My story

General General TN & GPN (Old Site)
1

I have battled for years just to get a doctor who will listen as opposed to the many who thought I was a drug seeker. It feels like just in the nick of time, I found a decent neuro. My attacks with TN are becoming more and more frequent with increasing pain levels. Each attack is lasting longer and longer. I don’t have to tell you all how this has affected my daily life, my family life, or my marriage.
Every test done so far has come back normal, but that’s not all that surprising. I’ve had brain scans, cts, mris, and xrays. My neurontin is maxed out and I am nearing that on the tegretol. Started baclofen recently, but so far, haven’t noticed any change.
I also have a neuropathy in my right leg, stemming from the S2, and an issue that we are working hard to diagnose. I have a decreased sensory reaction on my entire right side, which oddly, is the same side my TN presents on. My neuro is preparing to send me to the Mayo clinic in Jacksonville for a further look into those.
I have multiple other health issues too…interstitial cystitis and gasteoparesis. Those make life with TN, even worse, if you can imagine. When my pain level spikes past a 7 (and my tn usually hits off the scale), my gasteoparesis over reacts in response to that pain and I find myself in a position of not being able to hold anything down. Dehydration finds me quickly.
When I have an episode like that, I find myself in an er, being cared for by doctors who have no idea what TN is. I actually had one doctor treat me for an ear ache, ignore my plea for iv fluids, and sent me home, crying in pain. I ended up in the hospital for 4 days after that, being rehydrated and having the pain managed.

So, I ask my new friends, what’s next? I know every case is different but I do see a lot of people here with successes…what should I ask my neuro about next? Pain management has failed, or maybe it was just the doctor.

2

Just a thought, and you may already have this in place, you seem a bright spark. Have your neuro write up a brief explanatory note for you to keep with you and also placed with your records to help you if you need a trip to the ER again, as you say most Dr's know little or nothing about TN, you have a complicated medical history. Therefore unfortunately you need to help the very people who are supposed to help you.
In the FACE PAIN INFO there is a form to fill in to present to Attending Phsicians to explain your illness. I carry this at all times, as when I am in crisis, I am totally unable to speak without triggering an lightening bolt.

All the very best.

3

What wonderful advice!! Thank you!

4

Have you read the book Striking Back - by Dr. Ken Casey with hundreds of relief/treatment options

AND

Are you a candidate for MVD????

Do you have TN1 -- zap zap or TN2 constant burning pain?

Also, just for a refresher - go to Mimi's post near the top about newly diagnosed - that might have some things for you to consider that you had not now there is a growing body of information

5

I havent read that, but I will. I have only just learned that there are different types of tn. I have more of a constant afflection.
MVD? Hasnt been mentioned. I look forward to reading Mimis post…thanks dear!