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Julie  Stachowiak, Ph.D.

Caffeine, Headaches and Multiple Sclerosis

By November 30, 2011

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About a week and a half ago, I eliminated caffeine from my world. That's right, I stopped drinking my beloved coffee.

I took such a drastic step because I have been getting migraine headaches - sometimes full-blown, grit-your-teeth-in-pain ones, and other times, just really uncomfortable ones. All of these headaches were combined with nausea and many of them also came with sensitivity to light. People with multiple sclerosis are much more prone to migraines and headaches in general, than the rest of the population, but they are usually treated the same way. I have tried migraine meds before. While they did work, they knocked me out or made me feel "off."

I also knew that these headaches were directly related to something I was eating or drinking. I would be fine until I ate something or drank anything besides water. About 75% of the time, as soon as I consumed something, I would have a major headache. I made an appointment with an allergist, who told me that my symptoms were not those of an allergy and that he couldn't help me (besides telling me not to eat things that seemed to bother me).

One night, I decided to do a little digging around and found the book by David Buchholz, Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain. Sure enough, Dr. Buchholz, a Johns Hopkins physician, says that many migraines are caused by food triggers. He presents a diet plan to follow that eliminates all triggers for 4 months (then you can add them back in if they don't bother you). Caffeine is number one on his list of triggers and he does say that people with migraines should NEVER add caffeine back to their diet.

I decided to try his plan. The diet is restrictive, but there is much overlap with what I am doing anyway with my form of the Best Bet Diet. Cutting out the caffeine, though, is an amazing experience in how hard it has been.

The first day was okay, with just a mild headache by bedtime. Days 2 through 5, though, were excruciating. Not only was my head killing me, all of my joints hurt. I had intense lower back pain. I was tired, but couldn't sleep because I was too uncomfortable.

Then, on day 6, the pain lessened. By day 9, I was mostly pain-free - the sun came out and the birds were singing in my world. I am now on day 11 and have not had a headache for 2 days.

Yes, I know I could have done my caffeine elimination more gradually. However, I was desperate to be rid of these migraines. I did feel worse for that 6 days, but I truly feel much better than I did before this experiment. I am committed. I packed up my espresso maker (and wept a little), as well as all tea that was not strictly caffeine-free. I gave all the chocolate in the house to my husband (who has also quit coffee).

What about you? Do you have headaches? Migraines? Have you tried cutting out coffee? Have you stopped caffeine for other reasons? Share your story and tips below in the comments section.

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December 1, 2011 at 9:45 am
(1) Colleen says:

Hmmm. A different approach from my neuro’s suggestions. She thinks I should stay on a regular dose of caffeine to PREVENT migraines. (Some migraine meds do have caffeine in them). Says as far as migraine meds go, caffeine is the least worrisome.

Altho a scientist friend of mine speculated on whether MSers should even be on caffeine because it stimulates your system, and thus your nerves. And since our nerves are already out of whack, why add to that?

Me, I’m going to keep drinking my morning coffee (that’s all I consume, I drink water the rest of the time).

December 9, 2011 at 3:09 am
(2) Kathy Karsten says:

I have had migraines since 1995. At onset, I felt as though I was having a stroke, right sided numbness and weakness, pain on the (right-side) top of my head, pain behind my right eye, pain at my right temple and pain on the right base of my skull.

My last migraine, was so bad that I vomited all day which meant that I could not take my Zomig (orally), so (luckily), I had some anti-nausea suppositories that settled my stomach enough to allow the Zomig to do it’s job.

This “latest” migraine was different than my normal migraines, as it seemed to be “sinus” related. The sinus pain woke me up from a deep sleep, almost to the point of being the unbearable kind, where I would need to go to the hospital for treatment. I do need to make an appointment with a Neuro, soon.
I do not drink coffee, but I do love my chocolate! Chocolate does not seem to “trigger” my migraines. I have thought (for quite some time), that white cheese is causing the problem. When I ate mozzarella, the last time, in pizza, I had a migraine. The last time I had lasagna, the same thing happened. Hmmmm? I’ve also considered that “stress” is causing them, but it doesn’t occur every time that I am stressed.

Another thought, is MSG causing my migraines? I haven’t read all the labels, that I should and try to find out if “this” is the real culprit. Has anyone else tried to find out if MSG is causing their migraines?

The only thing that works, for me, is lying down in a dark room after I have taken my 5mg Zomig, sleeping the migraine off. I (too) have sensitivity to light and sound, so quiet and darkness is a must!

I’m very lucky that Zomig works for me, because I know there a lot of people, out there, where nothing works for their pain and they just suffer through them.

I hope this information can help some of you out there with your migraines.

I understand!

Kathy in Oregon

November 22, 2012 at 4:34 am
(3) louise says:

my 11 year old was suffering from headaches for a year and vomiting also hallucinating up to 10 times a day, this was interfering with school, the doctor suggested a sensitivity to caffeine was to blame, after cutting caffeine out of his diet for several weeks the headaches improved and the hallucinations stopped completely.

January 7, 2013 at 11:31 pm
(4) Dana says:

I definitely notice a difference. I have not had any caffeine for three years. I don’t eat gluten, yeast, eggs, dairy, soy, red meat, or legumes. Then over the past holiday, I allowed my self some coffee, and kept on with it. Headaches are back and weird sensations in my legs. It took this article to help me piece it together. I am definitely cutting it out of my diet again. Congrats on letting it go and beware of all the hidden caffeine.

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