Louise, there is not a card yet that I know of but like you would still like to see one.
Scott
Louise said:
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 .
I have a simple card from TNA. On the back it there is an illustration of a mask-like-face with three lightening bolts come from it. The text says: Please be patient with me. I have a neurological condition that causesintense nerve pain in my face when I try to talk. Cold weather and wind also cause the pain.
I got this card when I paid a member ship last year to TNA.
It says as much as needs to be said in some situations. I have used it to pre-board aircraft and to let the flight attendants know that I could experience difficulty during the flight without having to go into lengthy explanations. The few times I’ve used it people generally responded well.
(Although one fellow said ,“well I haven’t seen that one before” and I wasn’t sure of his tone so resisted giving him the finger…)
I don’t know if anyone else has done this but I also got a medic alert bracelet to use when I’m away from home.
When i was trying to explain to my 70yr old dad....who simply couldn't understand it wasn't a dental problem, i printed out the illustration from the wiki page. It helped a lot to have that to help explain it to him. If that illustration isn't copyrighted, i think it would be excellent to include on a card. Maybe on the back, and you could circle or highlight your individual trigger points.
I'm assuming these cards would be just for general information, and not an actual crisis card. I assume that we'd all have a printed page for that go give to ER etc. If they are just for info, then maybe just a brief synopsis on the back with the illustration of the condition. Again, the there was one paragraph on wiki that was helpful enough to make my dad understand it.
Bullet points on the front with an illustration of the TN ribbon sounds great! Something like ...
*Neurological condition causing extreme electric shocks and/or burning pain to areas of the face.
...and other stuff. (i can't think of any more, off hand...lol)
Also, maybe somewhere on the card..at the top maybe?..a web address to a site with more info/details.
I really like this idea and would be interested in having some of these kind of cards.
I find that every time I have to explain my condition I also have to give basically a full anatomy class on the cranial nerves and how the nervous system works along with explaining my particular disorder and then my particular triggers and symptoms. If I had something that come yes the anatomy lesson and explanation of the disorder portion for me and I only had to explain the particulars of my case that would be extremely helpful.
Not a bad idea at all - design it on a business card and get a pack of perforated print-at-home cards...
Also - rather than tell people to google it - I have the wikipedia entry bookmarked on my iphone and just hand it over for a minute. People really only need to get a few points out of that first section to get it.
I have an idea of how to design and put info on a card, I will make something up and post it for review and input to see if we can get the ball rolling.
Hi, Only just found this thread. What a fantastic idea. I was out yesterday face all covered and someone said I know how you feel I have a headache too. Grrrrrrrrrrrrr
Oh I like this idea. It physically hurts sometimes to explain. I usually just write it down on a piece of paper and suggest they google it. I feel like I have three heads whenever I attempt an explanation.
Great idea. A skull with lightning bolts as the trigeminal nerve that says "in extreme pain.. Trigeminal neuralgia" would be like a get out of jail card. Its impossible to describe without feeling consumed by it.
Has the medical alert bracelet helped during an attack or given you a chance to educate someone?? Worth getting??
Bellalarke said:
I have a simple card from TNA. On the back it there is an illustration of a mask-like-face with three lightening bolts come from it. The text says: Please be patient with me. I have a neurological condition that causesintense nerve pain in my face when I try to talk. Cold weather and wind also cause the pain.
I got this card when I paid a member ship last year to TNA.
It says as much as needs to be said in some situations. I have used it to pre-board aircraft and to let the flight attendants know that I could experience difficulty during the flight without having to go into lengthy explanations. The few times I've used it people generally responded well.
(Although one fellow said ,"well I haven't seen that one before" and I wasn't sure of his tone so resisted giving him the finger...)
I don't know if anyone else has done this but I also got a medic alert bracelet to use when I'm away from home.
I am a member of TNA.org.uk and they send you a card the size of a credit card with a picture and some basic information on when you join it is very useful on the back it just says....I suffer from Trigeminal Neuralgia, an extremely painful facial condition, that can make talking impossible. There is nothing you can do to relieve the pain but can you help me to find a quiet place where I can recover. Thank you very much. I have used it at supermarket check outs as it seems to be so cold in the stores it always triggers an attack. XX
I live alone on a small island that is served by First Responders/Fire Department, it was their suggestion so that in case of an emergency they would have all my data at hand. In severe attacks I can’t speak and I have HFS. I have drug allergies as well as all the meds I take for TN2, etc. I also travel alone and don’t want to get caught in a situation where I can’t explain what is going on. And don’t want to land in an emergency department sometime with no info. I just got the bracelet and so far haven’t needed it, but the TNA card sure came in handy this winter when I had a lot of connecting flights and near the end was in considerable distress. I just wanted to get on the plane with lots of time and not have to deal with crowds. I silently handed the card to let the flight attendants know I might be in more distress at some point and in case the HFS started coming on. Basically I didn’t want to scare them:), and I did not want to speak to anyone. Somehow I felt less alone in my agony because I felt a little protected with the card. I think the bracelet will offer the same comfort. I may never need it, but emotionally it is great backup. Having another card like one we’re discussing here would be even better. It would take a lot of pressure off. The TNA card is inadequate for my situation.
lizloulou said:
Has the medical alert bracelet helped during an attack or given you a chance to educate someone?? Worth getting??
Bellalarke said:
I have a simple card from TNA. On the back it there is an illustration of a mask-like-face with three lightening bolts come from it. The text says: Please be patient with me. I have a neurological condition that causesintense nerve pain in my face when I try to talk. Cold weather and wind also cause the pain.
I got this card when I paid a member ship last year to TNA.
It says as much as needs to be said in some situations. I have used it to pre-board aircraft and to let the flight attendants know that I could experience difficulty during the flight without having to go into lengthy explanations. The few times I’ve used it people generally responded well.
(Although one fellow said ,“well I haven’t seen that one before” and I wasn’t sure of his tone so resisted giving him the finger…)
I don’t know if anyone else has done this but I also got a medic alert bracelet to use when I’m away from home.
Wonderful:). Mostly that’s all we need, a quiet place to recover and get on with the day. Thanks for letting us know. Xo
valley girl said:
I am a member of TNA.org.uk and they send you a card the size of a credit card with a picture and some basic information on when you join it is very useful on the back it just says…I suffer from Trigeminal Neuralgia, an extremely painful facial condition, that can make talking impossible. There is nothing you can do to relieve the pain but can you help me to find a quiet place where I can recover. Thank you very much. I have used it at supermarket check outs as it seems to be so cold in the stores it always triggers an attack. XX
I am trying to gather some "bullet points" from this discussion and seeing if we can come up with something suitable.
Bellalarke said:
I live alone on a small island that is served by First Responders/Fire Department, it was their suggestion so that in case of an emergency they would have all my data at hand. In severe attacks I can't speak and I have HFS. I have drug allergies as well as all the meds I take for TN2, etc. I also travel alone and don't want to get caught in a situation where I can't explain what is going on. And don't want to land in an emergency department sometime with no info. I just got the bracelet and so far haven't needed it, but the TNA card sure came in handy this winter when I had a lot of connecting flights and near the end was in considerable distress. I just wanted to get on the plane with lots of time and not have to deal with crowds. I silently handed the card to let the flight attendants know I might be in more distress at some point and in case the HFS started coming on. Basically I didn't want to scare them:), and I did not want to speak to anyone. Somehow I felt less alone in my agony because I felt a little protected with the card. I think the bracelet will offer the same comfort. I may never need it, but emotionally it is great backup. Having another card like one we're discussing here would be even better. It would take a lot of pressure off. The TNA card is inadequate for my situation.
lizloulou said:
Has the medical alert bracelet helped during an attack or given you a chance to educate someone?? Worth getting??
Bellalarke said:
I have a simple card from TNA. On the back it there is an illustration of a mask-like-face with three lightening bolts come from it. The text says: Please be patient with me. I have a neurological condition that causesintense nerve pain in my face when I try to talk. Cold weather and wind also cause the pain.
I got this card when I paid a member ship last year to TNA.
It says as much as needs to be said in some situations. I have used it to pre-board aircraft and to let the flight attendants know that I could experience difficulty during the flight without having to go into lengthy explanations. The few times I've used it people generally responded well.
(Although one fellow said ,"well I haven't seen that one before" and I wasn't sure of his tone so resisted giving him the finger...)
I don't know if anyone else has done this but I also got a medic alert bracelet to use when I'm away from home.
A hearty thanks for all your effort in this, Scott. What can I do to help?
I am wondering if a good option would be to have two different cards, with different bullet points, one that addresses TN1 and one TN2.
Three and a half years ago I had more TN1 but now it is mostly TN2 and it is everyday and worsens as the day goes along sometimes into burning, pulsing agony (unless I am home alone in my studio with my mouth shut and don’t get in the car, in which case it merely worsens into misery…)
I also meant to add earlier to the question about the medic alert bracelet that I also get GPN attacks, so it is very complicated for emergency.