Anyone else wonder if they’ve imagined the pain? IV had just shocks in my face the past few days, not the super serere crushing world stopping attacks that I have had. Maybe because I look fine on the outside I’m worried about not being believed ? I pray everyday that I won’t be nailed by a severe flare. I have noticed that wind does bother it, and a tender spot just on the bottom rim of my eye socket.
If you have problems with people understanding your pain experience, then share the journey with others here and in related groups on Facebook. There are many folks who have dealt with the same mixture of feelings and reactions, fears and anxiety. The pain isn't imaginary. But it can come and go without apparent reason.
Go in Peace and Power
Red
Thank-you for your encouragement Red. I do share my story but it is hard to be at the brunt of judgment sometimes.
That's why online communities are so important, mom. You aren't judged or invalidated by people who have been through the same journey. You may find that some of them become among your best friends.
Regards, Red
I feel like that all the time- that or if I have a day without pain I think it’s gone. Then it’s not. It sucks that people don’t understand it. Just get up and work through it - just ignore it. It just keeps coming back. And the tegretol makes me appear as if I’m drunk. Stumbling, slurring, really bad memory problems.
This is not fun. But mine went away for 8 months, and I am just waiting for it to go away again.
Thank-you Lynne for the encouragement.
I constantly weigh my symptoms, wondering whether it''s another flare-up or something else. I'm on Lamictal always but for flare-ups I add gabapentin and my doctor just added baclofen to the mix. I took both over the weekend and couldn't do much more than sit. I was so loopy. My pain has come and gone in the last month which is unusual for me. Normally, the pain arrives and stays constantly for a week or two. This time, it's hour by hour, then gone, then back. I'm having some pain right now (not horrible) and it makes me nervous that it will get stronger. The last time I had an excrutiating bout of pain, which lasted weeks, the side of my jaw swelled up and turned red. My GP couldn't figure it out. It was not an infection. I took a picture of my face so I could show people that those of us with TN never know how it might manifest itself beyond the pain which can't be seen.
Hi Blindmom,
I can relate with what you say as well. Every day is different. And when that pain is gone it is a million miles away. I am constantly judging and hypothesizing about the cause of my pain. Wondering if it is something I have done or not done to make this happen. It is frustrating at times that no one else can see the pain. Sometimes when it really hurts I look in the mirror and just cannot believe something that terrible could be invisible.
Isolation is something that comes with this. No one seeing or understanding the pain. I honestly can't even accurately describe it most of the time. It makes you aware of who really cares about you though...the ones that ask how you are or take time to learn about TN on their own. I would be lost without support groups. I can't imagine having had this years ago when you would probably never meet another person with it in your life time.
Jane
We are all here with you and understand. I have experienced every emotion possible. Try and stay positive.