New and want to connect

Hello everyone,

It's bittersweet to meet everyone - I wish we wouldn't have, because that would mean we don't need to be here, but I'm glad we did.

As you can tell, I'm new to the site and to TN. I was diagnosed at the end of July, a week after the pain started. It sounds like I got lucky in that regard. My doctor is a neighbor and friend so I thought I could talk to him and get a sympathetic ear. He was sympathetic of course, but jumped right on the medication band wagon. He didn't tell me it was a diagnostic tool, he said it would take away the pain. He also refused to recommend a neurologist, saying that they woudl just say the same thing.

True, they probably would. But, when I told him, after a 6 weeks of being on gabapentin, that I had break through pain, he said, "Really? Oh, well let's try a second line drug." Um, dude, you put me on a second line drug.

So I called thee University of Iowa neurological clinic and made my own appointment. It's coming up this Monday! I never thought I'd be in a position were I'd beg for surgery, rather than a quick fix medicinal option.

I stopped taking the gabapentin two weeks ago when I realized (why did it take so long to realize?) that my fatigue, weight gain, and depression were side effects, not because of school and family things. Why didn't I realize something was wrong when I entertained disturbing thoughts of suicide - a nice little drug side effect?

My family is sympathetic. My boyfriend is too, but he doesn't how to handle someone who's ill (he just makes jokes about how I might get a needle stuck in my face). But I still feel like I'm putting too much on them, like it's only a matter of time before they start looking at me and saying, "Jeez, will ya shut up about the pain already?! Stop being so dramatic!" I'm pretty sure they won't, but no matter how many different analogies I come up with, there's still a gap of understanding.

Thanks for listening, everyone! I think I'm done for right now.

~Paige

http://www.livingwithtn.org/forum/topics/a-writeup-about-caring-for

here is an article you can print off for your friends and family-- they don't always know what to do or say --- we are only 12 in every 100,000 people!

I was on "those" type meds for a year - ruined my life --- picked the most experienced MVD surgeon - but he was in michigan - flew there from missouri and had the MVD surgery done - it was the longest year of my life, depressive, medicated, and trying to research the procedure! 2 nights in the hospital and was driven home.

Another good site is the TN Association - if it were not for these people on both sites -- I would still be in agony instead of remission

Keep reading ALL you can - and stand up to doctors - YOU are the customer -- find one WITH TN patients already!

Look under our favorite "doctors" tab above

Learn/Research/Read/

Another Great Source - our "bible" here - book - Striking Back, by Dr. Ken Casey - Invaluable

Keep posting and WELCOME!

Thanks, KC. I’ve visited the TN Association site, great resource!
I’m going to pass that article on to my family and friends. My mom had Shingles this past spring, so she does some actual empathy having dealt with senseless pain herself. my sister has been my biggest supporter, but I know they wish they had a better grasp on the day to day pain.

Whilst not trying to diminish your moms pain with shingles, I have had both and there is no comparison. That is an upside of TN, nothing else seems so bad anymore! LOL!! My family have remained wonderful support even after all my years, so there is hope there My friends and staff have been great too, but heck, no one understands like you guys, as you know it!

Paige, welcome to the site. I hope you get relief soon! I take Tegretol and it seems to work well for me except that I have had to increase it a little. I was diagnosed in August, about 2 weeks after the severe pain started. I had had some pain for a couple of months, but it didn't get worse until I went to the dentist. Then the pain brought me to my knees! After a few more dentist visits plus me having time to pay more attention to the pain, he told me it sounded neurologic. I called my family doc and they immediately took care of me with the Tegretol. I hope you find this site therapeutic.

Also, here is an article for you and your family.

https://www.aans.org/Patient%20Information/Conditions%20and%20Treatments/Trigeminal%20Neuralgia.aspx