Describing the indescribable: living with Trigeminal Neuralgia

For those living with Trigeminal Neuralgia, attempting to describe the type of unbearable agony to friends and family can be a real challenge. Here are some of the ways that I have found to give some vivid descriptions to help bridge that understanding gap, making the invisible pain visible.

Pinpointing the pain: more than just a headache

Trying to describe what your pain with Trigeminal Neuralgia is like to friends and family can be difficult. For me, it took some time to be able to express what I was experiencing as it was unlike anything I'd ever felt before. My first thought was some horrific type of migraine, but it wasn't actually my head that the pain seemed to be stemming from. It might take a few attacks to try to pinpoint the exact area the pain is coming from. The trigeminal nerve has 3 branches on each side of the face. Depending on what branch is affected will also determine how you can relate what best describes your pain. The trigeminal nerves are covered in a protective shield called the myelin sheath. It is similar to the picture of the electrical wires above where each are coated in a colored rubber covering to protect you from the live wires. With Trigeminal neuralgia the protective myelin sheath has eroded away and they are now exposed like live wires to the slightest touch. Very often neurosurgeon will find that the main culprit for painful attacks is a blood vessel pressing against that exposed live wire when certain movements of the face occur When the blood vessel rubs against the nerve it can feel as though you are being electrocuted or tazered for 1-3 minutes!  Trust me that feels like a VERY long time when it happening! 

The upper branch, (the ophthalmic nerve) typically runs closer to the eye area.  It can feel like a dagger pocking into your eye.  It can also feel as though electrical shocks are shooting into your eye as well as above or just below.  The middle branch, (the maxillary nerve) runs from the corner of your jaw across your upper cheek.  That can cause you to feel like your upper teeth are abscessed and need immediate removal or as if you are having a root canal that goes on forever.  It can also involve your nose and upper lip area.  The lower branch, (the mandibular nerve) runs from the corner of your jaw just behind your ear down your jaw to your chin.  Again, this can present as  a severe dental emergency along with an eardrum rupturing. 

Your trigeminal nerves are responsible for sensation in the face and motor functions such as biting and chewing.  Most people don't even know these are the names of your facial nerves. The only time you might think about them is when you are at the dentist and they start working before you are completely numb and he HITS the NERVE!  You kinda come out of the chair instinctively pushing away from the dental tool. When the lower two branches are misfiring signals, it very often feels similar to severe dental emergencies.  If you awaken during the night to abscess teeth pain, you typically are not going to be able to accomplish one task until you get an emergency visit to a dentist to address the abscess with numbing agents, antibiotics, and possibly a root canal!  So, now try to imagine if you are experiencing this dental nightmare day after day!   Then imagine that no dentist can see you and when they do no numbing agent or medication will touch the pain! It is as if you are stuck in that dentist chair  and he refuses to stop working or numbing you and you are powerless to get away!   THAT my friends is what my TN flare ups are like. 

My experience: a deep, unrelenting ache

For me, my lower nerve, in the jaw area, is where my TN started. I truly thought that I had several abscessed teeth and that if they would only pull them out, I would find relief. Mine is also very painful at the root entry, causing it to feel like maybe my inner ear was also part of the problem. It was far worse than any ear or toothache I have ever experienced. Helping loved ones understand that, no, this is not just a headache or a dental problem, I had to find more descriptive ways to describe what I was experiencing. 

Over time  my TN spread into my middle nerve affecting my upper jaw area making chewing and talking often very painful.  It did feel like oral surgery would be the answer.  However, it was never a tooth problem.  

Finding words for agony: relatable analogies

Here are some of the ways that I have used to describe my TN attacks that others can relate to or understand:

  • The trigeminal nerves are similar to electrical wires. With TN, "the rubber protective coating " has eroded away, and now my facial nerves are like live wires short-circuiting.
  • The electric shock: it feels like someone is touching a live electric taser or a hot poker directly to my cheek or jaw.
  • Dental pain: imagine every tooth on one side of your face simultaneously needing a root canal, even though your teeth are perfectly fine.
  • Ice pick: imagine waking up with an ice pick stuck into your jaw, and you cannot pull it out.
  • Hot branding iron being pressed into your face for days and days.
  • The Devil's Claw: a term a neurologist told me when I was describing the feeling of sharp fingernails dug down deep into my jaw.

Coping strategies and understanding

I have discovered that most people cannot relate to unbearable pain that you cannot find a doctor to help you remove the problem by either medication or surgery. Most people will also not bother to look up Trigeminal Neuralgia to learn for themselves that it truly is one of the most painful conditions known to man. Therefore, I have learned that these types of word pictures help paint a clearer picture of what we are going through. Most people can relate to a severe toothache at least but still cannot fathom that we would willingly let a dentist cut our teeth out in an instance if that were actually the problem. Going through "a flare up" is like having to go days and days with abscessed teeth and no doctor can see you for weeks or offer any pain relief medication.  Remember that you also did not understand what was happening to you when your facial nerves started misfiring nor what this strange named disease meant. So be patient with family and friends and do the best you can to describe what you are experiencing in a way they can relate to. 

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