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Hemicrania Continua | Self Diagnosis

Self Diagnosis

During the weeks leading up to my appointment, I had to increase my dose of indomethacin to 4 x 50mg daily.  Not something I was at all happy doing as it significantly increased the potential for side effects over the long term.  Doing so though, was the only way I could minimise the episodes of pain.  Fear of the pain returning far outweighed any other concerns I had at that time.  I also tried to placate myself with the fact that I only had three more weeks before formal diagnosis and a more relevant treatment would be made available.

It was during this time that I was at my lowest ebb.  Whilst reading through personal blogs and discussion forums, thoughts abounded from all the personal, sometimes heart wrenching stories I was reading.  People have actually had teeth removed thinking this was the cause of their pain.  Something I can certainly sympathise with. To the extent that I visited my own dentist with similar concerns and was often presented with pain that under normal circumstances would always be associated with severe toothache.

I was still without a name for my condition but was fairly certain that after many months it was a chronic condition and one for which there may be no cure.  I began to contemplate what may happen if at some future time I could no longer tolerate indomethacin and had to stop taking it.  The thought of this outcome had me in tears as I envisaged how I may cope.  Dark thoughts that no one should ever have to contemplate entered my mind, thoughts that are difficult to dismiss when facing such a dilemma.  Hopefully, such thoughts would never be tested.

For now, the focus of my research was no longer trained on my headache but on the one question between it and my dark thoughts.  How could I continue to take indomethacin for an indefinite period of time whilst also minimising the possibility of side effects?

I needed to better understand the adverse effects and symptoms associated with taking indomethacin over an extended period of time.  I entered “indomethacin treatment symptoms” into the Google search box.  One of the first results referred to a medical paper entitled:

“Dose, efficacy and tolerability of long-term indomethacin treatment of chronic paroxysmal hemicrania and hemicrania continua.

Quite a mouthful! I was not familiar with the names but I did have a basic grasp of medical naming conventions sufficient to provide a rough translation.  Half, cranium and continuous were all very relevant words to me.

The paper wasn’t freely available but the provided abstract was more than enough to point my research in a totally new direction.  The first sentence read.

Indomethacin has consistently been proven to provide complete and sustained relief of symptoms in Hemicrania Continua (HC) and Chronic Paroxysmal Hemicrania (CPH), but is not devoid of side-effects.”

I entered the title of the document into Google in the hope that I may find a free version of the paper.  This was not to be the case but the search results did point to an article on Wikipedia entitled Hemicrania Continua (HC) that directly referenced the above document.

I read the wiki article and then searched for additional HC articles.  The more information I consumed the more convinced I became I had identified my foe.

The diagnostic criteria were conclusive.

  • Headache for more than 3 months fulfilling 3 other criteria:
  • All of the following characteristics:
    • Unilateral pain without side-shift
    • Daily and continuous, without pain-free periods
    • Moderate intensity, but with exacerbations of severe pain
  • At least one of the following autonomic features occurs during exacerbations and ipsilateral to the side of pain:
  • Complete response to therapeutic doses of indomethacin

This read like a who’s who for my own personal symptoms.

The only thing I didn’t directly recognise as a symptom was nasal congestion and rhinorrhea (runny nose).  Maybe, due to the time of year, I had naturally dismissed these symptoms with those of a common cold.

Finally, I had a name for my condition, but far from finding relief in this fact the more I read the more distressed, I became.

Hemicrania continua (HC) is a persistent unilateral headache that responds to indomethacin.  It is usually unremitting, but rare cases of remission have been documented.

The words “rare cases of remission” are unfortunately true and backed up by my own findings.  My mood once more had become tarnished by dark thoughts.

The only positive I could draw was that by a quirk of fate I was fortunate enough to already have the single most effective treatment for this type of headache.  I say fortunate as I have read far too many stories from people with this specific condition who have gone years before finally being given a correct diagnosis and appropriate treatment.

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