Is There Anyone Else On This App That Has Seizures That Are Resistant To Medications? | MyEpilepsyTeam

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Is There Anyone Else On This App That Has Seizures That Are Resistant To Medications?
A MyEpilepsyTeam Member asked a question 💭

Hi, I'm new. My name is Caitlin. I was diagnosed with epilepsy at age 6. And I figured out for myself that my seizures are resistant to medications just last year.

posted April 14
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A MyEpilepsyTeam Member

When I was having seizures medicine didn't work. I was having seizures on a daily basis while I was taking my medication. Since 1990 when I had brain surgery awake, I have only had 3 seizures. Today I am still on medication but I'm not afraid of seizures anymore.

posted April 14
A MyEpilepsyTeam Member

If you are officially resistant to meds the definition, is you are resistant to two or more meds.

posted April 14
A MyEpilepsyTeam Member

Yes . I am one of those people. My Epileptologist calls it Refractory Epilepsy.

I’ve been one many different medications , a Left Temporal Lobe brain surgery, the VNS ( Vague Nerve Stimulator ) and the DBS ( Deep Brain Stimulation ) . Did all these, in the name of Seizure Control .

I’m still on a medication that doesn’t control my seizures 100% . The DBS is helping well and has reduced my seizures by a little over half , of what I use to have.

posted April 14
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member It's not that someone would be resistant to all meds its just the best way going forward once someone becomes resistant to two or more, as the main issue is once you have been on two or more the chances of gaining control with just meds is low.

posted April 14
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
Doctors have called my seizures drug resistant for over 30 years. I’ve been on every medication in the books. I have had a few surgeries and have a RNS but still have seizures.

posted April 14 (edited)

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