I have had ATN left side of my face (upper cheek, around eye primarily) for several years. Within the past year, pain in the left side subsides and immediately the pain seems to jump to the right side in the exact same area, like a mirror image. The pain is not as severe as the left side and it only lasts a few minutes, then it seems to 'jump' back to the left side again. At first, I experienced this very infrequently, but it has gradually started to occur more often, like a couple of times a week.
From what I've read about bilateral ATN, the pain pattern is different and does not mirror the other side of the face. For those with bilateral, what is your pain pattern like? Red, do you know if this is normal for bilateral?
Bilateral pain doesn't have any particular characteristic pattern, Mary. In some patients, it can occur as typical stabbing electric shocks on one side, and atypical achy burning pain on the other. In others, it can present as primarily one or the other pattern on both sides, usually but not always at different times. In a few, perhaps including you, it can occur on both sides at the same time, with very similar patterns.
It has only been in the last ten years or so that the term "atypical face pain" has come into disrepute because some doctors used it as a camouflage term for "psychogenic" pain that was presumed to be emotional in origin. Whatever the label we put on it, I'd estimate that probably upwards of one patient in five will have pain on both sides of the face -- most often of different character on the two sides, and usually not at the same time. But just about any combination is possible.
I welcome and invite input from others who have gone through bilateral pain themselves.
Mary, Red, I too suffer the same pain and with the same patten.
Constant 24/7 burning pain I have on both-sides, but never at the same time.
The pain can start on the left-side, then will drain and go away. The pain can then start on the right-side as a mirror image.
Its like two water jugs, the water is the pain. One jug is full of water, and one jug is empty. Pour the water from the full jug into the empty jug, this represents the pain swapping sides.
When I have the constant 24/7 pain on one-side, I can also experience electric shocks on the other-side at the same time.
The last Maxiofacial specialist I saw shook his head and said this is very rare, he thinks I am mad. I told him if I could transfer all this ATN pain over to him, I would in a flash. I so wanted him to experience this pain, then lets see what he thinks.
All-day today I have had the burning pain on my left-side, at 7:15pm this evening the pain transferred itself over to the right-side, that was just before I had some electric shocks. My right eye kept wanting to close, my eye twitches with the pain, which ever side the pain is at its worst, my eye on that side hurts and wants to close.
I have had bilateral TN pain since 2012. In December I had a spinal stimulator implanted in my skull. It is a miracle. I am down to 1/4 of my nuerontin and still some tegretol.
My stim is on all day long, and my atypical pain is gone, and I only have had 4 breakthrough lightening bolt pains since then.
I highly recommend this, as I am now back to work after being housebound since I got sick.
I have bilateral ATN as well. It jumps back and forth for me too. I have attacks that last one second and some last weeks and months. I have a huge variation in the type of pain I feel and I have areas that are the same and some that are different. It is in all three branches on my left and only the bottom two on the right.
I experience the 24/7 pain on all 3 branches on both-sides, but never at the same time. This is when the Maxiofacial specialist told me this is very rare, there was nothing he could do, except treat me with medication/drugs.
He said if I just had the more common type 1 Trigeminal Neuralgia (electric shocks), he could perform the operation. But!, as I have ATN, there was nothing he could do except treat with medication.
Why is there no cure for ATN, why don't doctors know more about this awful disease?
We are a rare breed and most Drs don't know what to do with us. As far as every test I have had done is concerned I am a healthy person. But TN runs in my family--both type 1 and type 2 so there has to be something more at play here. Neurological problems in general run in my family. MS, migraines, strokes, costocondritis, strokes, neck issues.
Stephanie, that's great your neurostimulator works so well for you! Where exactly are the electrodes? I had one with electrodes along the nerve under my eye and along the cheek. Turns out what everyone thought to be pure titanium electrodes actually had a metal alloy within them, which I was allergic to and only thing we could do was have the system removed. I'd love to try one again sometime if they ever can get rid of the metal alloy. I have a feeling it's necessary for conduction. Oh well, I'm doing good on Norco. Funny (well, not haha funny) thing is that when the Norco calms the left side pain, that's when I get the right side pain. Must be from long time use for a specific pain because I had an absessed tooth that hurt just the same when I took a Norco. Worked for the TN but not for the tooth. Yes, rare breed indeed!
OSUBUCKS1, I have just gone through that with the neurosurgeon & neurologist at one of the big hospitals in COLS not knowing what to do w/ me (bilateral-“That’s not TN”)). I have a referral in to U of Cincy in process (it all takes so long). Currently trying Pain Shield portable diathermy-only day 5, but mild victory observed. Last nt I ate green beans w/ no lightning when I chewed:) Go Bucks!