Hi,

This is my first post. I wonder if anybody has shared this experience.
I've had cluster headaches for 18 years now 3 times a year for 5 weeks at a time. That was until the last year when I went without a bout for just over a year... JOY!

However they returned as usual just after the clocks changed at the end of October..with a vengeance, they have now finished, but I now get one a day, whenever I have a drink or I'm tired - but without the pain.. My pupil is small on one side, my eyelid drops and reddens, I get neck pain and I can feel that strange pressure behind my eye and in my temple I just don't have that debilitating pain. It's very unsettling and I wonder if anyone has shared this experience?

Thanks!

We call them Phantom Headaches and those of us who get them know exactly what you're talking about. Everybody else thinks we're mad.

Welcome.

Well Johnny, the problem is, Aussie Brian is mad....and was clearly left unsupervised near a computer where he had internet access! ;)

Several have posted of similar experiences. It's great the pain isn't there. Do you have an effective treatment plan in place when you do get hit? Oxygen, a decent prevent, a neuro who knows what CH is?

Glad you found us, no matter what Brian says he can do for your CH, DO NOT send him any beer! ;D

Joe

Never had them with CHs, but I've had a couple with migraines which I must admit totally confused me the first time. Just treat it as if it's a normal CH and you'll find your usual abortive will work just as if it's a normal one.

Painless cluster has been reported in the medical literature--rare and not understood.

I think it's most frustrating trying to explain it to other people.  Some of those shadows can be impactful without the pain.  It's weird to say, but sometimes it's better when the pain comes back.  Easier for me to deal with.

Hi I have this happen to me at last 2-4 times a week CH without the pain. Iv had a stellate ganglion block for my shoulder pain and as soon as I woke up I had the same thing happen CH with out the pain, This got me thinking so I did some research and won of the Side Effects of a stellate ganglion block is Horner's syndrome. Side Effects of a stellate ganglion block In almost every case, you will experience what is known as a Horner's syndrome after a stellate ganglion block (constriction of the pupil, drooping eyelid, and a red eye). START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

So maybe the stellate ganglion needs some research done on it to see how much it plays with CH.

ALL THE BEST Les

If it doesn't hurt, is it really a "headache"?

Bob P wrote on Dec 21^st, 2012 at 10:01am:

If it doesn't hurt, is it really a "headache"?

Hmm...if a tree falls....yeah ...never mind! ;D

Joe

See what I mean, JohnnyT? They think we're mad!

Bob P wrote on Dec 21^st, 2012 at 10:01am:

If it doesn't hurt, is it really a "headache"?

A very, very good question that I've been thinking for a few hours, with a cold drink to help my thoughts (getting warm and humid here as the reminants of Cyclone Evan approach bringing warm, humid air from the tropics).

If the essentials of a headache are that it affects your head and it makes it ache with a mix of other symptoms, then CH is never a headache as describing the pain as an ache is like describing a nuclear bomb as a small bomb. So equally not having an ache when you get all the other symptoms still makes it a headache.

Sure.  Sometimes a touch of pain, but no big deal.  What seems weird is the other stuff: tears, runny nose, all on one side, can't sit still, can' stand being around people.  Besides lack of pain, they are shorter tan my usual hour.