Trigeminal neuralgia tic doloreaux

[Stacianica]

Hi, wondering if there are other sufferers of Trigeminal Neuralgia, also known as Tic Doloreaux. I have had this horrendous malady since one day I just woke up with it in May of 2009. It's never gone away since. It feels like what I would imagine being shot in the face feels like...except it occurs All of the Time. Mine is atypical in the sense that it doesn't seem to have an actual trigger to experience the shooting pains, my pain is simply firing all of the time. TN is nicknamed "The Suicide Disease" due to the high rate of suicide among those who suffer with it. It sucks to say the least. Anyway, sometimes I feel kind of alone in this diagnosis and I was hoping I might be able to connect with anyone else who has this. I'm searching for answers, causes, treatments that have worked/didn't work or you, weird experiences, helpful tips...basically, anything you've got for me. Thanks BlueLighters!

 

[Bluefrogger]

Nicknamed "The Suicide Disease" due to its high rate of suicide.
I'm really sorry to hear that you are suffering, in many ways. There are many horrid pain disorders that are sudden in onset, and researchers/doctors or through the grapevine so to speak, they get labeled as a Suicide disease. I have CRPS aka RSD and have have lived with chronic pain for around 10 years now. I have to still believe that it is as curable! The same as it so suddenly appeared, believing it can as suddenly disappear is the only way I can make it through the day sometimes. Although I don't have the same disorder as you, I do understand what you are going through. You are not alone in you're fight.

Please check out the "The-Pain-Management-Mega-Thread-version-3-0" and you will meet a lot of warm and caring people that are forced to live with pain every day. You can also feel free to send a PM to me if you ever feel like venting! Many of us have felt drastic measures would be the only way out at one time or another. Please remember that you are a very valuable person and never let the disorder define who you are!

 

[Stacianica]

Thank you, Bluefrogger for replying and for your kind words & direction to the Chronic Pain Megathread. I'll certainly check it out. Admittedly, I have never heard of this awful condition you have until reading your post just now. I did a quick Google search and will search out some more about it when I'm done writing you back. Sounds just awful! And actually, at first glance, I share some uncanny similarities to its symptoms. Likewise for you, feel free to add me and strike up conversation with me at any time. I know I could use a friend that can relate and I can be a good listener and friend in return. If you don't mind, I certainly don't mean to pry but after doing a little more reading I may have some questions for you. Many thanks again!

!

Could you have just saved my life?! You have definitely lead me to consider a diagnosis Of which I have almost every symptom, according to the following website. I'm completely blown away right now after reading the information on this site:

http://www.rsdfoundation.org/en/en_c...uidelines.html

I have a movement disorder that causes me to ambulate either with a cane or walker. I have cyanosis. I have constant burning electrical pain on the right side of my face around the top of he orbital bone, cheekbone into top & bottom teeth and into the jaw a little. I get spasms in my legs, tearing, shocking electrical sensations shooting up my legs, both, more more frequently on the right side. Sometimes my body doesn't do what I'd like it o do. I fall, get stuck, etc. I have a huge amount of difficulty regulating my body temperature, I even have the fast growing nails with deep grooved ridges. I mean, this is me to a Tee!

After three and a half years of seeing a myriad of doctors, specialists, neurologists, pain treatment centers, seeing other doctors so that other drs can ruling out psych issues and the fact that I'm not faking all while watching my life and abilities slip away. Where "the best in the business" simply answer "I don't know what's wrong with you".

Diagnoses of MS, then no MS, optic neuritis, then no optic neuritis despite he blackness I always see out of my right eye, they say I'm not blinded. I don't argue so I can keep my license and have some element of independence.

I've never met you, and in one lovely written post, you manage to lead me toward something I've been searching for since the sudden onset...a glimmer of hope. Because, with a diagnosis comes the possibility of treatment. Treatment for not only the symptoms, but the root of he issues at hand. I keep hearing that early detection is key, yet without a proper diagnosis, I'm a liability to treat, thus no one will properly do so.

I am on cloud nine...for once, I have hope. And I could never thank you enough, but I will start with this....Thank You!

 

[Bluefrogger]

Knowledge is power!

Knowledge can truly be powerful! I'm so happy for your discovery and always happy to help someone if I can. Keep-up the researching!!! That is the key to truly defining what it is all about to you. Only you know what you're body has been doing and it is very hard to really define it to a doctor in 5 to 10 minute segments at a time! Also, they dont always get the right message, clues or get on the right track. Don't be afraid to "educate, with tact" your doctor and be ready to discuss and be active in what the next path or goal is that pertains to you as an individual! I have been made to feel really stupid at times when asking a question "should never be stupid."Note: reminder to be careful also what can be found on the internet can't always be taken as a reliable source. Wish that I could help the pain but glad to be of any help! Good for you!!!

 

[Asclepius]

Hey Stacianica!

Thanks for sharing your story, am sure there is at least one BL'er Im aware of who suffers from this affliction too. Hopefully they will be on.
Bluefrogger said it all really.
Welcome to BL.

 

[Stacianica]

Seriously, you are all awesome. I spent most of the following six hours doing research and I must thank you for the leads and the unconditional empathy I've experienced with Bluelighters so far. Awesomeness. Pure, Awesomeness. Yes, I agree with you regarding the "educating with tact", I've done this carefully and tactfully. Sadly, I've been met with egos and suspicion. I think they honestly like the feeling of knowledge superiority. I've found the right blend more often with using said class, manners and a teensy bit if playing dumb as a side dish to let them believe they still have that upper hand. At least until I find someone I trust and can have the necessary rapport to aid healing on a multi-dimensional level. But, til then...and in the meantime...and during, I express my thanks to you all. Xo

 

[Bluefrogger]

^ Yes!!! Always a good idea to be "clueless like" around the Doc's. They can take a comment so many different ways!
Silent or quiet can be used very effectively to not get too much attention at times and not to hurt delicate but huge ego's! LOL