LETTERS
The author welcomes your questions, comments, and corrections.
4 December 2006
Barry —
Here is my story:
I was a heavy caffeine user from since I was about 15 years old (I am 40 now). I drank 2-3 cups of coffee a day until about five years ago. I cut back because it was bothering my stomach, and began to substitute green tea for coffee.
I had a couple of episodes of the "hole in my vision" and "blurring," but I wrote those off as strange episodes. Then in October 2003, I got my first migraine. It was horrible! I was stricken with nausea, head pain, and general sickness. I thought I had the flu, and was out of commission for a couple of days. The next one came a month later, and this one was even worse. After I threw up all of my stomach contents, I started retching so violently I could not breathe; I thought I was going to die! Luckily my girlfriend rushed me to the hospital. It was there that I was told it was a migraine, and I was given an I.V. of something that helped. I saw my doctor, and he gave me a prescription for Imitrex.
The migraines began to get more frequent. I was now getting them every 1-2 weeks. It was ruining my life; I was afraid to go into meetings at work (and missing days off); afraid to go on backpacking trips into the mountains; and getting anxiety attacks thinking a migraine was always coming. My life was nearly hell.
I began to study migraines on the Web, and all of the doctors (and sufferers) said the same bs. I tried avoiding all kinds of stuff, and nothing worked.
Then I found your web site. For the first time I got an explanation that made sense and immediately started tapering off caffeine. I got down to ¼ cup of green tea, and then stopped completely. I got a migraine. One week later, I got another. Then... they stopped!
Your theory nailed it. Just to give you some back up, here is some more info:
Six or so months later, I was in need of some comforting vice. A friend gave me a cigar, and I experimented my taking it apart and taking a couple of puffs in a pipe. Without inhaling, I absorbed the nicotine through my gums and got a big stimulation. I did this on and off for two weeks, then got a migraine. So it is not just caffeine, but nicotine also (or anything that stimulates).
Then I tried instant decaf coffee. After a few weeks of that: migraine (I am so sensitized to it now that the littlest amounts cause the adaptation). Some green powder (Delicious Greens 8000) my girlfriend gave me did the same thing. By the way, I am fine with alcohol; I can drink as much as I want of any type (red wine is fine) and get no migraines.
I have been spreading the word wherever I can. But most people will not listen to the facts. I just cannot believe that people will suffer with migraines and yet I cannot convince them that caffeine (or nicotine, or other stimulants) is causing it. I cannot even convince my own doctor of what I found. He is not taking your information (or me) seriously. I have been able to help the wife of my boss, though. He knew my story, and my cure, and convinced his wife to abstain, and it works for her.
The key is to totally abstain; not even trace amounts are allowed, because the body becomes hyper-sensitized to caffeine. I think that this is where most people fail.
That is my story. It feels good to finally let you know what good your theory and website has done for me. Thank you.
It is a great pleasure to write you and thank you for coming up with the theory that gave me my life back. I have tried to get in touch with you for a while now, but always came up with dead ends (I was beginning to think the Imetrex people had silenced you!)
— Doug
Doug, you are one of only three known examples of caffeine withdrawal headache with visual aura. The second example contacted me less than two months after you did, the third more recently. Their letters are below.
29 January 2007
Barry —
I am a 39 year old male from the UK who has suffered from migraine since
teenage years. I have always had migraines both with and without visual
disturbances, although latterly many more attacks without than with 'aura.'
Having a father who at times in his life has suffered badly with migraine
(ironically his attacks are now almost all with aura and less severe), I
have always considered myself to be relatively fortunate with the
frequency/severity of my attacks.
At this point I would like to say that I have a highly sceptical disposition. I rarely take conventional medicines (and never any alternative medication) even for migraine, or visit the doctor. I was, however, very interested in your site which I stumbled upon whilst investigating the possibility of a caffeine migraine link. If nothing else, I was interested because of i) the clearly non-commercial nature of your site and ii) the clarity and logic of your deductions and theory and its presentation. I also knew a little about the 'causes of stomach ulcers' story, and have always found it interesting that the now widely accepted simple explanation eluded science for longer than it seems it should have done.
As a result of your site, in July of last year I adopted a caffeine abstinence lifestyle, by gradually cutting down over a couple of weeks as you suggest. I think this was easier for me than for most people because I've never drunk tea or coffee, and I rarely eat anything sweet; diet cola was probably my only source of caffeine. I have since that time (now six months) not had one single migraine attack; whereas in the months leading up to this I was probably experiencing over one per week. I do occasionally now suffer what I interpret as normal (mild) headaches: no nausea, predominantly not one-sided, and certainly not debilitating. Before stopping caffeine I didn't really experience normal headaches; that is, they would always escalate to be one-sided and accompanied by nausea. The effect on my life has been greater than I would have predicted, as not only has the suffering gone, but I now no longer worry about the disruption of getting an attack (perhaps on a work deadline).
Having grown up with a Dad who tried any number of conventional and not-so-conventional solutions including most migraine off-the-shelf and prescription drugs, acupuncture, growing feverfew in the garden to eat the leaves, breathing from a paper bag while standing on his head (seriously), night time dental attachments, relaxation, tranquilizers, allergy testing, etc., the only thing I would have said caused me to suffer a migraine was dehydration. I have in the last six months on occasions been more dehydrated than I would previously have allowed myself to become, and now don't worry about this causing an attack.
All this having been said, I remain of a sceptical disposition, and am prepared to accept that my experience is not as it seems to me. A part of me is expecting an attack to (at least somewhat) take the shine off the simplicity of the situation. It is entirely possible that something else is the explanation, but there is nothing that seems to fit the circumstances as well as your theory. Perhaps I grew out of migraines somewhere along the line (explaining the relative rareness of attacks with aura), and what I call migraine is really caffeine withdrawal headache. If so, then for me, caffeine withdrawal headache hurts like hell behind one eye and causes me severe nausea and, on occasion, vomiting. If that's the case then I'm very happy, for the time being at least, not to be having them whatever you might like to call them!
I hope the details of my experience are of interest to you, and would like
to thank you for the effort you have put into structuring and publicising
your theory. Please let me know if there is anything else I can contribute.
— [name withheld by request]
[Barry Spencer replies]
Doug's migraine with aura was diagnosed by a neurologist, and you describe clear and indisputable migraine aura, so Doug's headaches and yours are genuine migraine.
Yet in both cases migraines ceased after quitting caffeine, which strongly suggests caffeine caused them. Caffeine is a demonstrated cause of severe headache, so associations between quitting caffeine and cessation of severe headaches can't be dismissed as merely coincidental.
Dr. Richard Lipton, the leading US headache researcher, believes caffeine withdrawal can trigger migraine but not cause migraine. The distinction between trigger and cause is an attempt to preserve the prevailing view that migraine is separate from caffeine withdrawal headache, but that distinction is too slender a reed to bear the entire weight of the prevailing view of migraine pathogenesis. Migraine triggered by caffeine withdrawal is indistinguishable from migraine caused by caffeine withdrawal; for all practical purposes, they are the same thing.
I think the interpretation that makes the most sense is that caffeine withdrawal causes your migraine with aura. The same goes for Doug's headaches. Apparently in at least some cases caffeine withdrawal headache is migraine, and vice-versa, and the prevailing assumption that the two conditions are distinct and separate is mistaken.
You are the second of only three known examples of caffeine withdrawal headache with aura. These three examples put tremendous pressure on the prevailing view, which assumes caffeine withdrawal symptoms don't include visual aura, caffeine withdrawal never causes migraine, and migraine is distinct and separate from caffeine withdrawal headache.
24 March 2007
Barry —
Hi, I followed your advice and gave up caffeine completely. My only
source was coffee (I never drink soda or other packaged beverages).
It took a few weeks of tapering. Previously, I had to abstain
completely from alcohol—even half a glass of wine would leave me
hungover and migraine-stricken the next morning.
Now, I still feel headachy once in a while (mostly seems related to
altitude changes) but I haven't gotten a migraine since giving up
caffeine, and I can have multiple alcoholic drinks with no headaches
at all, which is an incredible turn of events. Thanks for your very
informative website.
— Nick [last name withheld by request]
19 May 2007
Hi Barry
Please don't publish my email address or name as I am very private. I do want to say I have had migraines since around age 26 — auras of zig zag lights and blocking out of vision in my right visual field followed by severe, one-sided headache, nausea, vomiting, malaise, photophobia, etc.
Headaches were rare in my twenties — maybe one a year. I saw a nurse practitioner when I was in my early thirties as the frequency of my headaches was increasing and I was getting these migraines just about every weekend and was having to spend my weekends sick in bed. She asked about my caffeine intake and I mentioned I drink diet colas heavily along with coffee daily, perhaps more so during the workweek. She suggested I gradually cut down on caffeine and taper off it. I got mad and told her I hadn't noticed any association and I didn't think it was caffeine so she prescribed a calcium channel blocker which did help.
A few years later I realized she may be right and decided to taper off caffeine. I got so sick every time I reduced my coffee/colas by even a few ounces. I had to measure how much I was drinking and cut down no faster then ~10% per week. If I reduced my cola/coffee any faster I was very ill with nasty migraines. Eventually I very slowly tapered of all caffeine and after a few months my migraines almost completely disappeared and I was able to get off all prescription meds. For the past five years I have been caffeine and chocolate free and now only get migraines once a year or so. Here is the kicker: if I drink cola, coffee, decaf coffee or eat chocolate my migraines come right back!!
I am so glad you have your website as it is going to get migraine people — even ones like me who initially insist caffeine is not the culprit — to at least think about it and maybe — even if it is a few years later — try to get off all caffeine. It is hard to get off all caffeine as unless you taper off very tediously slowly by measuring your intake in ounces and reducing very slowly you can beome violently ill with migraines.
It is wonderful not to have to take any medication. What got me to change is I read a medical study that came out sometime around five to eight years ago suggesting calcium channel blockers may cause brain lesions or cognitive impairment — I can't remember the study or details but it scared me enough to want to get off the meds, plus the meds were really expensive and that irritated the heck out of me.
[name withheld by request]
[Barry Spencer replies]
You are the third of three known examples of caffeine withdrawal headache with aura (or migraine with aura caused by caffeine withdrawal — take your pick).
1 December 2007
Hi,
I just wanted to email you to say that your website changed my life.
I was a migraine sufferer for many, many years. I had my first aura at the age of eight, and began getting debilitating migraines at about the age of 21 (I am now 37). I would sometimes get up to 20 a month—discomfort in my neck, followed by extreme nausea, pounding on the right side of my head, and extreme sensitivity to light. I only had auras occasionally. In a good month, I would have nine (never less than that). I spent many years taking every prescription preventive migraine treatment you can think of. I had to stop all of them because of the side effects, and to be honest, none of them worked on me anyway (with the exception of verapamil, which kept me at about nine per month). I thought this was something I would have to live with forever. I put off having children because I couldn't imagine nine months without my Imitrex. Finally, after fifteen years of agony, I thought to myself, "What is consistent in my life besides the migraines?" The answer was my extreme love of sweet tea (I'm in the South). So I then found your site on the Internet, read what you had to say, and thought anything was worth a try at that point in my life. I gave up tea and all caffeine over the course of about three weeks so I wouldn't be totally sick. During that process I would get a headache even three days later after the tiniest dose of caffeine. After that time, I paid extremely close attention to make sure I was getting NO caffeine whatsoever. That was a year ago, and it has been the greatest miracle! I have maybe had five headaches this entire year, and I don't really know that they were migraines. They were triggered by long plane flights (twelve hours to Hawaii), long car rides, and sometimes very strenuous exercise.
I have since told several migraine sufferers about the "no caffeine" cure, but no one wants to listen. They all say, "Well, I don't have very much." That included my mom at first. I thought she would be thrilled to know there was hope for her, because she had just as many per month as I did. She is now 63, so you can imagine her suffering over the years. She says she really doesn't drink caffeine, which she pretty much doesn't... but she has taken Cafergot for YEARS. My dad and I have worked her over about this, so she has tried to give it up and she is somewhat better. For me, "pretty much" doesn't cut it. Caffeine has robbed me of a good part of my life and I'm done with it forever!!!
One thing that is still kind of a mystery is that I had caffeine throughout my childhood. I tolerated it ok, though I did have a headache here and there. Therefore, when it started causing so much pain in my twenties, it was harder to make a connection between the two.
Anyway, I thought I'd tell you my story. Maybe some of the details will be helpful to you. Most of all I wanted to say THANK YOU! YOU HAVE CHANGED MY LIFE! My quality of life and productivity have improved more than I ever thought possible. It's a joy not to be in so much pain!
Best regards, Julie [last name withheld by request]