We are patients living with Trigeminal Neuralgia, here for your support.

Bilateral TN

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Rarely,TN can affect both sides, although simultaneous bilateral trigeminal neuralgia is uncommon. This is a discussion area for those of us with TN on both sides of the face.

Members: 54
Latest Activity: on Wednesday

Discussion Forum

Treatment Option for BiLateral TN 6 Replies

I have had TN on my left side for approx 5 years. In that time I have had some minor activity on my right side (compared to the left) ~ Mostly on the top branch (forehead). I am curious - If I were…Continue

Started by Elaine Iles. Last reply by TommyR Dec 15, 2011.

bi-lateral tn. 17 Replies

When I get tn i get it on both sides. not at the same time. Not one side more than the other. I get smacks in my cheek on different sides, pains in my head, teeth ache on both sides. In four years my…Continue

Started by Elizabeth. Last reply by Elizabeth Feb 1, 2011.

Newly diagnosed bilateral 2 Replies

I have had TN on my right side since Dec. 2007. In the last 3 weeks I have not only been having symptoms on my left side, but crippling,debilitating attacks. Feeling like a burning skillet has been…Continue

Started by Christy Lightfoot. Last reply by Christy Lightfoot Aug 22, 2010.

Trigeminal Pain

The most horrible pain and the hardest to get control of, even through surgery. Hang in there everyone there is hope.

Tags: LaDonna

Started by LaDonna J. Young Mar 17, 2010.

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Comment by Jackie F on Wednesday: i have bilat. TMJ and TN

Comment by steve pardoe on March 19, 2011 at 7:35am: When I had my MRI scan the neurosurgeon said," ah YES I see the offending nerve and blood vessels,,,very classic, we can definitely operate on that. Wait a minute,,,this is the left side and you have pain on your right!!! Now i see you have the problem on both sides!!!!! How very rare."

However I do not have a single twinge left side. I may be storing up problems for the future. I WONT BE LOSING SLEEP OVER IT THOUGH. Mind you I never lost sleep on the right side as the pain never kicked in while I slept.

Comment by steve pardoe on February 7, 2011 at 5:05pm: MY MRI HAS SHOWN A LOOP ON THE LEFT SIDE AND RIGHT SIDE BUT I ONLY GET RIGHT SIDE PAIN,,,IS THIS LEFT SIDE DISCOVERY A TICKING TIME-BOMB?

Comment by Stef on January 31, 2011 at 9:41pm: Hello, all! I began with unilateral ATN in 2004 and somewhere along the line, it became bilateral. Unmedicated by opiate and anti-convulsant therapy (and there is still lots of breakthrough ATN characteristic pain), the pain would be constant with burning in my cheeks, lips and gums, sides of back of tongue and all over the upper roof of my mouth, throbbing in teeth, especially the lowers, aching in jaw and inner ears, pressure like a vice grip on in both temples and jaws, and occasionally a shocking type of twinge which runs from my inner ears into my face which I can feel and hear.

I have thus far, been denied surgical options and under-medicated in pain management. I am not addicted to pills. I am dependent upon them. I AM addicted to being pain free.

Enough about me, a lot of bilateral patients are also Atypical Neuralgia patients, and if you are, I would like to also invite you to join our group "Atypical Trigeminal Neuralgia". It is fairly new, but thus far, it's members, like here in Bilateral group, have yielded very important info, which has helped put me on the path of knowing exactly which medication I am seeking to get me back on the road to living, rather than existing.

So, if you are Bilateral and also Atypical, join our group as well, and as Shirley Warren put it, "Let's talk about ATN"!

By the way, thank you Kerry, a much deserved thanks for creating this very relevant group. I look forward to more discussion here.

Comment by Jackie M on December 28, 2010 at 8:05am: I had classic TN1 on the left side, diagnosed in 2001. After 2 MVD's and the Gamma Knife, I developed TN on the right side in October of 2009.

A panel of experts at the Mayo Clinic at the Trigeminal Neuralgia National Conference advised me to get screened for MS because 98% of people with bilateral TN also have MS and my brother has MS.

I am in that process. My Doctor is reviewing an MRI from the Gamma Knife, taken in March 2009. If the film doesn't tell him what we're looking for, I need a new MRI.

I advocate for MS research anyway to help my brother and do a lot of fundraising for that group. Last year, our "Team Charlie's Angels" was 27 members strong for the National MS Walk and we raised over $1,300. This year our goal will be set higher and our team will likely be larger.

"Be not simply good; be good for something". ~ Henry David Thoreau

Thanks for letting me join your group.,

Jackie

Comment by Lily's Mommy on December 12, 2010 at 12:24pm: Lily had her 1st MVD in March and her 2nd MVD done in July for Bilateral TN. She has had it since about 18 months old and diagnosed a year ago at Christmas time. Nobody knew since she is the youngest diagnosed and treated to date with MVD's. This is the 1st winter that we haven't had to shelter her from the weather. She actually gets to play in the snow, like a kid should, TN free! It has been a whirlwind her entire life. Now she gets to be a kid. There is no better Christmas present we could have received. I gave birth to her, but Dr Ben Carson gave her a life. We are ever so grateful to him and his staff. Wishing you all a blessed and Merry Christmas and a Happy New Year!!!!

Comment by Brogan Woll on November 8, 2010 at 12:15pm: I am overwhelmed by everyone on this site. I have been living with Bilat TN for 10 years and would not wish it on my worst enemy. Sometimes it is hard to wake up knowing that I will be in pain. It is so hard to explain it to my friends as I don't even understand it myself.

Comment by LaDonna J. Young on October 21, 2010 at 2:15pm: I had the MVD surgery in April. Haven't written about it since. Was a success for the pain I was having in my eye from a previous surgery. Wasn't without complication, but that seems to be the norm for me. Spent 2 months in the hospital. Most of the summer getting my strength back. About 3 wks now I'm experiencing major burning on my left side along with tightness in the face muscles 24/7. HELP, does my TN nerve have a mind of it's own!!!! Anyone experience this?? Going to the Surgeon Mon.. I'm trying to be positive!

Comment by Rob Goettman on October 18, 2010 at 2:49pm: I wanted to say to everyone and hope your day is not a bad one. I have had TN since just after the 1st of the year. I have never met anyone in person who had TN and feel that my family and friends have no idea how bad I was suffering with this problem. About 2 months ago I went through a series of injections in my temple area and increased my meds quite a bit. I am now only having light attacts and am doing much better. I just wanted to tell everyone that because there is hope that you can get some relief. Please don't give up like I almost did. Love you all and good luck with the TN. I feel blessed every story I read in here and hope the best for everyone including myself. Take care Rob G.

Comment by Victoria on October 6, 2010 at 12:02am: Its the beginning of October and the days are starting to get windy and colder...I've been 6 months pain free. Spring and Summer were great but now... as soon as I go out on a colder windy day I feel the cheekbones starting to ache and the forehead, and the teeth start aching and a headache starts and all the other tingles start to wake up...but if the next day is milder ...everything calms down again. I know now that it is only a matter of time before the major seasonal changes will get me again ...on both sides simultaneously...I just don't know if it will be as bad as last year...one can only hope...then again, why should it be any different , it is what it is. Damn that cold wind!