It has been described as ‘one of the most painful conditions’ or ‘an extremely painful condition’ by doctors but others familiar with Trigeminal Neuralgia, patients and dedicated health websites, call it ‘the suicide disease’. While I do not talk about it like that, such hyperbole can be found in my own writings in an attempt to convey how unsettling neuropathic facial distress can be.
Sudden. Severe. Piercing. Stabbing. Electric Shock-Like. Excruciating.
On Fire. Feeling like Rubber. Numbing. Buzzing. Aching.
These are words you can link to Trigeminal Neuralgia. It is nerve pain caused by the fifth cranial nerve and located around my left eye, temple, ear and part of my forehead. On occasion, my nose joins in the fun!
Although individual bouts can come in a rapid sequence every few seconds to two minutes, it can also be an on-off sequence lasting two hours. It arrives suddenly and then disappears as quick. After an array of lightning bolts, it can turn into a burning ache that can last for days. It feels as if you have been given too much anaesthetics by the dentist while your toothache is still there.
It is perhaps the most intensely painful MS-related symptom; not the most predictable and easiest to handle. What you do know is, unlike vertigo or ataxia, TN makes you immediately and constantly aware that the eagle has just landed, right here and right now.
Like a thief in the night, it destroys your sense of security by targeting your house on purpose and repeatedly. It is thunder and lightning at the same time, followed by a tornado, as if your skin is being torn off your face. It plays with your schedule as it does not care when it arrives or when it will go into remission.
In fact, it did go into remission, for a blessed four years. And then, to my shock and horror, it reappeared as if it had been lurking around the corner, waiting for the perfect moment to arrive. Only this time, its intensity was worse and the time in-between attacks shorter than before.
It has been like that ever since.
Nerve pain in the face is the most misunderstood symptom
After all, having stabbing sensations every few seconds and coming and going for at least two hours, really?? Until its dalliance with my physical body, before being diagnosed with multiple sclerosis and Trigeminal Neuralgia, I thought I had been imagining things.
But it is all too real. Injury or lesions in the fifth cranial nerve – which transmits sensations from your face to your brain – is the culprit. Its triggers can be sudden- a door slammed shut, music that suddenly goes up 5 notches, a fire alarm in a shopping centre and even the vibration of feet on the ground when walking.
Yes, triggers like these can kickstart rounds of recurring attacks on the trigeminal nerve. I say this feeling almost ashamed because not many will believe neuropathic facial pain can start with such innocuous events.
Other seemingly less severe triggers can be yawning, feeling the breeze on your face, talking, kissing, eating, accidently touching your face, shaving, putting on makeup… the list is endless.
TN added anxiety to the list of reasons for me not to go out. It added more cancelled meetings, coffee dates and frustrated family and friends to my list of non-events. And, despite previous warnings to the dentist that I have TN when touching my left side, an extraction of a chipped tooth turned into an embarrassing, disastrous event for both the dental surgeon and me.
Not one to cry in public, this time I did and for half an hour afterwards. It was as if something in me finally broke, something MS had not yet been able or allowed to do for 12 years. Afterwards, every time I thought about the event and of having to return for a check-up, anxiety attacks occurred, and when these became more intense, I was told that the fear of the physical pain of the extraction had turned into PTSD.
Just like MS, TN restricts you in more ways than one
Loss of self, loss of social contact, loss of feeling free all replaced with being unable to do what you want and when you want to. In short, you realise that you want so much more from your life. Yet it feels as if your life is moving forward outside your medically restricted world and MS and TN cause my energy to be depleted from all the wrong places.
But you cannot let either MS or TN win. You can cry, you can shout, you can hide and you can feel victimised but do not dare let them win. Do not add more weight to the hyperbole found online – use your experience to spread awareness instead. Step-up, connect, share and build alliances. Whether we have MS and/or Trigeminal Neuralgia, we are all in this together and only together can we show that neither has to be the end.
Pain, Multiple Sclerosis Society of Ireland
Pain treatment, Multiple Sclerosis Society of Ireland
Facing the pain of trigeminal neuralgia, Nursing2020
Trigeminal Neuralgia, National Center for Biotechnology Information, U.S. National Library of Medicine
European Academy of Neurology guideline on trigeminal neuralgia, European Academy of Neurology