On the Wrong Medication for 20+ years!

[Pamela-anne]

Hi I am wet behind the ears when it comes to trying to find my way around please bare with me as I make my way as this is my first time doing a post hear on the epilepsy forum. I recently found out that the drug "Tegretol" that I had been taking for 20+ years was a medication that I apparently should never have been on at all. I had not seen a Neurologist in 20 years infact the last one I seen was the one that had prescribed the "Tegretol" for me. I never really cared for that doctor as I felt he didn't seem to be too concerned about me but rather always seemed to be rushing me through his office only to up the dosage of my Tegretol. I didn't like how I was feeling as the side effects from all the pills I was taking were taking their toll on my health. I felt like a walking zombie with little to no energy along with a feeling that I felt like my blood was poisoned. I decided to take things into my own hands whereupon I started to down dose myself over the years until I was down to one pill a day - at one time I used to take 17 pills a day! Well the Neurologist I visited with recently told me that the Tegretol was not a drug used to treat my type of seizures infact he said it could have contributed to my seizures. He also said that if I had of been on medication for my tonic-clonic seizures I could have had my seizures under control years ago! I was shocked when I heard this news he had said it was a good thing that I had decided to decrease my dosage of my "Tegretol". Well now I am no longer taking it but I have just started taking a new medication for my type of seizures called co-levetiracetam. Hopefully I will start having less seizures once I have been taking it for a while.

 

[Cint]

I've used Tegretol also for TC seizures in addition to many other meds, to no avail. How do you know that it wasn't the right medication if you had not been to a Neurologist in 20 years? Had you had your Tegretol level checked at all during those 20 years? I disagree with what your neuro told you about Tegretol because according to what I've read, it is used for CP AND TC seizures. And so is Keppra (Levetiracetam). But beware of the Keppra. One well known side effect of Keppra is RAGE and depression!!

 

[Nakamova]

Hi Pamela-Anne --

Your new neurologist's information is a bit confusing -- Tegretol can absolutely be successful in controlling tonic-clonic seizures. That said, everyone reacts differently, and it sounds like it wasn't the right med for you in terms of seizure control and side effects. I'm glad the new doc is helping you to find a treatment that will work for you. Make sure to pay attention to how you're feeling on the new med, and don't be shy about getting in touch with your doctor if you have any questions or concerns. Good luck!

Best,
Nakamova

 

[Elsie]

Hello and welcome. Good luck on your new medicine.

I took tegretol for years and years for my tonic clonic seizures with much success. However, I am one that has been extremely fortunate that whatever I took has worked for me. I am on Trileptal now and that works also.

I would hesitate to let a dr. prescribe Kepra for me. I have a tendency towards depression and anger anyway; I feel this would not be a good one for me.

I thought these medicines are often prescribed for other types of seizures besides the type the drug companies approve them for. Am I wrong about that?