I can not fill out the survey posted today

checking email today and i see a survey they would like us to par take in ... i can not remember the answers to two questions on page one and i can not go to the next page unless the questions are answered ... how long i have had TN and which nerves are effected ... i guess i can call my neuro monday and ask ... *shrugs*

I actually have my first neuro appointment on Wednesday so I just had to kind of juess the "what nerve" question.

I actually have my first neuro appointment on Wednesday so I just had to guess the "which nerve" question.

i read my profile page to get the answers to the first page of survey ... some of the questions were hard for me to answer ... about not being able to go to work/school because of the pain ... i have never held a job since i was a teen ... i had to drop out of college due to a motorcyle wreck i was in when i was 18 ... i have never collected disability for it over the years ... i dont live high on the hog but my husband makes enough to support us both ... suffice it to say, i dont collect disability which was one of the answers

I'm sorry for you that you've had such a horrible run! I'm slightly envious that you have a supportive and supporting husband. I've been on disability for a number of years for something unrelated and have had a number of lowly paid back breaking part time jobs in that time to support myself. I have no holidays, sick leave or any other lovely things. Woe is me. (feeling sorry for myself now!!!)

I filled out the survey as best I could, some of the questions weren't an exact fit so I chose the answer that was closest. I was hoping for a blank at the end to explain any answers but there wasn't one. Oh well...

Did you check out any of the TN products to buy on Zazzle? I like the warrior sweatshirt. Might have to treat myself. It's been a rough few days. Had to cancel ANOTHER coffee date with my friend. Now she's not answering my texts. She's been understanding but now I worry I've lost another friend...not many left. :(

I took it too…but what’s the reason for the survey…i have been questioned more times than I cam tell you…

I believe it said to get WHO (world health organization) to recognize it and raise awareness in general. This will help for disability claims and things.


i take two drugs for vertigo, clonazapam and citalipram ... i dont know if those drugs are pulling double duty, vertigo and TN ... it would have been nice if there was a line to explain my choices ... where i was able, i left many blank

I took the survey and emailed a message to the email provided with a suggestion. I answered “family dr” on who diagnosed me when it was me and web md, then went to my dr and asked her if tn could be the problem. Like so many of us, i went to numerous professionals and pulled a tooth before a diagnosis

So that’s what I did and now I have an extraction site that has a tingly feeling when I hit it with my tongue …but it’s not as bad as it was…so I’m not sure if that feeling will all together go away…but I hope so…its been 6months

There's not enough leeway if one needs to explain a variation

I used to work at explaining the results of surveys I played no role in composing. It is common to find questions that can only be answered with an important qualification or caveat. Even if you answer to the best of your ability the question as posed, you often find that the question was really better asked as 2 or 3 questions. Surveys are easy to give, but good ones are hard to compose. This survey should have been tested before it was set loose globally. Unfortunately, dollars, hours and analytic skill are all in short supply.

To Bels,

I have lost many friends due over the years to this horrible affliction that we suffer. What I have found is that my "true" friends are still here (just a couple). I have also met new friends that are more understanding and that are even trying to help when the need be. It is heartbreaking though I know.

Keep your chin up....There is a huge group of folks on this site and hopefully you can call some of them your friends, that you could set up a "coffee date" with and chat while having coffee. Sorry if this sounds cheesy...I try to look at the positive when negatives keep bashing me in the face with this crappy hand we have been delt.


Wait, I didn't get a survey! :-)


Where is the survey found? Or is it only emailed to certain members?

Thank you!

If you go to the main page, you will find a link to the survey posted.