Today's post was motivated by my dear trigeminal sister, who is dealing with the difficult experience of constant, intense pain after herpes zoster.
We talked recently about possible pain triggers and "effective medications" for pain, and that's when I suggested she start keeping a pain diary. My favorite tool, which I've written about here before.
I started keeping such a diary many years ago. Initially they were simple notes and daily observations, but over time, experiences related to pain took up more and more space. I intuitively wrote down everything that seemed important. I was learning to communicate with doctors, exploring concepts related to chronic pain, and trying to understand my own body.
These notes were not just a way to organize thoughts. They helped me recognize patterns, look for connections, and collect information that could be significant during diagnostics and treatment planning.
A page from my pain diary
June 4, 9:40 AM. Pain escalated about an hour before the flight. I was still hoping it would ease, that maybe it would quiet down. Nothing doing. It holds stubbornly, without interruption. At first it was around 2/3, but before I boarded the plane it grew to a cruel 4 (I use a 4-point pain scale).
Questions immediately appeared: why now? The last two days were relatively calm. I'm relaxed. Maybe not rested... because with this kind of pain it's hard to truly rest, especially in a place where wind doesn't let you forget it for a moment. And yet it was beautiful, sunny, and so incredibly otherworldly. Almost Martian. Just too much wind. Maybe that's what irritated the nerve. I don't know. It's just a guess.
I try to focus on a book but can't. Stabbing and burning trade places like irritating sprites. I feel as if my face is swelling from the inside. Pain sits on the right side, with perceptible boundaries, though sometimes I feel it radiating further... I'm going crazy, so I return to breath.
I order coffee. I press the cup to my cheek, making it a makeshift warm compress. It doesn't help. Or maybe it helps a tiny bit — just too little to make a difference.
Something is clearly not sitting well with my nerve. Everything that V3 branch supplies is hurting now, and the pain radiates further, as if it recognizes no anatomical boundaries. Jaw, cheek, gums, a piece of the tongue — everything begins merging into one experience... as if gravity were pulling harder on this fragment of face, trying to drag me into an abyss...
It's not easy. Pain doesn't disappear. But I know I have to interrupt this march of ants in my head... I breathe and return to the present moment. Again and again. After all, I'm locked in a tin can, without real help, some 10 km above the earth...
When we land, several hours have passed since the flare began. Pain still holds. It doesn't weaken, but it doesn't grow either. It simply exists and destroys another hour of my life.
And that's what traveling with pain sometimes looks like. Such a journey isn't a fight for it to disappear, but a constant reminder that despite it, I am still here, still breathing, and most importantly, still living.
Pain diary template
I don't always stick to a rigid template. By nature I love to write, so sometimes I let imagination and words lead me wherever they want. Thanks to that, my notes are not just a symptom register but also a story about life with pain.
However, I think at the beginning of this journey, it's worth relying on a simple framework. It helps draw attention to things easily overlooked but potentially important — for ourselves and for our doctors. It teaches us to observe pain, its variability, possible triggers, and impact on daily functioning.
1. Date and time
2. Pain intensity (scale of your choice)
3. Side of face: right / left / both
4. Pain area:
- V1 (forehead, eye)
- V2 (cheek, upper jaw)
- V3 (mandible, lower jaw)
- Multiple areas simultaneously
5. Pain character:
- Piercing
- Electric ("like a shock")
- Burning
- Searing
- Pulsating
- Dull
- Other: __________
6. Episode duration:
- Seconds
- Minutes
- Hours
- Continuous pain (my typical symptom, but varying in intensity — which I also record)
7. Possible triggers:
- Speaking
- Eating
- Chewing
- Brushing teeth
- Touching the face
- Shaving / makeup
- Cold air
- Stress
- Fatigue
- No clear trigger
- Other: __________
8. Accompanying symptoms:
- Tingling
- Numbness
- Hyperesthesia (touch hypersensitivity)
- Eye tearing
- Facial muscle tension
- Difficulty eating or speaking
- Other: __________
9. Medications and pain relief methods:
- Drug, dose, time
- Effectiveness (helps or not)
10. Impact on functioning:
- Sleep
- Eating
- Conversation
- Work / responsibilities
- Mood
Beyond the basics
With chronic neuropathic pain, it's worth observing and recording not just pain episodes but also the broader context of their occurrence.
Pay attention to whether pain intensity changes throughout the day. Whether there are moments when it's milder or more bothersome, and whether you can identify contributing factors. It's also helpful to note situations after which pain intensifies or calms — even if they initially seem unimportant.
Consider tracking sleep quality, stress level, fatigue, physical activity, and changes in daily routine. Sometimes only after several weeks of such observation do patterns emerge that you weren't previously aware of.
A diary like this won't make pain disappear, but it can help you better understand your own experiences and notice connections easily missed in daily life. Over time, it also becomes a valuable source of information during conversations with doctors and specialists.
Natalia — since 2014 I've been living with trigeminal nerve pain. I write in plain language, based on reliable sources and personal experience. Read my story →
Frequently Asked Questions
What is trigeminal neuralgia?
Trigeminal neuralgia is a chronic facial pain condition. It manifests as sudden, severe, usually one-sided pain attacks — often described as an electric shock. A single attack typically lasts from a few seconds to about two minutes.
What is the difference between neuralgia and neuropathy?
In simple terms: neuralgia primarily involves paroxysmal pain along a nerve, usually without loss of sensation. Neuropathy involves nerve damage that more often causes constant pain along with numbness and sensory loss.
Do regular painkillers help with neuropathic pain?
Usually not. Neuropathic pain responds poorly to paracetamol or anti-inflammatory drugs. Instead, medications that act on nerves are used, such as anticonvulsants like carbamazepine.
What is postherpetic neuralgia?
This is chronic nerve pain following shingles (herpes zoster), resulting from nerve damage caused by the virus. It is a distinct condition and can be challenging to treat.
Does alpha-lipoic acid (ALA) help with neuropathy?
Some people use ALA as a supportive supplement, but evidence is limited and comes mainly from studies on diabetic neuropathy. It is considered a supplement, not a proven therapy. Always consult your doctor.
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Track your attacks, triggers, and medications — and show your doctor a clear picture of your condition.