I posted a few weeks ago about this crazy unpredictable cycle.
I have no idea what's going on.
I have had a lot of inflammation and twinges since June 24th but "he" never showed up. In the past week the twinges have become more intense and are a little painful. My scalp is sensitive to the touch on the side where I get these things and I have a little burning sensation around the eye.


I'm just confused because I have never had a cycle last more than 12 weeks and sometimes the little twinges of pain travel to the right side of my head which has never happened.

Have any of you experienced this? Anything help with the twinges? I'm greatful that I haven't been hit hard YET but it's super frustrating not knowing what's happening to me.

Thanks in advance.

Hi Texaslady
The only predictable thing about CH is that it's totally unpredictable. The twinges you describe are what we call shadows - very minor attacks that never quite amount to anything, but are always there as a reminder that the beast is not too far away. It may develop into full CH, it may stay as it is, or it may go away for a while. CH is different for all of us, and each cycle or even each attack can be different from the last.  It's the nature of the beast, as they say.

It is confusing and it is frustrating, but the only thing you can do is be well prepared for if and when things get worse. I know just what a drag it is to have these constant shadows, but it's better than the alternative.

My own cycles used to be predictable but for the last couple of years I never know what to expect. I still get cycles which last 6 - 8 weeks, but my remissions are peppered with shadows, short 2 day cycles and "one offs". What you describe is fairly common to most of us. Get well stocked up with meds and be assured it's all normal - well, as normal as CH can be that is !!!
Maz.

"Super frustrating" is exactly the term to describe it, too.

There's some of us get what we call phantom headaches where we suffer all the symptoms except the pain (those who've never experienced it think we're mad) and then there's the joy of living with more than one headache syndrome.

It's always worth discussing any changes like this with your doctor if only to rule out other possible nasties and to give yourself a little peace of mind.

Good luck and let us know how you're getting on because we care.

Thank you so much! I have an appointment on the 8th of October. Hopefully he will give me a script for O2. It is super frustrating but like you said it's better than the alternative! :)

AussieBrian wrote on Sep 28^th, 2014 at 6:41pm:

There's some of us get what we call phantom headaches where we suffer all the symptoms except the pain (those who've never experienced it think we're mad) and then there's the joy of living with more than one headache syndrome.

I've had phantom (or silent) CHs and migraines a few times and I was convinced I was going mad as each time I had all my usual symptoms but no pain. It is amazing how you get used to pain being part of the bundle and miss it when it isn't there. But the pain response is what I normally use to gauge what abortive actions I need to do so missing it really threw me out of my comfort zone. For the first one it took quite a while to figure it all out and it helped that I'd read about them here.

As Maz mentioned, CH has a nasty practice of changing things on you, so be prepared and yet don't assume everything is CH related, if in doubt do speak with your doctor.