I'm finally having a good day

Today is the first day in over a week that I am not in severe pain. I rushed around washing clothes, cleaning house and doing all the other things I have been unable to do since I don't trust the pain to stay away very long. We've added yet another gabapentin (that makes 4 300 mg pills per day) but I only take 1 carbamazapine (cut in half) per day because it caused such crazy side effects.I was sleepwalking - something I have never done - and running face first into doors. Ouch- that didn't help very much. I'm so glad I finally found my neurologist. He is great. He understands what I'm talking about and never doubts me, which is such a change from what I'm used to with doctors. He also has a web site where you can sign in and email him at any time and he gets back to you quickly. Just last week we added an antidepressant to the mix and I'm hoping that will help. I think this last bout of pain was caused by some cold, windy weather we are having and at one point I had to be outside in it That is one of my major triggers for pain but I'm not going to confine myself to my house

I'm glad to be here and am reading all the other posts. It really helps to know that others have this and to see what others have done to either treat the pain.

Thanks for the welcome and I'm so glad I'm finally having a good day!

Glad you are having a good day too! Enjoy those as much as you can! (((((((((HUGS)))))))))))

Oh my goodness..the way you began your post, I wouldv'e sworn it was MY writing! SO TRUE! We are frantic to function and preform normally (even having sex!) when the pain is at bay because we don't know how soon it will return: it can be mear minutes ,hours or days.
I had MVD Sept 2011 after being refractory to EVERY single med used for neuralgia. The year before I was diagnosed, my diagnosis was complicated with cluster headaches and chronic daily migraines,all at the same time.

In almost 3 years, I have had 19 PAIN FREE DAYS. I am currently in the midst of an exceptionally painful bout that has lasted 6+ weeks. The only thing I have found to kinda help with the pain (and is all that was used in the hospital when I had the surgery) is Compazine. I can't use the compazine anymore because I developed dykinesia . I am sparingly using Vistaril 50mg every 6 hours. It tkaes the edge off.

I began Zonegren 2 weeks ago and I am up to 150mg day, working my way up to a goal dose of 400mg by week 5.

What is everyone using as a preventative for pain?

Anyone else with Chronic/Cluster Migraine that developed with their TN? If yes, how do you manage that? What for a preventative.?

I appreciate finding this website and the support. I really thought the surgery was going to make me 100% better. But even my surgeon said he hadn't seen such a trashed 9th nerve as mine so lots of damage had been done.

I look forward to hearing about others protocols.


Unfortunately, my good day was just one day. Pain is back today/ My teeth feel like someone is trying to push them out of my mouth. My cheek hurts, my cheekbone hurts, my eye hurts and I'm having stabbing pains in my forehead. It has sort of eased off this evening since I have taken all the meds but the side effects are making me nuts. I hope my fingers are on the right keys because everything looks blurry and I keep losing the words I am looking for. All day I have been holding my breath, waiting for the shocks behind my eye. So far, it hasn't happened but anticipating it is almost as bad. I guess we'll see what tomorrow brings.