My husband Reuben was diagnosed in 2017 with Trigeminal Neuralgia. I am his caregiver and before you will understand my daily struggles, and his, while living with trigeminal neuralgia you need to know what Trigeminal Neuralgia is.
What is Trigeminal Neuralgia (TN)
The medical Explanation:
Trigeminal neuralgia (TN), also called tic douloureux, is a chronic pain condition that affects the trigeminal (fifth cranial) nerve, which carries sensation from your face to your brain. TN is a form of neuropathic pain (pain associated with nerve injury or nerve lesion.) Although sometimes debilitating, the disorder is not life-threatening.
TN is considered to be one of the most painful afflictions known to medical practice. Jolts of pain may be triggered by vibration or mild stimulation of your face such as from brushing your teeth, applying makeup, eating, drinking, talking, or being exposed to the wind. Pain episodes can last from a few seconds to as long as two minutes. These attacks can occur in quick succession or in volleys lasting as long as two hours.
The intensity of pain can be physically and mentally incapacitating. TN pain is typically felt on one side of the jaw or cheek. Episodes can last for days, weeks, or months at a time and then disappear for months or years. In the days before an episode begins, some patients may experience a tingling or numbing sensation or a somewhat constant and aching pain. The attacks often worsen over time, with fewer and shorter pain-free periods before they recur. Eventually, the pain-free intervals may disappear and medication to control the pain becomes less effective. (Mayo Clinic)
Living with Trigeminal Neuralgia (TN)
It all started in 2004 when my husband came out of the shower complaining that he felt electrical shocks on his scalp from the water. We initially thought nothing about it. Then it happened again and again. Our general practitioner diagnosed Bell’s palsy as part of his face drooped. It went away and came back again.
In the meantime he had his first heart attack , was diagnosed with diabetes 2 and sleep apnea. Because he was previously diagnosed with Bell’s Palsy he just received treatment for that. The definition of Bell’s palsy is a condition that causes a temporary weakness or paralysis of the muscles in the face. It can occur when the nerve that controls your facial muscles becomes inflamed, swollen, or compressed. The condition causes one side of your face to droop or become stiff.
The pain occurred on and off for a couple of years, but due to all the other medical problems we only handled it as and when it happened. Then in 2016 it became so bad that he could not talk as talking would cause a flare up for which no medication helped. His pain was triggered by a breeze on his face, Talking, touching, brushing his teeth, brushing his hair, kissing and eating.
We now lived in another small town and the GP first gave him medicine for a virus. This did not help at all. The pain was so bad at ties the tears would roll down his face as he struggled to speak or eat. He already had all the other health problems and he felt like his life was over as nothing helped for the pain.
After a excruciating eight months he was scheduled for a appointment at a Neurosurgeon primarily for tremors. We decided to ask her about his facial pain as I had out of desperation googled his symptoms and it looked like TN to me. She send him for an MRI of his brain to rule out Multiple Sclerosis, tumor and obstructed blood vessels.
She diagnosed him with Trigeminal Neuralgia and unfortunately for him, all three nerves on the right side of his face are affected.
There is not a single medication that can control the pain. It is a combination of medicine, each having it’s own side effects from making him drowsy to confused.
This meme about Trigeminal Neuralgia sums up exactly how he feels.
“Could you please imagine the pain we feel.”
Living with Trigeminal Neuralgia (TN)
Living with Trigeminal Neuralgia for a caregiver is tiring and frustrating. Yes, he is living with the constant pain and when there is a flare-up it is debilitating. I have to be conscious the whole time, make sure he take all his medication, talk for him when he can’t. Watch him in pain, knowing there is nothing I can do. Praying that the pain will ease. A normal day is pain on a scale of 4 out of 10.
I totally understand why it is called the suicide disease. Nobody can see your pain. He feels isolated and depressed. Last week he told me that he wish it would just end. I understand his pain and frustration. People have more empathy for something they can see or touch and you cannot see pain.
We are fighting this together and will face everything together. Living with Trigeminal Neuralgia as caregiver and patient is a daily struggle with everyday being different.