When my husband had his first onset of clusters, they were textbook in every way. As the years have progressed, however, they have morphed, and while I suspected that he was moving towards chronic as opposed to episodic, I'm starting to wonder if they're clusters at all and if maybe we've been on the wrong path all along.

This time around, his major cluster pain was fairly textbook and focused in a 3 or 4 week period, and ever since then (about two months now?) he has had "shadow" cluster pain nearly daily (daily as in every day *and* lasting nearly all day, though often not as bad at night before bed) but no only a handful of headaches that he rates on the Kip scale as being actual clusters, and those have always been low on the scale (1-3).

He's done all the standard allopathic stuff - O2, Zomig, the other main one that's actually for migraines that I can never remember the name of, LOL - and nothing ever works. The Zomig came closest to working, but there was always a very small window in which it would, and if he took it too early or too late then it was worthless.

We did the Vit. D supplement regimen that many people here use, and that's actually what caused the first major shift towards this weird "cluster/not cluster" thing he's been experiencing. He actually stopped doing the regimen after 2 years because we wondered if the reason he was getting almost daily headaches six months after his cluster had ended had something to do with it.

So now I don't know what to think. We moved to Texas (Houston metro area) recently and don't have a neurologist here yet. I found a cluster specialist, but I'm wondering if that's the right route to take (particularly since he's not covered by our insurance and the intake visit alone is nearly $250.)

Thoughts?

Greetings....

There are other disorders that can mimic Clusters.....and I've learned over many years many clusterheads are not "typical" as well.

My Clusters have changed a few times in the past 20 or so years so it's not unusual for patterns to change.

My best and only advice ATM would be to seek out a neurologist specializing in headache disorders (sounds like you found one already) and get him evaluated. After having a family member with a brain aneurism, I know it's worth the cost to get checked if for nothing else than to rule out any nasty goings on. Assuming a continuing cluster diagnosis, there are many things yet to try.

As a side note, it's also a good idea to retry the therapies that have failed in the past. Just as clusters can change....so can their reaction to medications.

I agree with Racer_NC.  The one thing with clusters that doesn't change, is it's ability to change.  Just when you think you have a handle on it, off it goes in another direction.
Mine have also changed over the years, and your husbands experience is very much like my own now.
As already suggested, try the meds again.   His reaction to them may be different now.

CH changing is something that is far from being unusual, with changes often happening between cycles or even within cycles. Medications that worked before might not (or vice versa) or the dose required may increase / decrease. CH may switch sides and cycle lengths may change.

So any change may not be sinister but there is always the possibility of something else. We can't blindly attribute everything to CH.

It is also possible to have more than just one headache type too (I've more than one) which can confuse symptoms.

As the people who posted earlier have already mentioned, if you have cause for concern get him checked out by a headache specialist.

Keep us updated with how things progress.

Nothing of value to add other than to say, "What they said." ^^^^

Bill's point is particularly important. $250 now is a lot better than losing him. Please get him checked out.

Jerry