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Hoping for a Hole in My Heart

Every night since my headache specialist recommended I get tested for a patent foramen ovale (PFO), I have lain in bed at night visualizing my heart with a hole in it. As if imagining and hoping for this defect would make it so. I so desperately want to have this hole in my heart because many migraineurs have experienced a reduction in the frequency and severity of their migraines after having their PFOs closed. This exemplifies one of the strange ways chronic intractable migraine has changed my thinking: I want to need heart surgery because there is a chance that it might finally offer an effective treatment for the migraines.

Wondering what in the world a PFO is and how it relates to migraine? Here’s what I wrote about it in 2008:

The hole, called a patent foramen ovale (or, more commonly, PFO), is an opening between the upper chambers of one’s heart. Some migraineurs who had PFOs closed for another reason reported that their migraine attacks stopped or were much less frequent after the surgery.

The hole is present in fetuses to allow blood to pass from one side to the other. In most people, the gap closes at or after birth. For an estimated 25% of the US population, it doesn’t close completely and the PFO forms. This remaining tunnel functions as a valve. Normally the valve is shut, but sometimes remains open, sending blood that’s supposed to go to the lungs off to the brain and other parts of the body.

Are Migraines Linked to a Heart Defect? is a helpful Q & A in the New York Times from 2010. I can’t find any recent stories on it. What I understand from talking with my headache specialist is that PFO closure has been helpful for migraine with or without aura (most early reports focus only on migraine with aura) and — though I have a hard time believing I heard this correctly — 80% of migraineurs who have PFOs closed report some degree of migraine relief following the surgery.

My fingers are crossed until I get the test results tomorrow.

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Surgery for Migraine and Headache: Does it Work?

Nerve stimulation, nasal surgery/septum repair, cutting muscles in the forehead and PFO closure are the surgeries commonly mentioned as headache treatments. A lot of press coverage doesn’t necessarily equal efficacy. They are all still in early phases of clinical trials. Recent opinions I’ve come across aren’t encouraging.

I’ve had two of the four — an occipital nerve stimulator and nasal surgery — and don’t intend to try a surgical treatment again. Neither surgery was effective for me and I sometimes wonder if the nerve stimulator made my migraines worse.

Surgery is so commonplace that it is normal to consider it as a remedy for so many illnesses. No matter that general anesthesia is always risky and there’s a potential for complications — including that it may worsen the condition. Not to mention that its expensive and invasive and may not even work.

I’m not saying that because my surgeries were unsuccessful yours will be too. I do caution you to take it slowly. Research the procedure as much as you possibly can. Ask your doctor every question that you have, no matter how silly or small it may seem. This is your body. The doctor may have the expertise, but you are the only one who really knows yourself.

If you have the slightest inkling of discomfort with your doctor, find someone else. If he or she tells you in your first appointment that surgery is just the thing for you, find someone else.

Although surgery may feel like your last hope, it rarely is. Few people have truly tried everything. If multiple doctors say you’ve tried everything, it’s time to get on the internet and learn what else is out there. Online forums are a great place to start. (I’m partial to The Daily Headache’s online support group and forum, but there are lots of good ones.) Maybe you’ll discover that you have tried everything; maybe you’ll find a not-so-well-known treatment works for you.

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Closing Hole in Heart to Treat Migraine: PFO Closure Study Findings Not Promising

pfo closure migraine study

Studies linking migraine with a hole in one’s heart have been big news in recent years. Preliminary studies showed promise. Results from a large trial, MIST-I (Migraine Intervention With STARFlex Technology), are finally available — and they aren’t good. Researchers concluded that “no significant effect was found for primary or secondary end points.

Background
The hole, called a patent foramen ovale (or, more commonly, PFO), is an opening between the upper chambers of one’s heart. Some migraineurs who had PFOs closed for another reason reported that their migraine attacks stopped or were much less frequent after the surgery.

The hole is present in fetuses to allow blood to pass from one side to the other. In most people, the gap closes at or after birth. For an estimated 25% of the US population, it doesn’t close completely and the PFO forms. This remaining tunnel functions as a valve. Normally the valve is shut, but sometimes remains open, sending blood that’s supposed to go to the lungs off to the brain and other parts of the body.

MIST Study Findings
My head is too bad to give a good summary, so here’s what cardiologist and blogger Dr. Wes had to say:

This week’s Circulation (on-line version) released the much anticipated MIST trial (Migraine Intervention With STARFlex Technology) results which randomized 147 patients with a moderate to large PFOs between implantation of a STARFlex PFO closure device and a sham (or placebo) procedure.

The study’s primary efficacy end point was migraine headache cessation during the analysis phase. It was derived from diary data.

Secondary efficacy comparisons were incidence of migraine during the healing phase; change in the severity of migraine attacks based on MIDAS (over a 3-month retrospective period) and headache impact test (HIT-6) (over a 1-month retrospective period) scores; change in the frequency of migraine attacks other than elimination of attacks; change in the characteristics of migraine (with or without aura and change thereof); change in the severity, frequency, and character of migraine relative to effective closure rate or presence of residual leak; and change in quality of life based on the SF-36 questionnaire (over a 1-month retrospective period).

Dr. Wes notes that Peter Wilmshurst, one of the original main lead researchers is not included in the manuscript. At a conference last year, Wilmshurst claimed study data were not managed correctly.

Many PFO closure studies, like PREMIUM and ESCAPE are still happening. As is MIST-III, a longer-term trial with the same device as MIST-I. I’m not ready to dismiss PFO closure for migraine. This trial was a pretty big deal, but other study results are necessary. I guarantee I’m not letting anyone near my heart unless there’s strong evidence for doing so.

[via Kevin, MD]

Graphic from Cleveland Clinic’s PFO page.

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This Time Last Year, March 11-17

Posts from The Daily Headache, March 11-17, 2006

Reporting on Narcotics & Headache: What a Mess
A look at an article in ABC’s three-part series on migraine that I was really upset by. Reviewing the article, I saw something that now makes a lot of sense to me:

“. . . Long-term use of narcotics can actually magnify headache pain and could render other treatments ineffective.

“‘Not only does it deplenish your own natural painkillers,’ he said, ‘but it destroys parts of the brain that are responsible for fighting pain.'”

The story clearly wasn’t as awful as my gut reaction indicated.

Preliminary Results for PFO Closure Trial
The MIST study examining whether closing a hole in the heart is an effective migraine treatment reported mixed results, depending on the journalist’s perspective.

ABC on Migraine: It Gets Worse
The final installment of the series looked at a nasal surgery that some are using to treat migraine. This same surgery was ineffective for me (and for many others, I have since learned), so I’m skeptical of it. The article’s author does describe unfavorable opinions of the surgery.

Toxicity of Tylenol
Acetaminophen is far from benign: Overdoses of products that contain acetaminophen account for 40 to 50% of all acute liver failure cases each year in the United States.

Healthcare Provider of the Year
The National Headache Foundation‘s call for entries for this award. I can’t find who won last year, but I did see that nominations were requested for this year — but were due yesterday. Sorry, it’s the first I heard about it.

Pill-Taking Woes Resolved
A handy dandy gadget for pill swallowing ease.

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Closing Hole in Heart to Treat Migraine

By now you’ve probably heard about studies linking migraine with a hole in one’s heart for some people. It was much ballyhooed in the media in the first six month of the year, but generally with little information to explain what it was, who might have it and how it was tied to migraine. I’ve been asked about this topic recently and realized that I’ve neglected it here. So I’m changing that.

pfoThe hole, called a patent foramen ovale (or, more commonly, PFO), is an opening between the upper chambers of one’s heart. The hole is present in fetuses to allow blood to pass from one side to the other. (The graphic is from Cleveland Clinic’s PFO page, click on it to enlarge it.)

In most people, the gap closes at or after birth. For an estimated 25% of the US population, it doesn’t close completely and the PFO forms. This remaining tunnel functions as a valve. Normally the valve is shut, but sometimes remains open, sending blood that’s supposed to go to the lungs off to the brain and other parts of the body.

This isn’t an issue for most people with PFOs, but there’s always an exception. Some patients who had PFOs closed for a reason unrelated to migraine have reported that their migraines were gone or didn’t happen as often after the surgery. Thus spurring research into whether surgery to close PFOs is an effective treatment for migraineurs.

The evidence so far indicates that migraineurs who have auras may have more success with PFO closures than those without auras. Some articles I’ve read limit the population to people with auras, but others include all migraineurs.

The first migraine-specific study of PFO closure with a large population, called MIST, is underway in the UK. Results are expected to be announced next spring. There are two upcoming studies in the US. The one listed on NIH’s clinical trials site is called Paradigm II. Recruiting hasn’t begun, but eligibility details are available. Another, ESCAPE, has received conditional approval from the FDA.

The best site I’ve found for easy, straight-forward information is on MIST’s website. Although the study is no longer recruiting participants, the site explains the components of the problem and gives evidence supporting a connection between PFO and migraine. An overview of all this information is also available in PDF. An article in Science News has another terrific introduction.

Fellow blogger Teri Robert of Putting Our Heads Together has also blogged about PFO recently. Her take on it includes more detail than this one so make sure to check it out.