What are you used to when it comes to your pain. Do you have pain attacks everyday or multiple times a day? Do you go a long time without pain and how long do you go? Does anyone have pain every single day?
Leslie,
I do have pain every single day, although some days it is so minimal that I only notice it if I'm consciously concentrating on it. I have atypical TN or "trigeminal neuropathy" as my docs decided. I go about 2 weeks with minimal pain (maybe 1-3/10) and then I'll have about 24 hours of a horrendous flare-up like 9/10 pain. Then the cycle starts again - I'll wake up the following morning with minimal pain again and know that in about 2 weeks time I'll have another bad day. It's so crazy how we all have a dysfunction with the same nerve in our bodies, but everyone has such different experiences with this condition.
Wow I’ve never heard someone else’s pain story to see exactly how often they get it so thank you for sharing yours and I hope you feel a lot better.
I have pain every day. It goes from 2-3/10 in the mornings to 5-6 by evening. Then about the middle and again at the end of the month it will be 9-10 constantly for 2 to 3 days. I have both TN1 and TN2. And several triggers that can make my 2-3 pain shoot to 9-10 such as a cool windy day, or extremes of cold or hot, or stress...even bending over to tie my shoes.
I have gone through periods where I have pain every day. I am generally pain free in the morning and things start to escalate mid morning and just get worse as the day goes on.
After two years with this my pain is all over the map. High and low...no pain days. My pain also really moves around sometimes or will settle into one place for days and weeks at a time.
I think there is no normal with TN!
Thank you justjane37 and liveinhope for your point of view and an idea of how often others get pain. I wish everyone luck with feeling better.