Hi all...

I'm in the middle of my 2nd cluster (last one was back in '97, so  I'm pretty lucky). I'm scheduled to see a neurologist in a month - hope it's gone by then.

One thing I don't remember from the last episode was a pretty constant dull pain/pressure in-between attacks. Not bad at all, but *there*. Is this normal? Does anyone else have a sensation of low-grade pain/pressure like this, even when you're not actually having an attack?

Thanks in advance.

Hi Chris,
Yes. We call them "shadows". It comes in all forms, sometimes mild sensations that are almost pain, if that makes sense, with no other symptoms. Sometimes it's all the other symptoms but no pain. At other times it's just a dull, heavy feeling, pressure or mild headache. But there is something about it - you just KNOW it's part of the cluster thing. It's "the beast" just letting us know that he hasn't gone away yet - just waiting for us to let down our guard so he can pounce. We all have them.

Chris..

That's a great thing .. no hits since 97. Love to hear things like that.

Lots of new things have happened since then. O2 and D3 regimen for two. They've helped so many of us. Check them out. The D3 seems to be working for about 80% of us. Batch has all the details.. but it's a great thing. I've been pain free since Oct 21st (first time since 97).

Let us know how you're doing..  :-*

Shadows can be quite nasty in and of themselves, as they can leave me feeling almost hung over for the majority of the day after an attack.

Hi Chris
I know them very well !
I think i actually have more experience in dealing with shadows than cluster hits as I've had nearly daily shadows since my cycle finished in March. In fact in was the main reason I went on the D3 regime as they were starting to wear me down plus the red bull can wall was getting embarrassingly big.
There is also the unsettling feeling that one day one could explode and knock my head off.
No way as bad as clusters but still a problem none the less.

Chris Goldfarb wrote on Aug 28^th, 2014 at 12:58pm:

I'm in the middle of my 2nd cluster...last one was back in '97...

That's 17 years between your only two attacks. I can promise we are jealous beyond words!

Your neuro appointment is coming up and it's terrifically important that you keep it.

It will help him no end if you keep a diary of your headaches - time, date, duration, possible triggers, what you did to help relieve it, and see our Kip scale to help you explain the levels of pain we must endure.

Most importantly, let us know how you're getting on.

We care.

I just wanted to say thank you to everyone for all the replies. I consider myself a pretty stoic guy but reading these and seeing the actual, real CARING in the words brought tears to my eyes. I'm relieved to say I'm on the downhill slope, and will keep my neurologist appt on the 23rd of this month if only to have a formal record so I can get real medication for the next time. I have been basically suffering with no true meds - nobody in the primary care world seems to understand what the hell these things are. It's so frustrating.