Hi,

I've had episodic CH syndrome for 19 years.  I know this approach I am about to suggest has not worked with many, but I'd like to suggest you try this if you have not.

Since I've completely eliminated all sources of caffeine, I have not had a CH in four years.  That's ALL sources: coffee, chocolate, soft drinks, tea, decaf coffee, decaf tea (decaf coffee & tea still have some caffeine)...  I don't smoke, but nicotine is similar to caffeine, and that would have to go too.

In retrospect, my CH's started at around 20 years old when I started drinking coffee.  My worst cycle was a period of time when I was gulping down huge Starbuck's mochas daily.  There have been times when a CH attack came on right after drinking an afternoon coffee.  But mostly the correlation has been between strength of habit and strength of the episode.

I know that many will consider this a coincidence.  Many will also explain that they've tried eliminating caffeine, and it didn't help.  But I suggest trying this for a few months if you have never.

Caffeine is often used to abort CH's.  But I postulate that this is because it is satisfying a caffeine addiction.  My suggestion is to try breaking off the addiction in the first place.

One of the more difficult aspects of CH is firmly establishing cause and effect. Determining primary and secondary triggers, trying to decide when a life style change has caused the postive or negative  change in our cycles........100 years from now we'll laugh at a lot of our current thought processes, and slap our foreheads thinking damn it was right in front of us.

If a significant lifestyle change has resulted in a reduction...or even elimination of your headaches, then stick with it. Hoping it lasts!

Joe

I HAVE been busily looking at the overall use of caffeine in this nation. Perhaps 90% of the Americans use caffeine --in some form-- regularly. The bottom line is how many CH people use CAFFEINE? How many around here USE IT? Then we can make an informal study.

I, for one, read labels like a buzzard. Dave is right that so-called decaf has traces of caffeine. It is in mints and fancy drinks. Over-the-counter drugs like Excedrin have it. Now they are putting it in shampoo and soap. The Journal of Addiction links it to anxiety disorders and other stresses that can be mistaken for something else.

Perhaps we are types that are caffeine sensitive. I don't believe we a just biological robots, garbage in/garbage out, and we have other, psychological/emotional/spiritual things interplaying upon us. But why not take a clear-eyed look at caffeine as a substance issue?

I found that even the yerba mate (and guarana)  that I was using has caffeine in it. Is there anyone out there that doesn't use caffeine who began CH?

That is a very good point Cass.  Never thought of it like that.

I guess you can think of it kind of like nicotine.  Nicotine is a vasoconstrictor, but it also affects the body negatively.

AlienSpaceGuy wrote on Apr 14^th, 2009 at 4:17pm:

Certain genetic factors make people over-sensitive “nerve cell excitation”
to the effects of stimulants. Sugar would be the first thing I would look at when it is a child age 3.

Even if it is not a genetic factor, nerve damage could result in the same type of sensitivity to stimulates.

MAO enzyme helps break down serotonin. It is proper to breakdown compounds in the body, in order to help recycle or eliminate them. You do not want to over stimulate the breakdown the compound serotonin. If you over stimulate MAO it will lead to the inefficient and improper breakdown of serotonin. Certain foods can over stimulate MAO,  aged cheese, aged wine, smoked fish, and nutmeg are just a few. Adrenaline hormones can also stimulate MAO. Caffeine, Nicotine, Alcohol, and Sugar can cause fluctuating levels of blood sugar, stress and other factors that stimulate adrenaline, which can then stimulate MAO. MAO can be highly stimulated by certain foods and stress, which result in breaking down serotonin levels rapidly. If you want to conserve serotonin, you need to attempt to control the over production of MAO.

I asked what planet you were from because you are the AlienSpaceGuy........

As we used to say in Milwaukee, when drinking was the in thing, "Ah just take some hair of the dog that bit you, you'll be all all right." (I lived in Milwaukee FORTY years --West Division '62) That meant we would wake up with a hangover and go get some more alcohol to settle our nerves and stomach. Looking back, I don't think it was much of a solution, but it helped.

I wonder if this dosing with massive amounts of caffeine is only a temporary solution, much like the one we kids used then. And caffeine and sugar --and their resulting lack of sleep-- are everywhere. And all I can testify is that, this spring, I had only a few days of hits. Two years ago, when I was using caffeine heavily, they came on by the hundreds over a couple or months. I did have a few "shadows" but nothing much else recently. THANK YOU GOD!!!
Yours, Daniel R Peterson

Yes, a simple cause-and-effect view is usually misleading (even if the only response we have due to a lack of knowledge). "Correlation is not causation"--the old saw in science.
======================
Interesting to note that he is saying that the primary mode of action is NOT as a vasoconstrictor but on its effect on the central nervous system. Doesn't change our appreciation of this class of meds but suggests we need to change how we think about the nature of CH.
==============================
Handb Exp Pharmacol. 2007;(177):129-43.   


Serotonin receptor ligands: treatments of acute migraine and cluster headache.

Goadsby PJ.

Institute of Neurology, Queen Square, London WC1N 3BG, UK. peterg@ion.ucl.ac.uk

Fuelled by the development of the serotonin 5-HT(1B/1D) receptor agonists, the triptans, the last 15 years has seen an explosion of interest in the treatment of acute migraine and cluster headache. Sumatriptan was the first of these agonists, and it launched a wave of therapeutic advances. These medicines are effective and safe. Triptans were developed as cranial vasoconstrictors to mimic the desirable effects of serotonin, while avoiding its side-effects. IT HAS SUBSEQUENTLY BEEN SHOWN THAT THE TRIPTANS' MAJOR ACTION IS NEURONAL, WITH BOTH PERIPHERAL AND CENTRAL TRIGEMINAL INHIBITORY EFFECTS, AS WELL AS ACTIONS IN THE THALAMUS AND AT CENTRAL MODULATORY SITES, SUCH AS THE PERIAQUEDUCTAL GREY MATTER. Further refinements may be possible as the 5-HT(1D) and 5-HT(1F) receptor agonists are explored. Serotonin receptor pharmacology has contributed much to the better management of patients with primary headache disorders.

PMID: 17087122 [PubMed]

Well, back to the drawing board on this one....although ONLY two people say they have good results not using caffeine and two show no results not using caffeine. How about some more people fessing up on their personal caffeine use?

I also notice that the way of us Westerners is to throw money (and drugs) on a problem in order to solve it. The Buddhist way might be to become unattached to something --overachievement, sleepless nights, expectations, one-upmanship, the stresses-- to uncover the blockage of the Chi.

My three cycles have come around April, the last one being the lightest. Perhaps there is something in my psychology that is most troubling in the early spring, around my birthday, during my spring fever of sexuality. Another thing I get much more of, and it doesn't cost a farthing, is my sleep. And I guard against troubling images that invade sleep time.

GOOD Dreams to all and a good night, Daniel R Peterson

Now one can even get a shot of caffeine into the IV before and/or after going in for surgery (when one has to fast completely). $10 or $15 for a good dose of caffeine in order to stave off the withdrawal headache that accompanies the fast.

As you might have guessed, insurance does not cover the cost.

im not sue if caffeine is any way responsible for headaches or the intensity. I allso no that its not good for the body along with smoking, fatty foods, red meat etc etc etc but what i do know is that if id didn´t drink my coffee the shadows would have me in a new white coat climbing the walls in a padded cell. Having said that ive heard of the types of meds people are using and different ways of dealing with this pain and im thinking of all the side effects from the different meds why are we worried about caffeine? at the end of the day this is a condition wich sends us into a world of pain and we will do nearly anything to relieve our suffering regardless of side effects (kill the pain now and ill deal with the side effects later)

im a coffee drinker, i smoke, eat red meat, drink like a fish (out of cycle) make love like a t-rex on heat and make the most of life when im not in pain.
mark (t-rex ROOOOAR)

McGee wrote on May 6^th, 2009 at 11:44am:


Bet you can't "spank the monkey" with those wee puny arms though..

Lefty...!

I think this may have gone slightly off track  , but just to add to the original posts. I didn't drink coffee or coke really before my CH started. I wasn't a caffeine addict by any means. I'm sure I came across it in my normal diet - odd choc bars etc, but not to the extent that I would suffer withdrawal if I went without.

Caffeine is now one of my main abortives. I never drink energy drinks other than to abort a hit and I now very rarely have coffee (only since discovering Vietnamese coffee with condensed milk on my honeymoon 2 months ago) when not having a hit. But it's taken a while to break the association of coffee with CH to be able to enjoy it.

Just adding my .

Em
x