Hello

[manu]

Hi everybody!

Background - Diagnosed with epilepsy in my early teen years, after a handful of tonic-clonic seizures; my first seizures happened while watching TV, the subsequent ones happened in my sleep. I was promptly put on phenobarbital and my seizures disappeared. I was/am lucky; my neurologists defined my epilepsy of a benign nature.

Fast-forward about 25ish years - my current neurologist convinces me to switch to a newer AED. I try lamictal for a year, but the insomnia is too severe, so I'm now on topamax.

It was approximately a couple of weeks ago when I was completely off the lamictal and I experienced, for the first time, that I know of, simple partial seizures. I didn't know that that was it, that week, until someone suggest it to me the other day, and it does make a lot of sense.
I was at a meeting, one day of that week, and I felt suddenly as if I was afflicted by influenza and my muscles (especially of my legs) were really hurting. I was holding my head with my hands and I heard a female voice asking me if I was OK, but when I lifted my head, it was my male colleague. I had felt dizzy and experienced vertigo all that week. I had also experienced tension of my neck and jaw, not to mention an overall paniky feeling.

Today, I was at the store with my husband and I felt a mild version of this kind of episode. I didn't have the muscle pain, but my right leg felt very week and almost numb at a certain point, following the weird feeling around my right ear.

I don't seem to have these issues when I cut the topamax dose of 50mg (from 200 to 150/day).
I wonder if it's just coincidence or ....:dontknow:
Monday I'll call the neurologist's office (I hate having to talk to a nurse - any nurse - on the phone, ugh!)

 

[manu]

Sorry for posting in the Kitchen instead of the Foyer. I spent all yesterday and today reading posts in the Kitchen forum, hoping to find some clues, but I never even laid eyes on the foyers. I'm pretty stressed, since realizing what I may be going through (duh). Sorry again.

 

[Nakamova]

Hi Manu -- I've moved your posts to the Foyer, so you can be properly introduced.
Welcome to CWE! I hope that you can wander through the archives (when you are feeling less stressed) and explore the different forums.

I agree that it's worth noting down your recent auras and contacting the neurologist. It's great that lowering your dose of the Topomax has helped to reduce the auras. Hopefully you can stay at that lower dose and still have seizure control.

Another factor (though this seems contradictory): When you are taking Topomax and Lamictal together, the Topomax level is increased by about 15% due to the interaction of the two. When you went off the Lamictal completely, the Topomax levels in your system have "dropped" 15%. Your brain may still be getting used to that last change and be more vulnerable in general...

Sorry the Lamictal didn't work for you. I'm on it now. The insomnia was definitely an issue at first, but I backed off the dose, and many (not all) of the side effects lessened as a result.

Keep us posted on what your neuro says.

Best,
Nakamova

 

[manu]

This is really confusing me.
I had cut my morning dose of 50 mg, with the intention of taking it with the evening dose, after that week when I experienced auras. I didn't know those were auras and I thought I was instead suffering from a mix of lamictal withdrawal and topamx side effects, hence the decision to reduce the morning dose. I could not make myself take that 50 mg with my evening dose, though, and for a week or so, I felt pretty good. Yesterday, I decided to start taking the full dose again, and this mild aura happened again. I'm very frustrated, and I'm wondering what the neurologist (via RN) will tell me to do.

 

[Nakamova]

Well that makes it seem pretty clear that the higher dose of Topomax is what's bugging you. But any change or dosage -- up or down -- can make the brain react in unpredictable ways. If you can stay on the lower dose of Topomax over a course of weeks, and remain free of auras, then that will be the happy solution. (Isn't it frustrating how much of this med stuff is trial and error?)