My first headache was after a painting lesson from my great aunt when I was 8 years old. And ever since.

I’m 42.

Is it my sinuses?
In the beginning, I suspect sinus headaches because congestion and watery eyes often seem to accompany the head pain. I do allergy testing and a CT scan of my sinuses. Nothing. I continue to try to figure out the cause of my headaches, but they are not occurring every day at this point so my efforts with primary care doctors are sporadic. And fruitless, obviously.

Is it my posture?
My headaches are about half the time now. I’m trying to take care of my sweet toddler while dealing with the pain. I go to a chiropractor and tell her it feels like work to hold my head up. I say that my head always feels heavy or like there is some kind of pressure. Sitting at a desk all day, she says. Except I’m a stay at home mom at this point. This leads me to burn through chiropractors, acupuncturists and massage and physical therapists with no relief.

I wouldn’t call them migraines, but you can if you want.
Headaches are pretty much constant. I am trying to work and take care of my daughter. My primary physician refers me to a neurologist. Neurologist says my headaches have “migraine like tendencies”. I do not accept this in my head—I have no aura, blurred vision, sensitivity to light and sound, nausea and no particular point of onset as the headaches are present at all times—but go along because I have no better diagnosis since I’m, ya know, not a doctor. We try every migraine medication there is. Unsurprisingly to me, none of them work.

So it’s my neck then?
Headaches are depressing me. I hate everyone and everything. There’s no end in sight. I have to find a solution. I feel like the pain definitely originates in my neck or the base of my skull. My neurologist sends me to a spine center where I receive facet injections. Unsurprisingly to me, nothing happens.

How about a nerve thing?
I ride the roller coaster of determination and depression. Know I’m supposed to be enjoying my life, but hate it instead. I continue to harp on the fact that the head pain is occipital (back of the head) and that, while they can spread to other parts of my head, the main event occurs in the back. After googling my symptoms umpteen times, I suggest occipital neuralgia. To my neurologist. Me. Suggesting to her. Sigh. She agrees maybe that’s it.

We do a round of nerve blocks to test this theory. They work. I have relief! But nerve blocks wear off. And they are incredibly painful. Still, I go back for a second round. Relief again! I am thinking I found the magic cure. Then rounds 3 and 4 do not work. I learn this is typical of nerve blocks. They don’t last. What next?

Might as well try botox.
Neurologist says let’s move on to botox. I never believe botox will work because I don’t feel that these are migraine headaches. But I’m not a doctor so sure, let’s do botox. Unsurprisingly to me, nothing happens. They say botox can take up to 5 treatments to work. I keep going back way beyond 5 for no particular reason besides that I have no other action to take. And it does keep brow crinkle at bay.

Let’s go back to that nerve thing.
More years, more research. The pain, at varying degrees of intensity, is present 24/7. I feel completely alone and like diagnosis and treatment is all up to me. A friend shows me a new story about a local woman who had her migraine headaches fixed by peripheral nerve surgery. Her headaches sound like my headaches!

I meet with the plastic surgeon (yeah, THEY’RE the ones who do this surgery) who performed the local woman’s surgery. He gives me an occipital nerve block even though he knows my history and that the nerve blocks quit working for me. Unsurprisingly, the nerve block does nothing and he determines I am not a candidate for the surgery. If I were a candidate, the nerve block would have worked, he says. Except that nerve blocks DID work. They just don’t anymore. Still, for some reason, I accept his ruling. You get beaten down, I suppose.

A year later, I go to a plastic surgeon who is a leader in this field and 10 hours away for a second opinion. He does a thorough screening via questionnaire and a consultation before determining that yes, I am a candidate for this surgery. For once, I feel like everything makes sense.

I return to my hometown and the original surgeon. I don’t trust him for sending me away the first time, but reason that he is a “Top Doc” in my city. Very experienced with this surgery. I find only glowing reviews and several accolades. Still, I am secretly resentful when he states “it seemed like I had done my homework” and we can go ahead and try the surgery.

Did it work?
I had peripheral nerve surgery 5 weeks ago. Insurance didn’t pay for this “experimental surgery” so I took a bit of a gamble when I spent $8000 out-of-pocket. The surgery has an 85-90% success rate depending on who you talk to. Unsurprisingly to me, the headaches are still present. I am told this is normal at this point. I have trust issues where headache treatments are concerned. Still, I try to have faith that the doctor is correct when he states that it’s a long road and not an instant fix.

People tell me “I don’t know how you do it. I can’t do anything when I have a headache.”

Yeah, me neither! Except that I have to. I can’t just lay down and die. I have a daughter. I have a job. I have bills. I have to live.
But it’s sure getting harder to want to.

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