Tuesday, February 16, 2010

Tic Douloureux



Tic Douloureux...such a pretty name for such a nasty condition. It rolls off the tongue nice and sweet, but watch out because it will turn around and stab you with a hot searing knife that will bring you to your knees. I know because I have Trigeminal Neuralgia or Tic Douloureux.

TN effects the right side of my face only. I think the symptoms started about 7 months ago, but I was being treated for sinus infections and given anti-biotics, steroid packs over and over again. I have had a history of sinusitis, so who's to say these treatments weren't helpful. My primary dr. had even mentioned this crazy facial nerve that she thought could be causing some of the problem. As the pain became worse and more persisitant, she sent me to an ear, nose, throat specialist AFTER having a CT scan on both my sinuses AND my brain. He ruled out anything terrible and dismissed me with a suggestion I see an allergist. Of course, you can't just get in to see these docs within a few days. It takes weeks. So, during these weeks, more pain...debilitating pain. Back to my doc I go. She finally decides it's this tic douloureux and I should see a neurologist. While waiting for that appt., she puts me on an anti-seizure med, Tegretol, which is the most common drug of choice. The pharmacy gives it to me in a nasty tasting chewable...ugh! It will enter my system faster and in 100mg tabs, easy to adjust the dosage. I see that I am rattling on here, so maybe I should just cut to the chase...


...This says it all...

Let's just say I've been to hell and back, at least in my mind. I have a high pain tolerance and have had to endure some nasty ankle surgeries that ended up in a fused ankle, which I thought was the worst pain of my life. I'd take it any day over this. This pain is relentless. The trigeminal nerve is the 5th cranial nerve and it branches out in 3 directions, from the ear area, up to your eye area, you cheek area and finally you jaw area. My pain is a burning, stabbing pain. The pain can be triggered by the simplest of things...brushing your teeth, chewing, putting on make up, touching your face, a breeze on your face, talking, smiling, you name it! It's completely insane if you ask me.



This is an illustration of the MVD surgical procedure (skull cracking!)

I have now seen the neurologist, whom I really like. He spent a lot of time with me and explained all of my options. Medication is the best way to go, as the surgical procedures are very invasive and carry risks that I really don't want to take. As for now, I have my good days and my bad. When it's bad, it's bad. I've had my pitty parties, my nights of tears, sleepless nights too numerous to count. But, all in all, I do not have any brain tumors, I do not have cancer, I do not have MS, I do not have Parkinson's, to name just a few. I do have a neurological condition that I will have to deal with for the rest of my life. Big Whoop! We all have our cross to bare.

I am learning as I go. I am not a good patient. I tend to curl up into my own space and want to be left alone. I am a much better care giver than receiver. My husband deserves a medal for dealing with me. I have learned that laughter IS the BEST medicine for me. It may hurt my face like hell to laugh, but it's so worth it. There are friends who do this on a daily basis and I hope they know who they are and how grateful I am for it. Love you guys!



This has taken me away from my job on various occassions, but I am blessed to have such an understanding and caring boss lady...my daughter, Kira. Although, she does have the best neurosurgeon lined up to crack my skull open at any given moment! lol I have missed the time with my girls doing what I love to do the most...creating with my hands. But, I know, I will have many many more opportunities with them...you know who your are and I adore and love each and every one of you...what would we do without Paper Crown?

So, when I disappear for awhile or you don't see me on fb or don't show up for class, it's because the beast has reared it's ugly head. I am sharpening my sword and ready to fight back. I have always considered myself a compassionate gal, but now I really "feel" for people who suffer from pain on a daily basis. My heart goes out to them.

Thank you for letting me share my thoughts with you. Thank you for your support and love and well wishes. It means more than you know. I don't want to be pittied in any way. I just want to bring awareness to something I had never heard of before and yet it is more common than we know.

Oh, one more thing...it's 3:30am, not so uncommon anymore for me. The medication causes some confusion, fuzziness, loss of concentration, etc. I'm not taking the time to spell check or re-read...it's the rough draft your getting! It's who I am, afterall! lol

7 comments:

Jerry Nix said...

You're certainly a trooper. I've seen this condition up close and personal myself and don't understand how, or why anyone should have to deal with it. So good that you have a great support staff, especially that loving, caring, adorable husband of yours.

honstuff said...

I love you, sweetheart!

Robin Thomas said...

Chronic pain and pain management are so difficult on everyone. I hate that you and Jerry are going through this. It totally sucks. I don't know that it will last for the rest of your life, that is a possiblity but may not happen. You need that hope. Know that you are in my thoughts and I have a deep resentment for your trigeminal nerve right now. Big hug and a chest bump, I am so glad to have you in my life.

honstuff said...

Thanks so much, Robin. I think I just "FEEL" like it's going to be with me forever. I appreciate you reminding me of the hope. You are special, beyond words, to every heart you touch. And you have certainly touched mine...much love and gratitude. CB & BH back at ya!

Honey Lamb and I said...

ricusnFirst of all let me say excellent on the rough draft it was perfect! What a pain in the butt to have to deal with and not be able to make plans! I think of you all the time and wonder how you are at that moment. I am so glad you shared so much to help me understand more! I love ya

HollyDoodleDesigns said...

I'm praying for you, Nan. Sending you my love.

Vickie Merrick said...

Oh, Nanners......my heart goes out to you, girlfriend! I hate that you are going through all of this pain and wish it were an individual so I could physically whip it's butt and make it leave you alone. You described the condition so well and your "rough draft" was editorial quality. You are constantly in my thoughts (and prayers) and I miss spending time with you. Hugs, Vickie