Hi Everyone,
I had my first seizure 10 days ago which came about 9 months after my crainotomy to remove my AVM. I have since been placed on a daily dose of 300mgs of Dilantin by my neurologist. Since I am the type of person who, prior to this, was generally reluctant to even take an Advil, I am having a hard time coming to terms with the fact that I may have to take these drugs for the rest of my life.
I’m just hoping that some long term Dilantin users out there might be able to share their experiences, positive or negative, with me so I can try and get a handle of what I might be in for over the long term.
Thanks so much!
Ryan
Hi Ryan,
Sorry to hear about the seizure. 
For 22 years I was on Dilantin. At first, it seemed to take forever to find the right dosage and be able to function, but once I got used to taking 450 mg daily I did ok. One of the things to be aware of while on it is that dilantin can cause gum swelling or overgrowth. http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=3&threadid=86411
For the most part I did ok on Dilantin with the exception that as I aged, my levels would not main a therapeutic level. So after my recent 4th surgery of 3/9/10, I seized post-op and was weened off Dilantin and put on Keppra.
Take care, Patti
Hi Ryan,
My husband took Dilantin for years, but he’s had better experiences on the newer drugs: fewer side effects and better seizure control. What works for one person may not work for another, so it’s possible Dilantin IS the best medicine for you. But to be sure, please see an epileptologist (a neurologist specializing in epilepsy). We’ve gotten some VERY bad advice on epilepsy meds from neurologists and neurosurgeons…it’s best to find a specialist in epilepsy who knows about the newest meds.
The Epilepsy Foundation has branches all over the country, and they can help you find an epileptologist in your area. You can look up your branch on www.epilepsyfoundation.org
Whatever seizure med you take, be careful about brand names vs. generics. Each generic can have a slightly different amount of the drug in it, so if you’re on a generic, find out the company that makes it and make sure your pharmacy’s giving you that one every time. If you’re on the brand name and it’s affordable, I’d stick with that to make sure you’re getting the full 300 mg every time.
JH
I’ve been on it since early 90’s. Have used it w/ additional sz drugs & every time that level get’s too low (10-20 is level) which is about 13 for me, I flop. Most of the other drugs used, tried & failed. Gotta have that dilantin even though it’s almost the worse of the bunch., but keeps me out of the hospitals. Throw some extra calcium in your diet too.
If that was your only sz, you may be lucky to get off it. 2 sz’rs are classified epilepsy. Only 1 may just be a fluke. I know someone who had a hemorrhage & a year later had a sz. That was the only one & the dilantin was removed. Never had another. If ya hate shaving & notice you get bushier than normal, that’s dilantin for ya. 