I AM THE FACE OF Trigeminal Neuralgia. This coming October 16th will mark my one year of having this horrible chronic illness. Today is Trigeminal Neuralgia Awareness Day 10/7 and while everyone might not know my story or even aware TN I’ll educate you a little on both.

 

So what is Trigeminal Neuralgia??

 

Well it’s funny if you google it there are so many ways of explaining it. Google has the least amount of details to other websites having a huge amount. I found on the Americans Association of Neurological Surgeons a nice definition of what I’m dealing with. Trigeminal neuralgia (TN), also known as tic douloureux, is sometimes described as the most excruciating pain known to humanity. The pain typically involves the lower face and jaw, although sometimes it affects the area around the nose and above the eye. This intense, stabbing, electric shock-like pain is caused by irritation of the trigeminal nerve, which sends branches to the forehead, cheek and lower jaw. It usually is limited to one side of the face. The pain can be triggered by an action as routine and minor as brushing your teeth, eating or the wind. Attacks may begin mild and short, but if left untreated, trigeminal neuralgia can progressively worsen.

 

 

So let’s talk about my story:

 

It started in October 2022 the back of my head started to get a tingling sensation it also moved to my eyebrows which felt like bugs crawling all over my head. By the end of the week the symptoms gradually got worse. I thought I was getting an ear infection so I went to immediate care. The good news was everything came back fine, the bad news I was still having problems. At this point everything was on the right side of my head the pain was numbing, felt like electric shocks, and also ear pain. Being a Friday I was told If I get worse or start to lose vision go to the ER, and in the same sentence the dr said nothing to panic over. As I’m laughing internally okay yeah I’m not freaking out right now!! So the weekend passed and the pain increased. I called my family dr that Monday he was able to get me in, going over all of my symptoms he decided to give me medication to make sure I wasn’t fighting a viral infection. At first I thought okay it’s working but after a few days I knew the meds weren’t going to work with what was going on in my body. The next line of business was doing an MRI on my brain, they wanted to check for tumors and to see my trigeminal nerves. We are now 3 weeks into trying to figure out what’s happening to my head, the pain has increased and it’s also slowly moving over to the left side. Now let me say the pain for me anyways at that point was coming and going very consistently. I could be pain free for a few hours and then BAM like that I would get zapped lasting anywhere from 30 seconds to several minutes. The MRI came back with no tumors and showing a vascular loop pressing against my left trigeminal nerve. So there you have it the official diagnosis of Trigeminal Neuralgia. Little did I know it was just the beginning of my new life.

 

Fast forward to now:

 

My life has been slowed way down. I am now seeing my second Neurologist because I wasn’t happy with my first one. My MRI was looked at even closer and the vascular loop isn’t near my nerve close enough to be any reason for a cause to the start of everything so we have no idea what has caused this to happen. There are actually more people out there with no reason for their condition than an actual diagnosis of how it was caused.

 

Let’s try this RX, let’s up this one, let’s down this one that’s the normal dr appt. I’m exhausted all of the time. I am fighting the pain on top of being the busy mom which puts me at a level of exhaustion that I can’t even explain. I have both TN 1 and 2 bilateral all 3 branches, I mean I guess if I’m gonna get it I might as well get it the worst way possible. My pain is consistent almost minute to minute even with meds, there is NEVER a day I am pain free. Gotta love taking two types of meds one of them 3x day and the other 2x a day, it’s a blast and don’t forget to take them because if you do your body will shock you real quick to let you know you forgot. I learned real quick that cold weather and wind are not my best friend. Loud sounds, singing, certain movements, bumps to the head, jeep rides, winter, watching outdoor sports, even indoor sports, stress, weather changes, barometric pressure I could go on and on about things that are triggers. Life changing things…

 

Let’s talk about the pain!! Flares!!

Burning

lightning shocks

Contraction feeling on the face

Bugs crawling

knives and swords in my head and teeth

Red face

Burning/stinging ears

 

That’s some of the pain…

 

Imagine your worst toothache, worst earache, worst sinus infection, worst migraine and now multiple it by 10… welcome to the most excruciating pain of mankind TN!!

 

There are options out there that can help maintain the pain but those are only temporary. Even if I go into remission the chance of it coming back the pain can be even more painful.

 

Make yourself AWARE! #TNAwarenessday2023 #weartealforme #trigeminalneuralgia #chronicpain