Adding Dilantin?

Symptoms & Treatments Medication
1

Im having issues right now. I couldn’t get in to see my doctor until December. So I went to urgent care, I wanted to adjust my meds, and I needed a note for work. Once they heard I had TN, the doctor actually came out to the front desk and said “We can’t see you for that, we don’t adjust meds.”

After saying “how about a note for work, my doctor is booked until December.” The urgent care doctor asked who my doctor was, they’re in the same network, and she reluctantly agreed to see me to give me a note. Then she gave me a hard time requesting the note to keep me off until Monday.

So now I’m trying to get my doctor to squeeze me in. If he can’t, my only hope is Friday, when they keep 3 appointments open for same day. But they fill up extremely fast. Anyway, I’m rambling. I have Bilateral Atypical Trigeminal Neuralgia. And since Monday evening I’ve had a constant ache in my right temple and right jaw about a 4-6 on my pain scale, along with a few times it reached a 8-9 for 30 minutes or more. I’ve also been blessed with typical jolts of pain on my left side just in the temple area, thankfully they only last a few seconds, but they are in the high 9’s on my pain scale. (I don’t ever like to say 10)

The reason for my post, I’m currently taking Baclofen 20mg 3x a day, Gabepentin 600mg 3x day, along with a 5mg Valium and a 325mg of hydorcodone when the pain gets bad. And that isn’t even touching it lately. I was thinking about either adding Dilantin to the mix or dropping the Gabepentin for Dilantin. My doctor is great and will let me try almost anything as long as it makes sense. (This is my primary doctor)

I currently do not have a neurologist, but have three on my list to try to see. One is about an hour from my house in Chicago, another is 1 hrs and 45 minutes from my house just outside of Chicago, and lastly is one in Detroit, about 4 hrs and 30 minutes from my house, but he is an awesome neurologist from everything I’ve read and heard about him. All three are actually highly recommended. But I plan on going to whichever one can see me sooner, sorry for being all over the place, but the medications due make it hard to stay on point.

So what would you try? Add Dilantin to my meds or substitute Dilantin for the gabepentin? Thanks for your time.

2

What have you got to lose? But I would suggest you wait for your neurologist appointment. Dilantin is a very complicated med to prescribe. Its art to properly titrate it. You need a doc with LOTS of experience to get the most out of it. Especially with narcotics, and valium in the mix.

3

My doctor called me at 815 this morning and told me to come right in. He did prescribe me the Dilantin, 100mg. And told ,e to just start with one a day for the first week. Then he squeezed me in for next Thursday to see him again. To see how it’s going, and possibly increase to twice a day. He strengthened my Norco also. He apologized that he didn’t get back to me sooner, and told me if I ever need to get in to see him to call his nurse and he would squeeze me in. He told me to think of myself as a VIP in his practice. He’s is a pretty great doctor and I usually spend a good 40 minutes to an hour with home whenever I see him. We tend to cover all the bases. I still haven’t heard from two of the neurologists yet. So I think I’ll be calling Dr. Ken Casey. And see when he can see me. It’s a four and a half hour drive, but I need to see someone who’s experienced in TN.

My doc did tell me if there’s any issues at all, to call his nurse, and he would get back to me asap.

4

I have Typical TN. Diagnosed last November. I was on Tegretol, then Gabapentin and now Dilantin. I was highly allergic to Tegretol (burn over my entire body) Gaba did next to nothing to stop pain. Dilantin has worked for me since January when I started it. Just recently started having break through shocks (very minimal but I don’t want to get back to the horrific pain like last year). Trying B12, low sat fat diet as well as upping Dilantin a bit. I haven’t had any side effects or problems on Dilantin. Good luck with it!!