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Anyone Drug Resistant To AEDs?
A MyEpilepsyTeam Member asked a question 💭

Drug resistancy

posted January 31, 2020
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A MyEpilepsyTeam Member

Yes . I’ve became resistant of meds. My Dr. would raise the dosage up , until I was at the max dosage. Then I would resist again and we would talk about trying another AED med.

posted March 30, 2020
A MyEpilepsyTeam Member

Hi @A MyEpilepsyTeam Member. I had one brain surgery and the VNS . The brain surgery didn’t help with controlling my seizures, but it really helped reducing the seizure frequencies , from severe to mild and moderate seizures . The VNS didn’t work well.

Now my Epileptologist and I are discussing about trying the DBS ( deep brain stimulator. ). It’s kind of like the RN . The DBS was originally used for people with Parkinson’s Disease. For the past 2 or 3 years they discovered that the DBS can work for people with Epilepsy.

posted February 3, 2020
A MyEpilepsyTeam Member

I am not saying that there are not individuals who have Refractory Epilepsy, because this is an absolute fact.

Remember, there are a LOT of factors involved in reaching 100% control of seizures and proper medications for you is only one of those factors -- thus unless a professional (usually after studying you for a period of days spending all day in a seizure center) has determined that you have refractory epilepsy, then it is not fact.

Yes, we can develop a measure of resistance to a particular medication after being on it for years, and the result is your neurologist increasing the dosage of the medication or adding a second anticonvulsant OR switching to a new anticonvulsant.

An annual blood test to see how much of the anticonvulsant is in your bloodstream is important because, how I learned the hard way (resulting in a trip to the ER) that too much in your system can trigger seizures too.

I started off with simple Tegretol, but it later was shifted to Carbamazepine (Tegretol generic) ER with eventual addition of Lamotrigine. (with the X factor of the pharmacist error in 2003 and errors by my first neurologist because of Alzheimer's).

However, as my first neurologist said early on, he tells all of his patients that he can keep going up and up with medication level (obviously there is a cap on safe dosage, but not for his point), but it will NOT matter if I cannot control my stress level (with depression and other factors in there too not to mention being focused on any form of media source that will raise the stress level). It is one thing to stay informed, it is another to get too much of a daily dosage of any form of media that is increasing your stress/depression level.

@A MyEpilepsyTeam Member You have had multiple brain surgeries as well, correct? Has any of that allowed you to ever reach 100% control?

posted February 3, 2020
A MyEpilepsyTeam Member

I"m curious about whether long term use can create resistance in your body

posted February 2, 2020
A MyEpilepsyTeam Member

Like GuyAdrus said , being drug resistant is called Refactory Epilepsy.

Like I said above . I’ve been on the majority of the meds on the Market. None of them have worked 100% for me. I’ve even been put back on meds , that I was on in the past. I still have seizures .

For everyone who struggles find the right medication or combo of meds , have a 5% chance of finding the right meds that will control our seizures.

posted February 1, 2020

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