Well, after one very long and painful week of waiting, I finally had my neurologist appointment. Dr. Young seemed very nice when he walked in and he really seemed to listen to what I was telling him. He did his tests (which included touching my face with a tissue which was EXTREMELY PAINFUL) and then he asked me a lot of questions before finally confirming that the second and third branches of my trigeminal nerve were acting up. The paper he gave me says Trigeminal autonomic cephalgias? He said that he wanted to try me on some medications and that he didn't know how long they would be able to last before i broke through again, he prescribed me Gabapentin (Neurontin), and said to start off with a small dose for a week and then increase for the next week and then again the week after that. He said that just reducing my pain by at lest 50% would be a victory (I'd rather have it gone but he's right) He did say that if it is really messing with my head that I should call him and we'll try something else or weigh my options. I am very sensitive to medications so I have a pretty good feeling that he will be getting a call from me within the next few weeks. He also wants me to do this Bio talk program where I go to the hospital and I talk about my pain and I can see my brainwaves and heart rate while I'm doing it? He thinks talking about the pain will help keep me less stressed which might reduce the number of attacks that I have (did I mention he's also a neuro psychiatrist?). I don't really know how I feel about that one but it is worth a try. So all and all I think the appointment went well. I believe that I have a pretty good doctor right now and hopefully he will be able to help me to find something that works. He didn't bring up any "surgical" interventions so I'm not sure if he knows about them or if he just wants to wait and see if the medication isn't going to be a good fit for me.
Questions for anyone who reads this?
What is your experience with Gabapentin, if any?
What were your side effects?
How long did the medication last until the pain finally came back again?
Neurontin ( Gabapentin ) works well for many with TN. It didn’t for me, but we’re all individual in our responses to meds so it’s important to try.
My best advice to you is read up online about it. Give it at least 3 weeks ( unless you have an allergic reaction or severe side effect) before you give up due to side effects or poor pain control. It takes time to get to a therapeutic dose, and with many of these meds the initial side effects will lessen and disappear once your body adjusts.
Be prepared to feel tired, groggy, dopey, poor concentration the first week or so, that’s normal.
As I mentioned this med works really well for many of our members here at LwTN.
Do a search in the search window ( above far right) to read others posts on neurontin.
Glad you feel good about the appointment, that’s great! I hope it works out to be a good supportive relationship for you.
I’m sure he knows about the surgical options but most will wait until you have tried at least 3 medications to no avail before exploring those options.
Good luck, hope you find relief soon!!
Mimi
This is very different , to have a neuro-psych … So far good plan. We’re you able to ask about lidocaine ? What does your mom think? More support? I just don’t want you discount the bio feedback… But the less stress you have,
I had much better response with tegretol than Neurontin. The meds gave me some relief and even when I was in remissive times I continued to take them for fear of the pain returning. After 6 years I can truthfully say the only side effects I had were a little drowsiness and it was hard at times to wake up early. I would want to sleep in. After 6 years the meds really did not touch any of the pain and I added Lyrica which had no affect at all. I ended up opting for mvd 9 weeks ago and have had no symptoms of TN since the surgery. My surgeon used the minimally invasive endoscope which I researched and felt like my chances were better the less the surgeon disturbed during the procedure. I have my life back again, and would consider as an option down the road should you find a good surgeon who agrees, and they indeed find a nerve compression by arterial or venous compression on mri/mra.