Looking for input from those of you who have tried Dilantin…just your individual experiences would be helpful, good or bad.
I know we’re all different, but I like reading/researching as much as I can…I’ve already looked it up officially on line rxlist etc…

This will be my new med that my neuro has today recommended to add to my existing regimen of 1600mg Tegretol XR and 60mg Baclofen. I trust his judgement and as I’ve been struggling for pain control since September, I’m hoping for just a little relief as I await my MVD. My pain on average sits between 4-8 it even hit 10/10 on nov. 29th…I survived, barely. So scared for it to happen again… :frowning:

We’re starting very low dose as his main concern is side effects… Although to be honest I don’t think I could be any more dizzy, tired, “stupider” or nauseated… ; ) but I guess it’s always possible…ugh, I hope not…

Wish me luck, Mimi xx

Hi Mimi... Suggest you run the term "Dilantin" (without the quotes) in our search window at top right. I got 13 pages of hits, several of them in a dedicated BLOG thread on the subject. There is substantial member experience in these posts.

Regards, Red

Hi Red, thanks, I actually waded through all 13 pages prior to posting, unfortunately there’s not much substance to the references of Dilantin, it’s just mentioned in most posts. No real personal experiences that I could find.
Thanks, I love the search function! Mimi

Okay, Mimi, I dug deeper. The chapter of "Striking Back" that deals with medications provides some applicable information. Dilantin (Phenytoin) was the drug of choice for TN in the 1940s and 50s, before emergence of Tegretol. It is not as initially effective as Tegretol. Reports vary, but numbers quoted in Striking Back vary from 25% success (as monotherapy) to as high as 54 to 70% effective (NIH study). When it works, average duration of pain relief is about 18 months, much less than Tegretol. My impression is that the primary uses of Dilantin in common practice (other than as an anti-seizure agent) are as an adjunct to Tegretol or one of the other anti-convulsant drugs.

I wish you well with this.

Regards, Red

Thanks so much Red!! Although I’ve read striking back, I don’t own my own copy… This was very helpful!
I know I’ve told you before, BUT your kindness is really appreciated!!!
((( hugs ))) Mimi xx

Glad to help, Mimi. It's what we're here for...

Regards and best


Hi Mimi,

I was just prescribed Dilantin today.It's been 3 years since your post. How did it work for you?


Mary Beth