“Coming Out” As A Migraine Sufferer (and why we don’t)

You have migraine? Sssshhhh… don’t tell anyone!

Has anyone ever given you that advice? Well, whether they have or not, chances are good that you’ve been reluctant, at one time or another, to admit that you have migraine.

Wendy Thomas, Chief Executive of The Migraine Trust, tells her story of moving to a small village about 15 years ago. Because of her interest in migraine, she eventually found out that there were six people in the village who suffered from migraine attacks.

But guess what? Not one of them knew that any of the others had migraine!

Closed mouthWhy don’t we talk about it? Here are some possible reasons – feel free to add your own.

  • Superstition: If I talk about it, or even think about it, I might get migraine (or have an attack). If you think that you’re likely to change your physiology and genetics sufficiently just by mentioning to someone that you have migraine disease, or by discussing it with someone, you might also be worried about getting cancer by giving to cancer research.
  • Bad Memories: Some people don’t want to think about it or talk about it because the memory is painful. Why not be free of migraine when you’re not actually having an attack? Live a “normal” life instead of thinking about the disease?
  • Fear of disbelief: Some people are afraid (with reason, I’m afraid) that people won’t really believe them – that is, they’ll write off migraine as negative thinking or work avoidance, or “just a headache” (as if a headache is nothing!).
  • Fear of loss: Loss of a job, loss of friends, loss of opportunities. Will someone think that I can’t be trusted, because I have migraine? That I can’t get the job done? Even if it’s not true, the perception may be there.

These are not all reasons that are easily overcome. And yet, if no one talks about it, the results may be even more negative. Consider:

  • If no one wants to think about migraine between attacks, no one will want to give to migraine research. (Hey, consider giving a small amount right now – USA residents, UK residents, Other)
  • If no one talks about migraine, there will be no progress/research. Not just worldwide research, but even understanding your own condition better, and finding better treatments. While you’re in agony may not be the best time to find better solutions.
  • Talking to your doctor. Guess what? A lot of people will self-medicate for years before ever finding good treatments. Talk to a doctor who knows your medical history. Go to a specialist. Stop putting it off. Make an appointment today.
  • Feeling alone? Of course, because no one wants to talk about it. No, don’t dwell on it and obsess about it. But it’s a part of your life – be open about it and share, especially with others who are suffering or who have loves ones who are suffering.
  • Improving the lives of those around us is important. How many other people at your place of work may have migraine, or may in the future? At your school? Place of worship? It may be that you can recommend small improvements that will make life better for someone else.

Listen, this isn’t about selfishly making sure everyone knows how miserable you are. This is about everyone helping everyone.

Are you afraid to talk about migraine? Maybe you’re not ready to shout it out to the world. But maybe you can make a small difference today by talking to a family member, or your doctor. Make a small donation. If nothing else, leave a comment here or on Facebook.

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10 Highlights from the past 3 Months (June 2016 edition)

Yes, June is coming to an end already! And it’s time to see which posts have been most popular here at Headache and Migraine News. This is your chance to catch up on what you may have missed.

As usual, the most popular posts come first, but the posts in bold currently have the most “likes” on Facebook.

  1. What Does Tinnitus Sound Like?
  2. Are You Taking These Common Medications (that could hurt your brain?)
  3. Chronic Migraine: Losing the Ability to Control Pain
  4. Why Headache Patients Are Running from Esomeprazole (Nexium) and other “Heartburn” Drugs
  5. Thyroid Headache
  6. Silent Migraine Symptoms – Should I Be Worried?
  7. Migraine as Virtual Reality (Don’t Miss This Video)
  8. Sore Muscles? The Migraine, Headache and Depression Connection
  9. Doctors: Use This Tool To Diagnose Chronic Migraine
  10. RhinoChill Cools the Brain and Body – Could it Stop Migraine Symptoms?
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Zecuity Patch Sales Halted Over Burn Concerns (important information)

Zecuity, the skin patch for migraine, has had a bad month.

On the 2nd of June (this month), the FDA announced that they are investigating the risk of burns from the patch:

The U.S. Food and Drug Administration (FDA) is investigating the risk of serious burns and potential permanent scarring with the use of Zecuity (sumatriptan iontophoretic transdermal system) patch for migraine headaches. We are investigating the cause and extent of these serious side effects and will update the public with new information when our review is complete.
FDA Drug Safety Communication

Zecuity packageOn the 10th, Zecuity manufacturer Teva Pharmaceuticals decided to temporarily stop sales and marketing:

Teva has been working closely with the FDA to examine reported adverse skin reactions associated with ZECUITY usage. At Teva, we are deeply committed to the safety and well-being of people who use our products. As such, we have decided to engage in a voluntary suspension of the sale, marketing, and distribution of ZECUITY while we continue our investigations into the root cause of these adverse skin reactions. In keeping with this market suspension, we have initiated a pharmacy-level recall of the product.
Letter from Teva

Patients are advised to stop using the Zecuity patch right away.

The symptoms some patients have reported include itching, burning, and other pain. Some of the skin reactions were not resolved after several months.

It’s not clear exactly what is causing these reactions. This is, of course, a well-tested product. It’s hard to speculate whether the product could actually return to the market as-is with further warnings/instructions, or if it will have to go back for further testing.

Zecuity is a method to take sumatriptan. If any medication can be taken in many ways, it’s sumatriptan. However, as we all know, there are those out there who have probably been helped by Zecuity who haven’t been helped by other treatments. (More on this product)

Another issue is that this technology holds great promise for other migraine treatments and beyond. It would be a shame if there was another major setback, although hopefully this will be an opportunity to further improve skin patch products.

Important to know:

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Important Announcement: Migraine Summit Library

I’ve started going through all the wealth of information from the Migraine World Summit, which was held back in April of this year. As you probably know by now, the summit included 32 interviews with researchers, doctors and advocates in the fight against migraine from all over the world.

After the summit, the interviews were made available for purchase as a one-of-a-kind cutting edge library of migraine information.

But that library will only be available for purchase until this Thursday, the 23rd of June, at 9pm EST. At that time the website is going to be revamped to further serve those who are already using the service.

As it has turned out, the conversations have continued, and the website will be used for those who have invested in the materials, so that they can continue to process and discuss the information, and the new research that is coming out.

The VIP Access Pass includes a lot more than just the interviews. Here’s a breakdown:Migraine World Summit Library

  • The 32 interviews include experts from Stanford University, Harvard University, the National Headache Foundation, the Cleveland Clinic, Migraine Trust, and much more. And you get not only the video interviews, but an mp3 version and the full transcript to read. As I said before, this is a one-of-a-kind library with absolutely cutting-edge information about migraine from some of the top experts from around the world.
  • Lifetime access to a private support/discussion group.
  • A full treatment directory with clinical evidence.
  • Trigger guide
  • The Treatment Plan Checklist and 5 Mistakes Migraineurs Make booklets.

At this time there is nothing else like this library of information. As one person who attended the summit said,I learned more in 5 days than I have in all those years…

Until Thursday you still have a chance to purchase the library and also be a part of the ongoing discussion.

To find out more, visit the Migraine World Summit Access Passes page.

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Yes, Children Get Cluster Headache Too

Although cluster headache usually starts in your 20s or 30s, children can, and do, get cluster too. Usually the symptoms start after the age of 10, but children with cluster have been reported as young as 6 years old.

Cluster Headache in ChildrenThe fact that cluster headache is extremely rare in children is no comfort to children who get it and their families who are trying to help them. Although we’ve talked about cluster headache in children before, it’s time for an update.

As with adult cluster, more males are diagnosed than females. However, a surprising number of girls get cluster as well.

But one of the biggest challenges is diagnosis. A study in 2009 of eleven children found that, on average, their symptoms began at the age of 8.5, but they went two years without a proper diagnosis.

Sadly, headaches in children are often considered to be caused by “stress” or “attitude”. However, a specialist who know what questions to ask can get to the truth a lot faster.

Another challenge is that cluster headache is not usually constant. Attacks typically last from 15 minutes to three hours. But they also go into remission. Headaches may occur once or several times a day for a while, and then disappear for months or years.

Symptoms in children tend to be similar to those in adults. That would include agitation and restless movement, one sided pain, congestion, and facial flushing and sweating. (For more detail, see Cluster Headache Symptoms)

Treatments for cluster are also similar to treatments in adults, partly because precious little study has been done specifically for children. One study found that oxygen, methysergide, verapamil, zolmitriptan and dihydroergotamine were particularly helpful for children, but that paracetamol/acetaminophen, ibuprofen and codeine with paracetamol/acetaminophen were not particularly helpful.

For more information:

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