Chronic Headaches - No Answers

At the beginning of February I started having headaches. I didn’t think anything of them at first.

I was running errands one day when a headache started on the left side of my head. Nothing alarming. I figured it was either the weather or that I hadn’t consumed enough water. No big deal. It seemed to ebb and flow, but it eventually went away. This started happening intermittently over the course of the next week. Then one day it came on and never left.

I spent 9 days at home trying to treat it myself with over-the-counter headache medication. Nothing touched it. It was exclusively on the left side of my head, I was nauseous, but I didn’t have any orbs or serious light/sound sensitivities. I spent every day laying in my room with the shades drawn, napping and keeping an ice bag on my head. It was relentless.

I called my doctor, who called in a couple prescriptions for me to try, neither of which worked.

Finally, after being text yelled at by one of my friends about the fact that it was not normal to have a headache last for so long, I agreed to go to the emergency room on the 10th day.

I figured they’d do some scans, give me some meds and I’d be back home in a few hours time. Worst case scenario, I might have to stay one night for observation but that was unlikely. The very last thing I expected was for that trip to the ER to turn into a 16 day hospital stay.

While every scan and test was coming back normal, none of the meds they gave me were helping and the pain continued to go from bad to worse and back again. By the time they released me it wasn’t because the headache was under control, but because the next test they wanted to do was delayed due to the dye being on backorder so we opted to have me go home.

At that point, they thought it likely I had a spontaneous CSF Leak. The test I’d have a week later would rule that out.

They tried me on just about every migraine medication on the market. Nothing worked.

Oxygen treatments. Nope.

Occipital Nerve Block. Nope.

Several weeks after I got out of the hospital, for no apparent reason, my headaches started to ease up on their own. I was feeling significantly better. Not perfect, but better. That lasted a few weeks before out of the blue I got hit with a wave of nausea that almost took me to my knees, followed closely by another headache that settled in and hasn’t left since. That was over 3 months ago.

Since then, we’ve discovered that high doses of prednisone seem to be the only thing that keeps the pain under control.

I like my neurologist but I also feel kind of bad for her. She’s doing the best she can but I don’t think she realizes she is fighting a losing battle with me. The likelihood that I developed a headache disorder out of the blue is highly unlikely given my medical history. It’s far more likely this is a symptom of the overall problem, which is likely either an autoimmune disease or genetic disorder. She’s not trained to handle or identify either of those things.

So, right now she’s looking at Hemicrania Continua as a possible diagnosis. Hemicrania Continua is a primary headache disorder, which means it’s not caused by any underlying condition. The thing is, she has her doubts about this being my diagnosis. One of the most common symptoms of this disorder is that the side of the head where the headache is located tends to sweat and/or have a watery eye/nose. I don’t have any of that.

Regardless, she’s having me try a round of Indomethacin. They’ve already tried me on this once before, but she’s having me start on a much higher dose this time. She says if it’s going to work, the result will be profound and we’ll know pretty quickly, so at least there’s that.

If this works, then we’ll taper the dose back until we find the lowest effective dose and I guess I just keep taking it.

It’s amazing to me how this happens. One day we don’t have a symptom and the next we do. One day my hips were fine and the next they weren’t. One day my head was fine and the next it wasn’t. One day I’d never had a Raynaud’s episode and the next I did. It’s wild. You can do everything “right” and still your body betrays you. Or, it feels like a betrayal anyway.

I still remember what life was like before I had these headaches. It wasn’t all that long ago. But I worry I’m never going to know that life again. I’m relentless in my pursuit of answers and effective treatments, but I’m also a realist and I’m constantly working to be at peace with my body and this reality.

Radical acceptance.

I know sometimes I’m going to have to cancel plans or reschedule things. I know I’m going to have to push through my own physical discomfort sometimes in order to do the things I want to do. I know some days (perhaps more than I care to admit), no matter how much I want to go and do, I need to stay and rest.

If the Indomethacin doesn’t work, my next move is to have my doctor start getting the paperwork together to try and get me into the Mayo Clinic. I think we can make a strong enough case to get my insurance to cover it, but we’ll see. All I know is, answers are out there and I’m going to find them.