Okay, who of where are the most knowledgeable folks for this disorder? Just a general ask thanks.
Good question! I am not knowledgeable at all but I am a great survivor of both TN and GN…I have had it over 20 years, bilaterally. I have had the horrible pain but not for years but I do get the electrical zings, and some burning most every day. I have it in my eyes, ears, lips, teeth, gums, tongue, throat and this year in my jaw, bilaterally. I have no triggers except the wind on my lips, otherwise it just visits and then leaves. Neurontin helps when it gets particularly annoying, but I just take it for short periods. My GN and TN came early when I had MS symptoms and they run the same course. I am a nurse and I am very cautious when I see people giving medical advise on these sites. What we need I believe is support and encouragement, leave the medicals stuff to the professionals.
Funtsie
It depends what you would like to know. Shoot away with some questions and I will answer the ones that I can for you.
I appreciate wanting to leave certain things to the professionals however, that being said, many of us may feel like experts. Plenty of us have lived with this for so long that we may be able to shed some light on what avenues can be taken.. Support and encouragement are very important (and wonderful), but these are only a portion of what a group like this is here for. It is nice to know if someone has had success undergoing a medical procedure, had something organized homeopathically, or possibly had luck with a cocktail of meds. This gives the individual different areas to investigate for themselves...It is all about our options...I know personally, I am so grateful just knowing I am not alone.