I’m interested to know how you feel between attacks.  If you’re an episodic sufferer in bout, or a chronic suffer, how does the affected area of your head feel when you are not having an attack?  Does this change over the course of your bout?  If you’re episodic, how is it between bouts?

During my first few bouts back in the 90s, I’d say that the area behind my eye would feel kind of sore; unstable; “rusty” in the few hours after an attack.  But a lot of the time I’d be entirely pain free.  Between bouts, I might have the occasional faint “reminder” in the form of a shadow, but they were rare.  I remember a bout in 1999 – longer and worse than previous ones – where I was getting woken from sleep twice a night during its peak.  My head would hurt or feel sore even between attacks, but at either end of the bout my head would just feel normal if I wasn’t having an attack.

Over the past 17 years, I have gone through multiple bouts of shadows, some that have lasted for months, but they haven’t normally resulted in attacks.  Meanwhile, when real CH bouts have started, they come completely out of the blue.  I’m very lucky to be able to say that the last time this happened was in 2003 and the bout was either knocked out with verapamil or (he says hopefully) it was actually just 3 attacks.  But I had a few bouts of shadows in the years after this.    These also went away eventually.  Just once, a CH attack broke through, but even this was back in 2004.  I was on Verapamil between 2004 and 2008/9.  The last bad shadow bout I remember was in 2010.  I began to live a normal life, without the fear of CH, but unfortunately they started again in June this year, sitting at my desk in work.  Totally random.  Since then, the shadows have waxed and waned, sometimes improving significantly for a few days but always returning.  At the moment, they are dreadful.  My head seems to hurt all day, every day.  The feeling of CH pain comes briefly and frequently.  For the rest of the time it’s a burning, twisting feeling deep behind my eye. My right nostril will block up completely for hours at a time, making it more painful  I wake throughout the night with a nagging ache behind my eye that’ll linger for an hour or so after getting up.  I often have a stinging pain in and around my right nostril .   Yet, at almost 6 months since this started, I have not had a CH attack, or certainly not like the ones I used to have.

I want to know how common it is to suffer almost constant pain if you’re a CH sufferer.  The neuros I talk to actually seem to know very little about this.  If you have a minute to share your own experiences, fire away!

Hi Mike,

Thanks for your reply and I note what you say.  Yes - I've wondered for a very long time now whether my CH has morphed into something else.   Hence my question to other sufferers:

- are you complete pain free between attacks or do you always have some level of pain or other sensations in the affected area?



I'm hoping to go in and see my neuro before Xmas. But having asked a number of neuros about shadows in the past (including Alex Nesbit and Peter Goadsby only recently), they seem to note that they know very little about them, which might surprise most sufferers. 

I'm sure that "shadows" cover a range of symptoms. To some, it's the feeling that an attack is coming.  To others, it's the after shocks following an attack.  At a recent headache meeting in London the word that met with the most approval was "reminders".  I can certainly relate to that.

Thanks for sharing your own experiences.  That's certainly how I remember things from when I got typical ECH bouts.  After a bad one, or a really bad night, I might suffer post-attack shadows all day.  But most of the time I felt relatively normal.