on average) 7-10 days a month in bed with migraine, now, zero. I take 100mg/day.

However, it doesn't seem to touch the chiari headache. That's another animal.

When I first started seeing the doctors about the what I now know are the chiari symptoms, the rheumatologist suggested that the muscle weakness I was experiencing was due to the "extreme" weight loss from the Topiramate and tried to talk me into stopping it. I told him he had no idea what he was talking about and I wouldn't even consider it.

It's not for everyone, but it's ended 22 years of suffering for me and I hope it keeps working.

clairelf said:

However, it doesn't seem to touch the chiari headache. That's another animal.

I take that back: I went away one weekend, and forgot the Topiramate, so missed Friday night, Saturday morning and evening, and by Sunday morning had that feeling like someone has put a belt around your head instead of a hairband and is tightening it with a ratchet clamp. It didn't go away until I had my next two doses of Topiramate.

This is why I keep a headache journal.

So I guess it does minimize the chiari headache to the point where it's bearable. For me anyway.

Hope that helps someone.

Topamax caused me to gain a little weight with no headache/head pain relief. We were hoping if experience weight loss but no such luck. But everyone responds differently to meds. Hope it works for you.

My neurologist in the Czech Republic started me on a low level of this & then my US neurologist wanted me to try and go to a higher level of it. They both said it is to prevent headaches and that it takes a couple of months to help. I also loved the idea of helping with weight loss, but it didn't seem to help me there or with headaches. I don't like taking new med's but decided to try it for a time period to see what it would do. It didn't help and when I tried to go to the level my neurologist's wanted me to take I couldn't sleep, was so restless and have major vision issues so I stopped taking it. I do know that it helps some people so I hope it helps you or that you can find something that helps bring you some relief.

For me, the preventative medications were more of a nuisance that didn't really work anyways. I have tried 4 different ones and none worked for the migraines or the "positional/straining" headaches. My miracle drug as been Imitrex. I take it at the onset of a migraine and within 20 minutes, it's gone. Another one that many people have good luck with is Fiuroset (sp?) I like these because you don't take them regularly-for me, it's a hassle, especially if I wasn't going to end up with a migraine that day anyways. The less I have to take, the better