Jeff's 20 Year Migraines Story

Jeff's 20 Year Migraines Story

May 9, 2022

I've told this story so many times.. I finally needed to write it up. Ok, for the first ten years, I had no idea what was wrong with me. Very often, I'd wake up on a Saturday (almost always Saturdays), and feel this impending sickness (some combination of sinus pressure, headache, etc). When I had that feeling, 100% of the time the following would happen: I'd throw up, a lot, to the point where I was vomiting up bile. I'd fall asleep in cold shivers, wake up a few hours later, and do that again. That cycle would repeat all day. Then Sunday I'd be fine. It killed any chance I had of a social life because I could barely plan things for the weekends. The fact that it was only on Saturday confused the hell out of me, so I did experiments to try to figure out was wrong - maybe there was mold in my apartment or something? So I tried sleeping over at my parents house. I did lots of experiments to try to figure this out. I talked to doctors and they had no idea. That phase lasted for ten years.

Then it was suggested have you ever seen a neurologist.. that I hadn't.. So I went to see one. I described what's been happening to me, then he got up and left the room - I wondered wtf, did I offend him or something? He came back in the room with a book and plopped it down in front of me and told me to read the paragraph he'd circled. It said "Migraines can be..." and I already rolled my eyes, and my Mom had suggested migraines multiple times but I dismissed it since she often would think others were having what she had heard of recently.. I kept reading "Migraines can be caused by a change of diet, (something else I forget), or a change of sleep patterns". I slowed as I read the last part, with this feeling of "ohhhhhh".. He said "You told me you're working these crazy 80 hour work weeks with almost no sleep.. then Saturday morning you're sleeping in. These are most likely migraines.

He proceeded to tell me "There's a wafer I can give you that dissolves on your tongue, which fixes it immediately, but that's prescription.. Why not try Excedrine Migrane first..".. I was in a state of shock.. I'd only come here to find out what the NAME of my condition was (if anyone knew) - not to actually have a FIX.

I went out and bought a bottle. The next time it happened, I woke up with that built-in gut feeling of dread of "oh here we go again". Then I took a dose of Excedrine Migrane. THE PROBLEM WENT AWAY. 100% of the time that I'd felt that before, I was destined for a day of agony.. This time, it (for the first time ever, finally) hadn't happened!

I now bought like 5 bottles, and had them everywhere (desk at work, car, home, etc).

There started the second ten years.. This is ten years where I would wake up with that feeling, and would take Excedrine Migrane to solve it. If I didn't happen to have Excedrine Migrane around, I'd be completely screwed and go back into one of those days, but that almost never happened, because I always kept some around. (One notable exception was one year at Makerfaire where I was exhibiting and somehow had lost my bottle, where my friend Mark Russell (or my brother Jon Keegan? or a combo of the two?) managed to go find me some.

Three years before the end of that second ten years (so 17 years into this), I had some unrelated medical issue requiring that I see some new doctor. He asked some standard question about "do you take any medications" and I said "other than Excedrine Migrane, no". He said "how much of that do you take?" and I said "I dunno, but a lot".. He said "no you have to stop that".. I was like "NOO!!!!!!!!", fearing the trauma that I'd lived through for ten years.

He said "Ok, well for the next year, take a log of how often you take Excedrine Migraine". We'll review it next year. So I did. I kept a note in my iPhone, logging like a druggie "(date) - Took". It turns out it was happening about twice a month - never less than twice per month, never more than five times per month.

A year later both he and my primary said the amount I was taking was fine, so I didn't need to worry about taking it.. and I could stop keeping the log. But the scientist in me (and the part of me driven by habit) kept logging. I have three years of logs of when I'd feel that feeling that I know with 100% certainty leads to a day of vomiting if not treated.

Then one day in an argument about finances and needing to cut back costs, I knew that the amount of iced coffees that I was getting from Dunkin Donuts would be used as an argument against creating a budget, and that I was a hypocrite. (I often had three iced coffees per day, and had Coke with every meal). I wondered if it would be possible as an experiment to stop all caffeine for a while. I researched it and decided that cold turkey was the best approach for me.

So I stopped, cold turkey. I had read about what was going to happen.. I knew the third day would be the worst, and it sure was.. I was driving down Rt 93S towards MIT Lincoln Laboratory and had to pull over to the side of the road to vomit, and like 30 minutes later at the side of the road managed to call work and tell them I wasn't going to make it in, and turned around and came home. I pushed through it. By like the 5th day I was feeling great, and by the 7th I found I had energy all day long.. I was never getting tired mid-day like almost everyone in the world does (prompting the "don't talk to me before I've had my coffee" coffee mugs).

I figured though that this experiment could only last so long, because I knew that Excedrine Migrane has a ton of caffeine in it.. I also knew that was due about every two weeks.. So I waited for the inevitable migrane, and told myself that fixing a future migrane was more important than the caffeine experiment, and pre-decided that I'd take it as soon as I felt it, not worrying about the experiment.

That day didn't happen. I didn't have any of those days where I felt an oncoming migrane, and I didn't have any migraines at all. I made a chart showing the number of (prevented) migraines I had over the course of three years, and then the complete absolute dropoff of migraines the week that I quit caffeine.

As of 3.75 hours ago it's now been nine years with no migraines.. maybe once or twice a year I might get something vaguely close to just the beginning feeling, but it never turned into migraines (and I think those were all either seasonal allergies, just regular headaches, or maybe sinus infections or something).

So, either I don't think those were migraines, or more likely, that (some) migraines are related to caffeine withdrawal. Go back and re-interpret what the neurologist had said to me.. I was working these crazy 80 hour weeks with no sleep. Finally it's Friday night.. do you drink caffeine before going to sleep? No. So Friday night I was already a while without caffeine.. Then I'd go to sleep, for a long time since I could sleep in (8+ hours). That whole time, no caffeine. If I woke up and took Excedrine Migrane? IT HAD CAFFEINE! Addiction appeased. If I didn't and I vomited and fell asleep in cold shivers, that's even more time with no caffeine.

During the twenty years I'd already learned that I could never sleep in, because that would almost always (even when it wasn't a Saturday) cause that feeling (and if untreated, a day of misery).. so I always created alarm clocks to wake myself up after 7.5 hours of sleep. Now I can sleep in as long as I want.

Bottom line, I want to scream from the rooftops that migraines are possibly actually just caffeine addiction. I also want to scream that the thing you feel you need caffeine for (mid-day tiredness) is itself a result of your addiction to caffeine. The problems are: 1) People love coffee so much (so do I - I still let myself enjoy coffee ice cream now) that I might as well tell them to change religions, and 2) Maybe others weren't as affected as I was, possibly because of my own biochemistry, or how much I drank?

My first day with no caffeine (in this no-caffeine-run) was May 9th 2013.

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