I believe I have some form of atypical trigeminal neuralgia, but only of the V1 opthalmic division.
There is one small, circular spot of pain on the top right side of my head that is dormant when I first wake up, but as I start doing anything, it comes to life and starts hurting.
It seems to “flare” up and get aggravated by mental effort, and especially anything particularly stressful or concentration intensive.
I would describe the pain as a boring, sometimes crushing type pain.
Most of the right side of my head/face feels different than the left side. In general I would say that at baseline it just feels more sensitive than the left. I am just more aware of the presence of the right side of my face.
I was wondering if anyone could tell by my description if they believe it to be atypical TN, or perhaps something else.
I do have migraine-type problems as well, not sure if they are related to the suspected nerve pain or not. Thank you.
You do have many of the hallmarks of an atypical TN type pain including:
–dormant at night and then kicks up after waking up and moving around.
–pain that is difficult to describe, but boring or crushing seems familiar
–pain kicks up worse under stress
–one side feels “different”
But I am not a doctor, so you probably should see a neurologist to get an idea of what this is, and if it could be something else going on. Migraines do seem to be often associated with this type of pain. Do you have any ideas of what gives you a migraine? If you keep track, you may find that certain foods or activities can bring on a migraine, then you can avoid them.
Ok. I totally have this same thing! Along with a whole host of other problems. You said that it doesn’t hurt in the morning but then builds through the day. My TN is always like that and it is a common pattern. Also, many Tners also suffer from migraines.
I have TN2 or ATN in all 3 branches but that one spot is a very common flare up for me. You said that the one side of your face seems to feel different then the other. Can you say which parts tend to “hurt” more. And you suffer from Migraines? Do you get it sort of behind the eye on one side?
The thing with ATN is that many of our symptoms sort of overlap several nerves areas or share very simular symptoms to other neurological problems. It is never cut and dry and each of us is very different. Every DR will say something different. It is so important to find a specialist. Groups help a lot too. Honestly, I have learnt more through talking with other TNers then anything else.
Have you tried any meds yet? or have anything that helps?
I know this post is old but thought I would add to it. I too have a place on the top of my head,this is where the worst electric shocks are for me. Also builds throughout the day, unbearable after 4. Diagnosis is GN with features of TN and GON. Resolved with medication for now. I also have ON which I treat with nerve blocks.
I had the same issue and that is how my pain started on my cheek near my nose. I believe I have ATN/TN2 as well. I have no pain when waking up, and when it started no pain throughout the day but then I would try to write an exam on my computer and the pain would start when the mental effort began. I would definitely suggest seeing a neurologist but one that has expertise in facial pain that can be found on the FPA website for proper diagnosis.
Thank you to all who have shared in this thread. I haven’t really found any internet articles or PubMed/NCBI published reports on this type of pain/condition, so I was hoping that the information we all share here will perhaps help others who are experiencing similar symptoms.
I was convinced for a while that my localized pain was a “nummular headache,” also known as coin-shaped headache. Actually, it is theorized that nummular headache is caused by irritation of a terminal branch of the trigeminal nerve, which basically sounds like an atypical form of trigeminal neuralgia anyway.
I’m on my 3rd round of Botox for chronic migraine, but no meds. I still have certain spots of my head that hurt every day, as well as certain parts of my face. I will post the rest of my update later.