I just began having what my neurologist thinks are TN symptoms on 9/13, so not long ago. This came shortly after the onset of what seems to be occipital neuralgia. I've been having intense, burning, shock-like pain through 2 of the branches (jaw and cheek), but no more than 3 times a day (each attack lasts about 15 min.). Air conditioning blowing on my face, touching certain places, using a hair dryer, etc. are triggers. My doctor said it sounds like trigeminal neuralgia and ordered an MRI with contrast. Here's the thing, though, the MRI came back clear with just a few "clinically insignificant" areas of of white matter. The dr called and prescribed tegretol and said she would go over things more at our next appointment. She said she didn't see any vein or artery pushing on the trigeminal nerve and kind of left it at that. Does that mean I'm crazy? I don't understand how I can be having this pain and tingling if there isn't anything wrong. I'm hoping someone might have some insight into this. Thanks in advance!
MRI can help to eliminate problems like AVM, Aneurism, or tumor as a source of face pain. High resolution MRI/MRA is also useful in determining where on the nerve a compression has occurred. But MRI by itself is not accepted as a diagnostic tool for TN. There are no definitive tests which confirm a diagnosis of TN. The patterns of your pain and/or presence of trigger zones will generally do that. Response to meds will also help.
Many patients who have TN do not have compressions on MRI imagery. During perhaps10% of all MVD's that are done on people who display no obvious compressions, a small vein or artery is found during initial exploration.
So you're not crazy. Your response to Tegretol as your dose is tapered up will be a more reliable measure of whether or not your pain is due to TN. Likewise, Occipital neuralgia affects the rear quadrant of the head, down into the neck above the shoulders. If you don't have pain in that region, then you don't have occipital neuralgia.
Thank you so much for your helpful reply. I had been wondering why she would prescribe tegretol if the MRI wasn't showing TN, but now that makes sense. I sure hope the medication helps.
Yes, my ON shoots from the base of my head up to the top and to the back of my ear only on the right side. It is actually much more frequent than the TN, at least right now. I've only been dealing with both for a month, so I'm still trying to figure out what I'm feeling and when.
It seems a little unusual to me that the ON and TN started about the same time.
It's unusual for both to present at the same time, but not unheard of. Have you been in an automobile accident in the past few months? Or had any other blunt force trauma to the head or neck?
Yes, I did actually hit my head quite hard on a granite counter top in March. It doesn't sound like a serious injury, but I ended up having a concussion and post-concussive disorder. The ON and TN symptoms started right after I felt like the post-concussive issues had gone away.
My neurologist thought my symptoms were beginning too long after the injury to be related. I continue to wonder since it is on that same side of my head.
If trauma was involved, it's going to be a toss-up. Discrete neuropathic injury to more than one nerve can be a bear to treat. Please read the featured TN Fact Sheet at the top of our home page, and tell me which kind of TN pain you seem to have.
After reading the fact sheet, I'm quite sure it is Type 1. I have even gone several days without having an attack, although I realize I am likely in the very beginning stage of this.
Type 1 suggests an easier course of treatment, Em. It also confirms that Tegretol is an appropriate medication of first choice. Please keep me informed over the next week or so on the status of your dose profile and your pain. I'll be away from home tomorrow through Monday.
You are lucky to get the diagnosis so quickly! Took me 2 surgeries & 12 doctors & thru this group found out its not so unusual! Good luck & the tegretol confirmed my TN1. Now scheduled for my 2nd MVD & I think the vein is back pressing on the artery & nerve again.
Latest MRI wasnt conclusive but the new neuro feels he can fix me & sure hope he can & for good.,