Alternatives to Phenobarbital? - Epilepsy Message Board

Jerry1665 · 11-28-2008, 04:59 PM

My girlfriend has been on Dilantin and then Phenobarbital with success for many years. Currently on Phenobarbital for the past 10 plus years. Last Grand Mal seizure around 7 years ago. However, it doesn't seem to be as effective as it has been and she is looking for an alternative drug with less side effects (sedation & occasional hives).

Has anyone been on Phenobarbital long term and successfully switched to another drug? If yes, what can you tell us about about how the switch went and how are you doing now (side effects, etc.)?

Thanks for any help that anyone can provide.

Travis from MN · 11-29-2008, 10:27 AM

Pheno and Dilantin are the two OLDEST medications (1912, 1938 approval dates). There are many others that have been released since. It all depends on the patient. The variables are where the seizures occur, if something is the cause of them, and if the patient can take the other medications or not.

If they have only tried those two there is a substantial field of medications to look to and see if it will work or not. You never know if it will work until you have been on it.

I was on Pheno (along with Tegretol) for over 10 years. They slowly dropped the pheno by 30mg so I wouldn't react. Took a while due to being on it for so long. Had one nasty seizure when coming off of it, but that was it (at a dose of 15mg). I always took Pheno at PM only.

Sometimes it can take years to find the proper medication mix. I went through that. I'm also in the mindset don't rock the boat if it (medications) is working.

--Travis

robster1 · 11-01-2009, 03:40 PM

I have been on Pheno and Dilantin for 34 years. They started me on Zonagran(with the Pheno and Dilantin) because my seizures were so drastic. I have done real well and maybe have 1 a year. My epilepsy is aquired. Thought I had to prove to my friends I could Ice Skate better than they and knocked myself out on the ice!!!! I agree with Travis. Don't rock the boat. They have wanted to operate on me for years but I am old and fearful. My brain is my life!!! I have to pay bills!!!!