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.

I agree and assent, concur in accord, even overlap with an underwrite. That is to say that I have become quite suspicious of caffeine...
Being a health food guy, I didn't use any of the typical ways that people fire up with caffeine, like soda pop. I AM  also remarkably strong and healthy. But after I got off alcohol I did start to use STRONG black --without sugar-- coffee (and work hard with only a few hours of sleep). NOW that I have ended coffee three years, I AM getting milder and milder CH. COINCIDENCE?
Daniel R Peterson

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 am happy that something has worked for you.

 
Quote:

Caffeine is often used to abort CH's.

And the reason for that is because caffeine is a vasoconstrictor which is exactly what we need when we're getting hit.   It is what Imitrex does to abort....constricts.  And cold packs to the head...

On the other end of the spectrum of course is alcohol or Pot which is a vasodialator and a major trigger!!!!!!


Quote:

Caffeine is often used to abort CH's.  But I postulate that this is because it is satisfying a caffeine addiction.

So if I am reading you right, then those of us who CAN abort...uh...aren't really aborting the headache?  It's just our addiction to caffeine and all in our mind?  

I would really like to hear more of your views on this because I am not getting it at all.   Caffeine is a vasocontrictor.   No one can deny this,  as it is a fact.

Linda

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?

Linda_Howell wrote on Apr 12^th, 2009 at 10:05pm:

I am happy that something has worked for you.   Quote: Caffeine is often used to abort CH's. And the reason for that is because caffeine is a vasoconstrictor which is exactly what we need when we're getting hit.   It is what Imitrex does to abort....constricts.  And cold packs to the head... On the other end of the spectrum of course is alcohol or Pot which is a vasodialator and a major trigger!!!!!! [quote]Caffeine is often used to abort CH's.  But I postulate that this is because it is satisfying a caffeine addiction.

So if I am reading you right, then those of us who CAN abort...uh...aren't really aborting the headache?  It's just our addiction to caffeine and all in our mind?  

I would really like to hear more of your views on this because I am not getting it at all.   Caffeine is a vasocontrictor.   No one can deny this,  as it is a fact.

Linda
[/quote]

Coffee, any caffeine  does help Ch when it is happening, but it stimulates the adrenals and effects the endocrine system in a negative way including the hypothalamus.

Cassie

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.

Quote:

Is there anyone out there that doesn't use caffeine who began CH?

I doubt that Helen's son Jasper was a heavy coffee drinker before he started CH at the age of 3.    ::)


                 [smiley=smokin.gif]

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

Quote: Is there anyone out there that doesn't use caffeine who began CH? I doubt that Helen's son Jasper was a heavy coffee drinker before he started CH at the age of 3.    ::)                  [smiley=smokin.gif] Sugar is a big stimulant, what planet are you from?  :D

cassie wrote on Apr 14^th, 2009 at 4:18pm:

Sugar is a big stimulant, what planet are you from?  :D

I beg your pardon, what is the meaning of this remark?

I think it doesn't help at all with the discussion about caffeine.


                 [smiley=moon.gif]

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........ 8-)

before all this started in '00 i never was a fan of caffine. And it doesnt always help, but sometimes it does, and that is all i can ask for at this point! When you are in pain you do what helps, right?

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

I don't think it's as black and white as "vasodilators are bad and vasoconstrictors are good for us."

Verapamil is a vasodilator. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Yet it somehow helps CH.... (Not saying ALL vasodilators help, just this one.) Heat is a vasodilator, yet some people find relief from a hot shower. These are only two examples, I won't even get into the BAD vasoconstrictors...

I wouldn't rule caffiene out just because it's a vasoconstrictor. I'd imagine someone overly sensitive to it could have hell with it. Every persons body is different. I'd also be willing to bed that someone that sensitive to caffiene might have rebounds due to it.

PFDAN
Mystina

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]

Disclaimer: I'm new to the CH world but I wanted to drop my 2 cents:

I have been suspicious of caffeine because I remember reading a while back that prolonged use causes rebound headaches.

Having said that, I never consume caffeine. I never drink coffee. Never drink sodas. Don't each chocolates. And I've had this lifestyle way before any headaches occured. And yet the beast still attacked me FULL FORCE out of nowhere. So I would be wary implying causation = correlation

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

Maybe it is an addiction, maybe its bad now, but I know that if I dont have my coffee, and massive amounts of caffiene,  I feel way worse .  That is a great way to bring on a nice morning slammer,  skip the coffee...  Mayb ewe all need a rehab center.  We could all detox off of meds, caffiene, noise, other people, televison, certain foods, alchohol, modern life, smoking
Barbara has a farm, why dont we all move in for a while,  Oh it would get ugly for a while, while we are all detoxing,  some would succumb to their addictions, some would be murdered by the other cranky people going through withdrawl,   but the survivors,  maybe, just maybe, they would exit CH free, and live life pain free from then on.  Sounds like paradise,
You dont mind Barbara, do you?

Oh and have Bob bring enough shrooms for all of us.

ha
chris

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.

Pixie-elf wrote on Apr 23^rd, 2009 at 3:34am:

I don't think it's as black and white as "vasodilators are bad and vasoconstrictors are good for us." Verapamil is a vasodilator. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Yet it somehow helps CH.... PFDAN Mystina

Yes, you are right about that.  Kudzu is also a vasodilator, as is taurine.

The research on caffeine and migraines shows a correlation between increased caffeine and headaches ... and most researchers do think that increased intake of caffeine puts some people into the migraine zone, even if caffeine in the short run helps with notching down migraine pain.  

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) [smiley=smokin.gif]

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

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) [smiley=smokin.gif]

Dude,

Too much information.

Are you trying to poke out my mind's eye?

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

Quote: make love like a t-rex on heat and make the most of life when im not in pain. mark (t-rex ROOOOAR) [smiley=smokin.gif]

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

Lefty...!

true lefty oh so true very frustrating but to make up for the small arms ive got one hell of a tail  [smiley=crackup.gif]

mark (got the perfect excuse when not in the mood "sorry dear ive got a headache :-?)

I think this may have gone slightly off track  :D, 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 [smiley=twocents.gif].

Em
x

Back to the drawing boards again for me. After a week of calm, using rhodiola and kudzu (I just pop em open and eat them raw) with plenty of GOOD water, I got another flare up of CH. And of course I haven't touched caffeine in this time period.

The only other distinctly different thing I do with the CH "beast" is not to lay on it the enemy image. I use the Ho'oponopono (Hawaiian peace ceremony) way: I cradle my head and say, "I love you. I am sorry. Please forgive me. Thank you.")

I caught a cold during that week and my breathing ability was hampered. That, along with some sleep apnea problems I have had, may have exacerbated my CH which usually ends in May. When I got up this morning I did some deep breathing exercises and there has been no hits yet today. Is it really that important we plug into a O2 machine? How about just a good morning constitutional deep breathing system?

danielpeterson wrote on May 11^th, 2009 at 10:30am:

Back to the drawing boards again for me. After a week of calm, using rhodiola and kudzu (I just pop em open and eat them raw) with plenty of GOOD water, I got another flare up of CH. And of course I haven't touched caffeine in this time period. The only other distinctly different thing I do with the CH "beast" is not to lay on it the enemy image. I use the Ho'oponopono (Hawaiian peace ceremony) way: I cradle my head and say, "I love you. I am sorry. Please forgive me. Thank you.") I caught a cold during that week and my breathing ability was hampered. That, along with some sleep apnea problems I have had, may have exacerbated my CH which usually ends in May. When I got up this morning I did some deep breathing exercises and there has been no hits yet today. Is it really that important we plug into a O2 machine? How about just a good morning constitutional deep breathing system?

So a big dump and deep breathing is the answer to our affliction?  I say keep huffin the oxygen.

            Potter

I've had varying degrees of success with relaxation techniques, they reduce a lot of the secondary damage I do fighting against the beast, and a smattering degree of success with life style changes to reduce hits while on cycle.

That being said, pure oxygen aborts over 90% of my attacks in 6-8 minutes. I admire your attempts at natural treatments but would strongly encourage you to give the 02 a shot. It's as close to totally natural as we have and is enjoying a tremendous success rate.

Hoping you're nearing the end of this cycle.

joe