Trigeminal Neuralgia: Living with my new little demon

5 Mins read

After my recent diagnosis, I share a bit of what it’s like to adjust and adapt to this rare chronic condition.

Imagine getting out of bed and hitting a brick wall, your face feels like it’s been slapped and you end up feeling an intense prickling sensation on one side.

There’s the initial shock sensation that normally goes away, but instead, it doesn’t leave you alone; suddenly you forget what normal feels like on your face. That’s what it was like the first time I felt the symptoms of this new thing of mine. 

Trigeminal Neuralgia. It’s a bit of a tongue twister, isn’t it? It’s also something that not many people come across as a daily term. I’m still trying to get my head wrapped around it myself, having been recently diagnosed.

What is Trigeminal Neuralgia (TN)?

By definition, it is a chronic condition that ‘causes painful sensations similar to an electric shock on one side of the face.’  

The Trigeminal Neuralgia Association UK describe the pain as ‘excruciating’, ‘stabbing’, and ‘burning’. The pain can be sudden and can occur on a rare or frequent basis, with each attack episode lasting for a couple of seconds to minutes.  

There are still many discussions and speculation around the specific reasons behind TN and treatment is also at a complex and uncertain level. This obviously doesn’t help reassure those who suffer from the condition (8 in 100,000 people are diagnosed in the UK each year according to Livi UK).

Dr Nancy Hammond of MedicalNewsToday writes that the baseline of the rare condition is caused by the irritation of the trigeminal nerve which is one of the 12 pairs of nerves attached to the brain.

The trigeminal nerve communicates sensations to the face through its three branches. TN usually only affects one side of the face, however it can affect both.

What it’s like to live with TN?

A couple of months have passed since I was diagnosed with TN, and I can’t believe how big an effect the physical pains have on the simple things that I need to do day-to-day.

It’s the basics: doing my makeup, brushing my hair, laughing, smiling – am I just not meant to do those things anymore for the sake of my physical sanity?  

I’m lucky that, so far, the episodes of pain haven’t been as intense lately as when they first triggered. Back then it would happen at least three times each day. This frequency of episodes lasted for at least a month before I was diagnosed. 

It started off as a numb feeling from the top left area of my head, going down to my cheekbone. I initially thought it was a one-off side-effect from being stressed… but it wasn’t.

I would constantly wake up with what felt like a clamp stuck to one side of my head and face, not being able to feel the senses of anything when I would touch or even tap my face. It was a weird feeling, and I still often experience it.

It makes me want to scream, as if I might then feel some semblance of relief from the pain. I never know when my little demon will come and attack me next. 

What felt even weirder was the fact that this lack of sensation led to a numbness that would spread between both my head and face – a rude interruption in my life, as well as my daily routine. 

I now go to bed each night apprehensive, will I wake up with a pounding headache on the left side of my head, or not maybe not even be able to feel my face at all?

Sleeping on my left side is my worst fear as it triggers the living demon that is intruding on my physical and mental space. I remember being woken up with this pain on five consecutive days; it’s unpredictable whether this will increase or get better over time – it truly does suck.

The constant worry takes over my mind. There are some days where I feel no pain at all, basically back to my normal self, but then there are the dark days that are filled with a heavy weight within my head, the throbbing pain grabbing me and squeezing it until it feels numb.

It makes me want to scream as if I might then feel some semblance of relief from the pain. I never know when my little demon will come and attack me next.  

Will I wake up with a pounding headache on the left side of my head, or not maybe not even be able to feel my face at all?

The common trigger for me – believe it or not – is when I’m being hugged by people taller than me. Yes, I know, a bit out of the ordinary, but true.

Everyone around me would agree that I am a tiny human being (five feet tall), and as much as I am a sucker for a good old hug, the pain comes when people hug me and wrap my head into their arms, giving me a big squeeze.

As bad as it may sound, I like to take the more light-hearted and jokey approach when introducing my diagnosis to those around me. I simply say, “I have a condition,” and pull a sad face alleviating the stresses of sticking to the clinical label all the time.

I’ve been fortunate enough that everyone has been understanding and extra cautious when they hug me: a bit gentler (otherwise known as ‘mission: protecting little miss MJ’).

However, thankfully this doesn’t mean that I will have to convert to being a non-hugger, I don’t think I’d be able to cope without the love – I live off hugs for the comfort and joy that they bring on hard days; they provide a sense of reassurance, especially when my TN is triggered.  

Is there any light in this darkness? 

The sad reality of it is that there is no way to recover from Trigeminal Neuralgia completely. It has no cure. It is a condition that one can go into remission for, but no professional or individual has any idea how long one can suffer with TN for. For the most part, it comes and goes as it pleases over time, as the NHS describes. 

I have been given the option to take anticonvulsant medication that is used to treat other conditions such as epilepsy, to help slow down the impulses that hit the nerves which create the pain messages sent to my system (or rather create the physical hell that I have to go through).

There were many pros and cons to taking this medication. One major benefit was that it would help relieve the pain. However, two disadvantages were that the doctors were unsure as to how long I needed to be on the medication until I felt better, and also it would affect me if I wanted to have children in the future – big girl things to think about, which were difficult to decide upon.

How have I managed with TN? 

I have opted for the natural route to help with my condition. This has consisted of taking CBD drops when needed, along with attending therapy sessions to be able to talk about any worries that might be adding to the constant bustle and stresses of my life.

I’ve had a feeling that one of the main causes behind this diagnosis of mine is amplified by stress, this is always something that I’ve found hard to control when times get busy. 

The reality is that I’ve got no choice but to be extra patient with the things that I do, and most importantly, I have to be patient with myself.

Featured image by Andrea Piacquadio via Pexels.

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