Neuralgia discussions

Robin from WEGO Health's Dystonia group recently made the statement that she also has TN- Trigrminal Neuralgia, so I thought I'd open up a discussion here since cranial Neuralgias are often misdiagnosed as Migraine, and can sometimes trigger Migraine.

It has been suggested that the activation of the Trigeminal Nerve aka Fifth Cranial Nerve, causes vascular dilation in the dura (brain covering) of Migraineurs, and in the migraine process itself. (LINK to Migraine: a Neuroinflammatory disease?)

I am hoping Robin will visit us here and tell us about her experience with TN.

My own experience with neuralgia (think: firing of the nerve without stimulation) of some of the cranial nerves is somewhat similar to Robin's, but is due to irritation that I'm hoping to fix VERY soon.

My connection is LPR- Laryngo Pharyngeal Reflux.

What is LPR? Think GERD but really, really high.

It's kind of a disturbing thought, but essentially, I am refluxing day and night into my esophagus. The acid and materials flow into my throat and down into my larnyx and pharnyx, into my eustachian tube and my sinuses. The process is painless. The damage is not.

Because it is acidic, it has eroded all the tissues with which it has come into contact, causing pain that can range from merely bothersome to excruciating. The nerves involved are on both sides and go as high as my upper jaw, or when sinuses are involved, the entire face. The feeling can vary from dull to throbbing or at its worst, like being struck by lightning.

The first time I experienced neuralgia in my throat it took me to the ground. I thought something inside me literally exploded and I couldn't eat or drink without excruciating pain for 2 months. The cause at that time 9 yrs ago was due to radiation I'd had on my thyroid. (Not a weight loss plan I recommend)

Beyond neuralgia, LPR itself has rendered me constantly hoarse to the point even my husband cannot recognize my voice. Everything it touches feels burned and swells.

Some people find that when they fix their LPR their migraines go away as well. If I can ever get mine fixed, I'll be sure to let everybody know. :)

Neuralgia of the cranial nerves can result from many things including irritation (like LPR), trauma (an errant dentist's needle or a car accident) and even something as tiny as a cold sore or chicken pox virus. It is widely considered the worst pain known to man. Cluster Headaches are related to the Trigeminal Nerve as well, and also share the dubious distinction of being called "the suicide disease".

Some people find relief with surgery in which the nerve is "decompressed". During surgery the nerve is isolated and separated from the surrounding blood vessels and padded. The results are usually pretty good, but like everything, not 100%.

My mom has a friend who suffered migraines with aura for many years to the point of incapacitation. She finally got a diagnosis of TN and surgery and is now PAIN FREE!

At that, I will hope that Robin joins us soon and tells us about her experience.