My Tryst with Trigeminal Neuralgia

I had no idea what trigeminal neuralgia was, until it hit me two and a half years ago.

It started with sensitivity on my left cheek, which I thought was a tooth problem, and gradually progressed to affect the entire left side of my face.

Every facial movement (washing my face, brushing my teeth, eating, talking, smiling) caused a burning, shooting pain that travelled all along the right side of my face.

My dentist recommended that I go to a neurologist. I must have found the most taciturn one in the whole city. He diagnosed it as trigeminal neuralgia that was idiopathic (with no apparent cause). He gave me some medication, and no further discussion ensued, as he wouldn’t even make eye contact with me.

I trawled the internet, trying to figure out why it had affected me, but I was none the wiser. My initial experience was perhaps not very different from many others who are faced with an opaque medical system.

Subsequently, thanks to my sister, a doctor, I was very fortunate to find a friendly and helpful neurologist who is available for telephonic consultation whenever I need it. The medication she prescribed helped, and I was, for the most part, pain-free.

However, from time to time, I would experience acute attacks, lasting for a few days. I could not figure out what caused them, since I had no idea what the source was. During these painful episodes, I would be unable to speak, eat solids, or go about my daily routine. I found it onerous to tell people about my condition and deal with the usual “get well soon” or well-meaning advice. Disability rights activists often note the ways in which society trivialises and erases disability. I witnessed first-hand how uncomfortable people are holding space for the experiences of the chronically ill or those with disabilities.

Over time, the attacks were more frequent and severe. At times it was as if the pain was an incubus that had lodged itself in my being and spread its tentacles everywhere, taking over my life.

I tried every remedy that came my way: acupressure, yoga, meditation, and prescribed medication. I was not sure if any of these helped beyond a point because the attacks would still come at intervals.

I became apprehensive about accepting teaching assignments, attending events, or meeting people, except for a few close friends. I wondered what things would be like some years down the line.

Conventional medicine treats illness in terms of the body part it affects, and uses medication to control the symptoms. Since all expertise is concentrated in the hands of the doctor, it does not encourage the person with the illness to observe themselves and understand what might trigger it.

For me, it became important to explore what might have caused my condition, to think back to events that were associated with each of the painful episodes.

I realised that the first attack came soon after a dental procedure. I was convinced that this had damaged my trigeminal nerve. Each acute episode was associated with vibration or pressure in the neck, head, or facial region (for instance, using an electric toothbrush), or after a lot of talking, laughing, and socialising or after eating anything hard.

I began to change my lifestyle, to use a soft silicone finger toothbrush, to avoid continuous talking, and to eat food that involved vigorous chewing (farewell to pizzas).

I have realised that nobody can really empathise with another’s pain. Rather than empathy or sympathy, I appreciate companionship, without judgment or a need to remedy a situation that is not in anyone’s control.

I have realised that my trigeminal neuralgia is here to stay, and I must make my peace with it as best I can. There is no moral to my story, but perhaps it might help someone else experiencing this little-discussed condition or help their friends and family to understand what their loved one is going through.

I realise that I speak from a position of privilege, with access to both monetary and other resources that are not available to many others. To me, my pathway towards a fragile equilibrium has meant accepting what I cannot change, understanding myself better, living one day at a time, and doing the things I enjoy, with a lot of help from prescribed medication, and most important of all, the loving support of my partner, and my close family and friends.