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Teri Robert

Some more Bad Advice (for Migraine patients)

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Thanks! But no thanks.

Every once in a while it’s good to be reminded that a lot of the advice we’re given is, sadly, not worth a lot. Teri Robert, in her book Living Well with Migraine Disease and Headaches, gives these “great” examples:

  • “It’s all stress. Learn to relax.”
  • “Get pregnant. Your headaches will stop.”
  • “Have a hysterectomy. Your Migraines will go away.”
  • “Congratulations. You’re an intellectual and have Migraines. Take some acetaminophen.”
  • “Just wait for menopause. Then they’ll stop.”
  • “You’re too high-strung and have a headache personality. See a psychiatrist.”
  • “It’s a woman thing.”
  • “If triptans don’t work, it’s not a Migraine.”
  • “It’s just something you’ll have to learn to live with.”
  • “Just take a nap when you get a headache.”
  • “Stop taking everything so seriously.”

Ouch. In case we don’t believe it, Teri notes beside the fourth one on the list that she personally actually did have a doctor tell her that once!

Have you ever been told any of the above? Or do you have another not-so-brilliant piece of advice that you’ve been given? Share it in the comments.

Incidentally, you can read some good advice if you get Teri’s book, but she does remind us in this chapter that hitting the person who says something like this probably isn’t the best. Instead, “Politely tell the doctor that his or her services will no longer be needed, then leave.”

New in the USA: American Headache and Migraine Association

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Many migraineurs in the USA have expressed the desire to have a patient operated organization focusing on headache and migraine.  Well – good news!  The dream is becoming a reality!

American Headache & Migraine Association

The American Headache and Migraine Association (AHMA) has been created with the help of the American Headache Society (AHS) as a result of a vote on June 21st.  The new organization will have a 10 member board, with 5 patients and 5 AHS members.  Long time migraineur advocate and health writer Teri Robert will chair the board, and Dr. Paul Winner, chair of the ACHE (the American Headache Society Committee on Headache Education), will co-chair.  It will be a part of ACHE.

This organization is all about patients connecting.  More information will be coming soon, but in the meantime we know that a website is going to be up soon, and that you’ll be able to join at a very modest fee ($15 per year), and that the first conference is already planned!

That’s right – write it in red on your calendar (or perhaps a more migraineur-friendly color) – November the 17th 2013 in Scottsdale, Arizona!  This is actually at the end of the AHS Scottsdale Symposium, which means some of the country’s top specialists will be available to interact with – you!

Stay tuned for more information!  Meanwhile, learn more about the not-so-secret origins of AHMA in this article from Teri Robert.

Living Well with Migraine Disease and Headaches – New low price!

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Teri Robert’s migraine and headache classic Living Well with Migraine Disease and Headaches: What Your Doctor Doesn’t Tell You…That You Need to Know (Living Well (Collins)) is on sale!  I’ve never seen it at such a low price on amazon.com.  If you don’t own this book, it’s an excellent reference to have, and an excellent time to get it!

Here’s the publisher’s blurb:

For millions of Americans, Migraine disease, tension headaches, and other headaches are a debilitating part of every day.

Teri Robert has been there—in fact, she experienced her first Migraine at age six. Now, in this groundbreaking holistic guide to the diagnosis and treatment of headaches and Migraine disease, she brings a patient-empowering message to all headache sufferers: you don’t have to live with daily pain. She provides you with all the information you need to know about getting the help you need, including:

  • Understanding side effects
  • Treatments for long-term relief
  • Risks and symptoms
  • Identification of the various types of headaches
  • Traditional and alternative therapies
  • Information on finding health care practitioners and support
  • Numerous case studies and expert advice

Vasodilation and Migraine – The fall of a theory

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Blood vessels have sometimes been described as "smart pipes".  Not only does blood move through them, they are also involved directly in controlling the rate of flow.  They can get bigger and smaller, processes known as vasodilation and vasoconstriction.

Once upon a time, migraine was known as a "vascular" disorder.  In fact, some form of this theory has been around for 350 years.

Migraine and Vasodilation in The Lewiston Daily Sun 1974
The Lewiston Daily Sun, May 1974

The idea was that the dilation of blood vessels directly led to the pain of migraine.  And so, some treatments focused on constricting the blood vessels.

There were various clues that led researchers to buy into the theory.  For example, ergotamine treatments also seemed to constrict the blood vessels, as it calmed the migraine attack.  And, in fact, the very popular Triptan drugs were developed as vasoconstrictors!  Now we believe that they work for a totally different reason.

But in recent years, the vasodilation theory has been falling apart.

First, we discovered that the migraine process was much more complex.  Though vasodilation may happen, there’s much more to a migraine attack than just changes in the blood vessels.

So vasodilation is not the key element of migraine.  It’s not enough to explain migraine symptoms.

Not only is this not a sufficient cause, we now know it’s not even necessary.

Migraineur advocate Teri Robert, reporting on a presentation of the American Headache Society in November, summed it up this way – Vasodilation may occur as part of the disorder, but is not required for Migraine pain.  (Read Vasodilation Not Necessary for Migraine)

In other words, vasodilation may not happen at all in a migraine attack!

That doesn’t mean it doesn’t happen commonly, simply that it’s not required.  It may often still be a part of the process, but it’s not they key aspect, and certainly not the cause of all migraine pain.

The report at the AHS meeting, presented by Dr. Andrew Charles, also pointed out that some drugs that cause vasodilation do not cause migraine attacks.

What does this mean for the patient?

  1. We can now know that information claiming migraine is a "vascular disorder" caused by vasodilation of the blood vessels is out-dated.
  2. We can give a lower priority to treatments that claim to stop migraine by vasoconstriction.
  3. We don’t need to be afraid of medication just because it may cause vasoconstriction.
  4. We can be glad that the medical community is being freed from this erroneous idea.  This is actually opening the doors to new treatments that focus on other more foundational aspects of migraine.

Further reading: The vascular theory of migraine—a great story wrecked by the facts

Tomorrow – new Migraine Teleconference

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Migraine teleconference

Megan Oltman from Free My Brain From Migraine Pain will be hosting the very first Managing Life with Migraine Teleconference tomorrow!  The topic is Taking Charge of Our Migraine Care – What Do We Need to Know and Do to Advocate for Ourselves and Be Informed Medical Consumers, and the guest will be patient advocate Teri Robert.

I can guarantee, knowing what I know about these two, that this teleconference will be packed with useful information.  Not only will you hear good advice from Megan and Teri’s experience, you’ll also be able to call in and ask questions.

Now, the call is free, but there is not unlimited space and you do need to register.  You can register here.

And there’s more good news – Megan is planning to make this a regular thing, the last Sunday of each month, 4-5pm Eastern, 1-2pm Pacific.

Learn more about Megan and Teri, and go right now to register for the teleconference, taking place tomorrow.

Thanks Megan!  🙂

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