I was just recently diagnosed with TN and have been on Tegretol for almost a month now. The other day I woke up to pain on both sides of my face, which was new to me. Today I saw my neurologist and he reviewed the MRI results with me and there seemed to be no damage to the trigeminal nerve and he said having pain on both sides with TN isn't very common.
He wants to go the FIbromyalgia route with me if the now higher dosage of Tegretol doesn't work. Does anyone else experience pain on both sides and an MRI that didn't show anything? I'm so confused.
Btw, for those of you who were worried, I don't have MS :)
Hi, I am bilateral with mostly symptoms of type II both I have type I symptoms as well. My mri didn't show anything either. So yes, it is possible and there are many others here in our support group too, that are bilateral as well. You can type in the word on the search box and pull up past discussions. We just had one recently on this subject. :)
Hi Taylor…bilateral TN is less common but, many on this site do have it. There is a group on here u can look at for people with bilateral TN. As far as the MRI not showing anything…I’m not surprised…I think most of us had a normal mri…unless u had a very detailed thin sliced mri. Mine was read normal until the Neurosurgeon read it. He found and artery and a vein during my MVD…(it was not successful however…) I’m not trying to make u discouraged TN isn’t something people line up to have…but hopefully u will research it further. Not all neurologist are familiar with this disease unfortunately!!
Hello, I also have bi-lateral TN, my right side is the worst , the left side is more of an annoyance. There are more members on here than I orginally though with bi-lateral, but it is out there and very possible. If your doctor doesnt believe it can happen, you may want to shop around for a TN specialist that has seen this before.
When I first started having symptoms on my left side my GP said no he didn't think that was what I had. Well when I told my neurologist what was going on he called me back and said; I don't know what else it COULD be and prescribed the Trileptal, which is what I am still currently taking. So I think there is a lot of "stigma" that bilateral is so rare that docs refuse to believe a person has it.
Although none of us can diagnose you, that does not mean that a Dr can!!!!!!! It would appear on this group that bi-lateral is not as rare as thought there are over 100 bi members including myself. Many members tell us they have a clean MRI but do definitely have TN. Conversely, on post mortem many are found to have a vein on their TN nerve and have never reported a pain in their former life!! That is why this illness can baffle so many. It is hard to understand.
It may be that Tegretol is not the med of choice for you. if a higher dose does not give relief I should ask about trying another. I think there are about ten possibilities. Try not to give up hope, I haven't. There will be someone out there who can help you.
however…) I’m not trying to make u discouraged TN isn’t something people line up to have…but hopefully u will research it further. Not all neurologist are familiar with this disease unfortunately!!