New Neurologist, New Outlook

One year after my failed neurologist visit, I got a referral to a neurologist in Louisville who specializes in treating headaches. He is smart, understanding, and, most importantly, compassionate. Unfortunately those qualities, while they make for an excellent doctor, are not enough to create a solution. We’ve progressed through a few diagnoses and a long list of medications. Before I went for the first visit, I began reading online about different headache types.
His first diagnosis, which was my guess as well, was hemicrania continua. HC is characterized by pain occurring on only one side of the head. The pain is usually mild to moderate with short severe stabbing pains. It can be accompanied by teary eye and runny nose on the same side as the head pain. The real test of the diagnosis is whether the headache responds to indomethacin.
I left the office after that first visit with a prescription for indomethacin and a new sense of hope. The hope lasted quite some time – it was good to have a new ally in my battle. The indomethacin, however, did not stop my headache. I did feel a small bit of relief. Looking back, that may have been due more to hope than the meds. This small bit of relief led us to keep the diagnosis of HC and pursue other medications to treat it for about a full year.

We’ve finally ruled hemicrania continua out. We’re still certain this is a primary headache, which means it isn’t going to kill me. It also makes it harder to treat. Headaches are still very much a mystery.

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A Day in the Life

I’m going to take a brief break in telling my story to flash forward to how my days pass now.
In general I have two types of days: those in which a short nap gets me through, and those in which most of my day is spent lying in bed, or at least sitting around in the dark.

A good day’s routine:

Up at 8 am

Meditation

Exercise

Worship time with my girls

Teaching or helping with lessons (we homeschool)

Chores

Lunch

Nap

Work

It is a lot to do in a day for anyone.Factor in the headache and it becomes impossible. For us, something is always left undone. Schooling is a tough issue, but as long as I feel my girls are better off than in public school, I’ll be sticking with it.

On a bad day – which half or more of my days seem to be lately – we throw the routine mostly out the window.
I still get up on time(ish), mostly so the girls will. Without any parental presence they will hang around in pj’s until noon. (Think public schoolers on a Saturday.)
Then I either hang around in the dark and call instructions to them from the recliner, or I give them direction and go back to bed.

Sleeping is one of the best ways to escape pain. It is pretty hard to sleep with a headache, and harder still when your body says you don’t need any more. My favorite past times are also impossible when the headache has me down. I rarely feel well enough to read, being creative is out, and the kids just can’t stay quiet enough for me to enjoy board games. Sleep and watching movies are really the only escapes I have.

The headache interferes with my days off too. I’m reluctant to schedule outings with friends, afraid I’ll have to cancel. I push myself to be available to take the girls places and to help out at church. This often leads to worse headaches later.

I try not to live like I suffer from chronic pain. I think it makes a real difference both in my outlook on life and on my ability to take care of myself and my family. There are people who don’t know I have any issues. Then again, they didn’t know me before the headache.

I Just Don’t Feel Well

After battling monthly migraines and a few back to back sinus infections, there came a point when the headache just didn’t go away. I can’t pinpoint exactly when it hit. I remember talking to my husband one day and he said “You just never seem to feel well anymore.”
It was a valid point, and a real wake up call. (I need those sometimes.)
So I started keeping a food and headache diary and made an appointment to see a neurologist here in town.
My appointment was in February 2010. The neurologist probably thought I was a head case. (Which in fact I am, it is a headache after all.)
First I described my migraine history. Then I told him how this headache seemed different. It went something like this:

I’ve had Migraines since I was twelve, but this headache seems different. It never goes away. It is always on the right side of my head, I feel like there is pressure in my right eye. I’m still sensitive to light, smells, and sound. The intensity varies from bearable to intolerable – 3 to 7 on a scale of 1 to 10. 

Somehow he came away with the idea that this was just a migraine (Just is his word, there is no Just a migraine. It is a real issue and needs to be treated as such.)

He conducted a brief physical exam and glanced at my journal. Finally, he gave me a list of food triggers, said to take ibuprofen, and billed me $250.

I did learn a few things from my visit. I had no idea yogurt was a trigger for me. It stinks too; I love yogurt. I went through a period of time when I was vegetarian, and yogurt would have been a great protein source. After the appointment is also when I started doing my own headache research online.

It was another year before I sought further treatment outside of my (kind but none to helpful) physician. Once again it came at my husband’s prompting. This time I asked my physician to refer me to a neurologist affiliated with Norton Hospital. We’ve had good experiences with Norton’s.

Before the Headache

There was a time when I thought that a migraine was the worst thing that could happen in my head.

I had my first migraine when I was in 6th grade. My vision blurred, I threw up on a popular boy’s shoes, and my head felt like it would split with every beat of my pulse. I thought I was dying of brain cancer (and embarrassment). Then my dad picked me up, told me it was a migraine and that he got them too. That was the end of it, no discussion, no treatment (besides otc pain relievers) and no advice. Eventually a family friend told me about food triggers.

By the time I reached my mid twenties, I had my migraines down to one or two per month. The problem was that even at once a month it was causing me missed work. A friend convinced me to see my family physician for treatment. So began my quest for a headache cure, or at least some comfort.

We tried a few of the standard abortive drugs: maxalt, imitrex, maybe one more. They did nothing to help; I was better off taking ibuprofen, drinking a cola and taking a nap (sometimes for days). Next we tried topamax. This left me feeling spacey and with numb nose and fingers. It was very disconcerting. I guess I got fed up with trying new meds at this point. I stopped everything and just took ibuprofen if I really had to.

All that was before the daily headache struck.

And I’d gladly go back to it if I could.

Where I Am Now

“Man, my head hurts”

“I wish this headache would go away so I could think.”

“My head is Killing me.”

“Anyone have some ibuprofen?”

I hear people complain about their headaches all the time. All I can say is, “I feel your pain.”

I have had a headache nonstop for about three years now. Sometimes it is bearable, other times it is dreadful. My family members apologize for complaining when they get mild headaches. I’ve had to explain to them that if anything, this headache has made me more empathetic and understanding of their pain.

I’ve never been much of a blogger, but I hope to post about what I have been through trying to treat this headache and that it might be of help to someone else out there going through the same process.