Hi Isto,
Very interesting post. Yes alcohol and food containing
nitrates are known triggers for CH's,but not for all of us.
I know of at least two here that can enjoy sausage bacon
and eggs for breakfast and a beer a lunchtime with no
worry's. As for smoking the jury is still out on that one.
There is no concrete evidence that smoking is a trigger
for CH's you need to look further afield than google for
this one.

Hoppy.

   



A pilot study but, nevertheless, rare data on the link between CH and smoking.
========================
J Headache Pain. 2013 Jun 6;14(1):48. [Epub ahead of print]
Impact of continuing or quitting smoking on episodic cluster headache: a pilot survey.
Ferrari A, Zappaterra M, Righi F, Ciccarese M, Tiraferri I, Pini LA, Guerzoni S, Cainazzo MM.
Abstract
BACKGROUND: The majority of patients suffering from cluster headache (CH) are smokers and it has been suggested that smoking may trigger the development of CH. The aim of this pilot survey was to describe: 1. the differences between current, former, and never smokers CH patients; 2. if smoking changed during an active cluster period; 3. if CH changed after quitting.

METHODS: All outpatients with episodic CH according to the criteria of ICHD-II who were consecutively seen for the first time from October 2010 to April 2012 at a headache centre were interviewed by phone using a specifically prepared questionnaire. Statistical differences between continuous variables were analysed by the Student's t-test or the one-way analysis of variance (ANOVA), followed by Newman-Keuls post-hoc testing. Comparisons between percentages were made using the Chi-square test or Fisher's exact test. All data were expressed as the mean +/- standard deviation (SD).

RESULTS: Among a total of 200 patients surveyed (172 males, 28 females; mean age +/- SD: 48.41 +/- 12 years) there were 60%, 21%, and 19% of current, former, and never smokers, respectively. Current smokers reported longer active periods (12.38 +/- 10 weeks) and a higher maximum number of attacks per day (3.38 +/- 1) compared to never smoker CH patients (5.68 +/- 4 weeks, P <0.05 and 2.47 +/- 1, P <0.05, respectively). During the active period most of the patients stated to decrease (45.7%) or not to change (45.7%) the number of cigarettes smoked. Among those who decreased smoking, most (83.8%) reported that they had less desire to smoke. After quitting, the majority of former smokers stated that their headache had not changed.

CONCLUSIONS: PATIENTS WITH EPISODIC CH WHO ARE ALSO SMOKERS APPEAR TO HAVE A MORE SEVERE FORM OF THE DISORDER. HOWEVER, IT IS UNLIKELY THAT BETWEEN CH AND SMOKING THERE IS A CAUSAL RELATIONSHIP, AS CH PATIENTS RARELY IMPROVE QUITTING SMOKING.

PMID:23742010[PubMed]






   

Hi Bob,
And that's the mystery of CH's.

Hoppy.

Isto, are you finnish by any chance ?

I have been sure for quite some time that acetaldehyde plays a major role in my cluster headaches. I made myself pain free (Thanks Clusterbusters) and have successfully stayed this way for over 3 years now. I was chronic prior and 25 years total. Every time I get problems I think the direct cause is acetaldehyde (usually smoking normal cigarettes, no problems with e-cigarettes). I have had this theory for 3 years since I became pain free but now I am virtually sure in my case it is the acetaldehyde.

EDIT: Yeppers, we have f**ked up hypos. It all begins in the hypothalamus. But I can start things going bad by myself with just about anything involving acetaldehyde.

CH is a complex disorder. For many years it was known to "have something to do with histamine", until it was realized histamine secretion is only a single side effect. For many years it was known to have something to do with smoking and alcohol consumption, and speculated to be an outcome of substance abuse, until it was realized even babies may suffer from it. 

Today it is known to have "something to do" with many substances and processes - Nitric Oxide and CGRP, hormones and neurotransmitters, circadian rhythm and hypothalamus, autonomic nervous system as well as the trigeminal nerve and now also the vagus nerve etc. etc. Also, you have therapies that are very effective for some and useless for others. You have things that are strong triggers for some and have no effect on others.

So it is safe to say CH may have something to do with anything. If you're a CHer with back issues than your triggers, symptoms and treatments may differ from a CHer with stomach issues or a hormonal imbalance or a certain nutrient deficiency, and so on. For every one of us, CH may have something to do with different things.

I think getting too much acetaldehyde certainly does not require smoking or alcohol. Diet and living conditions are enough, and any stomach issues maximize this. The more I read about it now the better I brush my teeth 

There seems to be plans to make academic stydy about this (The Efficacy of L-cysteine in Prevention of Cluster Headache).  It seems that this will be paid by Biohit Oy (small private company).  Similar stydy seems to be starting also related to migrane...

You can find information about this via google "The Efficacy of L-cysteine in Prevention of Cluster Headache."

While waiting for some years results from this "A double-blind, randomized placebo-controlled multi-centre trial", please enjoy 41 pages of interesting text (+ lots of references).

The clinical trial of Acetium for CH

(Even though I have well over 1,000 posts at CB.com, I don't have enough here to include a link/URL.  So I'll post the main part of the announcement/press release, and I guess you can google key phrases if you want to know more. This is just info -- I have no axe to grind here.)
>>Biohit Oyj Stock Exchange Release April 29, 2014 at 4:30 pm local time (EEST)

Biohit Oyj initiates two clinical trials for prevention of migraine-type headache attacks, testing the efficacy of Acetium® capsule in novel clinical indications. The purpose of the trial is to assess the effect of Acetium® capsule in prevention of headache attacks   among patients suffering from migraine or cluster/Horton headache. Both studies will be conducted as multi-center clinical trials in collaboration with Terveystalo Oy and Aava Medical Center altogether in six cities in Finland.

The study hypothesis is based on the fact that acetaldehyde liberates histamine from the mast cells which are ubiquitous in all human tissues.  Histamine in turn is a well-known trigger of the acute attacks of vascular-type headaches (migraine, cluster).  By preventing the local effects of acetaldehyde with Acetium® capsules, it might be possible to prevent the headache attacks in these two categories of patients.

Both studies will be conducted as placebo-controlled, double-blind clinical trials, where half of the subjects will receive the active compound and the other half will receive a placebo.

    Acetium® capsule in prevention of headache attacks among patients with cluster headache:
    altogether, 100 subjects with clinically diagnosed cluster headache will be enrolled in the study. <<

I find this topic super interesting...I am very interested in the results of the study CHfather is referring to.

My main question is we know Isto claims to have good results with Acetium....who else has tried this and think they have missed a cycle.

I will say if you are episodic and don't have headaches for 2 years or so that does not mean you are cured. I went 2 1/2 years without CH only to just have it come back currently.

To acetaldehyde or not to acetaldehyde? That is the question. Just kidding....I just wanted to see if I could spell it correctly.
There could very well be a connection between the stomach and clusters. I don't know but will wait and see what the studies tell us. I'm certainly not going to dismiss it just because it was posted by a newbie.
The subject of clusters and the worms and germs in the gut was on the site years ago but not much came of it.

gee, very interesting !
  also shows we should all temper our replies at times.
while not related, directly, batch also delves into our ph levels !  and has often written of the benefits of doing so in order to absorb parts of the regime...

I personally believe, that everyone is different and that ch effects people differently. There are some here that have gone completely pain free with the regime, others that it improves there symptoms dramatically, but doesn't get them to a complete state of being pain free. The body is such a complex organ, I mean, some of the threads that Batch puts up, showing how each part of the regime effects other parts , regarding absorption and at a gene level, to me, is quite amazing. As with this topic, again, at a completely different level, but may also be connected.
That's why we have great minds like Batch and Co to make sense of it all  LOL, but  somewhere amongst it all im sure is that " magic bullet"  well, heres hoping anyways !
I say, keep the discussions and potential idea's flowing, that's whats needed !
regards
colin

Our CH patient community in Finland is working with Biohit with this. Yes, it's very interesting to have actual research done about the subject. I have to add, the compiled information sheet about cluster headaches done by Biohit for this research was one of the best "information packages" about cluster headaches I have read. To me, this at least to some extent adds the role of our intestines in cluster headaches.

An update:

I'm still in cycle but almost PF. In the last 8 days I had 3 minor attacks, which is 1/5 of what I had before I started the L-Cysteine. My response to known triggers is notably reduced. I still have shadows from time to time but not as much.

As far as I can tell, it's the combination of the D3 regimen and the L-cysteine (and B complex) that is responsible for the change. I urge you to try that.