Feel like human guinea pig, seeking medications for seizure control

Posted by lsittll @lsittll, May 22, 2020

Seizures are not always easy to control. They try lots of different medications on us. Eventually we can get to feel like a human guinea pig. Take part in a drug protocol and you really feel like a human guinea pig! Go to Johns Hopkins Hopkins Hopkins to have your seizures treated, like I did and you are a guinea pig. All their patients are one.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Colleen Young, Connect Director | @colleenyoung | May 23, 2020

@lsittll, I think many members of the Epilepsy group may share your thoughts about feeling like a human guinea pig while seeking medication for control seizures. I read in this other discussion that you have since found a drug regimen that is working for you.
- Depth electrodes to monitor of seizures deep in the brain https://connect.mayoclinic.org/discussion/depth-electrodes/

How long have you been taking the combination Depakote, lamotrigine and zonisamide? How is it working for you?

lsittll | @lsittll | May 23, 2020

Thank you for the email address. I shall look into it further. I have been taking the combination of Depakote, lamotrigine and zonisamide for 6-8 months.The addition of zonisamide has greatly reduced the seizures to one monthly. I used to have up to six seizures monthly taking Depakote and lamotrigine only.

mxyzptlk32 | @mxyzptlk32 | Jun 30, 2020

Yes, I experienced the same thing with a blood disorder. I think medicine is moving forward so fast it is difficult for the testing to keep up and we are all different so everything is a test.

With my blood disorder I finally got around to being happy they had things to try. My hematologist told me don't worry about that there are some really cool things they are working on that I haven't been able to try on anyone yet. Him and I both had the same sense of humor. Right up to that point I had been scared. At that point it became a question of how far down the list was I going to take him.

We did finally solve that problem with info they had discovered within the previous 12 months. They had just mapped the DNA reactions to all of the chemicals given to cancer chemotherapy patients so when I got chemotherapy they knew I only needed Rituxan and not all of the chemicals given to cancer patients. Unfortunately they hadn't determined how many treatments I needed so I received the the same number of treatments a cancer patient would. By now they know the answer to that question too.

The same thing goes for my epilepsy treatments; phenobarbital, valproic acid, lamotrigine, keppra, vimpat. Even if I find something that works I am always looking for something that works better. I try to embrace my guinea pig status in hopes I find the perfect treatment.

Good luck with your journey. Sometimes it is better to be lucky than good.

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