Thursday, December 08, 2011

Hemicrania Continua

Or, to translate, 'Half of my head hurts all of the time.'

I have had a headache on the right side of my head for over five years.

Never debilitating.

But always there. Annoying. Aching. Nagging.

Relieved easily with ibuprofin, but always returning as soon as the medicine wore off.

Every.single.day.for.more.than.five.years.

I've seen my primary care doctor, my dentist, two ear nose and throat specialists and one neurologist. Had CT scans and MRIs. And until two weeks ago, no one could find a cause.

But two weeks ago, a sweet neurologist spent 45 minutes with me... asking me question after question after question. Reading my MRI results. Doing neurological tests.

At first, he joined the others in telling me there really isn't a diagnosis for my symptoms. The MRI was clear. My symptoms were too non-specific... no real causes... no patterns. Apparently chronic, daily, all the time pain isn't enough to diagnose much.

Except Hemicrania Continua.

Which really does mean 'half of my head hurts all of the time' in latin.

And really does fit my symptoms.

The trouble with that diagnosis, is that there is no known cause and no cure. The neurologist told me the simple name means it's a known, medically acknowledged condition, but that they really don't know enough about it to call it anything else. Just like they used to call tuberculosis consumption because they could see it was something that 'consumed' the body... but they didn't really understand it beyond what it did. Maybe someday they'll have a better understanding of Hemicrania Continua. And a better name.

The good news? There is a totally effective treatment.

It means I have to take a pill every 12 hours. But it provides complete relief.

As in: no headache.

That's a GOOD thing.

Because after five years, I can take a little pill before bed and not wake up with a headache any more.

For five years, I woke up with a headache. Went straight from bed to the ibuprofin bottle.

Now I wake up headache free. And I start my day. And when it's time for my vitamins, I take my Indomethacin. And the headache doesn't show up later in the day like it used to when the ibuprofin wore off.

The Indomethacin doesn't seem to wear off. It just keeps the headache away. All of the time.

Now - would I like a cure? Would I like to find a non-medicinal treatment? Do I wish there were some sort of alternative to a twice-a-day med?

Sure.

But until we find that, I'm SUPER thankful that half of my head does NOT hurt all of the time.

So I'm thankful for Dr. Bender. And modern medicine. And finally, a diagnosis and a treatment.

Being pain free after years of chronic pain is really, really nice.

9 comments:

  1. Cathy! I was diagnosed with Chronic Paroxismal Hemicrania (CPH)! In fact, Dr. Bender was my doctor. Unfortunately, I was allergic to Indomethacin, and it gave me what Bender called a chemically induced case of meningitis. It was the worse pain I've ever experienced until the drug left my body. That meant I had to go through a litany of other drugs to see if something else would work, which left my stomach pretty torn up. After several years, the headaches just went away. I've heard they could come back, but so far, nothing chronic. I'm happy you've found your treatment and diagnosis!

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  2. Glad you found a treatment at least.

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  3. Unfortunately I can believe you have gone 5 years without being prescribed Indomethacin.

    You can read about my very lucky by comparison experience @

    www.hemicraniacontinua.com

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  4. Dr Bender is one of the best :) so happy to hear this~!!!

    xo

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  5. I never knew this about you. What a dreadful experience!I'm so glad you've found relief!

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  6. I'm glad I stumbled onto this blog Cathy. I have had HC for the past 10 or so years. Glad to see another believer's perspective. Very encouraging. I enjoy your posts and will be sharing with my wife. Happy New Year to you, Asia, and your family. Greetings from Nashville, TN!

    Romans 5:3-5

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  7. Wow I don't come across many people that have this disorder. I have had it 3 years now. You are so lucky it is not debilitating to you and that you can run. Most HC sufferers cannot exercise because it makes the headache terribly worse. Did your doctor explain to you the risks associated with indomethacin? I took it 3 months and it was blissful but I ended up being hospitalized twice because of severe gastrointestinal damage caused by it so cannot take it anymore. I wish you luck and hopefully you will stay in the milder range of this illness. I have a blog at http://hemicranialady.blogspot.com if you are interested and some of my followers have hemicrania continua also.

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  8. my mother has had these symptoms on one side of her head for the last 5 + years-- they have not ever tried her on Indocin-- where is Dr Bender located--maybe I could get her in to see him.
    thanks
    Ally

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    1. Ally - Dr. Bender is in Spokane Washington.

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