Day 219 - Hemicrania Continua

“Hemicrania continua is a rare type of chronic daily headache where the pain occurs on one side of the head. Although the pain will vary in intensity, it never completely disappears and tends to be mild to moderate with occasional periods of intense pain.

The following diagnostic criteria are given for hemicrania continua; headache for more than 3 months fulfilling 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

The condition exists in two forms known as continuous and remitting. In the continuous form, headaches occur daily with little or no respite, often for years. In the remitting form, headaches may occur regularly over 1 to 6 months, separated by pain free periods of several weeks to months. Pain may occur as short jabbing jolts alongside the persistent daily headache. As with migraine headaches, there are more females than males with hemicrania continua.

The cause of hemicrania continua is unknown. When the symptoms of hemicrania continua are present, it's considered "diagnostic" if the patient responds completely to indomethacin, a non-steroidal anti-inflammatory drug. Triptans and other abortive medications do not affect hemicrania continua.”*

*http://www.headacheexpert.co.uk/ChronicAndHemicraniaContinuaHeadaches.html
*http://en.wikipedia.org/wiki/Hemicrania_continua

The kinesiologist sent me an email today asking me if I had read about hemicrania continua. I cannot believe that after all my research on the internet, and my various appointments with the ‘best neurologists in the UK’ I hadn’t even heard of it. How is it possible that no one has spoken to me about it? What are all these headache specialists doing with their time? Virtually none of the medical websites I looked at mention the condition - they just list cluster/chronic/ice-pick headaches and migraines with aura, and without aura (if it is mentioned, it is just en passant under the chronic headache category).

More despair and anger at doctors, their misdiagnosing, their ignorance on their ‘subjects of expertise’.

The symptoms described above could not be any more similar to mine. When trying to explain what my headache boils down to, I always highlight the fact that it is a constant 24/7 headache which has not left me once in seven months and which varies in intensity, according to its whim (to which I am usually asked: so do you have it now? At which point I wonder which part they didn’t understand: 24/7 or constant?). This is so far the most frustrating and (worryingly) the most recurring question I have been asked.

On top of the persistent right hand side headache, I sometimes feel jolts on top of the constant pain. I may not have hemicrania continua as far as I know. I just read about it and have yet to see someone who deals with this condition (my only doubt is that I do not think I have any of the following, which is a required autonomic feature during exacerbations: conjunctival injection and/or lacrimation, nasal congestion and/or rhinorrhea, or ptosis and/or miosis).

But what is most worrying is that no one even mentioned to me the possibility of having it. I stumbled across a study conducted in Italy on hemicrania continua which found that innumerable patients with the condition have been misdiagnosed:



According to the website, “on average, the patients had tried 3-4 different classes of drugs, most of which were, of course, ineffective. 36% had undergone ineffective invasive treatments as well!”* How worrying is this, I ask?

*http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/

Day 86 - Headache Specialist

"There are several different types of headache. The main types are:

* Tension headaches (also called stress headaches, muscular headaches) - a mild to moderate headache that may last minutes or days and tends to recur. The pain is fairly constant and felt in both sides of the head and neck as a pressure or tension. Most importantly, exercise doesn't make it worse and there are no additional symptoms such as nausea.

* Migraine (see Day 4 - Migraine post.) - symptoms can be variable, and there are several different types of migraine , but this is usually a moderate to severe one-sided headache that pulsates or throbs. Importantly, it gets worse with activity and there are additional symptoms, particularly nausea and vomiting, diarrhoea and an increased sensitivity to noise, light or smells. Some people experience an aura (symptoms such as flashing lights) before the headache.

* Cluster headaches - frequent, short-lived (less than an hour), one-sided headaches across the temple or around the eye and occurring once or more a day, and often disrupting sleep. Headaches recur for several weeks then subside, although another cluster may develop months later.

* Chronic daily headaches - these may be of any of the above types, and occur for at least 15 days a month for at least three months.

Headaches are generally divided into either primary (not related to another disorder) or secondary (caused by other things such as head injuries, high blood pressure or a brain tumour). With secondary headaches, it's essential to treat the underlying cause as this may prove fatal."*

*http://www.bbc.co.uk/health/conditions/headache1.shtml

This afternoon I went to see one of the best neurologists in the UK, who has been ‘a full time headache specialist for the last 12 years’, according to his website.

I described my headache to him in depth, emphasizing that I have already ruled out the possibility of the pain being related to my eyes, my sinuses, tropical diseases, low blood pressure, etc. etc.

As I recounted all the details, the doctor took notes, and explained that at the end of the session he would write a complete description of my symptoms, thereafter sending a copy to myself and to my GP with details of what medication I should take.

The doctor asked me where the pain is centred. I pointed to a specific location on my right temple. What I found very bizarre was that he did not reach out to touch the part of my head which is causing the pain. He immediately jotted down ‘right side temple headache’.

He advised taking steroid or botox injections to alleviate the symptoms.

“Botox?” I asked inquisitively. “But that’s for women who have plastic surgery”, I said. He explained that recent studies in the U.S. have demonstrated that women who suffer from headaches and who have undergone plastic surgery are no longer afflicted with headaches post surgery. As such, doctors now prescribe botox for headaches and migraines.

He thereafter told me that I will always have to carry drugs on me and take them whenever I feel the headache coming on (I guess I didn’t make myself clear when I explained that the headache doesn’t ‘come on’ - it is always there).

Needless to say, I will not be taking neither botox, nor steroids. As I believe I have a secondary headache, I need to find the underlying cause of the pain as opposed to temporarily concealing it with harmful drugs.

Once again, I am back at square one, this time £160 shorter.