Hi everyone! I'm new to the site and hoping to get some support as I help my mother deal with what I think is probably Type II TN. I'd love to share her story and maybe get some ideas on how she can manage her pain and if you think her symptoms are indeed TN, since doctors can't come to a conclusive diagnosis!
My mother is 64 years old, has a history of neck and back pain, osteoprosis, Hashimoto's (never treated), and has a herniated disc in her neck. About less than a year ago she started having pain in her temple that was pretty bad, so she had botox treatment by a "neurologist" who gave her an extraordinary amount of botox at one treatment. She had an adverse reaction to that, the pain became worse, but a few months later got better and went away almost completely.
Then about three months ago, she started experiencing the pain again on one side of her temple/head, which then migrated to both sides. She describes it as a burning sensation and goosebumps, crawling sensation around her entire head and temples. Not really on her face. MRI shows nothing, besides her herniated disc.
One doctor outside this country diagnosed her with TN, but every other doctor she has seen can't seem to pinpoint the diagnosis. She has been on 20mg of Nortriptiline for a month with no positive signs of helping with pain. The only thing that helps somewhat is Tegradol, which she had to go to the ER to get. It does make her drowsy so I'm wondering if she needs to be on a smaller more frequent dose to manage the pain which is really out of hand at the moment.
On top of that she continues to lose about 2 pounds of weight per week. Not sure if this is related but I'm guessing she isn't eating because of the pain. Of course sleep is not happening either. The pain seems to get worse at night.
Has anyone experienced similar symptoms of the pain going from one side to the other, this type of constant excruciating burning/goosebump pain? She doesn't have numbness or pain in her face, mostly the temple and cranial region. Could this be something else? She is really suffering and we can't seem to find any doctors that get it. She resides in San Francisco - any recommendations for doctors that understand this would be helpful. Edward Chang at UCSF wouldn't accept her case (TN specialist). Any alternative treatments that have helped folks?
Thanks everyone, any advice on how to support my poor mother through this would be much appreciated!