Hi I'm newly diagnosed by my PCP with TN and it initially started on my right side. I was tested for Lyme and Shingles and both were negative, but I have had some dental work within the past couple of years including a root canal and other work so we suspect this was the trigger of my initial flare.
I have not yet seen a neurologist or had an MRI, but my symptoms are pretty classic and I respond well to Tegretol with just some tolerable break through pain so the thought is that I do have TN.
Recently I've been feeling some (tolerable) pain on my left side. At first I thought I was imagining it, but the episodes have started to become more and more frequent and it feels very much like the right side. The pain on left and right sides don't ever happen at the same time.
I have now requested a neuro referral and an MRI. I have done some investigating online regarding bilateral TN and many times it's referred to in conjunction with MS or tumors. This has me a bit shaken, as TN is a lot to take on by itself.
I would like to know if any of you have bilateral TN and if you have another condition such as MS, tumor or is there another reason.
Thank you !
Hi,
There are lots and lots of us with bilateral TN that DO NOT have tumours or MS. It is far more common then DRs believe. You absolutely do need to see a neurologist and have an MRI with contrast asap. The MRI is used to rule out other causes such as the ones you mentioned. Very rarely will a compression show and it is very common for the MRI to be clear...which is good and bad right. ATN is difficult to deal with. It is hard to get proper diagnosis and treatment. There are a lot of DRs that don't want to touch us and I have been told time and again to stay away from all invasive procedures and treat only with meds. That is a topic of hot debate around here!
It is also very common for it to start after dental work. Many ATNers go so far as to have healthy teeth pulled out trying to get rid of pain. Be careful here though--because nerve injury can also result from dental work, especially root canals and implants. This is very important when it comes to how your pain is treated. Procedures for trigeminal neuralgia do not work for nerve injury.
Stress and anxiety are killer with TN so you really need to take care of yourself and not jump to conclusions. I know that is easier said then done. But keep asking questions and keep learning. You will see that all of the crazy symptoms you have are normal amongst us.
If the Tegretol is helping then maybe an increase will cover your break through pain?? One problem with ATN is that it can worsen and become med resistant. I have bilateral ATN in all three branches for over two years now. I have had to consistently increase the dosage of my medication to stay on top of things. But you are responding well to Tegretol then that is confirmation of TN and also positive for your pain.
Thank-you for your response and your very sound advice. It was exactly what I needed :)
Thanks OSUBUCKS… I’m not that young, (turned 49 yesterday) so I’m hoping it’s not MS… Sites like this are so helpful!
What justjane37 said!
I am bilateral, and mine is viral (herpes simplex - cold sores). I have never met a neuro that thought I was crazy for mentioning bilateral - although they don't seem to be big fans of ATN. The MS thing is mentioned in my sister's neurology book as "MS should be excluded", but that is all.
Generally, we just have to keep educating doctors about the uniqueness of each individual TN diagnosis.