Last night I as able to get half of a Gatorade down with my pills. Since this morning when I woke up, my pain has been 2x worse then yesterday. I got to the hospital on friday for a magnesium/lidocaine infusion but I'm terrified to go.. The nurses just don't understand how painful this really is. I understand that they usually see kids with cancer, but it's frustrating that they treat me like I'm not there and not to mention that I can hear them talking about me in the nurses station, since my room has to be right beside it. I may be the only kid at children's with TN, but I just want people to treat me as a human and not a rock. I know that a lot of you have probably been treated the same way, how do you deal with it?
I'm hoping this treatment helps you - let us know!
Have somebody at home print off something our Face Pain Tab
and hang it by your bed!
we are only 12 in 100,000 - we are so rare--nobody gets it - even the professionals
This did not used to be called the suicide disease for nothing!
I wouldn't worry about what they think or say if you can help it
Just keep coming here!
Hi Christine,
I am so sorry that you are in such pain, and wish it weren't true for anyone. Most of us have gone through many times when we and our pain have been misunderstood and/or underestimated. There is information under the Pace Pain Info tab about how to build relationships with our caregivers and medical staff that I found very helpful.
Mostly what I find to be true is that people don't understand because they are not educated about TN. When I became more educated about it myself, I was able to say things in an informed manner that helped them to understand. It seems ridiculous to me that we should go to such lengths to help them tho, they are the medical professionals. It does help to know most people will never encounter this in their entire careers.
I printed the nationally recognized pain scale(1-10) that I found on the net. Now when they ask me or when they don't, (when they think I am exaggerating) I just get it out of my purse and talk to them about it. The one I found had descriptions with each level to help determine what level you are at. Someone on this site shared this tip and I am so grateful they did. It gave me some clarity as well.
There really is help for you and this is just one way to help them so they know you are trying to give accurate information. Also, I carry a diagram of the trigeminal nerves that I printed, courtesy of SF Bill, that has the painful areas highlighted.
I so hope this helps you some and I hope the infusions help to stop the pain.
Hugs,
Sara
.
Another print-out that may help: a TN Fact Sheet is featured at the top of the main page. Take a couple of copies with you and share them with medical staff who don’t seem to understand. Tell them “this is what I’m dealing with.”
Likewise, there is an Attending Physician Advisory form under our Face Pain Info tab. Print out a copy and fill in the information. Keep it with you in a purse or wallet, in case you ever need to be in a hospital setting when you’re hurting too badly to communicate clearly. Likewise, I believe the pain scale Sara is referring to may be the McGill Pain Questionaire. Try a google search on that title and you should get into the right neighborhood. The following link will take you to an explained version at about.com
http://pain.about.com/od/testingdiagnosis/ig/pain-scales/McGill-Pain-Scale.htm
Go in Peace and Power
Red