Rock Rapids, IA (ABC9 News) – All of us experience headaches now and then, but those passing aches and pains are nothing compared to a condition that’s affecting over 100,000 people. It’s called Trigeminal Neuralgia and has earned its label as the “Suicide Disease.” The pain related to Trigeminal Neuralgia isn’t fatal, but many afflicted with the disease take their own lives due to the intolerable pain.
Robbie Korthals and Robert Reemts both attend the First Reformed Church in Rock Rapids, Iowa, but that’s not all that they share in common. They are 2 of only about 120,000 people that suffer from Trigeminal Neuralgia, or TN…a rare but potent nerve condition.
Robbie Korthals describes the pain as, “Like you’re being struck by a lightning bolt. Or like you have an electric fence on your face. I have a lot of pain and pressure behind my ear and under my tongue there’s a lot of burning sensation.”
The pain is caused by a compressing or disruption of the Trigeminal nerve – which splits in three and runs through your face signaling sensations while also triggering motor functions. When the nerve gets flared up, it can lead to episodes of overwhelming pain – sometimes with no warning whatsoever.
It hit Robert Reemts a few years ago – he says, “One morning I was shaving and I yawned…and I got this excruciating pain through the top of my head that felt like I was getting electrocuted!”
A bumpy road, a gust of wind, or something as simple as cracking a smile can unleash an episode of pain. Robbie is currently limited to only a soft food and liquid diet because chewing can trigger her TN discomfort.
Once diagnosed, options to fight TN are somewhat limited. However, a combination of medications, injections, or surgeries can help to manage the pain. Pain medications like Advil or Tylenol do almost nothing to dull the pain. Robert had a surgery to attempt to correct the pain he was experiencing and says he’s doing better now – but he lives with the fear of it returning some day. He says, “I haven’t had any trouble with it. But you always have the horrible feeling that it’s going to come back.”
Robbie and Robert launched teal (which is the color for TN awareness) balloons Tuesday morning hoping to bring more awareness to their condition.
October 7th is Trigeminal Neuralgia Awareness Day. Robbie and Robert hope one day the nerve syndrome will be as widely known as breast cancer – which is also remembered during the month of October.