Thanx debbie,
that is how i feel at times to my fiance,i will have him read this as it would help him alot,to help me instead of him thinking oh not another flare up like it brings him down or stops his life to. anyway was great to read thank u again xx mina
Thank you for that amazing article…I wish I could express myself as well as that!
Wow, this is unbelievable…so very true and helpful. Thank you.
Thank you so much for sharing this article…
I have now printed this many times for my family and friends and they have all thanked me. I even gave it to a few of my dr’s and my dentist so that they can have a better understanding of how to treat and deal with me or other patients they may deal with in the future. Thank you!
I completely agree with this article. It was very valuable to me to find out more information, some of which I did not realize. Very informative.
I feel like maybe this article will finally help my husband understand what I am going thru. It is so hard to be in a situation like this where no one else feels our pain. Every time that he asks how I feel, I have to say good, because if I say not good, then there is this sigh and roll of the eyes and if I ask him to take me to the doctor for for a shot - usually because of bad head ache pressure, then they give me a pain killer that makes me fall asleep for a couple hours and he has to watch the kids, and there is that huge guilt trip associated with it…so I continue to wonder how people get through their marriages. It is so difficult…and yes, the drugs also have their side effects. I have 3 kids under the age of 4 and one more on the way…it is a struggle and I just need the strength to get thru this. But support would be so nice for a change. Thanks for the article and if anyone else has any good advice out there on how to deal with this emotionally, I will take any advice!
Yes, I remember this document. I touched me so much that i printed it, and carried it. Because anyone who has the pain, can relate with so many of the issues mentioned. I got so tired of explaining it over and over again to friends. But it is the kind of article that stays with you for ever.
Al.
This is a great post!
Thanks for posting this! My husband found it and read it. This is truly great!
Got this dreaded curse since 1997 and its right we need the positive outlook of our loved ones. Have taken all the prescribe meds of my neurologists, and pointing to one direction surgery, cant afford that so I’m back to tegretol,if i have some extra money and to the generic ones which are half the price.During the years with TN, I notice that it begins to made its presence felt during the times when I am stressed out with all the problems thinking deeply of surviving the daily life. Last time i felt the pain was 3 years ago and now its knocking on my face again. Im out job because of this thing, were just beginning to build our lives again1 year after a deluged hit us with 12 feet of rampaging waters ruining our modest home, my wife left for London, as a nurse and the last time we’ve talk she might never get back as she’s in love with a Brit, got 3 kids with me here ,so thinking of the way God love me by all these test make the dormant TN alive and started to kick again. I need help morally spirittualy, Im down and got stomped upon, anything most specially prayers. Were all connected by this thing may the good Lord Bless us always.
I just sent this to my friends and family, I have felt more than a little isolated since being diagnosed and hopefully this will help them understand what we go through.
Thanks for posting it 
Thank you so much for sharing this information. It is a very difficult mix for me. I am working full time and do not want to share too muchinformation, yet need people to know. I don’t want my co-workers to think I’m being ruid when I don’t answer them, nod and walk away because my jaw is locked. This is Wonderful information for familiy and friends as well. Hope you are having a wonderful day. -Theresa
There’s probably only one thing worse than living with severe, episodic pain. And that’s living with and loving someone who lives with severe, episodic pain! If someone cares at ALL, accept it as it comes.
As patients who can be difficult to understand, help, and get along with, they probably don’t come any worse than US. It’s difficult to live a life that is defined by suffering, but it’s ALSO not so easy to love and care for someone who suffers relentlessly. Wouldn’t you leave (your pain) if you could? A caregiver HAS that choice.
Remember, THEY can leave, and we cannot. It’s NOT EASY living with people like US! To the extent we can be responsible for our own illness, then others can begin to learn to understand our pain. But NEVER forget that their role is OPTIONAL. (jqt)
Really good.
I would add to have a plan for emergencies. Like have emergency medication, or know where to go and who will take the patient. My doctor gave me a document indicating the condition in case i need to go to the ER. Last time I went I felt dismissed as someone just looking for pain medicine.
Hey Debbie,
I am just reading this since I only joined yesterday. Thank you so much. My fiance will find this valuable. He is great, and I count him among my many blessings along with my two kids (adults). I'm trying to practice gratitude, and it's hard when the pain becomes hard to bear. I'm so happy that I found this site. Again, I appreciate this so much.
Best wishes,
Norma
Thank you so much for sharing this artical for family and friend’s and a better understanding for us aboute TN. So glad I found this web sight on TN It’s helped change my understanding and out look on trying to cope, with TN.
thank you so much im only 16 with this so all my friends who i once cut up with dont understand this new me since my pain has kicked up this past year. i have posted this on my facebook and i know the people who care will read it
Thank you very much, this explains it all. I have no care giver, and at time I feel others don't believe me. I have no partner because I don't want to bring anyone into my life with this disorder. Sometimes I feel Its not as bad as I think it is, because others feel that way, until I have some pain. I will try to keep a positive attitude for myself, I am tired of having to explain my reason for staying home so much. thank you for sharing this. Love You!
Debbie, I think everyone who has TN will think this is their life story. I know I did… thank you so much.