The intensity of trigeminal neuralgia

Candice shares her experience of one of the most debilitating symptoms of MS, known as trigeminal neuralgia, which is an excruciatingly painful experience. Before MS, life for Candice was busy and somewhat normal but over the space of a few months, everything changed. 

My first MS episode lasted around three months. I noticed that I was unable to focus when both eyes were open at the same time. I constantly felt sick, dizzy and even had to watch television with sunglasses to help me. I went back and forth to my GP around six times across a two-week period and I had multiple appointments at an eye hospital, where I was repeatedly told that nothing was wrong with my eyes. I felt anxious and lost. 

Eventually, after losing my temper at yet another GP appointment and refusing to leave until I was referred for an MRI, I was finally taken seriously.  After a long series of tests, I was told I had multiple sclerosis. This was the beginning of my MS journey – but trigeminal neuralgia came much later. 
 

When I first experienced trigeminal neuralgia (TN), I had no idea what it was. I felt pain in my jaw area, like a toothache. The pain travelled around my left jaw, rather than staying in one place. 

However, I told her that I had MS and she advised me to speak to my MS nurse immediately, before making any decisions to have teeth removed. Which, looking back, saved me from losing healthy teeth. 

The pain was so intense, like nothing I had ever experienced before. It is violent, sudden and completely overwhelming. The pain consumes you. I experienced a whole range of sensations from electrical stabbing pains to burning acid like sensations. My chin and lips even went numb and the migraines were horrific. 

Trigeminal neuralgia affects everything. Eating, speaking, sleeping, touching my face – all of it can trigger an attack. It feels like even just existing can trigger it. Even small vibrations can set it off and so my electric toothbrush had to go. 

My first episode of TN lasted around nine weeks, which was incredibly tough as it took so long to get diagnosed. By the time treatment started, my mouth and gums were so inflamed from the constant pain that I needed to be put on an extremely high dose of steroids, carbamazepine (tegretol) and painkillers. 

The second episode lasted around seven weeks, and this time round the pain was even worse. Alongside the electrical stabbing pain, it felt like someone had thrown acid on my face – a burning sensation beyond anything I can properly describe. 
 

For me, my trigeminal neuralgia attacks often arrive when my MS is already flaring which might have been caused by exhaustion from overdoing it or a wave of migraines. But a trigeminal neuralgia attack can happen without any warning signs. 

Medication has been the main treatment for me. Carbamazepine helps, but you must start on a low dose and slowly build up so it does not work right away. I also found that steroids did work, but they left me feeling awful in the weeks afterwards. I try to start medication immediately after feeling a twinge of what might be the beginning of a trigeminal neuralgia attack as this is the only way to stay ahead of it. 
 

I have not received any mental health support for TN but, what has helped is following MS Trust on Instagram. Seeing other people’s experiences helps me because TN can feel so isolating. It is really reassuring to hear from others who are experiencing the same as you. The MS Trust community can really support each other. 
 

I wish I had been given more information when I was first diagnosed with MS. Please do reach out to other people with MS, as hearing other people describe their symptoms can resonates with yours and be life-changing. 

• Nerve pain – Learn more about the different types of nerve pain experienced with MS.
• Helpline – Reach out to our incredible helpline who can support you with their expert information for any questions you might have.
• Support if you are struggling – Take a look at our resources if you are struggling to cope.
• NHS Trigeminal Neuralgia – Read more about trigeminal neuralgia on the NHS website.