Has anyone experience TN on both sides? Had my MVD on the right side in 2011 after 3 years of 24/7 pain. In the last 2-3 months I have started to experience the same pain on my left side. My TN is nerve #1. The eye.
Yes, I have bilateral TN since 2002.
Classic TN 1 on my right, and I just had MVD in April on my left which was predominantly type 2, became resistant to meds and eventually also TN 1 shocks.
Sorry to hear your pain has returned. Any pain on your MVD side?
Mimi
Oh no.
Hi Birdie,
I actually put up a post just a couple of days ago because I have the pain on both sides. I also had an immediate response from Mimi. The neurologist I saw last week said he doesn't believe it is TN because "it's extremely rare" to have it on both sides. I'm seeing another neurologist in two weeks and plan to print out Mimi's response and take it with me to show him, also to show my GP.
I'll be interested to see if we get any other responses from people suffering it on both sides.
Wishing you some pain-free days,
Kaye
Yes, I have atypical bilateral TN. I have bothe the shocks and the chronic burning boring on both sides. I had experienced the burning pain intermittently on my right side for many years before the shocks started in January 2012. I had attributed the burning to another condition I have, but the shocks brought me to a neurologist who diagnosed TN. The pains started up on the left in October 2012. At my surgical consult in November, the doctor confirmed I was bilateral. There was a vein compression on the right, and an artery compressing the nerve on the left. I had MVD on the right in January.i am still on my maximum dose of Gabapentin while I wait to have the surgery on the left.
Bilateral is not that common, but it certainly does happen! I was stunned when it started up on the left side. I hope your new neurologist is well versed in TN.
Best of luck to you
Christine
Thanks for the replies. I did tell my local Neuro about the left side symptoms. She said it probably isn’t TN because it is rare. Kind of made me mad because I know what it feels like. Also, it seems that if rare things could happen, they happen to me! LOL
I am contemplating calling my neurosurgeon and talking to him. The only thing with that is he is 6 hours from me.
Yes, i am bilateral as well. Always have been, its one of the things that made it hard to get a diagnosis. it is evidently berry taste because my doctors were highly skeptical.
My pain started on the left side, then slowly made it's way to the right. So now it's on both.
How did y’all get your doctor to believe you?
My doctor just kind of goes uh huh and nods. He's kind of a know it all and just writes scripts. I havent seen a doctor yet who really asked too many questions or seemed too interested in what I had to say, I dont think they really know too much about TN to be honest.
Terri-I totally agree. However, there is one exception. His name is Dr. Robert Mericle and he is the BOMB! He took so much time with me and asked me a TON of questions. But then again he is a normal guy (neurosurgeon) and treats his patients like we really are his family. I love him. It took me 2.5 years to find him.
Sadly he is a long way from where I live. So for now I see a local neurologist. They don’t seem to be well versed in TN no regular one is.
Birdie,
I learned a long time ago to trust myself. It’s hard because doubt creeps in every once in awhile, but the truth is only “I” know how I feel and where and when I feel it. Doctors are definitely skeptical when it comes to bilateral TN because all the literature says its rare and usually only occurs with persons with MS. That being said, at the time of my diagnosis with TN, I was 29 my doctor knew what it was right away but the neuro he sent me too doubted it was TN because I was 29 (and the literature says it usually affects persons over 50) I had classic electric shocks that responded to tegretol within 48 hrs, and yet because of my age she dismissed me, so…I dismissed her.
My current neurologist is supportive and even though he didn’t think a neurosurgeon would offer MVD to me because A) it was type 2 and B) because no compressions were visible on MRI, he still set up the referral for me.
Even my neurosurgeon hesitated to call what I have TN, because he had never seen a case like mine…very next day he found 3 blood vessels compressing my nerve.
All this to say, who cares what they think or say, as long as they are treating you for your pain and are supportive in helping you find treatments that work to offer you quality of life, THAT’S what MATTERS!
Do not accept less than that. You don’t have to prove anything, you just need to speak your truth and get treatment.
Huge (( hugs )), Mimi
Thanks Mimi! I have had to learn over the years I have to be my own advocate when it comes to the pain in my head. I just need a reminder from time to time❤
I have TN and TN2 on my right side. Lately, I've been noticing some of the same sensations on my left side. Meds are keeping the shocks u nder control so I have had none of that but the sharp pains and the teeth coming and going and some of the burning spots on my forehead. How far in advance or what did those of you with bilateral notice first?
I also have bilateral TN. I had jaw pain on the left side for over 6 years on and off. Many many dental procedures, root canals, extraction on and on. A dental nightmare. I FINALLY went to my doctor during a severe attack and also told her I was having some kind of migraine on my left side as well and these shocks while I was flying. Nothing touched the pain. She smartly diagnosed me in January. I responded immediately to oxcarbazapine. The right side soon followed. I was devastated. I'm very lucky to have a great doctor and neurologist. I have not felt like he does not believe it's TN at all. I feel so bad for others stories having so many doctors question their pain. I can't imagine having that on top of the excruciating pain. I'm still working on getting the pain under control. I thought we had it a few weeks ago. I had 2 weeks without significant pain on my right side and 1 week with little pain on my left. I started chewing more crunchy food (a trigger for me) and cut back a little on a med so get out of the fog a little. Big mistake! I'm suffering now. Nobody would know by looking at me that's why I'm so glad I found this site...people who understand. Warm healing wishes to you Birdie.