3600mg neurontin daily? Really?

[Janie]

Good for you!

You are doing a wonderful thing.....Taking control of your health. being your own advocate. I was my son's voice through all this. When we noticed something was wrong, our internist said they were 95% sure it was cyst on his brain. So, he wanted to put him on Dilantin, which we did, and "watch to see if it grew". I said absolutely not. He could be on the Dilantin (which did not help)but I wanted a specialist since it was a growth on his brain. My husband actually fought this but I told him "It is OBVIOUSLY growing or he wouldn't have had problems in the first place"! It was just common sense. The internist thought I was crazy and I could not believe my ears. What made HIM a brain specialist? He didn't even call us in to tell us what they had found. He called on the phone, told my husband who walked by ME and told our son. It was all I could do not to scream, it was handled so badly. I stayed calm for my son though.
The specialist said the same thing so the battle to get him to the Mayo started. My husband fought me and fought me. He had such a hard time accepting this. I felt so bad for him. He would let our son drive when I wasn't home and then we would do battle again. But I was resolute. He WAS going to the Mayo and he did. That's when God stepped in and had this wonderful neurosurgeon step in. He agreed it was a cyst but felt he could help our son.
After a 12 hour surgery, we were thunderstruck when he came out and told us it was a tumor. I felt like my world collapsed in. He was not able to get the seizure activity. My husband was still in denial and didn't know why I was so upset. But, now he sees why I did what I did. I think my nervous breakdown made him see through his denial finally.
There are wonderful doctors out there but some aren't. I can always spot a good one. It was this neurosurgeon that asked our son to go into the clinical study for the transmitter and then God gave our son the miracle I had been praying for so far.
So, you DO have to be your own advocate. I researched and researched and researched. I wasn't afraid to challenge decisions made. It took so much out of me but I am so so grateful to God.

 

[Dolores]

I readily admit I was not always my own advocate. Then again I've had epilepsy for 40+ years, long before the internet was available to make doing research so much easier.

My older brother had a very rare form of cancer and one day told me about all it (and the chemo) was doing to his system (he was a chemist and understood things I would never want to understand in his situation!). He told me about having therapeutic levels and how each person is different and I need to know my own level. And he pointed out that while his doctor was excellent, his cancer was so rare there weren't enough people to run a study. He realized that he knew what he was feeling better than his doctor did.

I am lucky to finally have a great doctor (GP) who is willing to listen and explain and talk with me. Neurologists always want to switch me to a modern drug. And I always refuse.

Glad for you & your son that you decided to go with what you knew even if you didn't know why you knew it. God works that way and I've stopped questioning and just try to keep on doing.

Yes we do have to be our own advocates because as is often said here, we all react differently to different medications or need different treatments. I'm just so very glad I found CWE - the good people here have helped me to better understand me and epilepsy in general.

I too am very grateful to God.