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The Post I Never Thought I’d Get to Write

Not only do I think I’ve figured out my biggest migraine trigger, I have a way to treat it. Even better, the treatment is simple and straightforward and feels sustainable for the long-term. As an added bonus, it lets me eat peanut butter.

Here’s the gist, which may have gotten lost in the epically long post about mast cells, histamine and diamine oxidase a couple weeks ago:

  1. Whenever a person eats anything, histamine is released as part of the digestive process.
  2. An enzyme called diamine oxidase (DAO) processes the released histamine.
  3. I do not produce enough DAO (nor do many other migraineurs, according to at least one researcher).
  4. Without enough DAO, I can’t fully process normal amounts of histamine.
  5. All that unprocessed histamine is a major migraine trigger for me. (Studies suggest histamine could be a trigger for some percentage of people with migraine.)
  6. By taking a DAO supplement 10 minutes before I eat, I’ve been able to eat without getting a migraine.
  7. Histamine Block, the supplement I started this week, is much more potent and more effective than the one I was experimenting with a couple weeks ago, hence the drastic improvement. [Tons of people have asked where to buy the supplement. The name is Histamine Block and it’s available on Amazon. Click those words and you’ll get right to it.]

Despite still having constant head pain, it is sometimes as low as a level 1 and I haven’t had a real migraine since last Friday. I literally cannot remember the last time I felt as good as I have in this week.

Unsurprisingly, it has been a tremendously exciting and weird week. Multiple times, I’ve been driving with the windows down, dancing and singing at the top of my lungs, the stereo blaring so I don’t have to hear myself sing — and crying. I just can’t get over how normal life suddenly seems.

I’m so overjoyed and overwhelmed that I can’t make sense of the mass of thoughts jumbled in my mind. Could this treatment — which is so obscure as to be unheard of by the vast majority of headache specialists — really be “it”? Am I embarking on a future without daily debilitating migraine attacks? What does day-to-day life without a constant migraine even look like? Is my greatest wish actually coming true?

1/24/14: I awoke at 5 a.m. worried this post made it sound like I think I’ll never have another migraine, so here’s a clarification. I do not. I even expect they will stay chronic. My greatest wish isn’t to be pain- or migraine-free, but to not have a migraine all. the. time.

Having a migraine triggered every time I ate has probably been the greatest burden of chronic migraine for me. Figuring out something that’s contributing to that one piece of the puzzle — and having any sense of normalcy — is exhilarating.

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Cefaly: What it Feels Like & My Early Experiences With It

You know what Cefaly is, now here’s an overview of using the device, what it feels like, and my early experience with it.

Cefaly has three programs: abortive (programme 1), preventive (programme 2), and relaxation (programme 3). Each program slowly increases in intensity for the first 12 minutes, the levels off  and remains at that strength for the remainder of the 20-minute session. You can push the button at any point to stop the intensity from increasing any further. However, according to the manual, “The effectiveness of the treatment depends on the power used. It is consequently advisable to work with the maximum power possible.”

With this in mind, and because I had a migraine coming on, I started with the abortive program (programme 1). Both the lead researcher and the manual say the sensation isn’t painful, so I was surprised by just how intense it is. I agree that pain isn’t the best description (especially for someone used to migraine pain), but the sensation is far from comfortable. Initially, it feels like a mild buzzing vibration with a sharpness to it that’s not quite pins-and-needles. As the program intensifies, so does the vibration and a feeling of pressure develops, like someone is pushing hard against my head with the heel of their hand. Then a sort of clenching sensation begins, almost as if the muscles were tightening. Again, none of these sensations are exactly painful (unless I already have allodynia), but I am always greatly relieved when the program is over. Anyone with significant allodynia will probably find this device unbearable to use.

The first time I used the Cefaly, I had to stop before reaching maximum intensity. It was just too uncomfortable to continue. When the 20 minutes were up, the migraine felt unchanged. I started it up again (one touch of the button in the wind-down period returns the stimulation back to the maximum strength for the session and it remains there for the next 20 minutes), as the manual says,

“The standard 20-minute session is generally too short, except for mild headaches. Usually it is necessary to carry out programme 1 several times, and for at least 40 minutes. Generally, 2 to 6 sessions of 20 minutes each are needed, depending on each individual. This is not always the maximum either, since Cefaly can be used all day long if needed.”

An hour at not quite full strength eased the migraine from a level 5 to a 3. Not only was I able to go to dinner with friends, I was chatty and felt good. The migraine came back three hours later, which has since proven to be a pattern. Multiple times since then, using the device at almost full strength continuously for an hour has reduced the pain by two levels and I’ve been able to function for a while, though the pain is always back after two or three hours.

What’s most interesting about this is that not only is the pain decreased, but so is my primary prodrome symptom of tooth sensitivity. For the last nine months or so, sensitive teeth on the upper left side of my mouth are a reliable indicator that I have a migraine coming on. Even before I notice increased pain or other symptoms, I feel the sensitivity in my teeth, often testing them with a drink of water. Before I use the Cefaly, my teeth are sensitive; afterward they are not. This makes me think that the migraine process is actually being interrupted, though I don’t know if the science backs me up.

Since the manual says the device is most effective if used at full strength, I kept trying to get there. If the migraine is bad enough and thus my allodynia high, the sensation is unbearable. When I have gotten it up to full strength, the muscles in my eyelids twitch, I feel spasms in the muscles around my eyes, and I cannot keep my eyes open. As I am a master at not listening to my body, I ignored these sensations by distracting myself with a podcast while the Cefaly was on. I was rewarded with a broken blood vessel in my eye.

Thanks to a phobia for all things eye-related, this was a message I could not ignore. I backed off after that, setting the Cefaly even lower than I did for the first few sessions. And it stopped being as effective. It simmered a migraine down one level on the pain scale, reduced my tooth sensitivity without eliminating it, and gave me an hour of productive time before the pain came back.

My final assessment won’t come for at least a few months, by which time I should know if it is preventing any migraine attacks. In the 10 days I’ve used it, I believe it has already given me multiple hours in which I could run errands, write, make it to appointments, or do chores when I otherwise would have been relegated to the couch. That’s worth $230 and $10 per electrode for this chronic migraineur.

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Migraine Preventives & Weight Gain

The threat of weight gain as a side effect of migraine preventive is a major concern for many migraineurs. Though I’ve been sympathetic to their worries, I never really understood. If something reduces the migraine severity and/or frequency, I thought I’d be willing to gain even 70 pounds. Then I started gaining weight on cyproheptadine and was rewarded with a massive infusion of empathy. Read about it in The Emotional Turbulence of Gaining Weight on a Migraine Preventive on Migraine.com.

Upon finishing that post a few weeks ago, I wasn’t sure if the weight gain was worth the trade off. Then I asked this hypothetical question: Would I stop cyproheptadine tomorrow if it meant I’d lose the weight within a week and my daily pain would return to a level 7? No freaking way! Ten or 20 pounds is an absolutely fair price to pay for level 5 pain.

Avoiding and Coping With Migraine Medication-Related Weight Gain by Diana Lee has some excellent tips if you’re struggling with weight gain from a preventive or inactivity due to migraine.

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Begging & Bargaining With the Migraine Gods

Day four of a migraine attack and I’m begging the migraine gods that Ritalin isn’t the trigger. Please let it be that I worked too hard in yoga Friday (never mind that those migraine attacks always last two days), or some invisible weirdness with the weather (since the storm cleared on Sunday). If not those, let it be the amaranth I ate Sunday night or the 1/4 teaspoon of breadcrumbs I had on Monday.

I will work diligently and mind-numbingly slowly on the treadmill to regain my cardiovascular fitness without triggering migraine attacks. I will only go to gentle yoga classes until I do so. I will eat nothing but chicken and rice for the rest of my life. These are the rational trades I will make. If you need irrational, I’ll give up listening to Dave Matthews forever. Seriously. Last week was that amazing.

I’m sad and scared and desperate.

Please, migraine gods, if you have any mercy, don’t let it be the Ritalin. For a week I had my life back. My self back. Don’t obliterate me again.

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Cyproheptadine for Migraine Prevention

The entire time I’ve been on cyproheptadine (about seven weeks), I’ve alternated between wanting to gush to you about it and feeling an immense need to keep quiet, lest I put its effect in jeopardy. I’m more superstitious about this medication and its efficacy than a starting pitcher in the seventh game of the World Series. I fret over the strangest things, afraid that any change in my symptoms or dose could mean an end to the relief.

Cyproheptadine is not new or novel; in fact, the brand name version, Periactin, is no longer made. It is an old antihistamine often used to children with migraine. I tried it a couple years ago and, although it is known for causing drowsiness and is sometimes used as a sleep aid, it made me jittery and unable to sleep. That first trial lasted only a couple days. This past summer I was so fatigued (turns out I was deficient in vitamins D and B12) that I decided maybe the side effects I experienced on cyproheptadine the first time would be welcome.

This time I had the more typical side effects of drowsiness and increased appetite, but also had an immediate reduction in the severity of migraine pain. The side effects were the strongest the first week I started the medication. I’ve increased the dose twice and each time have noticed the side effects for two or three days before they disappear. So far, I’m two pounds heavier than when I started.

Cyproheptadine’s maximum dose is 36 mg; I’m on 12, where I plan to stay for at least another month to see if I get any further benefit the longer I’m on the dose. For now, I’m enjoying many days where the pain ranges between a level 2 and 4. Only twice in the last month has the pain reached level 6 and I’ve even had a couple hours at level 1. At least, I think it was — I have no memory of what level 1 feels like.

This is the land of rainbows and unicorns!