Posted by Samantha Smith on November 01, 2001 at 00:18:38:
In Reply to: Hi Samantha posted by Marc on October 31, 2001 at 20:28:33:
My nuero in Boston said that I have "atypical" CH because I can have CH on the left and right side of my face. There have been times that I have stood in front of the mirror and actually witnessed the CH "move" from the right side of my face to the left side of my face within a span of about 3 -5 minutes. Also he classified them as atypical because the affected side of my face will be in pain/inflammed/red/etc for days and days on end (NO remission) and on top of the constant inflammation I will have cluster symptoms (i.e. more pain, runny nose, blood shot eye, watery eye, blurry vision, etc.) The actual CH will last anywhere from 15 minutes to 3 hours (remission intervals vary but they do occur.) Another man on the message board suggested that I should talk to the nuero about trigemenal nerve inflammation (which may mask inself as a CH). My neuro said I DEFINITELY have many the traditional CH "symptoms" but other aspects of my facial pain are "atypical" in the overall scope of CH. I know in my heart that there are other sufferers out there who have the same "atypical" symtoms I have (i.e chronic inflammation/facial pain with no remission) but I just haven't run across them yet. I'd deeply appreciate it if someone out there who has the same "strange" symptoms I have would contact me via email. I know that I am not alone. Samantha