I was wondering if anyone has trigeminal neuralgia and is willing to share personal experiences.
My husband tries to be supportive of my pain and my fear of pain but the rest of my family thinks that it's no big deal. Most of the time I deal with the pain very well and am able to ignore it or at the very least work through it. But yesterday I couldn't talk or eat and I just wanted to cry because I didn't know what else to do. Around 5:00pm, I started feeling better, then my grandmother called and told me she was ready to go to the grocery store. I told her that my face hurts and that I had been in pain all day.
She still wanted to go to the store before supper, meaning "let's leave right now". Normally, I can take her to do whatever she wants but when I get like this it is really hard for me to even talk.
I don't know the right thing to do in my grandmother's case. Was my pain more important than a nice lol without food in her house?
Maybe I shouldn't say "my face hurts" but I can't think of any other way to say it.
Thanks for reading.
Jun 27, '08
I can say Yeah I know from personal experience that my face hurts is a pretty honest assessment, probably better than saying sorry granny but i feel like i have a red hot poker in my nose cheek and temple but brutal honesty may be required ...I suffered for almost a year before DX was made. I kept telling my hubby " it feels like I have marbles rolling around in my veins and arteries on my face and neck" and my ear would always pop just before an "attack"...I dont know about how to deal with family since my hubby was the only one I ever told about my pain except my PCP. I just want to let you know you are not alone ((((((HUGS)))))))....this is serious pain , so take it seriously and expect others to as well, I wish I had. My pain was debilitating and I more than once wished I could just die and get it over with knowing something was wrong and not getting it seen too , thinking man i must have a tumor or SOMETHING , but I was misdianosed for a full year and treated for migraines , cluster headaches and stress head aches and temporal arteritis instead(actuallly was having migraines during the same time frame which made DX almost impossible), the problem with that was there was no pain relief no matter how much narcotics entered my bloodstream if it was not a true migraine....I even had shots of cortizone in the affected temple area!
Keep you chin up and remember take your pain seriously maybe try to give family a detailed technical explanation about your condition...while they may not "get it" they may realize the seriouseness of your pain that you are not just complaining!
Good luck and you can PM me sometime if you wanna talk to someone who has been there....
Jun 29, '08
Thanks for the hugs.
I don't understand it but there is something comforting about knowing that someone else out there knows what I am going through.