Hi there! I had my first taser shock 3 years ago and then ATN burning and "almost shocks" for 6 months...then went away for almost 3 years. In the beginning, I saw a terrible neurologist who just told me to take Tegretol and if I wouldn't listen to him about the med, that was all he could do. Needless to say, I walked out and never went back.I dealt, during those 6 months, without medicine.
2 weeks ago, it's all back and now I've been officially diagnosed with TN. I'm a single mom with three young kids and business owner so I'm trying to do whatever is possible without medications that cause the debilitating side effects...at least for now. I live outside Portland, Maine and was wondering if anyone has recommendations for neurologists, alternative practitioners, anyone that would be compassionate and really have a good understanding of TN. I would like to be as proactive as possible now to head off the worst of it as it progresses.
Thanks so much and finding this group has been an absolute Godsend!
I am not in your area, on the Facial Pain Association web site they only have one doctor listed in Maine who is a neurosurgeon (http://www.livingwithtn.org/forum/topics/starting-my-new-tn-journey-and-looking-for-maine-recommendations)
It might be beneficial to call their office and ask for a recommendation of a Neurologist or Pain Management Specialist in your area. Calling local hospitals - Especially to the Emergency department may be of benefit. You may have to travel, I know it's difficult with your young children, but you only have a few chances to get this right. And if you are trying different medications it can be a long drawn out process to start and stop drugs to find the combination that works. Hopefully you have or can set up a network of people who can help you during your down times (church groups and relatives are often good for this). Uaw all the resources you can and remember knowledge is power. The more you know the better informed decision you can make when choices are thrown your way. I highly recommend the following books
Striking Back: The Trigeminal Neuralgia Face Pain Handbook
A layman's guide to understanding and treating what is often called the worlds worst pain (Purchase thru Facial Pain Association, Amazon, Barnes and Noble)
We're In This Together: Stories & Tips from Patients with Rare Diseases
This book is our compilation of patient tips and stories to help others, patients and loved ones get through this difficult time in life. Ben’s Friends is a “little Internet miracle” and we plan on continuing for many more years. (This book is available in Kindle version only and can be purchase thru Amazon)
Ten Essential and Simple Steps to Managing Your Doctor
Empowering you, the Patient
Dr. Danielle West-Stellick, ND (can be purchased thru Dr. D's Facebook page: https://www.facebook.com/Drdanipatientadvocate/app_251458316228
Also available thru Amazon.com)
And of course this web site and the Facial Pain Association website http://www.fpa-support.org/
Hope this information is helpful on your journey!