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We Need a Cure for Trigeminal Neuralgia

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The month of October is Facial Pain Awareness month, but specifically October 7th is International Trigeminal Neuralgia Awareness Day. It’s a day set aside for all those with this painful disease to feel seen and heard. A day to spread awareness. And a day to ask, beg, and pray for a cure. It is a day to renew hope.

So, what is trigeminal neuralgia (TN)?

Here is what TN is in a nutshell.

Trigeminal neuralgia, also known as tic douloureux is a neurological pain condition affecting the trigeminal nerve, specifically the fifth cranial nerve. There are two trigeminal nerves, and each nerve is connected to the brain stem. Each are responsible for the function and the sending of sensations to each side of the face. When working correctly, most people don’t think about, let alone know, what the trigeminal nerve is. And likely, most have never heard of the tongue-twisting named disease called trigeminal neuralgia (TN).

What TN does, is it tells the brain that everything hurts. Talking, eating, brushing your teeth, the wind, water, a gentle touch: everything that is an innocent and normal function or sensation on the face becomes a threat. The reaction is attacks (episodes) of sudden, sporadic and shooting chronic pain. Sometimes it feels like you are being electrocuted. Other times, it is a chronic, burning pain that feels like someone is putting a blowtorch to your face. Then, there are moments it feels like someone is punching you over and over again with an iron fist. Or you’re being stabbed with a dagger. There truly is no one way of explaining what it feels like… Except for the worst pain you could experience, times a hundred.

Trigeminal neuralgia is rare and that is another reason why not many people know what it is. The only ones who tend to know what TN is, are a) those who have this horrendous disease, b) those who love someone with it, and c) some medical professionals.

I’m one of those who has this painful condition. Like I said, trigeminal neuralgia is rare. For those under the age of 40, it’s even more rare. For some of us, it’s extra rare. My TN showed up at age 17. I can agree with the medical professionals: it is one of the most, if not the most, painful conditions known to mankind. I promise they were not kidding. I definitely wouldn’t recommend TN. I don’t have to know what it feels like to be struck by lightning; I have trigeminal neuralgia.

One of the most problems related to this disease is the time spent, sometimes even years, with a misdiagnosis, or no diagnosis at all. The fact of not being taken seriously by dentists, doctors and other medical professionals is part of the problem. Current patients and future patients deserve better. This is unacceptable.

Although, I developed TN at age 17 (though I often wonder if I haven’t had the symptoms as young as age 13), I was not diagnosed until age 26. For nine whole years, I suffered with such severe chronic pain and had no answers to why. I was so very scared and alone. For me, finally having my diagnosis of trigeminal neuralgia was a relief. I finally knew what I had; my pain was validated. I really was in that much pain; I wasn’t being dramatic. It wasn’t just in my head. I wasn’t “crazy.” I had the most painful condition. I had trigeminal neuralgia.

With my diagnosis came the beginning of the long, current journey that I am on. Treatment. For all the years of not knowing what I had, this in many ways has also been a very tough part of having this condition. Medications, side effects, a different medication, more side effects and the cycle continues. With medication, comes another battle: the side effects of that medication(s). The way the pain and medication can impact your daily life is tough. I won’t lie, I hate it. You’re in a bit of a war, thankful for the medication and resenting the side effects of that same medication. I have had dizziness, forgetfulness, blurry vision, falling, fatigue, nausea and my least favorite, the evil brain fog (or as I have affectionally nicknamed it “bain frog” because that’s what it does to your brain).

For many, trigeminal neuralgia is a life sentence. Some people don’t qualify for surgery, sometimes surgery doesn’t fix the problem or sometimes medication isn’t an option. Medications can stop working. Others are allergic to them. Or the side effects are so debilitating they can’t function.

There are multiple things that can make this disease a life sentence. The main one being there isn’t a cure. Every single person with TN deserves a cure. I repeat: Everyone with this awful condition deserves a cure. Whether you are trigeminal neuralgia patient battling Type 1 or Type 2, or a combination. We need a cure for everyone. Not just for some. But for all warriors.

Another part of having trigeminal neuralgia is the depression and anxiety that often exists with chronic pain. This is true for me as well. When in a flare, my depression is flared. My anxiety is out of the roof. When you are constantly going through pain, constantly on edge and bracing for the next pain attack to hit, it is easy for your mental health to take a nosedive. That is why it is so important that patients have the support of their doctors, a mental health professional, a therapist and support from family and friends. I would also add a fellow TN Warrior friend helps.

To talk about trigeminal teuralgia, we must also talk about the nickname… it has been nicknamed the suicide disease. Because the pain is so intense, so incredibly awful, some have taken their own life to make their pain end. This is the biggest reason we need a cure. There should never be a disease so awful, so painful that someone feels their only option is suicide. We need a cure. We need it now.

There really is so much I could say about trigeminal neuralgia beyond the facts I’ve already shared, but I don’t think I could ever truly capture it in words. But for the sake of trying this is what I want to say…

I hate trigeminal neuralgia. I hate it with every fiber of my being. I hate the pain. I hate the fear. I hate the way it has impacted my life. I hate TN. But I do not hate my body for having TN. It is trying to do its best with a situation that it doesn’t know what to do with. It is trying to protect me from a threat it thinks is there.

For all of those years with no answers, with no understanding of knowing what I had, for all the times I have screamed, begged and wished for TN to disappear, I want to thank myself for doing my very best. The truth is, for me, trigeminal neuralgia has made me a stronger and more empathetic person. It has taught me the love and sense of community in friendships that only come from wonderful and courageous people who understand a unique universal pain. Trigeminal neuralgia has taught me that I have a tenacity I never knew I could have.

That all being said, I want a cure. I want a cure for my TN. A cure for those I have come across battling this condition. I want a cure for the future children, teens and adults who will develop this disease. If one must suffer, may they not suffer long.

So, I guess this whole article was written for saying this: Dear World, we need a cure. Will you please help us find it?

I want to send out a loving shout-out to all the wonderful people that, too, have this condition and have crossed my path. Whether for a season or whether you are currently in my inbox or a contact in my phone, you have been a light when I was so long in an unknown darkness. No words can express how incredibly thankful I am for each and every one of you. Many of you I now count and call my friends. Keep fighting strong, and when you feel like you are losing strength, may we lend our own strength to each other.

I also would like to say thank you to my family. For loving and supporting me. You believed me and have supported me through my diagnosis. You all have loved me through my TN. I love you all so very much.

And finally, I want to thank my beautiful and wonderful twin sister, Lydia. She herself is a chronic pain warrior of fibromyalgia. She has been my rock and my advocate. She gifted me on my first International Trigeminal Neuralgia Awareness Day an article. It was the most special and loving of gifts. To be validated and to bring awareness was something I have no words for. And once again, she is gifting me with the belief that I could write this article. Thank you, Liddy. I love you always.

For me, I am stronger because of trigeminal neuralgia. For many years, I never knew what I had. It was very lonely. Gaining my diagnosis, I have also gained an extremely kind, understanding and strong community of fighters. Many who I’m incredibly blessed to call friends. I’m thankful every day for these strong and brave warriors. To be a TN Warrior means you are amongst friends.

If I had any advice when it comes to TN, it would be this: Find the community of trigeminal neuralgia Warriors. When dealing with a pain condition like trigeminal neuralgia, you need to be reminded on the worst days that someone out there understands. That you are not fighting this alone. That you are not alone. I never thought that in gaining my diagnosis, I would be gaining a community. That I would be gaining what I hope to be are lifetime friendships. TN is awful and I hate it, but as I recently told a dear sweet friend who also has TN, “I hate TN, but I am so thankful it led me to you.” Find your TN friend(s). They will be the light in the storm when you need them. And you can lend that light to them when they are struggling. Knowing that I was not alone was a game changer.

My other piece of advice is this: Be gentle with yourself. Your diagnosis is not your fault. I repeat: your diagnosis is not your fault. I didn’t do anything wrong to develop trigeminal neuralgia, it just happened. Don’t listen to anyone who says that you are being judged, that you are faking it, seeking attention, that you’re “crazy.” Your pain is real. You are validated. I see you. Trigeminal neuralgia is tough. But remember you are too.

And with all that, let’s put our brains together and cure this beast.

Photo by Allef Vinicius on Unsplash

Originally published: October 27, 2021
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