Trigeminal Neuralgia Awareness Day

October 7, 2014 is Trigeminal Neuralgia Awareness Day.

I have been suffering from severe and constant facial pain for approximately 3 years.  It has been diagnosed as many things, one of which is Trigeminal Neuralgia.  Because I have received so many different diagnoses for this pain, and have one Neurologist who changed his diagnosis after several months of treatment, I am somewhat uncertain as to what I really have or who I should believe.  I usually say that I have a chronic facial pain syndrome, but most likely what I have is Atypical Trigeminal Neuralgia, which is sometimes called Type 2 Trigeminal Neuralgia (TN2) or ATN.

Since today is Trigeminal Neuralgia Awareness Day, I wanted to share some facts about this life altering condition.

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The following information is from the National Institute of Neurological Disorders and Stroke (http://www.ninds.nih.gov).

What is trigeminal neuralgia?

Trigeminal neuralgia (TN), also called tic douloureux, is a chronic pain condition that affects the trigeminal or 5th cranial nerve, one of the most widely distributed nerves in the head. TN is a form of neuropathic pain (pain associated with nerve injury or nerve lesion.) The typical or “classic” form of the disorder (called “Type 1” or TN1) causes extreme, sporadic, sudden burning or shock-like facial pain that lasts anywhere from a few seconds to as long as two minutes per episode.  These attacks can occur in quick succession, in volleys lasting as long as two hours.  The “atypical” form of the disorder (called “Type 2” or TN2), is characterized by constant aching, burning, stabbing pain of somewhat lower intensity than Type 1.  Both forms of pain may occur in the same person, sometimes at the same time. The intensity of pain can be physically and mentally incapacitating.

The trigeminal nerve is one of 12 pairs of nerves that are attached to the brain. The nerve has three branches that conduct sensations from the upper, middle, and lower portions of the face, as well as the oral cavity, to the brain. The ophthalmic, or upper, branch supplies sensation to most of the scalp, forehead, and front of the head. The maxillary, or middle, branch stimulates the cheek, upper jaw, top lip, teeth and gums, and to the side of the nose. The mandibular, or lower, branch supplies nerves to the lower jaw, teeth and gums, and bottom lip. More than one nerve branch can be affected by the disorder. Rarely, both sides of the face may be affected at different times in an individual, or even more rarely at the same time (called bilateral TN). Continue reading

Working with an Invisible Illness & Chronic Pain

If someone asked me what my greatest challenge was, with regard to living with an invisible illness and chronic pain, I wouldn’t even have to think twice before I answered “working.”  The reasons are likely obvious to anyone who has a chronic illness and/or lives with chronic pain and those reasons are MANY.

We never know how we are going to feel from one minute to the next, let alone one day to the next.  For me, something ALWAYS hurts.  Not just a little annoying pain, but severe, debilitating pain.  Luckily my brain seems to process primarily one pathway of pain signals at a time.  This means that the most severe source of pain is what I feel at any given moment.  Sometimes that is facial pain due to Atypical Trigeminal Neuralgia or Atypical Facial Pain (the doctors keep switching back and forth between these diagnoses) and TMJ/TMD, which feels like someone has placed a needle into my upper right teeth without ever taking it out.  That pain radiates into my cheek, temple, head, and neck.  Sometimes it starts in my neck and radiates outward from there.  My other source of chronic, invisible pain is in the abdominal region due to Endometriosis, PCOS, Endosalpingiosis, and abdominal adhesions.  I usually just refer to it all as “Endo” for the sake of simplicity.  This is often the most debilitating pain of all because it is peritoneal quality pain, which has a tendency to affect a large portion of the body (stomach, abdomen, pelvis, lower back, and upper legs/thighs).  Sometimes it is only a dull ache (my facial pain is usually more severe during those times), but other times it causes severe stabbing, cramping, ripping, crushing, and tearing pain which can bring me to my knees, cause nausea, severe GI symptoms, make it hard to breathe, and even cause me to pass out.  Many compare Endo flare-ups to acute appendicitis or even labor contractions.  It leaves the body in a constant state of inflammation and causes my abdomen to swell to the point of looking pregnant at times.  All of this also causes a debilitating fatigue, which research has shown often reaches a level experienced by those with end-stage cancer.  When that happens, it feels like my arms, legs, and other body parts are carrying around 100 pound weights (which is more than my total body weight).  These are just some of the physical symptoms.  The psychological and emotional symptoms are another monster all their own.  Imagine trying to concentrate on work, completing complex or even mundane daily tasks, dealing with co-workers, attending meetings, managing stress, and meeting deadlines while feeling this way.  Sound tough?  It is.  This is the best way that I know how to describe it but even these words don’t do it justice.  Continue reading