Life with Trigeminal Neuropathy

By Leslie –

I am in pain. Severe debilitating pain. I cannot describe it to you. It’s in both sides of my face. It’s like having a severe toothache in every tooth and in the bones of my face. Even my nose is hurting.

This all began back in 2014 when I had my bottom wisdom teeth extracted. The right side of the extracted tooth healed beautifully with no problems. The left side, however, started with a dry socket. Oh my gosh! The pain was the worst I’d ever felt! Also, my tongue was numb and on fire. It really felt like my tongue was burning even though it was numb.

I managed all of this without medication for two years. The dry socket healed finally but the numbness and burning never went away. In 2016, I had a molar on the bottom left side (aagh!) extracted and the you-know-what hit the fan. Not only was the extraction violent but it left me with severe, constant pain on the left side that requires medication. When I say violent, I mean I’m surprised the oral (hack) surgeon didn’t stand on my chest. He wrenched and wrenched and pushed so hard on my jaw he injured it and caused temporal mandibular joint disease. I also got an infection around the extraction that I still sometimes get out of the blue. So, the left side of my face is screwed up royally.

Then I had to have an extraction on the bottom right side and lo and behold my right side gets screwed up too. Numbness, burning, tingling, severe pain, feeling as if I have a vice grip squeezing my face. My whole face. Sometimes my eyes water, sometimes I feel hair on my face, my jaws feel like they are going to explode with the pain. I’m not whining, I’m merely trying to describe what it feels like to have trigeminal neuropathy.

Medication helps most of the time but I have flares where nothing helps and I’m in one of those flares right now. I can barely talk, let alone think. I don’t know why it’s so hard for people to have compassion when it’s nothing they’ve experienced. There’s nothing special about me, yet I can put myself in others’ shoes and feel their pain and have compassion for them.

It is nearly impossible to find information on the web about trigeminal neuropathy. Trigeminal neuralgia type II is as close as one can find information on and it comes pretty close. The description is as follows:

With TN2, facial pain is a constant dull or burning sensation and tends to affect a more widespread portion of the face than TN1. In some individuals, the pain will not go away even for short periods of time. The symptoms of TN2 tend to be more difficult to treat.

The pain associated with TN can be so severe that affected individuals avoid simple activities such as brushing one’s teeth and/or avoid social situations for fear of an impending attack. The disorder can cause profound psychological effects such as depression and anxiety.

National Organization for Rare Disease

I also have bouts of trigeminal neuralgia type I, better known as classical TN. It is described as follows:

The most significant symptom of trigeminal neuralgia is recurring episodes of intense, short-lived spasms of pain of the lower portion of the face and the jaw. The nose is not infrequently affected. Much less often, the eyes and forehead are affected. In most cases, pain is limited to one side of the face (unilateral). The pain has been compared to a series of “electrical shocks” followed by a steady dull ache. The pain often starts and stops rapidly. Intense pain usually lessens rapidly (usually within several seconds), but the following dull aching pain may persist for as much as one to two minutes. For many individuals, pain is completely gone in between episodes. However, for some individuals, even some individuals with TN1, some degree of pain may persist.

– National Organization for Rare Disease

The cause of my TN 1 and 2 is because of dental work done in both sides of my face. I did my own research about what I was feeling because these are very rare conditions. There are no cures, only treatments which include medication, brain surgery, or gamma knife. I am sticking with medication for now even though I’ve been out of commission for about three days due to heavily medicating myself. Something about brain surgery and burning my trigeminal nerve does not appeal to me! Of course there are no guarantees that either will relieve the pain and they may even make it worse! Worse?! I’ll continue to medicate, meditate and pray thank you very much.

I’m writing this article to educate people who have something like this or who know someone who does. Please be gentle with yourself. You’re in pain. Pain that makes eating, smiling, breathing, talking very hard. If you know someone with this, please be gentle with them. They’re not faking or doing it for whatever reason you may think. I would give anything to be free of this. It’s real. Nerve pain is excruciating. It comes and it won’t stop until the medication is at such a level that the person suffering is incapacitated from the meds. And guess what? They’re still in pain! God bless us all and I pray no other person or animal ever feels what I and others like me feel. Below is another description I found:

By nature of the geography of the pain (affecting the face, eyes, scalp, nose, mouth) it may interfere with just about every social function we take for granted and enjoy. The trigeminal nerve is the largest sensory nerve in the head and neck, protecting the essential organs that underpin our very existence (brain, eyes, nose, and mouth). It is no wonder that pain within the trigeminal system in the face is often overwhelming and inescapable for the affected individual.

According to a study published in J Neurology & Neuromedicine done on managing post-traumatic trigeminal neuropathic pain and surgery,

“of the injured trigeminal nerves, the incidence of developing post-traumatic trigeminal neuropathic pain has been reported to range from 0.45% to 70% of injuries involving the IAN and LN. Clinical presentation of post-traumatic trigeminal neuropathy is similar to other sensory nerves; however, due to the anatomical location the functional and psychological impact is greater than most other nerve injuries. Most studies purely report mechano-sensory presentation; however, a more holistic approach for assessing the patients with trigeminal nerve injury is recommended.

There are 3 features of post-traumatic trigeminal neuropathy worthy of assessment. They are pain discomfort, functional implications, and psychological abnormalities. Neuropathic pain is commonly experienced by 50-70% of patients as either spontaneous ongoing pain, which is often a burning characteristic, a spontaneous shooting, or electric shock-like sensation (neuralgia). Patients also experience stimulus induced pain due touch or cold often having difficulties with daily function, such as kissing, socializing, speech, eating and drinking. Consequently, patients were often anxious, tearful and had psychological repercussions and demonstrated personality trait disorder, anxiety, stress, post-traumatic stress disorder, anger, etc.”

The above is a great description of the toll this takes on a person’s life. Everything is affected because we use our mouth and face to be in the world. I’m not blind or deaf but I’m becoming mute in my search for being pain-free and I’m terrified of the pain. The throbbing, aching, burning numbness is enough to drive anyone insane but when it becomes magnified for whatever reason it is intolerable. All I want to do is hide and be still. No outside stimuli which may or may not make it worse. I just want help for myself and for everyone who is suffering and losing days of our lives we will never get back. That is the real crime.

Time lost. Time in pain. Time to be with our families, time to be in nature, prayer, helping someone, making a difference. Time lost that we can’t do these things and others because of the pain. Very few people even understand. We have good days and bad days. Why some days are better than others, I don’t know. Why some days I can only hide inside myself and not do a thing, I don’t know. Why some days I can handle the pain or push it aside for a time I don’t understand. I’m so thankful for those days! Maybe God blesses us with those days to make the darker days not so dark.

I don’t begin to claim to know anything except what I experience in myself, but I hope I can shed some light on this disease. Thank you for reading this and I pray at least one person is helped. God bless you and your family!

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3 thoughts on “Life with Trigeminal Neuropathy

  1. Jonathan Sprague says:

    I am suffering from Trigeminal Neuropathy Type 2 (TN 2). My TN 2 arose from a botched dental procedure involving the extraction of a molar on the lower left side of my jaw. The dental surgeon admitted post operatively that when extracting my molar he damaged my trigeminal nerve. I knew something was seriously wrong when I immediately experienced intense pain coming out from under anesthesia. That was 5 years ago. Today, I’m under the care of a pain management specialist and on serious pain meds. My failed non-narcotic alternatives include Accupuncture, Botox, Mindfulness, Electrical Stimulation Implants.

    I’m an otherwise extremely healthy man. This botched dental surgery fucked me up. My prognosis: The severe pain will burn out when I’m into my eighties. So the rest of my life I’ll be on mind and body deadening meds because my very reputable dental surgeon botched a standard dental procedure. Be careful, people.


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