Topiramate (Substitute for Topamax) for Migraine Headaches

Yes, I took it for a few years -- finally had to stop b/c the benefits didn't outweigh the side effects.

I literally FORGOT words. It was awful. I'd be talking to my kids and say "put it on the ....." couldn't remember the word for table. I knew that I knew it, but couldn't bring the word forward. So frustrating, and embarrassing.

The 'good' side effect was weight loss but I only lost weight because it seemed to affect my taste buds. Stuff just didn't taste right anymore.

It caused strange tingly feeling in my hands and feet too.

I now take amiltrypiline (sp?) as preventative and I have my brain back!!

Yes, I have. It works well for some, however it caused me to have "brain fog" and I couldn't tolerate it. How often does your son get migraines?
FYI: Topiramate is not a "substitute" for Topamax - it is the generic name, Topamax is the brand name. generic name of medications are cheaper.

The medical world has dubbed Topamax as "dopeamax" because it causes brain fog and slower thinking in some people.

I have been on Topamax/Topiramate for a very long time, maybe 7 years or so, and tolerate it very well. Before I started on Topamax I was having migraines so severe that I could not function. I often ended up crying on the bathroom floor, throwing up. It was awful.

Once I started taking Topamax, I still had/have frequent migraines (about 17 days out of the month), but now I can function with them. They aren't quite as severe, and I don't throw up anymore.

The only side effects that I have are that I am freezing all the time, and I don't sweat. Freezing isn't listed on the side effects, but several people I know that also take Topamax also experience the same thing. I simply can't get warm. As for sweating, I don't sweat, ever. I've never been a person to sweat much; in fact, I don't wear deodorant, but now I don't sweat at all, even in our Texas summers. As for the brain fog, I only experience that for a couple of weeks whenever I change the dose of Topamax. Once my body adjusts to the new dose, I'm fine.

Now I take 300mg of Topamax daily, and I also get Botox injections every 3 months. With the Botox, I'm down to about 20 migraines every 3 months. That's a lot better than 17 a month. It's still not great, but it's an improvement, and with the Topamax I can at least function when I have one (most of the time).

I hope your son finds relief. Migraines are awful.

We use natural supplements - a comprehensive mix rather than just choosing a few ingredients like magnesium. No headaches in 5 years, though mine weren't true migraines, just frequent headaches. A friend had horrible migraines (passing out, vomiting, etc.) and has been migraine-free for 10 years. She had tried various medications with little success. So we do what she did with great results and no side effects.

I have tried topamax a few different times. The first round did seem to help, but the side effects became awful. I tried it a couple more times with less success. For me, the brain fog was pretty bad- I felt like I had the distracted type of ADHD, I could not finish a thought or a project, it was really weird. It also made some food taste weird, soda tasted like battery acid (not like it was a bad thing to drink less soda, but just fyi). It also made my throat feel a little tight, which ended up being an allergy.

I hope your little guy finds some relief, migraines are awful. I haven't found the right thing yet. I take Maxalt which helps the most, but I have to take an anti-nausea pill first. If your son tries different meds but they make him nauseous (many do), make sure to ask if he could still take them but adding compazine or something first so that he could tolerate them. Helped a ton.

Good luck.

I took Topamax for about a year. But it made me very foggy feeling and made some foods taist nasty. I had to stop taking it because it made it hard to function at work. If that's your only alterative I would try it for a little while and see how he does. The side effects might out weight the migraines. It did not for me.

Is the doctor prescribing the topamax your son's primary doctor or is it a neurologist? If it's his primary doctor, I suggest seeing a neurologist first. I started with my primary doctor, who prescribed topomax, and he was not happy when after a year I told him that I needed a different medicine. When I pushed, he did send me to a neurologist who had other options for me.

As for my experience on topamax, I also had the brain fog issues only I wasn't fully aware of it. My husband told me that I would be talking about a topic and then I would just stop in the middle of whatever I was saying and that would be the end of the conversation. I also experienced the pins & needles feeling in my hands and feet. Sometimes it lasted only a couple of minutes and other times much longer. This made caring for my kids, who were toddlers (1 & 3 years old) at the time, difficult. I had issues with the taste of some foods and it cut my appetite drastically. I didn't notice the change in my appetite though. My husband had to tell me that I wasn't eating.

Now having said all that, it was my experience. I do know people who have said that topomax has helped them. What works for one person isn't always going to work for another.

Its not nicknamed "stupimax" for nothing - the people I know that took ut nearly lost their jobs due to the "stupids"... id really want to look at other options first!

It changed my friend's life and allowed her to work fulltime! It was expensive though.

I don't have any of the side effects of Topiramate except for thirst, but that's due to it being combined with another medication. I also have to keep a closer eye on my vision and eye pressure, but so far nothing wrong there either.

I've never heard of it causing issues with speech or cognitive dullness. It hasn't been an issue for me nor anyone else I know that takes it.

Was this the first line of defense against migraines?

I would hope and assume that other remedies have been tried and ruled out as ineffective before trying to Topiramate.

Can you please describe what else has been tried. And have you learned what the triggers are for your son's migraines? How often are they that he would need a preventative med?

I tried it once, for less than 3 weeks, and I had this weird 'word' problem with it. I could not find the right words, or finish sentences. Plus the common 'brain fog' phenomena.

Topamax can have the side effect of making you very emotional. Keep that in mind when using it.

Good luck.

My younger daughter was on high dose Topamax/topiramate for years for severe, disabling migraines. Yes, it did cause the near-ubiquitous side-effect of dulling her verbal abilities, but it wasn't too bad, and it was well-worth the trade-off since she had no life without it. Like you, I was wary as well, since the cognitive dulling is so common Topamax was being referred to as Dope-A-Max". But, if that is too severe, you can always choose to stop it.

But like I said, she was completely disabled with migraines that could last 3 days and were occurring several times per week... so at that point - she REALLY had no life!! So to have a life at all, albeit with decreased cognition, was preferable. We always weigh the upside vs the downside and that balance changes over time and with circumstances.

My daughter was able to get off it some years later after the research about CoQ10 came out as helping over 50% of pediatric migraineurs. That worked for her as well. She slowly tapered off the topiramate very very slowly, just like she had very slowly titrated up when beginning it.

When off it, the cognitive dulling side-effect completely reversed, and she was back to her old talkative self with high verbal "IQ". That common side-effect is not permanent.