u/wandering__star

Hi everyone! My name is Laura, and I was diagnosed with TN almost six years ago. I had MVD surgery four years ago. My remission comes and goes.

I'd love to hear your thoughts on starting a monthly TN support group over Zoom.

One of the things I appreciate most about this community is how we show up for each other. Trigeminal neuralgia is such a unique condition that it's hard for others to truly understand unless they've lived it. This subreddit is a wonderful place to connect, and maybe some people would like to have a little more time to talk, vent, ask questions, and support one another.

I'm trying to gauge interest in a recurring meeting. Perhaps something like the 4th Wednesday of every month. My vision is a 60–90 minute Zoom session with a structured but relaxed format so everyone has a chance to share.

In the meantime, I'm reading up on best practices for facilitating virtual chronic pain support groups so we can create a supportive, non judgmental place for all!

If this is something you'd be interested in, please let me know in the comments! I'd also love to hear your thoughts on:

-Would you attend?

-What day/time works best?

-What would you hope to get out of a support group like this?

Is anyone else in a similar position? I had a successful MVD in 2021 to decompress my right trigeminal nerve. At the time, my neurosurgeon told me I could expect around 10 years of pain relief.

For the most part, the surgery gave me my life back. I no longer have the classic triggers. I can wash my face, eat crunchy foods, and blast the AC in my car without getting shocked. Because of that, I still consider myself to be in remission.

But over the last 6 months, I've started getting random shocks again. Sometimes it's only a couple of times a month (which I’m grateful for), but even that is enough to stop me in my tracks. In the last month, I've had episodes of intense hammering pain that woke me from sleep, and one shock that literally dropped me to my knees. It's the same Type 1 pain I had before surgery.

I'll then go weeks completely pain-free. It feels like a mind game, out of sight out of mind.. Even during the good periods, I find myself constantly on guard, wondering when the next attack will happen, no matter how well I sleep, eat, or stay hydrated. I’m in weekly therapy to help process this

I'm currently taking 500 mg of Trileptal daily and Baclofen as needed. Recently I've had to increase my medication a bit, which has brought back the brain fog and has me falling asleep by 8 p.m.

I'm lucky to have a supportive partner, but as everyone here knows, it's hard for anyone to truly understand this pain unless they've lived it themselves.

Lately, I feel like I'm chasing the years I have left in remission. I still want to do so much with my life…advance my career and travel. But when the pain hits, it's mentally exhausting in a really dark way.

My neurologist told me if pain progresses she will just “Refer me back to neurosurgery.” I have a hard time accepting this, as MVD recovery took me months to bounce back.

Thanks for reading this far, just looking for support 🩵