I went to the seizure specialist yesterday. He said that seizure medicine wasn't addictive and it wouldn't cause seizures if you stopped it. (I had heard that it could) He said if you have seizures and stop the meds then you will have them again but it won't cause them. Here's my thing. When I tried to go off the topamax even by 25mg I got a HORRIBLE migraine. I had to cut my pills a little at a time and even then I had to take maxalt for the headache for a few days. Anyone else with that problem? :confused:

Hi again,

Well, we learned from our Epileptologist/Neurologist a couple of things over the years...

1. If you have seizures and stop meds, you will likely have seizures again because your brain "knows" how to have a seizure, the pathways are there

2. Seizures can occur from medications themselves, if you in fact don't need the meds or if the medication levels are too high (toxicity) for your body

Our daughter was toxic twice over the years as we adjusted meds. That is why doctors are slow to increase or wean meds.

You mention "seizure specialist"...is he an Epileptologist? Or has he done a fellowship in Epilepsy at a clinic that specializes in Epilepsy?

Vicki
mom of Katie, the most courageous young lady I know

Crystal we have talked about my bouts with headaches due to topamax... I have to take magnesium oxide for that reason... I'm not cutting back though, we are always increasing! So the headaches are the topamax!! If I forget to take my morning dose, by eleven I'm down with a horrid headache. I call it my med alarm clock, I try to Never let it go off!!!!

How are you doing now???

Lisa

Hi Lisa T,

That was one of the side effects that our Ep mentioned to us, I forgot to mention in the last post. I looked in the "book" I keep for Katie, as to why we decided not to try Topomax. She decided to start Katie on Lamictal instead.

All my best to both of you,

Vicki
mom of Katie, the most courageous young lady I know

From personal experience, all I know is that I've come to RELY on it...but I don't know if I'm so much addicted to it.

The first thing - in regards to Topomax, I was on that first - and I'm going BACK on it...if I forget to take a dose - yeah, I take a trip through head ache city too...and seizure city if I wait too long but DEFINATELY headaches!

Then I was on Lamictal and they took Topomax away...apparently my body liked topomax and hated lamictal...I had headache after headache and sadly SEIZURE after SEIZURE...now I'm back on Topamax AND lamictal just for now so my body stops screaming and then they will SLOWLY take the lamictal away for good...

I think thats the key though - the most delicate BALANCE in the world...it's no so much an addiction - but a calculation and a gentle balance between what your body and soul can tolerate without losing touch...and what your brain needs to be seizure free.

Love Kaitie!

Having visited this forum for information on the AE meds I took for nerve damage, I realized that some of us chronic pain patients are a sort of 'control' for the side effects of the anti seizure drugs (Re: especially cognative and memory problems). I never heard of any addiction problems (although there has been dependence in regard to pain relief). Although it won't help with your migrains, a visit to just about any other forum will show that it is not uncommon to have various problems while your body adjusts to the change when discontinuing many different meds.

Hi!

Well, we learned from our Epileptologist/Neurologist a couple of things over the years...

1. If you have seizures and stop meds, you will likely have seizures again because your brain "knows" how to have a seizure, the pathways are there

That makes sense.

2. Seizures can occur from medications themselves, if you in fact don't need the meds or if the medication levels are too high (toxicity) for your body

HE said that the seizure med's would NOT cause them but other drugs could.

I am afraid that if I stop 200mgs at once not only will I have a horrible migraine I may have a grand mal or a convulsion or something. Right now I just stare.

Our daughter was toxic twice over the years as we adjusted meds. That is why doctors are slow to increase or wean meds.

I feel like my brain is mush but my blood tested fine (liver and kidneys etc)

You mention "seizure specialist"...is he an Epileptologist? Or has he done a fellowship in Epilepsy at a clinic that specializes in Epilepsy?


His card says Gregory l. Krauss, MD Dept of Neurology John Hopkins Medicine Epilepsy Center


Vicki
mom of Katie, the most courageous young lady I know

Crystal we have talked about my bouts with headaches due to topamax... I have to take magnesium oxide for that reason... I'm not cutting back though, we are always increasing! So the headaches are the topamax!! If I forget to take my morning dose, by eleven I'm down with a horrid headache. I call it my med alarm clock, I try to Never let it go off!!!!

How are you doing now???

Lisa

I am having headaches with the topamax. My brain is mush. I wish they wouldn't have started that dilantin stuff cause even when I went off it I still haven't come back yet.

I have the same med alarm. That's why I'm worried about going cold turkey off 200mg all at once. I'm sure they will see seizures. But probably bigger ones then I've ever seen and that scares me. I got my eeg reading today and it looks scarey enough. No wonder he said the report looked impressive. It's wack! I don't understand why no one can see it. He did say that the one white mark is consistant with a trama I had as a child and that the seizures weren't coming from that. I think they are new...from the last few years...from the stroke 2 yrs ago. he still thinks they are just migraines maybe. Balogna....all of life changed that August! Anyway, sorry to vent I'm scared I guess. Thanks for being there, and for understanding. :) Crystal