AEDS + Clear Tests

[davidmc]

I see posts everywhere about people with simple partial seizures but with clear EEGs and MRI scans that have started AEDs.
Yet my neurologists wouldn't let me start any due to the clear tests (although 1 EEG showed generalised sllow wave activity and the MRI scan showed sinus disease and a mucocele as well as scar tissue from surgery I had to remove a heterotopia from my scalp around 19 years ago). This is not just one neurologist, it is many.

I have an ambulatory EEG test in a few weeks but if that doesn't show anything, what do I do?

I was only allowed Topamax for my headaches which controlled the simple partial seizures after asking and I was advised against it.
I don't want to be on Topamax forever but don't have much choice at the minute.

Any advice?

 

[Nakamova]

I would be very forceful with the neurologist to make him see your point, or get a second opinion. Be very clear: "The AED medication relieves my symptoms. That indicates that my symptoms are seizure-related, even in the absence of a positive EEG. It also suggests that other AEDs might be equally or more helpful in controlling my symptoms." Bring in a friend or family member to back you up.

 

[davidmc]

I would be very forceful with the neurologist to make him see your point, or get a second opinion. Be very clear: "The AED medication relieves my symptoms. That indicates that my symptoms are seizure-related, even in the absence of a positive EEG. It also suggests that other AEDs might be equally or more helpful in controlling my symptoms." Bring in a friend or family member to back you up.

Thanks. I have the genetics test and ambulatory EEG test in November so will wait until after that and see what happens with those tests and then do your suggestion when I have my reslts, whatever they may be.

Can scar tissue from an op cause seizures?
The op was to remove an heterotopi I was born with, was removed aged 10.
Only there was brain tissue on the lump when they removed it so from what i gathered, think there was brain tissue outside of my brain.

 

[Nakamova]

Heterotopia can cause seizures, and any surgery on the brain -- even surgery to remove a heterotopia -- can also cause seizures, depending on the resultant scarring.