Hi all, I just developed this issue in November 2012. I was diagnosed on march 18th. I'm trying to learn more about this to keep my kids and parents informed. I'm not sure what type of TN I have maybe someone can help with that. It was only on my left but now has started in on the right side too. Its sporatic with its appearance... But I do experience mild pain almost daily. I'm looking for info and support because other than my very supportive and concerned husband, not one thinks this is a big deal to worry about. But when I am in pain, to me its a huge deal and very real and scary. Any info or help would be great and appreciated.
Hi and welcome - sorry for your scary journey - that's why we come here!
The fastest way I got educated on TN (and you do need to get educated fast) -- We read "Striking Back" by Dr. Ken Casey-- usually around twenty dollars - amazon link:
or see if at the library
Go to google images: type in atypical face pain - & look at those pictures - and type in trigeminal neuralgia and see those
I don't know if you are working with reg. dr. or a neurologist yet -- but you will need a neurologist that has TN patients !!
A quick fix for many have been prescription lidocaine patches/cream for face or liodocaine mouthwash if inside hurts
Mostly the ATN type is the burning, boring pain that lasts and lasts -- TN1 is lightning strikes on your face like a tazer
Some have both --- some have both sides -- that is called bilateral
If your pain is still mild - you may be able to avoid the anti-epileptics above - there are many meds to choose from and many alternative treatments etc in the book---one of the milder helpers is Tramadol -- Major narcotics don't touch our pain because it is THE worst pain known to man.
http://www.livingwithtn.org/forum/topics/a-writeup-about-caring-for
invaluable link to help family members understand the best they can -
I always try to help newbies with the top few things I wish I would have known the first month of diagnosis-- for me that was Oct. 2010 -- I'm 98% pain free now - and it mostly due to the wonderful people and information on this site!
I also visited the Facial Pain Assoc. / TNA site ----
and above you will find a face pain tab -- whatever you don't find in the book you will find it there.
We are here almost 24/7 - from around the world...... we are only 12 in 100,000 souls who have this challenge
last tip of the day -- I started a word document - and kept all the TN stuff that applied to me, copied and pasted in there
read /learn /relax /post questions - repeat.... LOL -
Kimberly
It has only been since december that mine started. ( well I actually think I have had this for years and it would just go into remission after about a week or so, leading me to believe I just had a sinus infection) But this time it started in December and has not stopped. I take Tegretol 600mg. The side effects were terrible the first couple of weeks, but now I have no side effects. It controls my pain pretty good. I still need Ibuprofen daily, but not near as bad. I also found that lots of B12 helps with the fatigue. My trigger is on the inside of my jaw, so the wind and touching my face doesn't set it off like so many others. Chewing and talking sets mine off. So I am doomed, that is what I do the most of :) I hope you figure out what works best for you and wish you well.
Hi Kate,
http://www.livingwithtn.org/forum/topics/for-the-newly-diagnosed
Here’s a link that we started with lots of tips and info from our members here at LwTN.
The best advice I have is what has already been mentioned, read and learn everything you can about TN. Check out our TN 1 & TN2 facts on the main page. Make sure you keep an open mind while you read as not everything is true, everyone’s journey with TN us unique.
Finding the right med and dose should be the focus initially. That means having a plan with your doctor for when your pain increases, and know how to increase your med or how to contact your doctor to do so.
Many people manage their TN pain well and live “normal” lives.
I hope you find pain relief soon!
(( hugs )) Mimi
Kimberly,
Thanks for the info, will definitely look into the book.
My pain lasts for between 12-24 hours for each episode. On rare occasions longer. Its more of a long lasting intense pain. the mild pain happens either right before or after each episode. My worse night was last month where the pain was so intense I was up crying half the night. I have a high tolerance for pain, so for something to make me cry... makes it pretty bad.
I have found there are triggers like being stressed out, being out in the cold or laying on my left side and night, and now the right too...
I have a great Neurologist in my area, he diagnosed it right away, I had suspicions about what it was and he confirmed it. He prescribed me a cream for seizures that is suppose to numb the nerve and relieve the pain faster. Pain killers and muscle relaxers do not work and the best way that helped me sleep with the pain was using a heating pad at night. But it never made it go away, just helped me to relax enough to stop tensing up from the pain.
Thanks for your advice!
Kc Dancer Kc said:
Hi and welcome - sorry for your scary journey - that's why we come here!
The fastest way I got educated on TN (and you do need to get educated fast) -- We read "Striking Back" by Dr. Ken Casey-- usually around twenty dollars - amazon link:
http://www.amazon.com/Striking-Back-Trigeminal-Neuralgia-Handbook/d...
or see if at the library
Go to google images: type in atypical face pain - & look at those pictures - and type in trigeminal neuralgia and see those
I don't know if you are working with reg. dr. or a neurologist yet -- but you will need a neurologist that has TN patients !!
A quick fix for many have been prescription lidocaine patches/cream for face or liodocaine mouthwash if inside hurts
Mostly the ATN type is the burning, boring pain that lasts and lasts -- TN1 is lightning strikes on your face like a tazer
Some have both --- some have both sides -- that is called bilateral
If your pain is still mild - you may be able to avoid the anti-epileptics above - there are many meds to choose from and many alternative treatments etc in the book---one of the milder helpers is Tramadol -- Major narcotics don't touch our pain because it is THE worst pain known to man.
http://www.livingwithtn.org/forum/topics/a-writeup-about-caring-for
invaluable link to help family members understand the best they can -
I always try to help newbies with the top few things I wish I would have known the first month of diagnosis-- for me that was Oct. 2010 -- I'm 98% pain free now - and it mostly due to the wonderful people and information on this site!
I also visited the Facial Pain Assoc. / TNA site ----
and above you will find a face pain tab -- whatever you don't find in the book you will find it there.
We are here almost 24/7 - from around the world...... we are only 12 in 100,000 souls who have this challenge
last tip of the day -- I started a word document - and kept all the TN stuff that applied to me, copied and pasted in there
read /learn /relax /post questions - repeat.... LOL -
Kimberly
Cupcake,
Looks like we are both new, I will be getting my new meds for this today. My primary care physician keeps giving me narcotic pain killers which are addictive and don't help. So hopefully the cream my Neurologist prescribed helps. He said to only use it when the pain strikes. I like that better than taking nasty pain killers.
I haven't had an attack since February so I am thankful for that, but I still have the mild pain and numbness in my face daily. I wonder if the numbness is normal? I'll have to look into that. Thanks for sharing your story and info!
Cupcake said:
It has only been since december that mine started. ( well I actually think I have had this for years and it would just go into remission after about a week or so, leading me to believe I just had a sinus infection) But this time it started in December and has not stopped. I take Tegretol 600mg. The side effects were terrible the first couple of weeks, but now I have no side effects. It controls my pain pretty good. I still need Ibuprofen daily, but not near as bad. I also found that lots of B12 helps with the fatigue. My trigger is on the inside of my jaw, so the wind and touching my face doesn't set it off like so many others. Chewing and talking sets mine off. So I am doomed, that is what I do the most of :) I hope you figure out what works best for you and wish you well.
Thank you Mimi, I will take everyone's advice to heart and look into everything that was mentioned!
Mimi said:
Hi Kate,
http://www.livingwithtn.org/forum/topics/for-the-newly-diagnosed
Here's a link that we started with lots of tips and info from our members here at LwTN.
The best advice I have is what has already been mentioned, read and learn everything you can about TN. Check out our TN 1 & TN2 facts on the main page. Make sure you keep an open mind while you read as not everything is true, everyone's journey with TN us unique.
Finding the right med and dose should be the focus initially. That means having a plan with your doctor for when your pain increases, and know how to increase your med or how to contact your doctor to do so.
Many people manage their TN pain well and live "normal" lives.
I hope you find pain relief soon!
(( hugs )) Mimi
I was diagnosed on Aug. 28th, so I am fairly new too. Read, print off material, then explain and SHOW the printoffs to family. That way, hopefully they will "get it". Good luck to you!
Good idea Donna!
I did send everyone and email and link to this site. Hopefully they will get it. Thanks for your advice!