I wish my family could understand. Is there any literature that they could read?? My father thinks that the pain is comparable to something or anythin comparable to something or anything. I wish you knew how bad it wa I wish you knew how bad it was. Please let me know if there is anything he could read that would give him a hint of what it is
here’s one article
sorry, my Dad had a hard time coming to grips with it, too. hang in there
Thanks so much!! I hope that your Dad has become all the more understanding… I just sent it to mine… I told him about this place and he is courious and pleased. I am so happy that I found you guys… God bless you
Have him read the book Striking Back. It helped my husband understand.
I told my husband it was like laying a curling iron on the side of my mouth and not letting up. I have ATN though
I have explained it feels like a red hot nail being hammered into the side of my chin. Guys seem to get the hammer and nail idea!
Absolutely agree with reading “Striking Back” available from the FPA (Facial Pain Assoc.) There is a new edition currently being worked on. Also, I used to describe my TN-1 pain as sticking a 440volt electrical cable on your face. Good luck Annie and so sorry you have this horrible affliction.
I’ve used the nail description as well, that is only one of the many sensations, but it is a common feeling I have and the description is graphic. I am TN2. I also recently had a family member misdiagnosed as having TN, but in reality he had a strange case of Shingles without a rash. Now I say, “Imagine having shingles for years, or forever” a lot more people are familiar with that disease, so while not a perfect example it gets the severity across better. I also took a photo of my face and drew a color map for the areas that hurt, and what kind of sensation I had in different areas. That visual picture, like a topographic pain map has really helped people, even doctors, understand my pain.
I just remembered telling someone who had sciatic nerve issues to imagine having that same pain in their face nonstop. That seemed to work, too.
Im in the same boat with family. They are very ignorant to my pain.
My husband thought I could walk down to pick up my perscription for my TN. I am out of my meds. He has no love for me to ask me to do that when he knows I am completly out of my medication.
The best article I have seen was given to me by my Doctor.It is from the Dept. of Neurosurgery at University of Texas Health Science Center-School of Medicine. It is 4 pages of good information. One of the things it says it is"one of the most painful conditions known to humans, yet remains an enigma to many health professionals". It also listed symptoms that I have that I did not know were part of ATN. Unfortunately there is no cure only options that people might try to make them feel better. My way of coping which I felt guilty about for a long time, was to take to my bed and read or watch TV so I could distract myself from the pain. Also when you have terrible pain it OK to take opioids if you need them because when you have bad pain the pills work on the pain and do not give you a euphoria feeling that addicts you. But you have to monitored to make sure . I hope this info is helpful.
Judith do you have a link to the article? Or the author’s name?