First of all, I want to say thanks to Batch.  I've been living mostly PF since, gosh, probably 2012.

That being said, I wanted to pick everyone's brains about something I've experienced on the Anti-Inflammatory regimen.  I'm not sure I've ever heard anyone discuss this here, but it's regular enough for me now that I thought it worth bringing up.

Background:  37/Male.  Episodic.  My clusters started out being spaced by about 5 years, then dropped to 3 years, then I started the regimen.  I take the regimen everyday, in or out of cycle and have my 25(OH)D labs every six months or so.

So here's what happens.  I'm cruising along enjoying life and one night I get what I call the "notification attack."  Oddly, the time of my attacks has shifted since I started the regimen.  They used to be 10:00pm then 1:00am like clockwork.  On the regimen, this "notification attack" typically happens around 6:00-7:00am (for reference, I take my D3 with lunch, so I suspect perhaps a lowered serum concentration at this time?).  Additionally, the seasonality has gone out the window.  The notification attack is not severe, usually a 3-5-ish.  Enough to wake me up, but usually not sufficient to get me out of bed.  It lasts 15-20 minutes and I fall back asleep.

The next day, depending on the severity of the notification attack, I take a loading dose of D3.  30,000IU-50,000IU. 

Here's where things get weird.  Generally, for the next two evenings, early morning, I experience what I call "ghost attacks."  I wake up with the sensation of an impending attack, but there is no pain.  The sensation lasts 15-20 minutes, during which time I am unable to sleep, even though I'm dead to the world.  I'm most definitely having an attack, but again, it's pain-free, not even a 1.  No pressure, nothing.  It's very difficult to describe.  Before the regimen, the attack sensation and the pain sensation were so closely tied that I was unable to separate them, but during these ghost attacks I have one without the other.  The most interesting thing is that the attack sensation is sufficient to wake me up and keep me up, even without any pain.  I am not a light sleeper, and usually, it would take a freight train hitting the house to wake me up.  Very high strangeness factor.

Then, generally, after a couple nights of this, and a couple days of 20,000IU, I go back to normal.  I'm curious if anyone has experienced anything similar?

Cheers!

What you're describing is something that can happen with multiple headache types, including CH and migraines. It is described as a silent headache and it can have all the symptoms of the normal headache but the pain bit is missing.

If you get one, treat it exactly as if it is a normal one, so using oxygen / imitrex or whatever you'd used.

However from experience it can be a bit confusing when the pain in missing as it is a good indicator of what the appropriate treatment is, so you need to go off all the other symptoms instead.

Hi djphrenzy,

I am very familiar with this phenomenon.
10 months on Topiramate under headache specialist supervision saw me having up to 6 "attacks" daily, with no head pain. At the time I thought it was very weird indeed.

I my case I got the typical light & sound sensitivity (for me) dilated pupils, stuffy nose, hot flushing, muscle tics, unilateral redness in the face and I was cognitively useless just like during CH attack, but no CH head pain. That proved at various doses of Topiramate, in my case, that the autonomous part of the attacks were not stopped at all.
It seems no less disabling to me than CH attack with pain, but I thank the gods when there isn't any pain.
FWIW, I tried the rest of the anti-seizure drugs and none had any beneficial effect on CH whatsoever.

I've experienced the same thing on the D3 regimen, but there's a difference. When these "phantom attacks" happen on the regimen, it is due to sub-clinical allergy, or dropping D3 levels, or one of the many co-factors not being up to scratch, or as Batch says, hormones doing their thing.

With topiramate, I am convinced the autonomous part of CH was blazing away full bore, but with the regimen on the other hand, I am convinced that it does completely block CH pathogenesis. In over 30 years of trying different drugs, both Topiramate and the D3 regimen were the only preventatives that reduced CH pain whatsoever (except Sumatriptan as an abortive of course).

I think many people will express similar symptoms as yourself djphrenzy. Still, if it does not require abortives, I do the same as you and sleep through them if I can.
It's still pretty interesting when colleagues say "Hey, you look like you're about to have a CH attack!", makes our supporters really confused when they see all the outward signs of CH attack and we're soldiering on.