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!

Greetings.

I can relate--especially regarding the sleep issues.  The syndrome part of cluster headache syndrome hasn't faded away for me like the pain part, but I'm still elated that the pain is mostly gone. Besides wakefulness, I will also experience a sudden stuffy nose which will subside as suddenly as it begins. It's different than an allergy attack. I can also get temperature swings which used to accompany the pain. So I'm assuming the regimen, while effective in subduing the pain, still doesn't address the other autonomic issues probably caused by a wacky hypothalamus.

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.

That makes sense, Mike, but given that there's no pain, I don't really feel the need to waste O2, and certainly not Imitrex.  It's nothing more than a mild inconvenience, which I'm more than happy to accept.  I'm aware of the silent headache phenomenon via my brother who experiences silent migraines occasionally, I've just never heard of the phenomena associated with CH.  Anyway, thanks for the input!

Hey DJPhrenzy,

Thanks for the update.  Interesting phenomenon.  There's been at least one or two other CHers on the anti-inflammatory regimen over the last 7 years describing something similar to your Ghost Attacks and many describing similar changes in CH time of occurrence.

We all experience and ebb and flow of hormones during the day and night that could easily account for the changes in CH timing if we're near the tipping point of incipient CH.  You already know how to deal with the outbreaks by taking a 40,000 IU to 50,000 IU loading dose for a couple days and bumping the maintenance dose up to 15,000 IU/day or 20,000 IU/day for a week to 10 days.

The outbreak is likely due to an increase in the Spring pollen count and resulting allergic reaction that creates a flood of histamine.  When that happens, all bets are off when it comes to any CH preventative staying effective.   Fortunately, a week to 10 day course of Benadryl (Diphenhydramine HCL) will usually get you back to a CH pain free state. 

If you take the Diphenhydramine tablets, 25 mg in the morning and another 25 mg in the evening should do the trick. 

Be careful if you need to drive as the Diphenhydramine will make you drowsy.  If you need to drive and be sharp during the day, take 50 mg in the evening.  It will work just as well.  I've found an alternative to the Benadryl tablets is Children's Allergy Medicine, Liquid Benadryl (Diphenhydramine HCL).  12.5 mg (5 mL in the measuring cap) in the morning and another 12.5 mg prior to bed works just as well and it results in a little less drowsiness. 

Try to hold the liquid in your mouth for 3 to 4 minutes swirling it around your mouth between cheeks and gums as well as under the tongue.  That gets the active ingredient into the bloodstream much faster than through the GI tract.  It's very sweet.

Take care and please keep us posted.

V/R, Batch

G'day djphrenzy, and there's quite a few of us get those Phantom Headaches - all of the symptoms but none of the pain.

There's just as many others say there can't be any such thing as a painless headache so we must all be mad.

Perhaps they're right.

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.

I think I can report the same (or not, hard to tell individually). I get waken up many mornings since a couple of weeks sharp at 7:50am - no pain on most days but my CH side eye feels a bit "glued", nothing severe though. It's not a shadow , I just feel this would have been an attack that didn't manifest in pain but still took place.

I think this started after stopping the initial loading dose week (50k schedule).

When I say most days PF, that's the odd thing. Since some weeks I am running PF for around 2-3 days , then have 1 very mild attack at 7:50 for couple of days. Few minutes o2 and gone. Rinse and repeat since weeks (interestingly mostly PF during weekends, I hate my job which probably ups the underlying stress during the week days, fueling whatever core CH chain reactions we all have individually)

Today I had one at 6:50am, needed o2 again since many days. Why the f*** an hour early  ? Doesn't make any sense.

I don't take benadryl anymore as the pain is completely manageable or as described not present on many days. Benadryl just blocks receptors and won't aid breaking the cycle so with the current low pain intesity I rather spare my body these additional chemical ingredients.

What are those random frequency changes and these ghost attacks, I just don't get it. A lot of conclusions from the different treatment options do make sense to me but what's the reason about the jumping timing changes ? Hormones release in the morning etc should have a pretty fix timing as well if this is the cause, or am wrong here ?

D3 levels should not jump up and down this rapidly either from one day to the other, but I might be wrong here as well.

It is so annoying when you anticipate after multiple PF days that the cycle has stopped only that it hits you again. I also had days where I really felt great and had that sensation it's over. Only to get reminded soon it isn't. It would be so great to rely on the feeling at least that it fades out, but it doesn't.

This up and down happened now many times over the past month and just further increases the desperation and depression.


Close to 3 months now total, coming from a couple of weeks lasting cycles the prior years.

Hard to adjust, I want my life back :(