Read any Migraine blog that has ever mentioned caffeine, and you’re likely to come across comments from Barry Spencer. Spencer’s own web site is CaffeineAndMigraine.com — “Caffeine and Migraine is a book that explores the relationship between the most popular neuroactive drug and the most prevalent neurological malady.” Bloggers report that Spencer is a major PIA; that some of them have started moderating all comments to their blogs because of his persistence in repeatedly posting inane comments about his unproven and absurd theory.
If you try telling Spencer that you’ve rid yourself of caffeine, his reply is inevitably along the lines of this statement from his site, “Certainly many migraine patients report using no caffeine, yet there is no demonstrated example of migraine absent caffeine use.” What? Are you freakin’ kidding me? This person says no Migraine been demonstrated with out caffeine use? Yeah, right. And the earth is still flat.
To those who disagree with him, he’s likely to say, “My theory that caffeine causes all primary headache is currently the best available explanation for observations. The burden of falsifying my theory falls to headache researchers, who possess the training and access to funding and facilities needed.” Again, yeah, right. He thumbs his nose at all the legitimate research and tells legit researchers to DISprove his theory because he doesn’t have the training, funding, or facilities to prove it. Well, duh. If his theory were so valid, someone else would have proven it by now.
People who are passionate are great. People who are obsessive can be ok, too, but Spencer is beyond even that. I’ve seen discussions where he got aggressive and nasty. Mister, if you have a legit theory, it doesn’t take that to get it recognized.
Best,
Arabella
Hi Arabella,
Saw your blog mentioned in Teri’s feed.
Good going. Keep busting them. If you need more leads, I have “snake oil” category on my site, you are welcome to any bits you find there.
Cheers,
Rain
Cheering you on, Arabella! I’ve been trolled by Barry too, trying to do some legitimate exploration of caffeine’s effect on Migraines. Caffeine is a Migraine trigger for some, can ease Migraine for some, and caffeine withdrawal can be a Migraine trigger as well. I had a great aha! moment when discovering for myself that if I had coffee at 7 every weekday and slept until 9 on weekends, I might be waking up in a state of caffeine withdrawal, setting myself up for a Migraine. Blogging about it, with some great references to Dr. Robert Lipton, I got visited by good old Barry and got to encounter his theories. Oh me oh my. One size fits all explanations are always a problem, in every realm of life! Thanks again for the great blog. I’ve added you to my blog-roll.
Am enjoying your blog ~read about it on healthcentral.com.
This ‘Caffeine is deadly’ issue really gets my goat. (Guess I should quit leaving her out in the front yard!) I am sick AND tired of having experts (genuine or self-titled) pontificate that caffeine is a major trigger for migraines & I must eliminate everything that contains caffeine. Well, I’m one who is HELPED by caffeine. Good, strong, NooAwlins melt-the-spoon coffee is one of my BEST helpers. I’ve done the ‘leave-it-out-&-see-what-happens’ test for periods as long as 2 weeks. The only result was WORSE migraines.
After years of experiments, I have not found even ONE dietary trigger for the migraines I’ve had since age 10. But 2 alleged ‘always for everyone’ triggers actually help alleviate some of my symptoms ~ coffee & sharp Cheddar.
My main trigger is strong light. I have to spend much of my time indoors with the shade drawn & an eye patch on the affected eye (or bedridden totally cover-blinded! For me, an overcast day is cause for celebration!
Why do most doctors & other experts insist on putting all of us in a box? Thank God my neurologist believes that ‘each patient & their migraines is different ~ requiring case-specific treatment.’ I decided she was a winner on my first visit when she told me that neurology ‘is not an exact science’ and that she ‘always believes the patient’ when I sought her help with traumatic brain injury problems that had been called ‘rebound headache’ by another MD.
My migraines are much worse since brain injury (2001). Because I developed kidney problems & glaucoma, I cannot take NSAIDs & meds usually prescribed for migraine. I’ll be watching your blog for suggestions I can try, but being on SS Disability, I can’t afford such wonders as acupuncture.
Caffeine is responsible for ALL primary headaches? Then why do they call tension headaches..”tension”..could it be….now wait its coming to me….TENSION and stress?
Picture me giving him a big raspberry.
Arabella,
Can you cite one demonstrated example of migraine absent caffeine use? If you can’t, then you must concede my point that there is no demonstrated example of migraine absent caffeine use.
The flip side of disproving my theory is proving the prevailing assumption that there are other causes of migraine besides caffeine. In other words: headache researchers should test the assumptions their view depends on. Currently they assume migraine can occur absent caffeine use. In order to support the prevailing view with demonstrated evidence, they must produce at least one example of migraine occurring in a patient whose caffeine abstinence has been verified by objective testing.
What’s needed is a trial study in which migraine patients are instructed to wean themselves from caffeine, their compliance verified by saliva testing. I’ve got funding in hand for this study and hope to complete it next year.
This isn’t snake oil; I’m not selling anything. Caffeine abstinence isn’t a product that can be sold at a profit. Which probably explains why headache researchers, funded primarily by drug companies, aren’t interested in determining whether caffeine abstinence might be an effective treatment for migraine.
Mr. Spencer,
This is your one and only comment to be published to this blog. I’ve seen your comments on other blogs, so let me tell you right now that I’m not as nice as those bloggers who have let you repeatedly comment and have even tried to have conversations.
No matter what I say about a demonstrated case of Migraine absent caffeine use, you will reply with your typical reply about unrecognized sources of caffeine. That’s what you always do.
And don’t give me your BS about it being everyone else’s job to disprove your theory. Put up or shut up.
So, enjoy your one published comment here. I don’t care what you think of or say about me, and you are not welcome to comment here again.
Arabellla
Dear Mr. Spencer,
I want to thank you for changing my life. I found your website about caffeine causing migraines, and decided to take you up on it. I wouldn’t have been willing to try it, if you said “it could possibly help.”
I already knew it could possibly help, but the withdrawal would be murderous, and I would never have gone through it for a possibility. After all, I’ve been trying for thirty years to figure this thing out, and most everything has been a dead end.
I quit caffeine three weeks ago, and this week, for the first time in thirty years, I have been completely headache free. No migraines, no tension headache, no nothing. For me, this is a miracle. I will never go back to caffeine use, ever.
But I must say that I don’t agree with you that caffeine withdrawal is the only reason for migraine headache. And here’s why:
Because some people are telling you that they do not use caffeine in any form–haven’t for years, or never have–and they still have migraines.
Do you really think they are accidentally using caffeine without knowing it? Migraineurs are famous for their label-reading skills. For example, most of them know 12 different names for MSG.
So, are they lying? Why would they lie? They’re suffering terribly, and they’re not playing games. They want to see what life could be like without this terrible pain. They’re willing to live without all kinds of things that trigger it.
I can see by your website that you’re a logical person with a scientific mind. But here’s where you fail: You say that, since it’s never been scientifically proven that migraine occurs outside of caffeine withdrawal, then it doesn’t.
This is simply not logical. For thousands of years, no one had proven that the earth was round, but that didn’t make it flat.
I commend you for your passion, but if your goal is really to help people who are suffering from migraine, then you must place more trust in those you are trying to help.
I wish you well. As for me, I’m starting my life over at 49. These have been the best three weeks of my life.
Thank you,
Michele
(And thank you, Arabella, for bringing this up. I wanted to post this at Mr. Spencer’s site, but doubted he would allow it, since it questions his beliefs.)
Thank you, Arabella, for a great migraine site. There’s so much misinformation out there, it’s maddening.
I sent my above letter to Mr. Spencer, and received a thoughtful reply. In part,
“I do not argue that because migraine absent caffeine use has never been demonstrated, therefore migraine MUST (caps mine) not occur absent caffeine use. Rather, I argue that because migraine absent caffeine use has never been demonstrated, therefore it MAY be migraine cannot occur absent caffeine use. My conclusion, with a ‘may’ in it, is logically sound.”
And this good point:
“Even a 15 percent ‘cure’ rate would mean caffeine abstinence would be an effective migraine treatment for millions of people.
Having had migraines for over forty years, and nearly daily migraine for thirty of that, believe me, I’m as skeptical of migraine “cures” as any of you. Too many dead ends, too many “experts” talking out of their asses.
All I can do is tell the truth about my own life.
Last year, according to my Walgreen’s printout, I bought a grand total of 162 Imitrex 100 mg. tablets. That’s an Imitrex every two to two and a half days. And there were a lot of days in there that I remember needing an Imitrex and I was out.
I had a migraine, or a migraine trying to happen, nearly every day of 2008. I quit caffeine three weeks ago, and after the third day, no more migraine. Headache, yes, but no pain in my right eye, no nausea. Just throughout the day a tension-type headache that would come and go. And then, after the first week, no headache whatsoever.
So, I snitched a piece of bacon, to see if I could eat it without migraine. Nope. Had to take the Imitrex. Went another week without migraine, and ate a little mac and cheese. Nope. Had to take another Imitrex.
Other than that, no migraine meds for over two and a half weeks, now. Kicking the caffeine, for me, was the solution I’ve been hunting for for over thirty years.
Of course, I am still avoiding triggers–chocolate, cheese, sodium nitrate, MSG, perfume. But I did that for years, and still had almost daily migraine. Now, avoiding triggers WORKS.
Citrus has been a trigger for me. Now I seem to be able to have it, every few days. Same with nuts and grape juice. Hey, I’m only three weeks into this, so I’m still experimenting.
Some of you have already tried giving up caffeine, and it didn’t work for you. But I’m writing this to encourage anyone who’s thinking about giving it a try. There’s a site, Starling Fitness, with a forum about “how to quit soda.” I found that very helpful.
Seriously, considering all the “cures” and treatments you’ve probably tried, why not give this one a try? It doesn’t cost a penny. In fact, if it works, it’ll save you money.
Last year, I spent–after insurance–$1,679.73 on Imitrex. I spent nearly $400 on Pepsi and Jolt gum and Excedrin. I’m looking forward to having an extra 2 grand to spend on landscaping this year. And having the good health to go out and work and enjoy the great outdoors.
This is such a no-bullshit site. Surely, there are people here who’d be interested in trying caffeine abstinence, and reporting back their positive and negative results, for the benefit of others.
Again, I can’t believe that caffeine is the only reason for migraine. But I do now believe that caffeine could be the complete answer for some people, and a partial solution for many more.
I’m so interested in hearing other people’s experiences with this idea. I’m sorry, but I’m just positively giddy these days, thinking that I may have found my solution. And I hope that, by sharing my story, I may help someone else feel this good.
I hope, especially, that no one who could benefit from caffeine abstinence will let their irritation with Mr. Spencer keep them from giving this an honest try. It’s hard, but it’s simple. And for me, it’s a miracle.
Kind regards,
Michele
Michele,
No one is arguing that dropping caffeine might be good for some migraineurs. It’s all about controlling your triggers.
What this is about is Spencer’s unproven theory that ALL of us suffer from migraine because we take caffeine in one form or another, some knowing it, some not, and the fact that he pushes it down everyone’s throats.
“15% cure rate?” Even so? Either caffeine absolutely causes migraine, or it DOESN’T. Abstaining from caffeine, with his point of view, means NO MORE MIGRAINES for anyone, considering he believes that abstinence is a cure-all. So, it’s just another point he’s confusing on himself, which means that his information should be taken with a grain of salt.
Even the structure of his theories make no sense. One can simply put up a website and say that abstaining from caffeine can help many migraineurs, without going into backwards and unproven theory about how, which only ends up dissolving into pretentious, confused self-preening after a while. Spencer is like everyone else out there who thinks he knows everything about how to cure your ills, and he is going to yell as loudly about it as he can without actually getting up to do anything about it.
I’m waiting for the day when people like him can answer my questions: Why is it that many boys end up without migraine after puberty? What is it about menopause that helps some women by relieving migraine and makes it come on for others? What about menstrual migraines and migraines during pregnancy? Surely these are not triggered by caffeine! Yet no one, including Spencer, can answer any of these things.
Considering he talks about caffeine being the “cause” of migraine rather than a trigger event, should also sound the alarm bells. The “cause” of migraine is still widely theorized but it’s been narrowed down to nervous system disorder that is wildly sensitive to outside stimuli. Encountering a trigger can set off a chemical chain reaction that affects nerves and blood vessel impulses alike. Therefore, caffeine is not a cause of migraine like he wants everyone to believe. That theory’s been shot down and moved past by now by people who actually know what they are talking about, and who understand they way our bodies work as much as they can at the present with today’s technologies.
If you can cut out caffeine and suffer less because of it, I say try! But trust me, there are days I have none and others where I have a lot and some days in between…And I have a migraine everyday…Some that happen as soon as one has been aborted. And I went years without caffeine because it contributed to my one and only panic attack when I was 14. Doc said no more caffeine, and I adhered to it. Yet, mysteriously, my auras intensified over those years and I began to go through migraine pain…the likes of which could be resolved, back then, with a nice, cold 20 ozs of Dr. Pepper….
Caffeine seems to make absolutely no difference to the frequency or intensity of my migraine attacks. The only connection is that lack of sleep is one of my triggers, and caffeine can and does disrupt my sleep.
During different periods of my life I have consumed a large amount of caffeine, no caffeine at all, and a very moderate amount of caffeine. It makes absolutely no difference. In fact, I think I feel better with a moderate caffeine intake.
Other triggers that I have no proven to myself are peanuts and other legumes, bright lights, loud noises, changes in atmospheric pressure, and insufficient hydration.
Caffeine is purely and simply NOT the only migraine trigger and NOT a trigger for everybody.
Comment deleted.
Mr. Spencer,
Does the saying, “too little, too late,” mean anything to you? There was a time when you were welcome to comment here. However, every time you did so, you were argumentative, and disrespectful. Rather than giving direct answers to questions to you and about your site and theories, you chose to be disingenuous, often attacking the people asking the questions.
You are no longer welcome to comment here. You were told on November 30, 2008, that no further comments would be accepted from you.
Now, go away.
Arabella
Arabella, let’s you and I have a free and uncensored online debate about migraine.
— Barry
No, thanks, Barry. It’s not worth the time. You’ve made your conclusions and have decided that you know more than even researchers who have dedicated their entire careers to research. Your past comments have shown that you have no respect for anyone else’s opinion or point of view. I choose not to subject myself or my readers to what would undoubtedly end up being useless and frustrating to all.
Arabella