Hi everyone,

I had my first cluster headache back in October, and the period lasted until about a month ago.  While I was in my cycle I couldn't run or workout at all without getting hit with a massive attack that night. 

I've been able to drink (the great test) and work out, so I've been really happy, except for one thing: every so often, I get little "twinges." I can't decide if it's psychological- like a little PTSD, can still feel my amputated leg type of thing, or if it's actually a real part of the cluster headaches and they could come back any time now.

Does anyone have any experience with this type of thing?

The informal name around here is, "shadows". A rather personal definition applies, I suspect, re. duration/intensity, etc.

For some months, even years, of starting with Cluster it's not uncommon for your symptoms, site of pain, etc. to change/move about. Has no clinical importance, it appears, and, in due time, a stable picture will emerge.

Re. exercise: for some people, while in an active cycle, exercise will trigger an attack (actually, appears to be anything which elevates body temp).

Ask your druggist if ergotamine, 2mg, SL is back on the market. Using one prior to heat inducing activity may block an attack. Useful, too, to block night time attacks, taken just before bedtime.
====================
Not directly related to your question but one of those unusual experiences which we seldom hear about but--worth keeping this in your file of Cluster information.
--
Curr Pain Headache Rep. 2001 Feb;5(1):55-9. 


Premonitory symptoms in cluster headache.

Raimondi E.

Catedra de Neurologia, Facultad de Medicina, Universidad Nacional de Rosario, 9 de Julio 3826, Rosario 2002 PKP, Argentina. raimondi@cablenet.com.ar

Cluster headache is one of the most excruciating headaches affecting human beings--especially the male sex. Most of the cluster headache cases are of episodic nature, with active cluster periods lasting generally between a few weeks and 2 or 3 months. A still undetermined percentage of patients report nonpainful sensations preceding the onset of the pain attack for a variable period of time. If occurring only a few minutes or a few hours before the onset of pain, such symptoms are called prodromal. When occurring for several days, weeks, or months before the pain, they are termed premonitory symptoms. The author believes that premonitory symptoms have not been properly diagnosed and emphasizes the need to investigate their presence, because by knowing them advances can be made in the understanding of the physiopathology of this particular cephalalgia. Furthermore, it can also allow the physician to be ahead, by giving preventive treatment and stopping or diminishing the intensity and duration of the pain attacks.

Publication Types:
Review

PMID: 11252138 

Hello,

Shadows. i kinda of liken them to the bully who is always waiting for you around the corner, or hideing behind a tree waiting to pounce on you for your milk money.

But like most bullies, once you face it they tend to become less and less scary.

Hope that helps...
Coach Bill

Thanks everyone. I remember getting them in cycle, and I thought I was out of cycle now since I can do everything I couldn't do before. Am I not actually in the clear? Do you get shadows when you're not actually in a cluster period?

Or really does it just mean that it's going to come back? :(

I was so hopeful I was going to be one of those one-time-only deals. Those exist, maybe, right?

It's a crapshoot, CaitieV. We're all familiar with what you are describing, but as in most things CHish, it seems to come down to a personal definition and experience. I know if I don't address the "shadows" a bigger hit is coming. I also know I'm grateful if all I get are shadows. You could be experiencing the onset of a new cycle, or you could be experiencing little attacks that don't quite ramp up to a major hit. The best advice I can give you is hit back, even at the shadows, and don't let the beast have a toehold. Treat them like you would any attack. Sorry I can't be more definitive. God bless. lance

Agree with the crapshoot.  I am out of cycle, but just two nights ago  I got a "wake up" twinge in my usual CH spot at about 2am.  it wasn't a "hit," just a reminder, but they do happen from time to time.  I don't treat them because they are pretty much gone after a minute or so, and I differentiate these from shaddows, which for me are longer, and more closely related to being in cycle.  I just view the twinges as reminders that we are special people :)