One year ago today I went to the ER for the worst pain in my life. 

It started with a headache. But it was not a normal headache. Nothing would shake it.

The following few days the pain spread to my cheek, ear, jaw, and teeth. 

It became excruciating. I started having pain behind my left eye, and my vision was slowly fading out. All while my left ear felt like the eardrum was going to burst at any moment. 

I tried to ignore it, but the pain became unbearable. I have a high pain tolerance and thought I could push through and ignore it.

I was in the most pain I had ever been in. I felt like I was dying. 

I wanted to die. I hate saying this- but I knew if this pain couldn’t end, I would want my life to end. I don’t think people truly understand what this pain was like, but that’s what it was like. So painful I would rather die. 

There was so much pressure in my face, ear, and behind my eyes. I could not eat, and I could barely move. I was losing vision. I was losing my life. 

I sat in the floor of my kitchen crying. I felt like I was in a living hell.

I made the decision to go to the emergency room. I just needed them to save me. 

When I saw the doctor, he said by a quick glance, it seemed like a stroke, but then he threw other possible diagnoses my way. 

I was shattered. How could this pain possibly never go away. 

He suggested it was possibly Trigeminal Neuralgia.

He said to follow up with an ENT or a Neurologist, and to google the possible diagnoses.

Worst thing to ever tell a patient. 

The following day I decided to schedule an appointment with a neurologist. I got an appointment for the next day. I am so thankful for that. Getting scheduled with a specialist can take weeks and sometimes months. God definitely had his hands on scheduling.

When I went, I explained everything, and they said it was textbook Trigeminal Neuralgia. I did not want that diagnosis, especially after googling it.

I could hear them in the hallway discussing my case, and saying how they could not believe I had gone this long without medication.

Trigeminal Neuralgia is also known as the “suicide disease” because you want to die. It’s also known as one of the most painful things a human can experience. When I say it was excruciating, agonizing pain- it’s no exaggeration.

There are no words to describe the pain I was in. 

I was given a pamphlet on the condition, and sent home with an anticonvulsant medication, which honestly was a little scary having to add that to my collection. 

Since then, I have had numbness spreading throughout my body- my face, tongue, lips, shoulders, legs, hands, ribs and spine. The vision in my left eye is still very weak.

The MRI that we did a year ago showed a lesion on my brain. Thankful that the follow up MRI we did a few weeks ago has shown no change in the size- which is amazing. 

Although the facial pain literally has been the worst experience in my entire life, it did lead me to a neurologist that has changed my life. 

I have had extreme chronic leg pain since I was 14. It has gotten worse over the years, and has affected my daily life in so many ways, especially as a mom. Since starting the medication for the facial pain, the leg pain has lessened significantly. Which is literally an answer to 14 years of prayer. And we only found this treatment for my legs because of the Trigeminal Neuralgia. I have nerve damage through my body but I am so thankful for medication that I now have access to that is calming the pain down. I can be the mom I want to be.

Today, I am adding a new medication to my current routine, in hopes it helps take away the breakthrough pain. Which would be amazing! But I also know, medications can be trial and error.

Writing all this is hard, because I never want to relive those days again. I know some people think it’s just pain. But when I say that I wanted to die, I mean it. And I have so much to live for on this Earth, especially my babies, but that pain made me forget all the amazing things I have to live for. It put me in a really dark place I never want to go back to. 

The pain is not gone completely. I still have the pain every single day, multiple times a day. But it is manageable. It is an answered prayer. 

This is why chronic illness/pain is hard. It’s hard to navigate. It’s hard to speak about your real feelings. It’s hard to ask for help, because sometimes people just don’t understand. But I am happy they don’t understand this pain. Because in order to understand it, you have to live it. And I do not wish this upon anyone.

I am scared for what the future entails.Because a year has gone by, and the nerve damage is spreading throughout my body. And we have no way to stop it, only to calm the pain down. I am terrified of the pain coming back in my face full force again if this medicine stops working completely one day. I am scared of losing my vision completely. I am not looking forward to the rapidly progressing symptoms. 

But all I know is that God saved me. He placed the right doctors along my path. I can honestly say without Him by my side, listening to every cry, wiping every tear, and holding me close, I would not be here right now to write this one year update.

Trigeminal Neuralgia and nerve damage is awful, but I hope some good comes from it. I hope I can bring awareness, and use this for good. 

I pray this next year goes better, and that the pain lessens even more, or that there is a cure. That would be life changing. For me, and so many others.