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.

jtale,

Welcome, you are indeed amongst friends. I've dealt with these for the worst part of 20 years, episodic not chronic.

I'm sure many will be coming on directly to ref. various links etc., plenty of information on the left side of this page as well.

Oxygen is my best abortive, and has been for years, and many of us share this.

The Beast reacts differently with all of us and what appears to work one cycle may fail on the next. Not at all uncommon. Neck pain, etc. can be experienced  and I too have had that in conjunction with my CH. I have not found stress to be a trigger personally.

Alcohol does seem to be a constant trigger amongst us, but does nothing to cause them when out of cycle. Strange beast indeed.

Read up on Batch's research on Anti-inflammatory regime, it listed the Meds, treatment and therapies section, under 123 days PF.... it seems to be showing promise. I'm out of cycle currently but I too am going to try this one.

Knowledge is your best weapon against the Beast, read and ask questions. Please relate your success and failures as well.

The forum is a very good resource, and I hope you can locate a Neurologist with experience in Cluster Headaches, they can be hard to come by but well worth it, should you find one.
All the best,

Baer   

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.

thanks a lot guys.   Yes ttnolan that is precisely what happens to me, spread from neck to scalp and upper shoulders.  And I have always been confused why stress is sometimes a trigger and sometimes not.  Thanks to you all I now understand that the primary force here is the CH, and the rest of the symptoms stem from that.  Knowing that makes it a lot less confusing and means I can concentrate on getting the right treatment.   

Something amazing i have just realised: when I finished university I was just beginning an CH period.   I celebrated at the beach for 3 weeks with some friends, and although drinking was sometimes causing headaches, in a way I felt it was preventing it from getting into its most intense phase.  I just kept drinking every day (I  was young!) and after a couple of weeks my cluster went, which was the quickest I have ever been able to get out of a cluster.      A few years down the track, at the end of a 4 month cluster, after being presented with a range of rather nasty drugs to take, which I was told had only minimal chance of working, I thought I would try using alcohol as ‘my therapy’ but it seemed that this time alcohol was bringing headaches on instantly.  I was confused! Until I read through this message board and read that magic mushrooms cured some people – and I realised that I had in fact had them on that holiday after finishing university, and that was exactly when my cluster finished! Hoorah!  So now I will be trying that as a treatment once I figure out how to get them.

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

The role of stress is a hard one to research although there is a long history, with the migraine folks, that it seems to be a trigger for them. I just haven't seen any complelling research with Cluster.

Well accepted that muscle tension is a spontaneous response to pain. Beyond that, I would not put too much attention on the subject.

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.

jtale,

The likely reason your CH went away after graduation while at the beach wasn't due to the drinking... but rather all the sun that helped build up your vitamin D3 levels. 

Vitamin D3 is the only "Free" vitamin as our skin generates it when exposed to the UVB in direct sunlight...  like it can generate as much as 10,000-15,000 I.U. in as little as 30 minutes at high noon in a swimsuit w/o sun block...

You might want to look at the anti-inflammatory regimen.  We're starting to gather some important data on this regimen...  For example, some of the CH'ers, chronic and active episodic, who were starting this regimen and who've gone in for a blood test of their 25-Hydroxyvitamin D, a.k.a. 25(OH)D, were deficient... 

Moreover, the CH'ers who also went in to have their 25(OH)D tested after being on this regimen for a few months, were found to be at the high end of the normal 100-200 nmol/L (40-80 ng/mL) reference range.

Aside from the running tally that's proving this regimen to be 75% or better effective in preventing CH, the direct relationship between a vitamin D3 deficiency and cluster headaches is unmistakable. 

Take care,

V/R, Batch

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

I'm going to try both the D3 supplements and also some psyclobin.

The suggested D3 dose is extremely high; i just brought 1000ui tablets, and from what I have read i should be taking 5000 to 10000ui per day.

Aussiebrian (or anyone), do you know a cheap source of  D3 supplements in Australia?

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

I read through this message board and read that magic mushrooms cured some people – and I realised that I had in fact had them on that holiday after finishing university, and that was exactly when my cluster finished!

Yep you're certainly not the only CH'er who has looked back and found a correlation between past psilocybin use and CH remission.  8-)

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.