4 Ways People With Occipital Neuralgia Describe Their Pain

Throbbing, dull, sharp, blinding. Pain descriptors can be confusing to use but helpful when they get the feeling right. For something like occipital neuralgia, getting more creative when describing what your pain feels like can be helpful — even if it tends to be graphic in nature. In this way, you can also get others to have a better understanding of the pain you experience. 

Occipital neuralgia is a condition that affects the occipital nerves, a set of nerves between the vertebrae in your neck at the base of your head. This can be caused by injury or another condition, but it can also show up as a stand alone condition. The pain experienced can be felt up through the top of your head, even toward your eyes.

The pain from occipital neuralgia is often misdiagnosed as tension headaches and migraines, but the sensations can be far more unique or varied. For myself, I get this burning sensation — almost like my scalp is being stretched. Burning and tenderness across the top of the head are fairly common, as is sharp pain. 

With so many words and descriptions in the world, it’s hard to know where to begin to accurately describe the pain you feel, so we asked the Mighty community to tell us how they describe their occipital neuralgia pain.

1. Electricity

We’ve all been shocked by static from time to time, but living with feeling of electricity in your body is something more extreme. The feeling of shocks and white hot pain associated with electricity are some of the more common sensations experienced with occipital neuralgia. This can mimic the prickles of nerve pain, “being tased” and something as intense as lightning.

Laying down or brushing my hair can be incredibly painful — like sharp pins or electricity against my scalp. … The “zingers” of pain that shoot into the side of my face and eyes come on suddenly. … Sometimes it feels like a needle has been pushed through my eyebrows, temples, or under my eyes. — Jessica T. A.

It feels like being tased in the back of the neck and the shocking feeling goes up through your head. … It basically just hurts to have a head. — Sara B.

Starts like a wisp of a razor, then builds into little shocks of lightning. … It becomes like an invisible ball bat and turns into a sword. — T.K.A.

Barbed wire weaved intricately into my brain, sometimes conducting lightning through it. — Amy W.

2. Creepy Crawlies

Most of us have experienced a phantom feeling that something is crawling on us. Transfer that feeling to include radiating pain, and there you’ll have another type of occipital neuralgia pain. Radiating pain starts in one place and branches out over your skull, ending in another location. It may start at the base of your skull and extend to your eye socket, for example.

Starts with a sharp pain at the base of my skull, then a spider crawling up the side of my face who settles in the bottom of my left eye. After that the intense headaches will start. — Verneice M.

It feels like spider legs from the back of my head pulling my eyes back across the top of my head and the legs are digging into my head. — Kristen E. B.

It feels like there’s a small reptile tunneling through the back of my head and out of my eyes. It can sometimes trigger trigeminal neuralgia as well — which feels like attaching car battery cables to my face. — Emily G.

3. Forceful or Piercing

Forceful or piercing pain may be a bit easier to understand and describe. We’ve all been hit by an object or run into something in our lifetimes. Think about that feeling, or visualize something similar, and you’re on the right track to understanding this type of pain. Those who live with migraine may say the pain is like an ice pick through the temple or other location, and occipital neuralgia pain can be similar.

Intense, throbbing pain in the back of the neck and it radiates to the forehead. It’s like being hit in the head with a hammer. — Heather A. S.

Sometimes it’s like getting hit upside the head with a baseball bat or golf club. — Candess K.

Hot poker in my head. — Crow R. W.

4. Other Types of Pain

Despite there being some hallmark sensations of occipital neuralgia, the full breadth of the types of pain you may experience can be hard to capture in just a handful of categories. The list of types of pain goes on: dull, aching, shooting, stabbing. Here are a few additional unique descriptions for occipital neuralgia pain you may want to add to your vocabulary.

I feel like my entire neck has become rusted shut at every cervical joint, and even the slightest movement causes intense, sharp, stabbing pains… — Vicki L.

The left side of my head tingles and is on fire, and I have 24/7 tinnitus. — Mark B. D.

Pain ranges from feeling like lava is dripping down my skull, a piece of white hot electrical rebar being shoved through my head, lightning bolts and sewing needles shooting out of my eyes, feeling like spiders are crawling in my hair, my head is getting squeezed by a pair of pliers hooked up to a car battery, feeling like someone hit me in the head with a bat, or someone walking behind me constantly tasing me in the back of my head. During a flare my hair will feel like little needles in my scalp, and if it moves it’s excruciating. — Tiffany P. 

If you have occipital neuralgia, you are bound to relate to at least one of these descriptions, if not several. How do you describe your pain? Let us know in the comments!