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Hemicrania Continua | Misdiagnosis


I had decided against visiting a local hospital or asking the hotel to call a doctor.  I was due to travel home the following day and had enough indomethacin with me to last until I could see my own doctor.

My appointment was the first available.  Since the pain started most of my waking hour’s had been spent googling and by now I was fairly sure I was suffering from the same headache.  What I was not able to determine was the specific type of headache.  Some form of migraine was my best guess at the time.  I was looking forward to a more accurate assessment from my own doctor.

I was still taking indomethacin. I had toyed with the idea of not taking the last tablet, my rationale being that I would be able to give a far more accurate account of my symptoms if I was actually suffering the full pain at the time of my appointment. I decided against as I was more than capable of describing a pain that for me was without comparison.

I explained the events to my doctor as they’d occurred and that I was taking indomethacin to control the pain.  I was told I may have a condition called Temporal Arteritis (TA) and as I already had an effective treatment for the pain I would be given a prescription for more indomethacin. This concerned me, I explained that indomethacin (in my view) was simply masking the pain and not doing anything to cure the cause. The doctor went on to say that there were other possible treatments to consider but as the headache had only just started we should see if and how it progressed over the next week or so. With a shake of my hand, the doctor bid me farewell and asked me to make an appointment for a week’s time.

I made the appointment and rushed home to my new best friend. I entered the words ‘temporal arteritis’ into the search box. To say I was concerned with the results is a huge understatement, words like ‘sudden blindness’ and ‘medical emergency’ did nothing to allay any of the fears I already had.  As I delved deeper, I began to think that TA was a most unlikely candidate for my illness and was soon harbouring doubts as to the accuracy of my diagnosis. The primary reasons being that the average age of onset is 70 years and it is very rarely observed in anyone under the age of 50.

The week passed slowly and although on the whole, I was managing the pain with 3 daily (50mg) doses of indomethacin. I had experienced breakthrough pain and suspected I would need to increase the dose to remain pain-free. The problem with doing so was it increased the chances of adverse side effects.  I planned to raise this concern with the doctor at my next visit.

Pleasantries exchanged my doctor gave me the opportunity to express my doubts about the Temporal Arteritis diagnosis. To my relief, I was met with a suggestion that I try another drug and one that was more forgiving in relation to potential side effects.  A revised diagnosis suggested I may be suffering from some form of neuralgia but the doctor didn’t elaborate.

The only inkling to the gravity of my situation was the adoption of a consoling tone as the doctor spoke. With a feeling of abandon, I left the room and booked my next appointment to coincide within a week before I completed the newly prescribed course of treatment.

I was due my next dose of indomethacin and planned to simply swap this for the newly prescribed Naproxen. Some four hours later I was pacing my bedroom, grasping my head in desperation and willing the indomethacin I had just taken to work.  It was already clear that Naproxen could play no further part in my treatment.  Two unforgettable hours later I was pain-free.

I was beginning to form an impression that my doctor may not be able to help me and that I would need to seek the advice of a specialist with relevant expertise.

I called my mother (a retired nurse), to ask her advice. While expressing doubts regarding my doctor’s ability to diagnose and treat my condition, without hesitation she advised me to ask for a referral to see a consultant neurologist that specialised in headaches.


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