...do any of you have a letter from your neuro doc stating that you have TN and what thee ER docs should do? When it hits, the LAST thing I want to doo is explain it all over again.

Yep, and you're more likely than not to find ER folks who've never heard of TN.

Here are guidelines from the TNA for ER visits during severe attacks -

Emergency Room Management of Episodes of Severe TN

Yes, it's always a good idea to have a letter from you doctor. If the ER is in a big enough hospital, you should ask for the neurologist on call as well.

Good luck and I hope you never have to use the letter, but best to have it and a plan. Talk over with your neuro what would be best to treat you with in that situation.

Jean

I went to the ED once because of a problem (my meds had made me really sick, they weren't sure which one, so we had taken me off them....not a good idea after all!).

The ED doctor knew what TN was. He gave me IV valium, IV benadryl, IV toradol (like a liquid aspirin, but works GREAT), and IV phenergan. This cocktail worked wonders. He also gave me a script for valium to take home. If a doctor is unfamiliar with TN, he really isn't going to just go off a letter from your doctor. He will go look it up (I work in healthcare and have worked in emergency departments). He has his license to worry about. He may call your doctor, but trust me, you don't want to wait that long for meds!!!!

Good point. I'll have to get one from mine and keep in mind the meds you mentioned.

Ellena

I don't have a note I carry with me. But my doctor has informed our local hospitals to flag my record...if I go into the ER, they are to contact him or the neuro on call. It has worked wonderful!! Best of luck, Nikki