Life with Trigeminal Neuralgia — the ‘Suicide Disease’
If you read the title and are wondering what the hell ‘Trigeminal Neuralgia” (TN) is I don’t blame you. I have had it for a couple of years now and I still have to Google the spelling to get it right. However, it is basically a chronic illness which forces you to assume a secret identity at times.
What exactly is Trigeminal Neuralgia?
The brain is connected to the body by the spinal cord with spinal nerves sending and receiving impulses and messages to and from the brain. However, there are twelve cranial nerves that directly connect to the body and one of them is the Trigeminal nerve. It is named so because it has three (tri) branches responsible for face sensation.
The trigeminal nerve sends messages from the face to the brain. Usually, it works perfectly fine. So much so that you might not even be aware of its existence. There is no particular reason as to how and why it stops working the way it should. For me, its an overlapping of a nerve on my trigeminal nerve due to which the sensations from my face turn to pain signals while they reach my brain.
This nerve has three branches on both the sides of your face — one that runs through your temple, above your eye and around your forehead, one that runs through your cheek, upper jaw, gums and teeth and one that runs through your lower jaw, teeth and gums.
Now, most of the sufferers have pain in one branch, usually the middle or lower. My attacks come in all the three. The signals are so muddled that it is not always possible to figure out the origin of the pain sensation as it feels like impacting my whole face.
What’s worse is that the attacks can be triggered by any facial movement, even a smile. The other triggers include shaving, touching your face, eating, drinking, brushing your teeth, talking, brushing of cold air against your face, as well as washing your face. Imagine brushing your teeth in the morning with a fear of a lightning bolt hitting your face. But still, you have to do it.
According to Daily Mail, 27% of the TN sufferers take their own life. Hence giving it the scary name of ‘suicide disease’. Personally, I’d suggest people to stop using the term as from even just the most basic research, it’s impossible to find reliable statistics to suggest it’s a disease that causes more people to take their lives than any other so.
Not boasting, But TN is regarded as “one of the most painful condition that is known in the medical world”.
I can’t tell you if the above statement is true or not but I can surely tell you that it's very painful. Imagine being struck by lighting in your jaws, cheeks, and eyes. And then on top of that, getting shocked by a live wire in waves. Not once, not twice. Many times, Every. Single. Day. The attacks can last for seconds, minutes, hours and often days.
Following an attack, I don’t want to talk, eat, drink, or even move my face. To be perfectly frank, just having to endure it becomes an absolute chore. TN drains you completely. Whether it be physically, mentally or even emotionally — it consumes every bit of you. It has the potential to disturb every single aspect of your life like friendship, mental state, financial stability, relationship, career, and even your future. It is not just the pain that worries you but the fear of the next attack that causes anxiety and panic.
As if that was not enough, TN requires you to take a number of high dosage pills. For me, the number stands at 8 tablets per day (excluding the painkillers). And the medicines have their own side-effects. To counter those side-effects (eg- anxiety, depression, sleeping for 14+ hours a day) the doctor provides you with another dosage. And the cycle goes on. Over time, the body gets used to the medicines and you are required to increase your dosage. I personally, started at 3–4 tablets per day and reached ten a couple of months ago.
When the pain hits, I’m at my absolute worst, mentally, emotionally, and physically. I’m very rude at times. Though I think I am usually good at hiding it but over the past while it has gotten on top of me. Lately, I have had a couple of bad attacks in a very short period of time. One of them was when I was at college. It’s hard for people around you to understand what the hell is going on with you. Will talk about it in detail some other day.
Here’s a genuine request though, if you know someone with this disease, please educate yourself to understand what they are going through. Provide them with whatever support you can. If you get to hear that they can’t take it anymore, believe them and help them get support. As TN is an invisible illness on the outside. Usually, what people cannot see, they do not believe. But having struggled with this disease myself, I can tell you that the pain is so very real and beyond anything you could ever imagine. In the end, its only love and compassion that keep us together.
I’ll leave you with this letter from Suzi via TheMighty to help you summarize everything you just read —
Dear Trigeminal Neuralgia,
This time last year I never even knew you existed. Now I know you are so very real. You’re “the worst pain known to mankind,” “the suicide disease.” You live up to these names. Some people with you find no relief and feel suicide is their only way out of your physical, emotional and utterly draining pain.
You now are my every fear. You made me grieve for the life I had before you and the future you will undoubtedly change. My future, while it is there, is now fuzzy. I’d like to say I’m winning, but we are neck-and-neck right now.
You like to make your presence known suddenly, sharply, shockingly and oh so very painfully. You bore pain into my face that I struggle to come to terms with. You are a vicious ice pick being hammered into my ear. Experiencing you is like being struck by lightning to my jaw and cheeks, a live wire connecting to my teeth and shocking me in waves. Set that all on fire, while be crushed by a concrete block all at the same time and that is you, in a nutshell.
As if the pain wasn’t enough, you now affect my financial stability, my mental state at times, my friendships, future, confidence, and social life, to mention a few. I fear a breeze, coldness, brushing my teeth, brushing my hair, kissing a loved one, eating. All the things that can set you off. All your little triggers.
There is definitely no ignoring you. You and your incurable ways. However, while you won’t be ignored, you should know I won’t be giving up anytime soon. I am stubborn. I won’t be ignored. I may not always be winning this little war we have going on, but you will not define me. I was here 25 years before you. I may be different now because of you, but you won’t ever fully own me. We need to learn to adapt to each other because you’re not going anywhere…
But let me tell you this… neither am I.
To everyone suffering with TN, I send you prayers and strength to carry on. I know your pain and I am sorry for your struggle. We can and we will get through this together. We cannot and will not let this monster win. After all, in the best horror movie endings, there’s that one person who survives. They may be bleeding and broken, but they defeat the darkness. They survive. So will we.