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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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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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Ritalin Side Effects

With my lighthearted approach toward Ritalin, I fear I’ve diminished the fact that it is a a real drug with potentially serious side effects. Sorting through information on the medication was surprisingly complicated. On one hand, it seems like a relatively mild, safe medication; on the other, there are dire warnings about its risks. I assume this is because it is often prescribed to children (many believe it and similar medications are overprescribed) and has a potential for abuse.

The most common side effects, compiled from the FDA-approved medication insert (PDF), WebMD, Drugs.com and RxList, are:

  • nervousness
  • agitation
  • anxiety
  • insomnia
  • loss of appetite
  • nausea
  • vomiting
  • abdominal pain
  • dizziness
  • heart palpitations
  • headache
  • increased heart rate
  • increased blood pressure
  • dry mouth

Serious side effects, according to MedlinePlus (from the National Institutes of Health), are:

  • fast, pounding, or irregular heartbeat
  • chest pain
  • shortness of breath
  • excessive tiredness
  • slow or difficult speech
  • fainting
  • weakness or numbness of an arm or leg
  • seizures
  • changes in vision or blurred vision
  • agitation
  • believing things that are not true
  • feeling unusually suspicious of others
  • hallucinating (seeing things or hearing voices that do not exist)
  • motor tics or verbal tics
  • depression
  • abnormally excited mood
  • mood changes
  • fever
  • hives
  • rash
  • blistering or peeling skin
  • itching
  • difficulty breathing or swallowing

For a complete list of potential side effects and their severity, see this thorough list of side effects of 10 mg of Ritalin from Great Britain’s National Health Service or WebMD’s Ritalin side effects.

Personally, I was a little shaky the first couple days I took it, but less than I would be if I had a cup of coffee. Since then, I’ve been careful to eat 30 minutes after taking it, as the label recommends. My feet also seem excessively sweaty and I’ve lost a couple pounds. Having gained 13 pounds on cyproheptadine, I haven’t minded the weight loss and hope that the weight-related side effects of the two medications ultimately cancel each other out. In case you’re concerned, be assured that my casual approach to the drug is not out of a sense of euphoria, but because I’m so happy to feel like my normal self again. The absence of serious side effects makes this even easier, of course.

The possibility that the drug with disrupt sleep is a big one for migraineurs, many of who already have trouble sleeping. I take it first thing in the morning and haven’t had a problem. Because I don’t use it to manage ADD or ADHD symptoms, I don’t need multiple doses in a day. I’m not sure why, but my energy and mental clarity last all day with only one dose.

Beyond the immediate side effects of the drug, there are concerns of its potential for abuse and the effects of long-term use. You’ll have no trouble finding alarming article on either topic. I’m not worrying about either one right now. By taking only 5 mg a day and using it for a legitimate medical condition, I don’t think I’m at much risk for abuse. If I’m still on it in a year, I’ll look into the long-term effects. For now, I’m just enjoying having the mental wherewithal to write long, research-intensive posts like this one.

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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!