Newly diagnosed. Help!

For 3 1/2 years I’ve been searching for answers for my facial “pain”. I feel like “torture” would be the better term most days. Finally my neurologist has diagnosed TN and started Gralise 1800mg day. I don’t like the side effects. Can anyone give advice to a new patient. Where do I go from here?


I’m so sorry to hear you have TN. This is a disease that sadly doesn’t get better, but you learn to cope and live life the best you can. I started having pain when I was 17 and have had pain for almost seven years. I have been to many neurologists trying to find the right one as they either just wanted to send me for surgery or didn’t know anything about trigeminal neuralgia. I sent you a friend request. I have been on many different medications and would be glad to share what helped and what didn’t. Also, if you need someone to talk with, message me.

Thank you Beth. I am on my 3rd neurologist, not to mention the hoops I had to jump through for other Dr’s. I’m glad to finally have a diagnosis. I can finally give this excruciating pain a name. My family is trying to be supportive, but they just don’t “get” it.

My dr prescribed. Neurontin 900mg it has given me some relief but at around 530 pm the pain flares up!!

Talk in depth to your neurologist about your options. You are young and this is a brutal thing to live with for the rest of your life. Meds dont fix the problem and there are tons of side effects from the meds. Do up on your options and tallk to your doctors. The only thing that can fix the problem, assuming their is compression on the nerve is MVD surgery. Its an individual decision but at your young age it is certainly something I would seriously consider. Good luck

My dr told me to double my neurontin not liking the side effects. Am used to getting up at 5am running 6 miles and now csn barely crawl out of bed at 9 am exhausted. Go to see my neurologist in 2 weeks. Anxious to see if I can find some meds that can help better. Still having to take a Percocet around 4 pm. It. SUX I honestly don’t know wat to do.

Thanks Ed. I’m still waiting on an MRI to determine whether or not I have compression. I am currently not on any meds. Long story, but my neurologist wasn’t very helpful. (To say the least) And Gigi, I’m so sorry to hear about your side effects. That’s why I had to stop my last med. I couldn’t function. With young children, I can’t be all foggy headed. This journey has been difficult, and I pray it gets easier for all of us.

I too have been dx 3 weeks ago living with it for 6 months. My oral surgeon dx me. Have spot with my neurologist in 2 weeks. The pain is u bearable. I feel your pain its excruciating. I’m hoping this neurontin will start getting into my system lessening the side effects. I wish I could just stay on steroids that helped the most! Keep me ipdated

Yes it’s hard I’m one that’s up at 5 running 6 miles before work. I started training for a marathon last week I just don’t know if I’m going to be able to do it!!!