I was addicted to my migraine trigger

We were about an hour into the board meeting and one of the board members looked right at me and asked me a question— I tried my best to focus and say something, but the lights in the room were getting unmanageably bright. My head was hurting uncontrollably. I felt very nauseous, so I excused myself and ran to the bathroom. I tried my best to throw up, but the more I would try, the more my head would hurt. Eventually I gave up, told the board and my coworkers that I had to go home.

About 4 weeks before that incident, I had been taking about 2–3 Excedrins a day. My headaches were getting persistent and uncontrollable and only Excedrin (that had caffeine it) would help. In fact my doctor had even given me advice on how frequently I should take Excedrin. He had also told me that to get the pain reliever into my bloodstream sooner, I should take the Excedrin with a carbonated drink. I did all of that. The Excedrin would give me moderate relief but as soon as it wore off, I felt even sicker than before. Vicious cycle.

The day after the board meeting, I was back at work and once again had another uncontrollable headache. This time the nausea got the better of me. In fact I was having trouble keeping food or drink down. So my wife rushed me to the ER, where they gave me pain relievers intravenously. I remember the ER doctor telling me, “have you gotten checked for migraines?” I went back to my primary care doctor, who referred me to a neurologist. And the diagnosis was, migraines. I had also learned the very hard way about the long term side effects of using NSAIDs like Excedrin.

My neurologist very quickly got me started on a drug called Topamax or Topiramate. The recommended dose was 100mg. As someone who has stayed away from prescription drugs all my life, I decided to start with 50mg. I was also given Sumatriptan — a migraine abortive. I was told Sumatriptan was a “ripcord”, in that, if I felt a migraine coming on, I should immediately take some Sumatriptan (100mg). Sumatriptan was a magical drug. It made my mouth super dry, but it helped me get numb to the pain.

About 6 weeks of staying on Topamax, I started noticing some interesting patterns that I had been warned off. I would try to communicate but on occasion, words wouldn’t come out of my mouth. The thoughts were crystal in my head, but I couldn’t speak. Regular foods started tasting bland and weird. In fact, most times I felt like my appetite wasn’t there. Within 6 months of using Topamax regularly, I lost about 20lbs (went from 150lbs to about 130lbs). No matter what I tried, I couldn’t gain weight. When I told my neurologist about this, he joked, “people would kill to have that sort of weight loss. In fact, I knowlayers and bankers who take Topamax just to keep their weight down.” On my request, my neurologist also started researching alternatives to typical prescription medications. So I also started taking Butterbur, Riboflavin, Feverfew and CoQ10. All in all, the Topamax (50mg) + Sumatriptan (50mg) combo was working. I became the guy that had Sumatriptan in his backpack, by the bedside and some at work. My migraines were down from 8–10 a week to about 3–4 a week. But the 3–4 a week were seriously debilitating.

For about 4 years, I stayed on this combo. My neurologist never suggested anything to entirely eliminate the migraines per se — in his experience of having done this for 30 years, no one had entirely gotten rid of their migraines. Our thesis, however, was that the migraines were triggered by lack of sleep. So in addition to the pill cocktail, my neurologist also suggested Magnesium, which is known to aid with sleep. My migraines were particularly bad on flights — I couldn’t get through a 5 hour flight without at least 150mg–200mg of Sumatriptan. Which means I also chugged water constantly because of the dry mouth. Which also means I had to constantly go to the bathroom. Middle seats were the bane of my existence.

The one other nasty side effect — I was constantly “crabby”. I wasn’t quite myself. I recall being obsessed and quickly getting upset over mundane things. I tried to work out, but my head would start pounding as soon as I tried anything that was remotely exertive. I couldn’t run or walk long distances. As someone who had spent their entire life playing basketball, my life had become very sedentary. People would constantly tell me that I had lost weight, and it wasn’t like a “hey, you are looking good”, it was a “wow, you look creepily thin”.

After about 4 years of seeing the same neurologist, I decided to get a second opinion. In July 2017, I made an appointment at the UCSF headache center. I met a Dr. Morris Levin, and he assessed me very briefly. He asked me about my coffee drinking patterns. The coffee snob that I was, I told him about the delicious light roasts I had to have every morning. About 1 cup a day — that’s all. But it had to be at least 1 a day. I had been drinking coffee for about 15 years. Dr. Levin interrupted me and said, “I’ve heard enough. Stop the coffee immediately. That’s it. You don’t even need to schedule a follow up appointment. Good luck.” I told him that I had tried that before and I would get serious withdrawal headaches — so he suggested I wean off coffee gradually. I was dubious, I couldn’t function without coffee and there was just no way I wasn’t going to do it.

I had been a long time follower of Shane Parrish and the Farnam Street Blog and I finally got a chance to listen to this podcast with Naval. These words really stuck with me:

We also unconsciously pick up habits in the background and we keep them for decades. We may not realize that they’re bad for us until we’re ready to move on them.…What we do is we accumulate all these habits. We put them in the bundle of identity, ego, ourselves, and then we get attached to that. … It’s really important to be able to uncondition yourself, to be able to take your habits apart and say, “Oh, okay, that’s a habit that I probably picked up from when I was a toddler and I was trying to get my parents attention. Now I’ve just reinforced it and reinforced it and reinforced it and I call it a part of my identity. Is it serving me anymore? Is it making me happier? Is it making me healthier? Is it making me accomplish whatever I want to set out to accomplish right now?”…I did a lot of habit changes over the last few years. I’ve now got a daily workout that I do, which is a great habit. I cut down heavily on drinking. It’s not totally eliminated, but it’s mostly gone. I dropped caffeine.…You can untrain yourself. It’s just hard. It takes work. It takes effort. Usually the big habit changes comes when there’s strong desire-motivators attached to them.

After my daughter’s 4th birthday, I had decided to make a concerted effort to get healthier, both physically and mentally. With that commitment to myself and my family, with Dr. Levin’s suggestion, and Naval’s take on habits, I decided to, gradually but surely, quit coffee.

At this point, I was still getting about 3–4 migraines a week, but as I started going off of coffee, I noticed my frequency of migraines was declining. I used to get withdrawal headaches, but those were very different from the migraines, and very manageable. It took about 6 weeks to get off of coffee entirely. Finally in mid-September, I noticed my migraines had all but stopped. I was entirely off of any form of caffeine at this point. And coincidentally just around then my Topamax prescription had run out. I decided not to refill it.

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@paulbz Took me 6 weeks to get off of coffee. Wk 1: switched from light to dark roast. Wks 2-4: 1/2 dk roast + 1/2 decaf Wks 5-6: just decaf

 — @ai

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It turns out I was addicted to my migraine trigger. It has now been about 3 months that I have been entirely migraine free. I hesitated to write this post for the longest time — not only am I superstitious, but I have been very concerned that the migraines would recur. I have since taken 4 cross country flights without any Sumatriptan in the last 3 months — no migraines. More importantly, my taste buds are back. I have since gained about 11lbs. I have been working out consistently about 4–5x/week now, and I get no migraines when I work out. The most interesting thing however was how I felt like my “peripheral vision” had returned. We live on top of a hill, and every weekday we drive down the hill to go to work. A month or so ago, I noticed the most amazing view from this hill. When I mentioned the view to my wife, she said, “yeah, you know we do this drive everyday. Are you just noticing it?” I was just noticing it! When previously I felt like I was struggling for words, I am also now able to listen, comprehend and respond more cogently.

My weight gain since going off of Topamax (via HealthMate)

And an interesting byproduct of the exercise, my HDL had increased by ~50%:

via Forward

I have read about the amazing benefits of coffee. But to me coffee is a dangerous addiction. Had it not been for Dr. Levin and Naval Ravikant, I would not have thought to challenge my coffee addiction. Fairly often I meet fellow migraine sufferers and we share stories. When I tell them that coffee was the cause of my migraines, they are usually in disbelief. Most commonly I hear, “but the coffee usually makes me feel better”. Does it though?

Migraines are debilitating and extremely painful. If you are a migraine sufferer, I am so so sorry. There is no known cure for migraines, and there isn’t a consistent pattern for what triggers migraines. Naval’s advice was extremely poignant for me — so if you are a migraine sufferer, it might not hurt for you to revisit your habits. It has definitely changed my life for the better.

PS: Please consult with your doctor or neurologist before making any changes to your diet.

I was addicted to my migraine trigger was originally published in Hacker Noon on Medium, where people are continuing the conversation by highlighting and responding to this story.