Coming off Topamax

Hi Guys,

After reaching 175mg of Topamax my neurologist advised me to stop taking it because it wasn’t working. He said I should tapper off it over 3 weeks. So I dropped from 175mg to 125mg and I’m really suffering. My disequilibrium/balance is so severe I can hardly walk and my head is so achy/cloudy. I’m finding it really difficult to just function.
I am now going to tapper down 25mg per week but just wondering what other peoples experiences were coming off this drug.
Is this normal to be feeling like rubbish?

Thanks,
Ella

I’m so sorry. I’ve never taken it. I didn’t realize it was one you had to taper off like antidepressants. I’m so sorry I’m sure there are lots of folks that can give you advice. this is an example of why i don’t want to take anything.

chris

HI Ella,
Sorry to hear you are having such a hard time. TOpamax is one of those drugs where you have to really find your “sweet spot”…more isn’t necessarily better. Did you ever get any relief at any dose? Since our brains are so sensitive, while most peopole can taper at a “normal rate”, I think for migraineurs, it’s always best to go slow. And if it’s really bad…go slower…unless there’s a reason not to. I have found slow tapering has helped me get off my meds without much issue while going on to try another.
Is he going to have you try a different med protocol?
Kelley

Hi Ella,

Sorry you’re having such awful effects. I stoppped taking it recently and to be honest came down and off it over the course of a few days without any awful effects. That said, I was only on 75mg which is a relatively low dose, and I was having some horrid side effects from the drug itself so the benefits I was getting from reducing it far outweighed any negative effects from withdrawal.

If you’re sure the sudden increase in symptoms is due to withdrawal then you’re just going to have to do as you suggested and so really slowly with it, everyone reacts to these things differently so you just have let your body guide you in what you can tolerate.

Have you increased back up to 150mg? I think I’d go back up until the withdrawal symptoms were tolerable.

Hope this all settles for you soon,
Hx

Thankyou for all your responses.
My new neurologist isn’t convinced I even have MAV because I do NOT have any typical ‘migraine’ symptoms like headache, vomiting, photophobia etc ALL i have is this horrid constant disequilibrium along with a foggy head etc. However my mum suffered from typical migraines so there is a family history there. He’s given me Klonopin to try - a benzo but only one script and insinuated it’s not a long term drug to be on which is not at all helpful considering I have a long term problem.
Anyway he thinks my problem may be a damaged nerve in a particular area of my brain. I’m getting another MRI scan today as well.

Thanks everyone, your so helpful and supportive.
Ella

Hi Ella,
I find Klonopin to be my best friend. I use only quarter tablets once or twice daily, and it really helps. It has anticonvulsant properties, and is used in high volume for epileptics…up to 20mg daily. It also affects GABA, so if its GABA you need, your body will react kindly to it. THe doctorI"m currently seeing says that you don’t have to be fearful of it, and supports people needing what they are missing in their brain chemistry…hopefully it works well for you.
Kelley

Wow, always find it fascinating to hear about the treatment people get in different countries. In the UK it’s pretty hard to even get one MRI, and they certainly don’t go into the detail of looking for a damaged nerve. Just out of interest, what would the treatment be if he does identify a damaged nerve?, is there something he can do directly about that or does it just come back to medication?

Hx