I have a painful condition known as the 'suicide disease.' This is how I got my life back

Jackie Galgey, 45, is a media professional, children's book author and mom of two. After learning she had trigeminal neuralgia and undergoing two brain surgeries, she's also now an advocate for the rare and chronic facial pain disorder. Galgey shared her story with TODAY.com to raise awareness of the painful condition and how she was able to take her own life back after years of chronic pain.

On a weeklong business trip to Japan in fall 2019, I felt a shock of pain in my face, as if someone was stabbing me. The moments were fleeting — as quickly as they started, they stopped. At first, I wondered if a long flight from New York City to Tokyo contributed to the sensation. But as my time in Japan continued, the bouts of pain increased in frequency and I began wondering if I was experiencing seizures or a more serious health issue. Even though I worried about the 13-hour-long return flight, I was hesitant to seek medical care so far from home. Amazingly, my flight was pain-free.

Still, I knew I needed to see a doctor, and the day after returning home, I went to an emergency room. I explained I was having shocking pains on the right side of my face, and they did a CT scan that did not show anything wrong. Doctors thought perhaps I was having trouble with my teeth because a dental issue could cause pain around the eyes, nose and mouth. Even though my teeth weren’t bothering me, I followed up with my dentist anyway.

At that examination, my dentist noticed that my teeth weren’t causing troubles. But she had an idea of what could be amiss. She asked if I had ever heard of trigeminal neuralgia, and recommended I see a neurologist. I had never heard of it, but she explained that it causes sharp pains in the face, usually on one side, that can occur intermittently or constantly.

For a few weeks, I suffered in agony as I waited for my neurologist appointment. While the pain started off infrequently and felt like a sharp jab, much like receiving an allergy shot, over the weeks it progressed and severe pain was almost constant.

The neurologist believed I had trigeminal neuralgia and suggested I have an MRI to confirm the diagnosis. He noted that a CT scan cannot image nerves and blood vessels, which is likely why I wasn’t given a diagnosis at the emergency room. The trigeminal nerve goes from the brain to the face and branches out into three locations (hence the tri in the name). One branch runs along the scalp, providing sensation there. The second branch provides feeling to the cheek, jaw, top lip, upper teeth and gums, while the third branch provides sensitivity to the lower jaw, teeth and gums.

When a blood vessel compresses the trigeminal nerve, it causes trigeminal neuralgia. My MRI showed that a blood vessel wrapped around the nerves in my brain. While doctors theorized that maybe dental work caused it, we’ll likely never know for certain why I suddenly developed the condition. Doctors first tried treating me with anti-seizure medication. For about six months, I lived a mostly pain-free life. If pain broke through, doctors upped the dose of my medicine to quell the pain. But that came with other problems: the medication had some serious side effects, such as intense brain fog, balance troubles and speech issues. When I was on a low dose, the side effects didn’t impact me too much. But as doctors had to increase the dosage, the side effects worsened and I developed a stutter.

When the pain broke through, it felt like an electric shock — or like someone was actually stabbing me in the face. Sometimes I’d call it a “stab and go,” when the pain was fleeting. Other times, it felt as if someone was thrusting a knife in my face, pulling it out and doing it again and again. If I ate or laughed, that would trigger the pain, making me shy away from social situations that could cause a flare. It felt overwhelming when the medicine became less effective, and the neurologist would have to up the dose or add another medication.

As time passed, the medication alone was no longer enough. The doctor added in another medication that caused serious balance issues. I couldn’t even walk in a straight line, and it dramatically slowed my reflexes. I worried about driving my children, who were 4 and 2 at the time.

After more than a year of pain with little relief, I spoke with a neurosurgeon about surgery. Doctors would open my skull and place a small divider between the blood vessel and the nerve to stop the compression. If successful, I would return to a pain-free life. Even though I knew the recovery would take a long time and be difficult with a career and family, I felt like I needed to try it because I couldn’t really function anymore.

Ahead of the surgery, I felt really isolated. Few people have heard of my condition, and I didn’t know anyone in real life who had it. I found others with the same condition on Reddit and many of them experienced such intense pain they considered suicide. In fact, I learned that people with trigeminal neuralgia have nicknamed the condition “the suicide disease" because of how often they experience suicidal ideation. Luckily, I had a strong support system and never contemplated that myself.

When I woke from surgery, I still felt shocks of pain in my face, but they subsided after about a week. My doctor decided that I should be weaned off the anti-seizure medications at this point. When I did that, the jolts of pain returned. The surgery hadn’t worked. The surgeon believed I had so much nerve damage and this was how I was always going to be and prescribed me medications again.

I felt hopeless. I began withdrawing from loved ones because my stutter became so pronounced and I never knew when the pain would incapacitate me. When a flare began, tears would run down my cheeks, and I'd hunch over or try to hide my face. If someone tried talking to me at school drop-off or pickup, for example, I’d wave and run in the other direction. I simply did not know how to manage the pain and be myself. Prior to this was I bubbly and outgoing, but trigeminal neuralgia changed me.

In November 2022 I was laid off from work. I had been preparing for a sabbatical so I could rest and recover when the layoffs occurred. But the stress from losing my job increased the number of pain attacks I experienced. I was on the maximum dose of medications, yet I still felt no relief.

I visited another neurosurgeon who conducted another MRI on me and discovered something shocking: There was a second compression on my trigeminal nerve. Somehow it had been missed the first time I had scans and surgery. After much thought, I decided to have surgery again. This time I understood what the procedure and recovery were like.

Still, I grappled with the decision. Was a second brain surgery the best thing to do? Could I live with this pain? Could I be a shell of my former self? I’d cry at night thinking of how I’d never be the joyful, fun person I once was. That’s how I knew I needed to try again.

In January 2023, I had the second surgery. When I woke, I was completely pain-free. I experienced some numbness near my mouth and eyebrow. The latter has gone away but I still feel like I had a shot of Novocain in my bottom lip. I did have a complication where I developed a staph infection from the incision site and needed to be hospitalized to treat it, which was scary. But I've recovered.

When I was weaned off the drugs again, the pain didn’t return — but my personality did. I could think clearly again. I was able to start running again, enjoy mothering my two children, being a wife and engaging in social activities again. This summer, I'm even going to compete on an Olympics-themed episode of the NBC game show, “Password.”

I still have trigeminal neuralgia because symptoms can lay dormant for some time before returning. But I consider myself to be in remission — and I hope I'll stay in it forever.

I was 40 when I received my diagnosis, which is young to develop trigeminal neuralgia. Onset normally occurs at 50, according to the American Association of Neurological Surgeons. It’s a challenging condition for people to have and I hope that my story and recovery provides people with trigeminal neuralgia some comfort, and I also encourage them to advocate for themselves. Recovery is possible.

If you or someone you know is in crisis, call or text 988 to reach the Suicide and Crisis Lifeline.

This article was originally published on TODAY.com