I drove to St. Louis yesterday for my first referral to a headache clinic (at Barnes-Jewish Hospital's Center for Advanced Medicine). For weeks, I'd been thinking that my headaches (which don't clearly follow the CH pattern) might be the result of low serotonin levels. But the guy I saw seemed pretty certain that these were trigeminal autonomic cephalgia (TAC) of which cluster headaches are certainly a variety. And I do have them in cycles, several days at a time (although they are relatively mild, come on slowly, and last indefinitely.

He recommended increasing my Verapamil (currently 240 mg), getting an MRI and an EKG, getting an oxygen tank and taking melatonin to help sleep. But he didn't see any reason to stop the SSRI  I've been taking for the (apparent) serotonin deficiency, since this seems to have relieved my headaches somewhat.

I'm in the process of doing all of these things. My question to all of you is slightly different. If this is indeed TAC, then I need to avoid triggers. But I don't have a clear sense of what triggers these. Presumably, I want to avoid things that would excite the trigeminal nerve, including vasodilators (imitrex, which works wonderfully for me, and oxygen are of course vasoconstrictors).

What kinds of things should I be thinking of here?

Triggers! In the old days around here this topic would engage us for weeks at a time. Now it's a sort of medical-theological subject which we tend to avoid. <bg>

The subject has disappeared from medical journals, etc. with the exception of alcohol & solvents which are dangerous during a period when we are having attacks. During quiet times, alcohol is o.k. But foods, etc. don't seem to affect CH although still an issue for migraine folks.

Interesting that, several years ago, a single report out of Europe said that white wine was not a trigger whereas all other forms of alcohol were.

If imitrex and oxygen help, why would you avoid them?

There are many TACs, including SUNCT, paroxysmal hemicrania, hemicrania continua, & ch.  Sometimes one can have more than one type going on.  The meds are slightly different w/indomethacin helping with paroxysmal hemicrania and hemicrania continua.  I don't think anything works for SUNCT.

Figuring out multiple kinds of headaches is like peeling an onion.

How do yours differ?  Length of time, number of hits, location, pf or no pf time in between?

Also, triggers are very individual.  Erercise can help some of us and trigger others.  Alcohol, foods, odors, light may be triggers for some.  It is the kind of thing that you need to log and see if you there is a pattern.  Even then, it may be a coincidence.

Good luck.

Charlotte

Bob Johnson wrote on Jun 11^th, 2008 at 2:03pm:

Interesting that, several years ago, a single report out of Europe said that white wine was not a trigger whereas all other forms of alcohol were.

Was that one of mine Bob? ;)  I'll have to update it to exclude the Chardonnay grape (oak aged, anyway) :-/

Triggers are fascinating but as Charlotte says they are certainly not ubiquitous amongst CH.  If you do a search on the old board you'll see that it has become a perennial theme.  Here are a couple of more recent ones to get you started:

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Triggers may even be multifactorial i.e. for some people, there is not just one trigger but a combination of factors which individually can be tolerated but, when they occur all together, a threshold is passed and an attack is triggered.

I think the only way to determine personal triggers is to monitor them carefully (when in bout).  However, for some sufferers, today's trigger may not necessarily be tomorrow's and vice versa, which may mean it may not have been a trigger at all, just coincidence.

All the best with it Stoic.  How was your trip to the UK btw?

-Lee

Thanks for asking, Lee — the trip to the UK was great. Started with the lake district and then on into Scotland for a couple of weeks, ending up in Edinburgh. Only had a couple of headaches, and for the second (even though I had a supply of Imitrex) went into a pharmacy and bought a couple of Imigran over the counter. Worked, as always, like a charm.

Bob