Trigeminal Neuralgia

Do you remember experiencing brain freeze after eating ice-cream or drinking something cold? The sharp, horrible pain that makes you wince, then clench, and everything stops for the duration of this searing pain? The good news is that brain freeze goes away. While the pain that Trigeminal Neuralgia sufferers experience does not go away.  This is the best example I can give that explains my every day, all day, pain.   

This is my life.

What is Trigeminal Neuralgia?

Trigeminal Neuralgia is referred to as one of the most painful conditions known. The McGill Pain Scale rates TN higher than amputation, kidney stones and unmedicated child birth. TN (Trigeminal Neuralgia) has been nicknamed the Suicide Disease, as sadly, many people suffering with this condition take their lives because of the pain and feeling of hopelessness. There is no cure.

TN effects the trigeminal nerve which carries sensation from the face to the brain.  Pain can be triggered by cold, wind, brushing your hair, eating, drinking, putting on make-up and many other routine, daily activities.  There are two types. TN1 which is the classic type where it feels like intense electrical shocks to the face. TN2, the one that I have, is a constant aching pain that never goes away.  

The exact cause of Trigeminal Neuralgia remains unknown though TN1 has been linked to compression of the (trigeminal) nerve.  In some cases, this can be helped through surgery.  It’s also been linked to Multiple Sclerosis, dental procedures gone wrong and accidents, to mention just a few.  For some it starts with mild pain and increases over time if left untreated.

TN diagnosis is difficult as there is no specific test.  It’s more commonly diagnosed in people 50 years and older. I was 30 when, after a car accident, TN changed my life.  I’m now 40.  During this time I spent four years going from the dentist; thinking that I had an abscess, to my doctor; thinking I had an ear and sinus infection.  There was nothing conclusive but the pain wouldn’t go away.  I saw an Ear, Nose and Throat doctor/ENT, a physiotherapist, an ophthalmologist (changed my prescription multiple times in just one year), tried TENS (Transcutaneous Electrical Nerve Stimulation), Capsaicin cream,  acupuncture, upper cervical chiropractic and went for crania-sacral therapy. There was no easy button or quick fix.

I finally saw a Neurologist, had an MRI, was put on medications and started feeling relief. It was life changing. Six years later I’m still so grateful for my neurologist and the treatment plan that has helped to diminish my pain so that I can function. It’s an ongoing battle that requires changing medications and treatment as they become less effective but it’s manageable most days.  

Symptoms of Trigeminal Neuralgia

My Trigeminal Neuralgia Experience

My TN affects the Ophthalmic Nerve, as well as the Maxillary and Mandibular Nerves on the right side of my face. There have been times when I went to the hospital because the pain was so severe, that my vision blurred and my face literally drooped giving me the appearance that I was having a stroke. I experienced everything from being tested for glaucoma to having a spinal tap for meningitis. Medications like morphine, codeine, Percocet and others never touched the pain for me, but created other issues. They left me feeling high and sick to my stomach.

TN is a lonely horrible condition to have, partly because it’s so hard for others to understand. Outwardly everything appears normal, while internally the pain is excruciating. Daily occurrences like having to cancel plans because of the pain, feeling of grief and loss for the life you once had, staying home, avoiding things and places that might trigger a flare.  Relationships suffer, spiraling into negativity, effects of medication such as weight gain and brain fog … Constant worrying. It’s a battle against more than the condition.

When I was in labour both times with my daughters, I told myself the pain would be gone by the following day, that’s how I got through it, I saw an end. That’s hardly ever the case for TN. There is no rhyme, reason or knowing how long a flare will last, minutes, hours, days, weeks, years. 

This is why depression is such a common coexisting condition. A person can go to really dark places and lose hope easily when it feels never ending and so many things don’t work.

Coping with Trigeminal Neuralgia

• breathing exercises
• meditation
• I quit alcohol, as even a small amount seemed to trigger intense pain
• time with my dogs, animals have been proven to help as therapy, and 5 minutes with an animal has been shown medically to increase dopamine levels. 
• writing a blog about my dogs, they are a positive light in my days, and it gives me something to focus on
• writing a positive quote daily in a journal. This helps keep my mind looking for positives and reframes my mindset.
• not renting space in my head for things I have no control over.-not being hard on myself on particularly bad days

TN is an invisible disease. One that affects so many layers of a person you could never begin to comprehend without enduring the same. 

Living with a Chronic condition like this has taught me that you just have to keep going. Keep trying, if something doesn’t help, try something else. Sooner or later something will make a difference. Don’t quit. 

For more information on Trigeminal Neuralgia, visit the Facial Pain Association. If you’re looking for support for your own chronic pain or invisible illness, join our Facebook support group.