Hi red off the top of my head I don't know of a way to ensure the data would not be hackable. It's something that would require a lot more thought because like you said it would involve patients information. Obviously people would be writing down their own medication on the card but I'm sure lots of us are on lots that wouldn't fit into a small space. It may be that a QR code with personal info just isn't the way forward and it instead takes people to the fact sheet on the site.
Hi Merrrra,
I know what you mean when people ask if its burning right know. I have had several people ask if I am having an attack right know after telling them about the "lightning strikes".
Scott
Merrrra said:
This is a great idea! It takes too long for me to describe my problem to people and they start to not care or stop believing I have it. They just don't get that it can be constant pain. When I describe the burning I have they always ask "does it burn right now?"....well I just told them it burns all the time. And they don't understand the medication that goes with it and how that makes me feel awful and I still have the pain. Love the idea!
Yeh Merrra and Scott, it's like do they expect you to be doing cartwheels or something because you are in pain??? or WHAT!!!
I've had that question too. Seriously you get soooo used to it being there, but you can't really explain that to them... they just wouldn't understand..... Deep sigh....:(
Brilliant idea.. Painful morning today, so I had to drag myself down to the office pain and all, with my hot water bottle and all. We have a trainee right now, with a habit of waltzing into your office. Which she did this morning and saw me with the hot water bottle pressed against my cheek. I swear she stared at me like I had grown an extra head. I was in too much pain at that moment to even attempt an explanation.
Way to go, Scott !! An excellent idea, since people do not really know or understand a whole lot about this problem.
I found that out when I was in hospital recently and two of the nurses insisted on turning the room temperature way down. A card handed out to those nurses might have helped.
My last three days in hospital were unbearable until a wonderful nurse came and "rescued" me and moved me to another room. Thank heavens for caring people like that !
I believe a small card with a summary would work wonders.
Regards,
CH
How nice it must be to be able to speak.
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!
I don't think people will ever understand. And unless they have it themselves it's unerealistic to expect them to. It is a very lonely disease/condition. However, the need for the card, for me, is to communicate when I'm in the middle of an attack. While some days I don't succeed, I am committed to not letting TN dictate what my life will be. I need a card to present for the moment I'm in mid-sentence and must stop for an episode of pain. My TN episodes are 2 minutes apart so something to communicate to them to 'hold on a minute' would be useful. As we know when it passes we're back to normal until the next one hits. I think it would a helpful tool.
Bless everyone who has provided input in creating the card. I have read and identified with every one's frustration and pain here and can't wait to see it. I have been home for 3 weeks and when I do go out I just can't handle the energy it takes to try to explain it when most folks don't really get it. It's like that traditional, "how are you" but don't really tell me greeting.
I am excited about it.
Thank you.
Yes, the eternal “does it hurt right now” or “are you in pain right now” and then the peering your face looking for proof…exhausting.
I don’t know about anybody else, but I have learned to have quite a bit of composure with my face while being in very bad pain. And it’s not just for others, it’s for myself, to help keep the muscles of my face as relaxed as possible. The deeper the pain, the deeper I go to find a quiet spot. Only the people closest to me know when I have a certain look on my face that it is over the top bad and please don’t talk to me anymore.
Scott said:
Hi Merrrra,
I know what you mean when people ask if its burning right know. I have had several people ask if I am having an attack right know after telling them about the “lightning strikes”.
Scott
Merrrra said:This is a great idea! It takes too long for me to describe my problem to people and they start to not care or stop believing I have it. They just don’t get that it can be constant pain. When I describe the burning I have they always ask “does it burn right now?”…well I just told them it burns all the time. And they don’t understand the medication that goes with it and how that makes me feel awful and I still have the pain. Love the idea!
So there are a ton of responses to this which should help you realize what a fantastic idea it is. I hope you share your creating with us after you make it, if you do it electronically. Thank you for the idea!
Hopefully soon there will be something that can be used by anyone that wants it. Thanks Scott
Debbie said:
So there are a ton of responses to this which should help you realize what a fantastic idea it is. I hope you share your creating with us after you make it, if you do it electronically. Thank you for the idea!
I got to be very good at masking the pain when it was bad, although sometimes no matter what I tried I still couldn't hide it.
Bellalarke said:
Yes, the eternal "does it hurt right now" or "are you in pain right now" and then the peering your face looking for proof...exhausting.
I don't know about anybody else, but I have learned to have quite a bit of composure with my face while being in very bad pain. And it's not just for others, it's for myself, to help keep the muscles of my face as relaxed as possible. The deeper the pain, the deeper I go to find a quiet spot. Only the people closest to me know when I have a certain look on my face that it is over the top bad and please don't talk to me anymore.
Scott said:Hi Merrrra,
I know what you mean when people ask if its burning right know. I have had several people ask if I am having an attack right know after telling them about the "lightning strikes".
Scott
Merrrra said:This is a great idea! It takes too long for me to describe my problem to people and they start to not care or stop believing I have it. They just don't get that it can be constant pain. When I describe the burning I have they always ask "does it burn right now?"....well I just told them it burns all the time. And they don't understand the medication that goes with it and how that makes me feel awful and I still have the pain. Love the idea!
Love the idea. Most people think I just get bad headaches. I would take a bad headache over this any day!
Hi Red,
Sorry it has taken me so long to respond but I have been sidetracked a lot lately and my brain is usually in neutral.
The Attending Physician Advisory form is a great tool to have and Thank you for all work work. As always your research, writings and advice is top notch.
There is no way we could get Attending Physician Advisory info on a card and I would advise all to have one filled out and carried with them and/or the contact have one. My vision for the card is mainly to give to other people that ask about TN but we can't explain it. It seems that you can tell them what sites to go to but when they get home they never do. If they have a card they take home and they can look at later and follow up and learn more about TN hopefully. There is a place for contact info that a doctor or er can use to get the info to help the patient. Thanks again.
Scott
Richard A. "Red" Lawhern said:
We've developed an Attending Physician Advisory form on one type-written page. If you can figure out how to get the essential data on the back of a wallet sized card, then you're a better writer than I am, Scott. Feel free to take a look at the form. It's under our Face Pain Info tab.
Regards, Red
I get that. I live alone so most of the time only the cat knows how bad it is…
Scott said:
I got to be very good at masking the pain when it was bad, although sometimes no matter what I tried I still couldn’t hide it.
Bellalarke said:Yes, the eternal “does it hurt right now” or “are you in pain right now” and then the peering your face looking for proof…exhausting.
I don’t know about anybody else, but I have learned to have quite a bit of composure with my face while being in very bad pain. And it’s not just for others, it’s for myself, to help keep the muscles of my face as relaxed as possible. The deeper the pain, the deeper I go to find a quiet spot. Only the people closest to me know when I have a certain look on my face that it is over the top bad and please don’t talk to me anymore.
Scott said:Hi Merrrra,
I know what you mean when people ask if its burning right know. I have had several people ask if I am having an attack right know after telling them about the “lightning strikes”.
Scott
Merrrra said:This is a great idea! It takes too long for me to describe my problem to people and they start to not care or stop believing I have it. They just don’t get that it can be constant pain. When I describe the burning I have they always ask “does it burn right now?”…well I just told them it burns all the time. And they don’t understand the medication that goes with it and how that makes me feel awful and I still have the pain. Love the idea!
Quick point one:
Slam your head in a car door and then you’ll understand!
This is a wonderful idea because that would have been very useful when I went to Bible Study yesterday. I had people asking me the same question 10 different ways. As I was talking in this well air conditioned room with a scarf wrapped around my face...I was thinking I should have brought the WebMD print out. The information card sounds better. Then friends and family have asked...I tell them to Goggle it...they just keep right on talking.
Thanks
Sabrina
That is a good idea. In my experience as soon as I say TN to a layperson they often say, “I have neuralgia too.” And no matter what I say they don’t understand the severe pain. So I would suggest writing that it is one of the most severe pain conditions and that talking, touching, or even a breeze on the face can bring on the pain. Maybe a drawing of the face with the tn nerves showing. a card may be helpful to hand out to those you need to talk to but can’t in flare up times, such as a cashier or someone starting a conversation with you in a waiting room.
1 retired teacher said:
1 retired teacher, that is too funny! ill have to use that one, except maybe add to tell them to hook up to the battery for continuous shocks while they slam their head in the door! Lol :)Quick point one:
Hi tulips, On page 4 of this discussion there is a rough draft of my idea for the card. I have changed a couple of things but the basic idea is the same.
Thanks,
Scott
tulips said:
That is a good idea. In my experience as soon as I say TN to a layperson they often say, "I have neuralgia too." And no matter what I say they don't understand the severe pain. So I would suggest writing that it is one of the most severe pain conditions and that talking, touching, or even a breeze on the face can bring on the pain. Maybe a drawing of the face with the tn nerves showing. a card may be helpful to hand out to those you need to talk to but can't in flare up times, such as a cashier or someone starting a conversation with you in a waiting room.