I was thinking about a small card with a brief summary description of TN to hand out to people that are interested. I got the idea from the hearing impaired that hand out a card that has the sign language hand positions on them. Maybe even a card that has a TN ribbon printed on one side and the info on the other. Any thoughts on what should be on it, I think short bullet points with the most impact to keep interest so people would be wanting to read the whole card and become more aware.Any thoughts?
GREAT IDEA!!! It is soo very hard to explain what is going on with us...no idea what should be on it, but I will THINK ABOUT IT for sure and get back with you! If you make it, I will use it!!! :D
thanks I appreciate that
Brilliant idea! As I just don’t even try to explain what is wrong with me any more! Like Cris, I will have to put my thinking cap on, as to what the bullet points should say. Maybe one could be … Leave me alone!
As I once told a Neuro Scientist! With all due respect Sir. I think I am far more qualified than you as to describe my pain. Although you do this surgery every day, you will never know what it feels like to be suffer the unique pain of TN!
I think it is an awesome idea!!I am to the point that I don’t try to explain it to most people. I figure if they really want to know they will Google it. Maybe an easy card explaining what the disease is and the triggers would sure help!!
I always struggle to explain what I'm going through to people. This condition has such an impact on one's life that unless you live with it or live with someone who has it, you just can't fully get it, I think. There's so many things which should be on that card, but maybe a few bullet points and perhaps a website address (such as LwTN) where you can find more info about this disease would be useful!
Sally
I love what you told your nuero scientist I couldn't have said it better!
Sally said:
As I once told a Neuro Scientist! With all due respect Sir. I think I am far more qualified than you as to describe my pain. Although you do this surgery every day, you will never know what it feels like to be suffer the unique pain of TN!
Thanks I have told alot of people to google it but I don't think most do it,
Lisa26 said:
I think it is an awesome idea!!I am to the point that I don't try to explain it to most people. I figure if they really want to know they will Google it. Maybe an easy card explaining what the disease is and the triggers would sure help!!
I agree that most people can't imagine how you feel or think that since they can't see it it must not be that bad. very frustrating at times! I like the website idea
Oldriska said:
I always struggle to explain what I'm going through to people. This condition has such an impact on one's life that unless you live with it or live with someone who has it, you just can't fully get it, I think. There's so many things which should be on that card, but maybe a few bullet points and perhaps a website address (such as LwTN) where you can find more info about this disease would be useful!
I wish this card idea was already available!! Like some of the others I have just stopped trying to explain to people what TN is....and even when I try the look in their faces says it all......it's like I am talking to a wall...they don't seem to get it.....I have recently just been telling them (when they ask) to look it up online. Not that I need them to feel sorry for me but I think most of them think it's all in my mind.....some of them say.."if I were you I would just go and get all your teeth pulled...that would fix that!" They don't understand it has nothing to do with my teeth! Even though I thought for a very long time that it was tooth related. VERY FRUSTURATING!!!
I've been told that I think I am better than everyone else because my pain is worse???? Or there every day??? Excuse me??? Any thoughts are welcome.. You can imagine what I said to that. lol
But is it repeatable on a family site Min?? That is awful, just mean, nasty and awful. I hope it does not come back to bite them, then again................................................................
I didn't really say it,,, but I was thinkin it!!! This person has back pain and it has escalated lately. They are a family member. It was probably said out of frustration. But I said, no I don't, I have no control over my pain, it is there every day, that is inevitable. Nothing I can do about that. They said why do you take the medication? I say I have no choice I do what I can. Geez, what do they want me to say?????? Seriously????? WE ALL do the best we can... I think, quite honestly that this person is getting "bitten" and is lashing out jusssst a little bit. My how the mighty have fallen. Sorry guys. I am venting a lil'....
Great Idea, That would certainly enlighten and make more people aware of this disease.
Wouldn't be something if they could "feel the pain" especially at it's worst for just one day. The tune they sing would be certainly in a different key!
Min...wow you lucky girl...you are the queen of pain!!! Something to be really jealous about isn't it. Families are such funny things sometimes. My poor sister lost her 32 yr old step daughter suddenly last year. My heart has broken for her. I phoned, sent cards, gifts, took her out for meals. Now that some of the attention from the family has moved to concern for my pain...she will hardly speak to me. When I facebook a doctor visit or progress and others offer support and or prayer...I hear nothing from her. I try to understand her pain is deep ,and every day, but couldn't we support each other in that similarity. I give up...I love her and always will. I have come to realize people deal with things differently and I just need to try accept these differences and live my life the best I can. I can not control anyone else...I can only strive to be "all that I can be even with TN!'
good idea ! wish i wasn't in such pain right now to offer suggestions.
I like 'FEEL THE PAIN" as a slogan.
Scott said:
Wouldn't be something if they could "feel the pain" especially at it's worst for just one day. The tune they sing would be certainly in a different key!
Hi all,
Was there an outcome to this post about cards to carry ? I think they would be very handy for times we have a really painful attack in public, it’s much easier to be able
to hand someone a card with an explanation on than trying to talk which makes the pain worse
It could say simple facts like 1: I have trigeminal neuralgia, it’s an excruciatingly painful condition involving a problem with a nerve in my brain that gives me unpredictable electric shocks in my face, the best thing you can do to help is find me somewhere to sit, fetch water if my medication is due and to understand that when an attack happens I am unable to speak and I need quiet to deal with the pain , it can happen for seconds or hours in which case it may be appropriate to contact my next of kin on the number below
Or it could have facts about TN on one side with the ribbon in the background and the reverse could have spaces for name ,doctors name, next of kin contact, medication list etc.
then it can be used in different ways, the facts could be shown to anyone who is trying to help us in an attack, the details on the reverse can save us having to relay the information to medical staff if we have to seek help and also for family and friends, so they understand the main points of TN , maybe printing this web address on the bottom may encourage people to come to this site and read other people’s stories and the full facts and resources we have on here.
I think we should all join forces on here and with other sites with users who have TN, set up a petition to raise awareness of trigeminal neuralgia and ask for more medical research to be done into the causes and treatment .