Introduction--Brace Yerself! It's a Long One! :)

Hi!

I am starting this journey as of Wednesday, February 7th, 2013, but I am slowly discovering I've had "attacks" before and just figured they were my sinuses, my teeth or repercussions from my Traumatic Brain Injury. I am an English Instructor for a local college and I also teach GED classes (which is my passion!). I am also a mommy to a 7 year old. I've been sober for 14 years, and still go to meetings.

Anyway, last Sunday night, I went to a Super Bowl party with my daughter, and when we got home, she went in the shower and I popped on, "Downton." Suddenly, an elephant moved into the roof of my mouth. There was severe pressure and stabbing, all radiating from my palate and through my upper teeth. I hurt so badly. I got my daughter in bed and tried aspirin (I read somewhere that severe, sudden jaw pain was a sign of an impending heart attack.) Because of my addiction history, most OTC pain relievers knock me out. (LOL--the joke is that 2 ibuprofen are like a "Mutual of Omaha's Wild Kingdom dart to my butt...I'm out!)

But the aspirin didn't touch it. I realized my heart was fine, so I waited until I could take something else. I was in so much pain, I decided to wax my lip and brows because I figured I wouldn't feel it. I was right.HA! When the time came I could take something else, I took 2 Tylenol. Nothing. NOTHING. I was literally up 6 of the 7 hours that night. I finally was able to take 2 Aleve, and I passed out. I woke up just in time to get my daughter to school, came home, and slept all day until I could see my doctor--Dr. Allison. He saw that I had a sinus infection on my left side, so he gave me a Z-pak but had me double up the dosage.

Tuesday was much better--hardly any pain, so I figured, "YAY Dr. A! YAY Z-pak."

Wednesday, however, proved to be horrific. I had an attack at 8:30 that morning, and one at 11:30. My student from Kurdistan said, "something's wrong, my sister. I see it in your face. Your face shows something wrong..." I called Dr. Allison's office and cancelled my class for that afternoon. I could not take this pain anymore. I must have been involuntarily grimacing--when the pain would lay off, it felt like someone was stretching the right side of my face back. (side thought--if we could bottle that side effect, we'd be rich selling it to Hollywood!)

From what little I have read on here, I was lucky. Dr. A and his nurse both said, "this sounds something similar to Trigeminal Neuralgia." (I need to say here it was Dr. A who diagnosed my liver/bile duct disease a few years back, but he sent me to Omaha to a specialist who confirmed his suspicions. He also guessed that my residual liver pain after my blood levels leveled out were not caused by more liver problems, but 6 cervical herniations in my back. He sent me to a neurosurgeon in Kearney, who confirmed Dr. A's suspicions.) Because I can't take prednisone, he's trying me on Ibuprofen 800's, 3x a day. It's tempered it a little, but I've had attacks Thursday, yesterday and woke up today with pain. He's giving it until Monday and then we'll do an MRI and move forward. He wants to get the nerve swelling down...and confirms that "oh, this pain is real, and there is hardly anything like it." I said, 'it's shotgun worthy," and he said, "yep." Can I just say I love that he and his staff all KNOW this is real, KNOW it isn't made up and KNOW there is hope?!?

So I've done a lot of research online about this in the interim. And I am SO BLESSED to find this forum. In the short time I've been on here, I am reading about things I've suffered through but had no name for them. And I've laughed and sighed and felt the relief of hearing others speak my pain. I am so sorry others feel this way, but so relieved I am not alone.

*whew* :)

In hope...Helenann

Warm Welcome Helenann,

Sounds like your Dr. A is a true keeper! Finding an accurate diagnosis can be difficult with TN, but I’m glad it’s on your Doctors radar!
Most important will be finding pain relief that works for you. Usually that means an anti-convulsant to begin with.then it takes time finding the right dose that works for you. It takes time, side effects tend to disappear/dissipate after a few weeks.

Read as much as you can, but take heart, many people are able to live and function normally once they find a med or combo of meds that works for them. It isn’t unusual to experience a remission too. ( I had an 8 year remission!)

All the best to you, let us know how things go in the coming weeks!
(( hugs )) Mimi xx

Welcome Helenann~

I felt the same way about finding this site and being able to read about others' experiences. It truly does help to know i'm not alone and i'm not crazy. (ok ok...i might be crazy, but that's a whole other pot of beans...)

Anyhow....glad you found this place.

~Mistee

Thank you, Mistee. The oddest thing so far has been the fact I am finding all the little quirks I've been living with for awhile probably all fall under TN. :)

(well, most of the quirks...some are just ME--HA!)

The first step in this journey is having a Dr. say the words TN. Some peope have gone months, years without knowing!

Welcome and hope that you find your answers. Did the doc mention starting anti-epileptic drugs?

Kimberly

Glad you got diagnosed so quickly! I did as well. Have they tried you on anti-convulsants yet? Usually that works. Like Mimi said, READ AND EDUCATE yourself as much as you can! Good luck to you and welcome to the group!

Helenann, I can so understand just what you are saying, I felt I had come “home” when I first joined here, no one understood me, no one had ever heard of TN, heck I had not! Rare illness! My heart sunk. I had read somewhere, if you are going to have an illness have one that’s as common as dirt, they have the cures for them! But as time has passed I have come to peace through this group. There is so much support, guidance and yes, I will say it , love.
I hope you come to think the same.

Thank you, everyone.

I am a bit disheartened tonight. I was doing really well on the Ibuprofen 800's, and was 1/2 hour late tonight and had a horrible attack. I was sitting there with my daughter watching, "Princess Bride" (her first time!), eating chocolate chip cookies and it struck like lightning on my right side. It started on the lower jaw, radiated forward and into the tongue. It's fading now, but it feels like I've had a stroke on that side--not numb...not at all. Tingly and my right ear feels like Mark McGuire took a bat to it.

I wanted to scream. I wanted to cry. How DARE this happen on a perfect snow day here in Nebraska...with my daughter. I felt like something was trying to rob me. I was worried I would need to go to the hospital--who would I call to pick up her? What would I do? Da*$ IT.

So, tomorrow, I call Dr. Allison and take the next step. We'll keep moving forward, right? I will NOT let this rob me of anymore than it has. I am angry. I am scared. And I am relieved this site exists, although I would NOT wish this pain on anyone.