When I was much younger, in junior high school perhaps, sleepovers at Steph’s house were always a lot of fun. But I often feared waking up in the morning, because I knew the pain might come. And it did, frequently.

Usually, in the morning, Steph would turn the TV on. My face already beginning to hurt, I knew it was only a matter of time . . . but I was fiercely embarrassed because I couldn’t explain it, so I rarely said a word.

For some reason, the pain came on quicker when I saw a television or a computer screen. Now I know brightly colored screens, especially high definition, are a trigger for me. Then, I thought it was just a coincidence, but it caused a repulsion in me that remains to this day; I cannot stand televisions, and I don’t like computer towers that make loud humming noises. On more than one occasion, I’ve suffered pain attacks triggered by blaring televisions in doctors’ offices. On one of those instances, a huge HD TV was displaying the early morning Dr. Oz show, and now I cannot stand Dr. Oz because every time I see him he reminds me of pain. I have to laugh at that, and I hope it brings my readers a chuckle. Dr. Oz = pain!

These triggers are confusing and scary to people who don’t know what they’re going through. I couldn’t tell my friend what was happening because I didn’t know. All I could do was call my mother and have her come pick me up, because even then, I knew I had fifteen minutes before severe stabbing pain set in, and I had to get out of there. Run, I thought, run as fast as you can. But how could I? I couldn’t escape what was inside me; I was trapped.

People with chronic pain disorders indeed feel trapped. Due to other dark corners of my past, I have learned how to dissociate—to escape my body temporarily. I have done this during races, when my spirit jumps forward out of myself and leads my body; dissociation became the best way to avoid taking walk breaks during an especially trying 5k. If I’m out of my body but still making it do what I want it to do, I can physically achieve my goal. This is dangerous of course; the last time I did this, I left the Run for the Pies race in Tequesta, Florida, discovering I’d dug my nails into my palms enough to draw blood.

But I cannot dissociate during a pain attack. I have tried. The intensity is too much. When my TN got worse this past summer, I writhed on the bathroom floor in agony, totally alone, trying with every fiber of my mind to draw my spirit out of its cage, to pull myself up so I could escape, so I could hover in the air and watch my body go through this horrific experience, this nightmare that made me want to die.

Thinking back to those fun sleepovers at Steph’s house, I remember how we played video games on the computer, enjoyed a delicious dinner with her parents and brother, watched Star Trek movies, laughed, and relaxed. Then I slept well, dreaming, tucked away in my sleeping bag. It wasn’t until I awoke that I was overcome with confusion.

Why is this happening to me? What is this?

Somehow I concluded it was sinus pain.

This past year, at the ENT in Palm Beach Gardens, the doctor shook his head and said, “There’s no way the level of pain you’re describing could be from a sinus infection or a deviated septum. I’d be shocked if it was.”

But when I was a kid, I didn’t know what was happening to me, and it was the scariest thing in the world. I remember riding my bike alone, then collapsing on the grass in the midst of an attack I couldn’t name. How do you take care of yourself, how do you know what to do, when you’re a child and then a teenager with no health insurance, no resources, and a mysterious affliction you can’t identify?

Trigeminal neuralgia is a disorder of the fifth cranial nerve. From Healthline: Trigeminal neuralgia occurs when a blood vessel, either a vein or artery, puts pressure on the nerve at the base of the brain. In rare circumstances, the origin of trigeminal neuralgia is caused by a tumor.

Classic TN, or TN1, is the cause of sharp and random pains in areas of the face where the trigeminal nerve reaches. Attacks can last minutes or hours. TN2 is atypical TN, and involves constant pain.

TN is often misdiagnosed as simple migraines, due to the fact the triggers can be similar. Very often, loud noises and lights from televisions can trigger migraines just as they can TN attacks. Misdiagnosis is a scary thing, because not only do you still have no idea what’s wrong, but you might be taking medication that’s doing nothing for you. I was misdiagnosed two years ago; a doctor told me I had severe allergies and a bad sinus infection. I had neither.

Educate yourself. A good book to pick up is Striking Back: The Trigeminal Neuralgia and Face Pain Handbook. It’s a comprehensive guide for TN sufferers and their families, and explains in detail everything you need to know. Knowledge is power, especially when you’re dealing with doctors. Years ago, I wouldn’t have been able to describe what was happening to me as well as I can now. I just knew it hurt. And when you’re experiencing chronic, agonizing pain, it’s even more difficult to explain what’s happening to you. All you can say is, “It hurts!” If you can say anything at all.

Learn about the nerves inside your face. The trigeminal nerve supplies sensations to your face, which is why TN sufferers experience pain or discomfort on windy days, and even brushing a hair away from your face or touching your scalp can hurt.

There is no test you can take to prove you have TN. The only way to know is to get in touch with how you feel. This is very important. Once you can describe what you’re going through, a good neurologist should be able to explain it to you. Diagnosis is based mainly on your symptoms and history.

Bilateral TN is supposedly even rarer, involving pain on both sides of the face at different times, or at once, but I feel I have this type. Although the majority of my pain is concentrated on my left side—stabbing, dull aching, and tingling—I also at times experience pain on my right side. One day while working at the library, I turned to say something to my manager and I immediately winced, gasped, and leaned my head forward when a sharp, stabbing pain, like a thick needle piercing my flesh, crossed the right side of my face near my eye. It was bad enough to make me almost cry out, but it was gone in seconds.

Often, this pain travels down the right side of my neck, extending from my eye to the bottom of my neck. Then I can barely move, and every step makes an electric shock shoot up my neck toward my right eye; this can last twenty minutes, or several hours, or an entire day. It leads me to think I might also have occipital neuralgia, which is a similar affliction concentrated in the neck and vertebrae. I’m told the only way to “prove” a person has ON is by having a nerve block done. If the pain goes away, it’s occipital neuralgia. If it doesn’t, it’s something else. All this guessing tends to make a patient feel like a lab rat.

Before you go to a doctor, make sure you can accurately describe your symptoms. This is important when it comes to getting a precise diagnosis. So often, we are in such pain and so confused that we have difficulty explaining ourselves. Don’t let this happen to you. Before I went to my first appointment with my neurologist, I made an entire page of notes describing every symptom and memory in detail. Being able to refer to this helped me describe what I was going through and led to a correct diagnosis.

There are several drugs that are commonly prescribed to TN patients. One of them is Neurontin, which is what I’ve been taking for a little under a year. I started with a low dosage, and now I take 1800 mg per day. I still experience tingling, and I avoid touching the left side of my face as much as possible. I never touch my left eyebrow. This seems to be the most sensitive area. It can be very uncomfortable to wash my face, depending on the kind of day I’m having.

Pay close attention to your body and learn what your triggers are. During intense flare-ups, which can last anywhere from a few days to several torturous months, triggers may be non-existent. I learned this when I was first diagnosed, and realized the pain would come no matter what—whether or not I went out in the wind, watched television, or listened to loud music. But during the rest of the year, when I’m not in the midst of a bad flare-up, triggers can include loud music, television and computer screens, touching my face, wind both cold and warm, cold weather, changes in weather and barometric pressure, solar flaring, and even kissing.

If you can, try to avoid the things that cause you the most pain. Sometimes this can’t be done. If cold weather is your nemesis, move somewhere warm if you can afford it.

Part of the reason I left my day job to become a full-time freelancer was because I didn’t want to disappoint anyone by having to call out of work during a flare-up. I still have deadlines I have to meet, but the likelihood of a pain attack is greatly reduced if I can, for example, stay home when the weather is cold or especially windy. I can also go back to my soul-home of Florida, and huddle under a palm tree until Pennsylvania winter has finished doing her worst. My vocation affords me the luxury of traveling whenever I wish—though I would advise against flying during bad flare-ups. (Watch me ignore my own advice.) One of my worst pain attacks happened on a flight from Las Vegas to Philadelphia.

Thinking back, I fondly remember those sleepovers at my friend’s house, and I feel glad that I know what is wrong now. It’s such a relief to have knowledge, to have the wherewithal to combat the pain. If you know what’s wrong, you can arm yourself with the tools and weapons needed to fight it. But if you don’t know what’s wrong—

Then you’re confused, scared, and isolated. If you’re frightened, if you don’t know why it hurts, examine your feelings, learn, and ask yourself, “Is the pain in my face TN?”

If it is, there are resources out there, and there are people going through exactly what you are who can help you understand your condition.

Don’t just put up with it, and don’t be embarrassed. You are important, and you can find a way to persevere.

Whatever you do, don’t give up. Keep fighting. Don’t let TN win.

Click here for a page of links and information you may find helpful.