[Rae of Hope]

Hello!

I'm new to the forum and wanted to introduce myself. I have been diagnosed with TN for about 9 months now. I'm 45 years old. In one of the Texas TNA newsletters, they surveyed 1300 members to see how long it took them to get diagnosed. As most of you know, it can take awhile. I was in the top 5% of those surveyed and was diagnosed immediately by a new dentist that just took over from my old dentist. It's rare to get diagnosed so quickly. I had two cavities filled and it was the final insult to the nerve. I believe I started with preTN and by the time I saw my neurologist (who confirmed the diagnosis) about five days later I was having the electrical zaps and being stabbed in my face. Carbatrol knocked the sharp pain out within 2 days.

I also deal with a secondary type of pain that also comes in attack form. I am mostly pain free during the day but I have one or two attacks a day when the nerve is mad. The attacks can last for minutes up to 2 hours but generally are 30mins in length. It is lancinating pain in the right half of my tongue, top/bottom teeth, jaw, cheek, or ear all on the right side which can vary in intensity. Triggers have developed steadly over time - loud noise, chewing, talking, wind on my face and just recently brushing my teeth. These triggers trigger the pain I just mention above since Carbatrol when it works, knocks out the sharp pain. The pain has been steadily aggressive and jumping over my medication. When that happens then I get the lighting bolts and the most horrific pain in my teeth that will last for 4 seconds than off for 50 seconds - that lasted for hours once until I went to the ER. I understand what hell is upon this earth - classic TN pain! The longest remission that I have had is 7 weeks. The attacks come in clusters and then leave for a period of time.

My body is all of a sudden rejecting Carbatrol. I have been having intolerable side effects. Everytime I reduce this med they go away. I had medicine induced depression on Neurotin (great pain relief though!!). Lyrica doesn't work well and my Neurologist said it is time to see a Neurosurgeon.

I am scheduled to have MVD surgery with Dr. Jonathan White at UT Southwestern in Dallas early next month. It concerns me that some of the pain that I have deviates from the classic profile. I think if I wasn't diagnosed so quickly that I would see more of the classic symptoms. But, hey, I not willing to get off the meds to find out! Ha! Can anyone with Atypical TN weigh in on what I described and let me know if it sounds familiar? No neurologist nor neurosurgeon has diagnosed me with ATN but I covet your opinions.

I have a great God given peace about the surgery that is coming up. I will let you know of the outcome.

I look forward to getting to know you better. I know that just our sharing and communing together is a way to strike back against TN. Knowledge, friendship, peace, love, community,and hope are powerful antedotes against pain!

Be Blessed!!

[Rrae]

Hello Rae of Hope! I LOVE your screen name!



So glad you've come to NT. Thank you for introducing yourself!
I see you've already found the TN forum. You'll find many wonderful folks there!
I'm sorry you've been hit with this battle, but you've certainly come to the right place! We constantly learn and grow together as we do our best to stay on that Rae of Hope!

It'll be great getting to know you!
Just hollar if you have any Q's or need help in finding your way around this wonderful forum!

Truly Caring
Rae

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number of fellow members here to assist you. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

[MelodyL]

Just wanted to say hi and while I have TMJ and that's a big pain in the tooth, I can't even imagine what you have gone through. All I can do is tell you that you have found friends here and hope that you visit many of our forums.

Please take care and good luck on your upcoming surgery.

Melody

[NurseNancy]

hi rae,

i don't know what TN is, forgive me. i'm dealing with MS; multiple sclerosis.
you sound so knowledgeable about your situation. and we say that knowledge is power. you also sound powerful and a good advocate for yourself.

i'm glad you found us. i know one of our forums will be a good match for you and you will get info and support there.

good luck with your surgery. please keep us updated.

[painterchic]

Hi Rae,
Just found this site and one of the first things I read was your post by chance. I have ATN. (Atypical Trigeminal Neuralgia) (or Atypical Facial Pain)You asked about that. I got diagnosed fairly quickly as well in the world of TN.(Trigeminal Neuralgia). Lucky me I guess. I am not a good candidate for surgery as ATN has a much lower success rate and higher risk rate than TN, because it's not a simple matter of a blood vessel and nerve bumping each other and starting problems. I have heard wonders of the MVD surgery (micro vascular decompression for anyone reading this) from another forum I am on so good luck to you on that, I hope you are one of the people for whom it is a life changing procedure.
You asked for someone with ATN to weigh in? Well, I'm not sure what you are asking exactly but I'll put in my two cents and see how it goes. My experience and knowledge of ATN vs TN is this: (And I get both). TN gives you more short, electric, ice pick stabs, with common triggers like cold, breeze, noise, stress, chewing , talking, etc etc. ATN is more of a constant pain, like a dull or boring pain, deep, lasts for hours, days even. Less electric but sometimes. Some numbness or tingling sometimes. But often accompanied by the sharp stabbing TN pains. Triggers can start the whole thing, same as TN, it just lasts longer. For me, ATN symptoms can respond some to pain meds like hydrocodone, percocet, which do not help with the TN stabs, but for me also, traditional meds like Tegretol don't touch the ATN component or not for long. Does that make sense? No one seems to have an answer for me WHY or WHAT causes ATN, whereas TN is a blood vessel malformation or compression on the TN nerve. Does that help at all?
Good luck with the MVD!

[(Broken Wings)]

Hi

So sorry you have TN. Pain is not a good thing.

I hope you get relief soon.