hello, new here

[GBM0106]

Hello and thanks for letting me join your club. My seizure disorder began at age 52 with a glioblastoma brain tumor. The surgery, radiation and chemo that followed all contributed to the chemistry of my brain that now has a low tolerance for seizures. I've only had seven grand mals total, most recently in October, but I'm taking 400 mg. Phenytoin Ext. nightly and am growing more concerned about the side effects. Chemo caused some neuropathy in my feet and toes seven years ago, but lately it feels like it's intensifying and spreading. I'm more depressed and lethargic than ever and still have dreams of tapering and weaning from that drug.

 

[Nakamova]

Hy GBM0106, I moved your post to the Foyer with its own thread, so folks coudl see and welcome you. Welcome!

If the side effects of Phenytoin are becoming problematic, talk to your neuro about trying something else. The doc should test to see if the neuropathy has spread. And even if it hasn't he/she should be able to present you with other med options. Sometimes it can take a bit of trial-and-error -- not fun, but it can be worth it to find the most effective/least harmful med.

Best,
Nakamova

 

[jojobelle]

What an amazingly brave person you are; you sound like you've been through a horrific time and a hard time still.
I hope you get some relief very soon and can get on with your life.

 

[Sandie]

Good luck. Sending you some sunshine and I hope it helps. Take care. I am sure everyone here wishes you all the happiness in the world and hope you can start to smile soon.