Life With Chronic Head Pain

I’ve written before about living with Idiopathic Intracranial Hypertension (IIH) and the difficulties of dealing with this diagnosis. Chronic pain of any kind in any form can be – and is – a life changing diagnosis and leaves you struggling to find a new normal as you learn to gingerly navigate life and avoid setting off any triggers that cause or increase your existing pain. I’ve lived with chronic back pain since age 12, and a diagnosis of yet another chronic pain syndrome was frustrating, yet nothing new.

Despite being on very familiar terms with chronic pain I quickly learned there was a vast difference between body pain and head pain. It was unsurprising to me to read on the National Headache Foundation website that “people who experience migraine and other severe headaches are four times more likely to commit suicide than people who do not have a headache disorder.” In fact, cluster headaches (while much different than pain from IIH) are also referred to a suicide headaches. 

Why is head pain so different than other bodily pain? In my experience, simply put, you can’t escape head pain.

There are lots of various coping mechanisms a person can use to help with other types of physical pain. Meditation, ice packs, heating pads, medication, massage, yoga, diet modifications – the list goes on. Sadly, few if any of these options are available for, or will work on head pain. When you live with a chronic headache 24/7, ibuprofen just doesn’t cut it anymore.

When my back is acting up, there is a list of things I can do to help alleviate at least a part of the pain – how much really just depends on the day. I can use a heating pad; an ice pack; rub icy hot on the area; use my extra comfortable set of shoes; change positions frequently; take a long nap; take some pain medication; limit my physical activity; avoid bending/stooping; avoid going up and down stairs; move slowly; or when all else fails, simply to try to sleep it off.

Even when experiencing a large amount of back pain I can still adapt. I can use a wheelchair to attend concerts, I can sit and read a book, or go watch a movie. I can go on a slow leisurely stroll in the park, or just lay with my animals and zone out to one of my favorite TV shows. While I still will feel pain, I’m able to occupy myself with a positive experience that helps mitigate at least a small portion of what I am feeling.

This is difficult, or nearly impossible to do with head pain.

I always have a headache. I can remember two specific times in the past 4 years that I was pain free, but outside of those instances I experience head pain 24/7. It is there when I go to sleep, and there when I wake up. Depending on how bad the pain is predicts the outcome of my day. I have to weigh my pain against every possible activity during the day. This includes:

• Can I safely drive today? Is my pain at a point where I can safely focus on the road and my surroundings?
• Can I watch TV, or will that be too much noise and movement?
• Can I listen to music, or will it cause more pain?
• Can I read a book, or will it cause more pain?
• Can I play a video game, or will the movement and noise cause more pain? Will wearing a headset make things worse?
• Can I get work done on my computer, or will staring at a computer screen only make things worse?
• Can I go to that concert tonight that I have tickets for? Surely it will increase my pain – is the pleasure from the concert worth the pain increase and the possible consequences the next day?
• Can I go out and get a drink with friends? If I can drive, will the venue be loud or quiet?

On days where it hurts to think, where my eyes physically hurt, when it feels like my head is in a vice, there is no escaping. Watching tv, reading a book, walking to the mailbox – each and every activity either causes more pain or offers no alleviation or chance to escape. When you live with chronic pain, you often escape to your own mind, shifting your focus from your pain to something that can redirect your attention and offer some comfort. Now imagine that your brain hurts – that you have no escape then. What next?

Welcome to life with headaches.