I'm understanding that it is rare but I'm still trying to find someone else besides me who ONLY has forehead stabbing pains. Mine are about 1.5-2 inches above my left eyebrow. I have been averaging roughly 250 stabbing pains per day even with the meds that I am on. I understand that TN can be progressive and can spread to other branches (V2, V3) after months or years.
Is there anyone else out there who just has forehead (V1) pain OR started out that way and then your TN spread to other branches? I'm trying to understand what the likelihood is of my TN spreading to other branches what other people's experience has been. Looking for whatever information I can find.
I'm sorry that you are getting so many stabbing pains each day :( I hope your doctors can help figure out medication that works better! Ravit has a good suggestion about talking to the Forehead Pain group :)
You could also try looking at the book "Striking Back : The Trigeminal Neuralgia and Face Pain Handbook" by George Weigel and Kenneth Casey, M.D. :) In chapter 6, Other face pains, not TN, not dental but it still hurts' there is a table that lists symptoms and conditions. Tolosa-Hunt symdrome, orbital myositis, Raeder's paratrigeminal syndrome are 'one-sided pain affecting eye and forehead'. There are others that list forehead such as post-herpetic neuralgis hurts the 'eye/forehead region of one side'. It's a pretty big table with lots of symptoms, maybe one of the conditions will match your symptoms and help give you something to research.
I checked it out from the library, but as soon as I started reading it I realized it was a great resource and paid to become a member of the TNA Facial Pain Association and get the book for free :)
Hi Jessica. Thanks for the information. I will investigage that. I've gotten real good at estimating the number of stabbing pains that I get. I recently have experienced as many as 500 daily stabs on a couple of consecutive days, even with the change in medication (more Trileptal). Fortunately real bad days like that are usually followed by "gentle" days of maybe 20-50, which frankly I can live with compared to the higher numbers. Today has been an incredible day with zero stabs so far! It usually comes back with sharp reminder that I am not going to get off that easy.
Jessica H. said:
I'm sorry that you are getting so many stabbing pains each day :( I hope your doctors can help figure out medication that works better! Ravit has a good suggestion about talking to the Forehead Pain group :)
You could also try looking at the book "Striking Back : The Trigeminal Neuralgia and Face Pain Handbook" by George Weigel and Kenneth Casey, M.D. :) In chapter 6, Other face pains, not TN, not dental but it still hurts' there is a table that lists symptoms and conditions. Tolosa-Hunt symdrome, orbital myositis, Raeder's paratrigeminal syndrome are 'one-sided pain affecting eye and forehead'. There are others that list forehead such as post-herpetic neuralgis hurts the 'eye/forehead region of one side'. It's a pretty big table with lots of symptoms, maybe one of the conditions will match your symptoms and help give you something to research.
I checked it out from the library, but as soon as I started reading it I realized it was a great resource and paid to become a member of the TNA Facial Pain Association and get the book for free :)