First off, what a wonderful site and I’ve learnt so much the last week since i've found it.   I'll give a quick intro and would love some help to my questions.   It is such an amazing relief to hear that so many people know what’s going on with me, but at the same time so horrible to know that so many people share this, and particularly the chronic form, I had no idea and my heart really goes out to all of you.   I live in Australia and it seems we have a lot less publicity about CHs than in the US, and I now know that my GPs – although I was eventually diagnosed – have had no idea about how to best deal with it.

I first got CH’s at age of 17, and have had them every year for 14 years, for one or two periods per year, up to 4 months long.   I’ve seen so many different specialists about it, and I’ve chased so many dead ends.  But you guys know that story, so lets go to my questions.

I have read some interesting things on this forum about neck soreness and stiffness, and CH relation to stress.  I typically get CH’s about this time of year, but there does (sometimes) seem to be a relation with stress / end of stress that I have also read others mention in the forum.   I also know that pretty quickly into an attack my neck and shoulders have gone incredibly stiff, I’m not sure if its due to the pain or something else more directly related to the cause of the headache.  Sometimes I think it’s the latter, because it gets stiff before I’ve even had time to stress about the pain.   I have spent so much time with chiros, accupuncture, and massage, believing my stiff neck to be the cause of the CHs, but have never responded to those treatments.

Can someone please help explain to me the link between neck pain and CH?  Stress and CH?  If CH’s are linked to the hypothalamus, why can there be a link to stress?

Much appreciated.

Welcome...
I share the same profile as you, started at 17, twice a year for up to 4 months (but for 36 years now)... and also went through concerns regarding stress. I kept a diary and found I was in plenty of stressful situations out of cycle with no concerns. Kind of like alcohol, will cause misery in cycle, doesn't phase me out of cycle. Bottom line for me is CH causes stress, not the other way around. Stiff neck for me, even the muscles of my scalp, and eventually after a few months of getting hit, my shoulders and down my back. Hot showers, massage when you can get it. The D3 anti-inflammatory regiment might help (seems logical) but I haven't really heard any results regarding this annoying little side effect of CH. I just started the D3 myself, so I will keep an eye out for any improvements in this area.

Good job... you are putting it together. Keep questioning, keep researching, till you find what is right for you.

G'day jtale, and welcome to the biggest, unfenced lunatic asylum outside of Canberra. Your description of this dread disease is so familiar that almost anyone of us here could have written your first post.

Your comments about stress are interesting in that, at different times in history, CH has been referred to as Executive Headaches or Holiday Headaches, reflecting their onset immediately following a cessation of stress. (Lucky us.)

As to soreness or stiffness in the neck, a common description here is "cluster bump" and many, many of us get it. For years I thought it was the actual cause of this nightmare, a trapped nerve or something. To this day I use variously hot or ice packs on it and believe this helps. Frozen peas are our friends.

As you'll read around the boards here, oxygen is by far the most important remedy we have. Our good friend Barry from camel country has got all the good gen on how to go about getting started and he'll fill you in for sure.  If you wish to send him beer by way of gratitude then simply post it to me and I'll pass it on.

Magic mushrooms?  I'm in no position to pursue that trail at all but there's two excellent places to look for dinkum information. One is a thread on the CH Specific board called "It's time for the 80% to stand up and be counted". Its a lot of reading but will allow you to form an honest opinion for yourself. Look also at the bottom left-hand corner of your screen and you'll see a button for ClusterBusters.

Otherwise it's chin up, full speed ahead and damn the torpedoes!

Cheers and beers,

Brian up north.

Thank you all so much for your comments, I am feeling so supported and also understood.

jtale wrote on Sep 21^st, 2011 at 12:48am:


Yep you're certainly not the only CH'er who has looked back and found a correlation between past psilocybin use and CH remission. 

I won't be the slightest bit surprised if between the D3 regimen and the cluster busting you'll obtain some impressive prevention results. 

The clusterbusters.com message board is a good place for strategizing with other busters if you haven't been over there already.