I am constantly in pain.

What Is Trigeminal Neuralgia

Trigeminal Neuralgia, aka The Suicide Disease, one of the most painful illnesses. Researching Trigeminal Neuralgia (TN) when first diagnosed proved to be difficult. Imagine you have just been diagnosed, you feel horrific pain in your face, you don’t get any feeling of comfort from the doctor delivering the news, you are in shock to learn that you have a rare illness with few treatment options. You are numb and trying to process and understand. You search online for more information and hope, receiving none. You are lost and everything you read makes you feel worse. You see you’ve been diagnosed with a chronic illness that bears the nickname of “The Suicide Disease.” Really? Why is that one of the first things I see written on my screen?

How to Pronounce Trigeminal Neuralgia

First, it is important to know how to pronounce the name given to this debilitating pain. Don’t worry if you struggle, it took me a few months to be able to say it correctly (partially due to the name, a numb tongue, and pain that makes it hard to talk).

First, let’s pronounce each word individually:

Trigeminal: trai·jeh·muh·nuhl 

Neuralgia: nr·al·juh

Put together:

trai·jeh·muh·nuhl nr·al·juh

Trigeminal Neuralgia Definitions

Describing Trigeminal Neuralgia is difficult. Medical organizations, doctors, and patients may describe it differently. In my own journey, I found it took years to understand what the problem in my face actually was, and I’m still learning. Just because one describes it one way and another a different way, may not necessarily make any description right or wrong (in my opinion, more research is needed).

Trigeminal Neuralgia used to be called/is sometimes still called ‘tic douloureux’ or ‘tic convulsif’. In French, the term ‘tic’ describes “muscle twitch” or “spasm”. The term ‘douloureux’ means “painful”.

A few of the top medical systems in the United States describe Trigeminal Neuralgia in the following ways:

• Mayo Clinic - “Trigeminal neuralgia is a condition that causes intense pain similar to an electric shock on one side of the face. It affects the trigeminal nerve, which carries signals from the face to the brain. Even light touch from brushing your teeth or putting on makeup may trigger a jolt of pain. Trigeminal neuralgia can be long-lasting. It's known as a chronic pain condition.”

• Cleveland Clinic - “Trigeminal neuralgia is a chronic pain disorder that causes intense pain attacks in your face. It happens when your trigeminal nerve is damaged or irritated. Several treatment options can help relieve pain, ranging from medications to surgical procedures.”

• Johns Hopkins - “Trigeminal neuralgia is a condition characterized by pain coming from the trigeminal nerve, which starts near the top of the ear and splits in three, toward the eye, cheek and jaw. We have two trigeminal nerves: one for each side of our face, but trigeminal neuralgia pain most commonly affects only one side. The pain of trigeminal neuralgia is unlike facial pain caused by other problems. It is often described as stabbing, lancinating or electrical in sensation and so severe that the affected person cannot eat or drink. The pain travels through the face in a matter of seconds, but as the condition progresses, the pain can last minutes and even longer.”

• National Institute of Neurological Disorders and Stroke - “Trigeminal neuralgia (TN), is a type of chronic pain disorder that involves sudden attacks of severe facial pain. It affects the trigeminal nerve, or the fifth cranial nerve, which provides feeling and nerve signaling to parts of the head and face. Pain attacks typically last only a few seconds (but can last up to two minutes) and may occur over and over again several times a day.”

The more you research, the more you receive varying information and become overwhelmed. Sometimes what you are reading doesn’t match your symptoms. Sometimes what you are reading doesn’t match what your doctor described. Also, sometimes what you are reading doesn’t match what other Trigeminal Neuralgia patients describe. 

I learned during my initial research (and still holds true today) not to compare myself with how one place describes TN or to others with the same diagnosis. What I feel is valid. I do not need to see my exact symptoms listed to be validated. What is important is to have a care team of doctors that actively want to help you and understand you.

Trigeminal Nerves and How They Work

The trigeminal nerve is the fifth cranial nerve and is responsible for sensory and motor function in the face and jaw. The trigeminal nerve provides sensation to the face, mouth, parts of the head, and also controls the muscles used for chewing.

There are three main branches:

1. Ophthalmic nerve (V1) (eye) - The ophthalmic nerve provides sensory information to your face and skull between your eyelids of each eye. The nerve also provides sensation to parts of your nasal cavity. The ophthalmic nerve helps to dilate your pupils and provides sensation to various parts of your eye.

2. Maxillary nerve (V2) (upper jaw) - The maxillary nerve provides sensory information to your nasal cavity, sinuses, teeth in the upper jaw, palate, and the middle portion of your face and skull that are below your eyes and above your mouth.

3. Mandibular nerve (V3) (lower jaw) - The mandibular nerve is the largest of the trigeminal nerves. The nerve provides sensory information to the inner lining of your cheeks, mouth, the teeth in your lower jaw, tongue, and skin below your mouth. The mandibular nerve also provides movement to the muscles needed for chewing and swallowing.

Diagnosing Trigeminal Neuralgia

Trigeminal Neuralgia is difficult to diagnose as there are no specific tests and symptoms are similar to other facial pain disorders. Typically, TN is diagnosed by your symptoms. MRI’s are typically ordered by your doctor for a few reasons; to rule out multiple sclerosis, brain tumors, and to look for a blood vessel that may be pushing on the nerve. In order to see the detail needed in an MRI, a high-resolution, thin-slice or three-dimensional MRI is needed. This specific type of MRI may be called one of the following names (from Facial Pain Association):

• SSFP: Steady-State Free Precession

• GE FIESTA: Fast Imaging Employing Steady-state Acquisition

• Siemens FISP: Fast Imaging with Steady-state Precession

• Philips FFE: Fast Field Echo, b-FEE: Balanced Fast Field Echo

It is possible that the results of your MRI may or may not show any issues. When a compression is not found, it does not mean that you do not have Trigeminal Neuralgia, it simply means you have a different type of TN where a compression is not found. 

I have had a handful of MRI’s in my Trigeminal Neuralgia journey. In my experience, expect the MRI to last 1.5+ hours. You are advised to lay very still during the scans, movement at any point during the scans may mean the MRI sequences and scans will have to start over, prolonging your time in the MRI machine, a tight tube about the size of your body. If you are claustrophobic or worried about your MRI, talk to your doctor about what options or medications may be available to help put you at ease during your scans.

Types of Trigeminal Neuralgia

At a high level, Trigeminal Neuralgia is typically categorized into two main types:

1. Type 1 (TN1) (Classical) - Type 1 is the most common form of TN and is typically described as sharp, shooting, stabbing pain, or shock-like pain. The pain may last a few seconds to several minutes. With TN1, an artery or vein is compressing the trigeminal nerve. 

2. Type 2 (TN2) (Atypical) - Type 2 brings more constant, persistent, intense pain. Some TN2 patients experience varying levels of aching and burning sensations. Sharp pain may also be present, bringing some TN1 symptoms to TN2. A specific trigger point for pain may not be present and the pain may grow worse over time.

I was diagnosed with TN2 in early 2018, which brings me non-stop, constant high pain. Over the years, my symptoms continue to grow worse, offering little relief from overwhelming pain.

As a TN patient, I wish these classifications did not exist. I have been told and have read too many times from TN patients that Atypical TN does not exist, that you either have a compression or you don’t. Patients are being told this by doctors that don’t understand Trigeminal Neuralgia and all that it can entail. If you have been told this by a doctor or do not feel validated, I urge you to find a qualified physician that does understand and will help you on your journey.

I have Atypical Trigeminal Neuralgia. The areas in red show where I have constant pain, with the most intense pain in my cheek, jaw, and mouth.

What Causes Trigeminal Neuralgia

The main cause of Trigeminal Neuralgia (for TN1) is caused by contact between a blood vessel and the trigeminal nerve at the base of the brain. The blood vessel could be an artery or a vein which puts contact on the nerve, causing the nerve not to function properly. 

Conditions such as Multiple Sclerosis can also cause TN. In this case, the myelin sheath that protects the nerve is damaged. TN can also be caused by a tumor pressing on the trigeminal nerve, a stroke, facial trauma, or injury to the nerve during surgery. 

In some cases (like myself), there is no cause found for why the trigeminal nerve is disrupted and causes pain. Lucky me. 

Trigeminal Neuralgia is also most commonly found in adults over the age of 50, but TN can occur at any age, with women being more affected. 

I was diagnosed at age 36. Again, lucky me. 

Treatment Options

Medications

When being diagnosed with Trigeminal Neuralgia, the first line of treatment will typically begin with medication. Most of the current medications for TN are anticonvulsants that help block pain signals. These medications may come with difficult side effects to manage or may not work at all. Common anticonvulsants used to treat TN can include:

• Carbamazepine (Tegretol, Carbatrol)

• Oxcarbazepine (Trileptal, Oxtellar XR)

• Lamotrigine (Lamictal)

• Phenytoin (Dilantin, Phenytek, Cerebyx)

Other medication commonly used can include:

• Topiramate (Qudexy XR, Topamax)

• Pregabalin (Lyrica)

• Gabapentin (Neurontin, Gralise, Horizant)

Surgical Procedures

If medication is not fully helping or has failed, and/or there is a compression on the trigeminal nerve found in your MRI, you may qualify for surgical intervention.

Surgical options could include:

• Microvascular Decompression (MVD) - The most common surgery for TN, the goal of an MVD is to relieve the pressure on the trigeminal nerve by placing a cushion between the nerve and the blood vessel.

• Radiosurgery or Gamma Knife - Gamma Knife uses radiation focused on the root of the trigeminal nerve to help disrupt pain signals.

Other treatment options may include:

• Radiofrequency Ablation - Radiofrequency waves are used to create a lesion on the nerve to help disrupt pain signals.

• Glycerol Rhizotomy - During the procedure, glycerol (alcohol) is put onto the trigeminal nerve to interrupt pain signals.

• Balloon Compression - A balloon is used to compress the nerve and damage pain-causing fibers.

• Nerve Blocks - Trigeminal nerve blocks offer temporary pain relief by injecting an anesthetic near the trigeminal nerve. 

• Botox (Botulinum Toxin) Injections - Botox injections can be used around the head and face to reduce muscle movement and disrupt pain. Botox may be a good option for patients that are unable to take medications and are not surgical candidates. 

• Rhizotomy - During a Rhizotomy, pain signals are interrupted by cutting or damaging the trigeminal nerve. When the nerve is cut, pain may be disrupted, but loss of feeling and movement in your face may be present.

For any medication or intervention for TN, work with a doctor you trust and is educated in Trigeminal Neuralgia. For many of the above options, there is no quick fix for the pain. Medications take time to be effective and doses will be adjusted. Some procedures may offer weeks, months, or year(s) of relief. Some patients may experience remission and may have pain and symptoms return later. 

Note: It is important to work with a qualified Neurologist and Neurosurgeon to discuss medication and surgical options. Not all types of TN can be helped by medication or surgery. Working with doctors that understand your condition and will not put in harm or inadvertently increase our pain is important. If you are told that surgical options are not available for you, discuss why. I urge you to not simply find a doctor that will do a surgery that may not be in your best interest. 

Pain Triggers

Each TN patient has different triggers for their pain. Some may know what those triggers are, others are still trying to figure that out. TN patients are always learning what will trigger pain for them, the list is ever growing.

A highlight of common Trigeminal Neuralgia triggers:

• A light touch to the face

• Brushing teeth

• Shaving

• Applying makeup

• Chewing

• Drinking (temperature triggers vary)

• Alcohol

• Talking

• Smiling

• Moving your head

• Certain spices

• Cool breeze

• Warm breeze

• Vibrations

• Caffeine

• Barometric pressure changes

• Rain and thunder storms

• Hitting potholes while driving

• Certain citrus fruits

• And so many more…

My pain is constant with flares on top of the pain. Occasionally I can hide my pain well, other times it is highly visible. Below is a collection of photos taken over the years with Trigeminal Neuralgia. In each of these photos I am in intense pain, sometimes I can hide the pain. 

My Takeaway

Trigeminal Neuralgia is still being understood. Yes, there are similarities among patients and consensus between some doctors. Ultimately, my own journey with TN has led me to believe that there is still so much we do not know. How one patient feels may or may not be how another patient feels. What works for one patient doesn’t work for another. Surgical options available to one patient may not be an option for another. In my opinion, doctors and patients need to be open to hear these differences and create treatment plans that are in the best interest of the individual patient.

Being told you are not a candidate for surgery is difficult. The entire TN world is shouting that Microvascular Decompression (MVD) is the cure-all for TN. What about the patients that show no compression and/or cannot be operated on? Other patients with TN need to understand that we are not all the same and not push treatment options on those seeking help or support. Doctors need to understand that the pain is real (I’m always shocked when I hear a doctor say TN doesn’t exist because you don’t have a compression or that it’s all in your head). 

Above all, we need compassion. More research needs to be done. More options need to be available to help elevate the horrific pain Trigeminal Neuralgia brings. Our family and friends need to be supportive. Our doctors need to listen and if the patient is beyond their understanding or ability to help, make a referral to someone who may be able to help.

Most importantly, if you know someone who has been diagnosed with Trigeminal Neuralgia, simply be kind. They have not invented this pain. It will not just go away. A medication, procedure, or surgery likely won’t be the cure we are all hoping for. TN is a lifelong diagnosis that is truly difficult to manage. Simply be kind and offer help.