A 2002 Time cover article on headache describes current migraine research — and the heretofore lack of said research — and what it means for people with headache. As the article says, “What [the research] all adds up is a revolutionary view of extreme headaches that treats them as serious, biologically based disorders on a par with epilepsy or Alzheimer’s disease.”
It’s a hopeful piece that shares the fascinating biology of headache as well as what headache sufferers actually go through. Although the article is three years old, it’s a step toward educating others that Tylenol doesn’t trounce migraines, chronic daily headaches and cluster headaches.
Now articles need to use this quote from the book Migraine and Other Headaches:
“In general, headache sufferers are worse off than people who have arthritis, roughly similar to those who have congestive heart failure severe enough to interfere with walking up and down stairs and only slightly better than people with AIDS.” (from All in My Head, by Paula Kamen, page 282)
The Time article is a must-read for people with headache and their loved ones. And it includes an awesome graphic of the path of a headache (you’ll find it under the graphics section of the sidebar).
Amazon has discounted All in My Head to $5.99. I’m sad to see that this book, which addresses topics that resonate with and chill chronic headache sufferers, has already been sent to the bargain basement.
It’s a must read for people with headache — and a should read for their families. If you haven’t read it already, please consider buying it. You’ll learn a lot and contribute to our revolution for 75% off the list price.
Read my take on the book here, on ChronicBabe, on Salon or the Boston Globe. (Links to reviews courtesy of ChronicBabe.)
Our options for headache preventives suck. Yeah, some work for some people and it is a matter of trial and error based on each person’s needs, but there aren’t any consistently effective drugs available. All in My Head author Paula Kamen shares this disconcerting information:
“…I heard a variety of doctors clearly make an assertion again about the inadequacy of the currently available preventives. ‘Interestingly, a majority of commonly used [preventives] have little evidence of efficacy. In contrast, almost all options have well documented adverse effects, often leading to a discontinuation of preventive therapy,’ read a summary in the program book leading to the presentation of Dr. David W. Dodick, the well-respected director of the Headache Program at the Mayo Clinic branch in Scottsdale, Arizona. This time the assertion was backed up by the citation of many studies, including a major federally sponsored one for 1999 done at Duke University.” (Page 285)
If current understandings and expectations of a new compound, called tonabersat, play out, we may get a preventive of our very own. Tonabersat is the first in a class of compounds called “gap junction blockers.” (“Gap junction blockers” refers to the overall class or type of compound, just like “antidepressants” refers to a group of different drugs.) Targeting a different type of brain action than other drugs that are used as preventives, gap junction blockers are thought to be a breakthrough for headache prevention.
Depending on how you look at it, there’s either a lot of promise or a lot of hype for tonabersat. Some of the soundbites include:
- “Tonabersat is an extremely interesting compound with a novel and very specific mechanism of action which means it is likely to be effective in prophylaxis of migraine.” (According to a past president of the International Headache Society who is working with the clinical trials)
- “Given the clear demonstration of clinical activity with tonabersat in previous migraine studies, we anticipate it showing real benefit.” (Said the CEO of Minster Pharmaceuticals, the company that bought the rights to tonabersat and will develop the drug)
- Tonabersat “represent[s] the first major advance in the treatment of migraine since the introduction of Imigran [Imitrex in the US].” (From GlaxoSmithKline, who identified the initial compound and is expected to market the drug if it is approved)
I am wearily intrigued. A good headache preventive would be invaluable, but there are so many obstacles left that I can’t get excited yet. Trials are in the early stages. Results aren’t expected for a couple years and FDA approval won’t come until long after that. The drug may turn out to not be effective or may have unbearable side effects. Or it could work great and makes us all happy. Or be somewhere in between.
To learn more about the study, see the press release or the blurb in the Cambridge Evening News. For more about tonabersat, see Minster Phamaceuticals‘ product overview and company profile.
All in My Head, the headache released memoir earlier this year, is not the self-indulgent rant that the New York Times summed it up as. Instead of taking center stage, author Paula Kamen’s experience with chronic headache frames medical information and cultural critique. Her critical approach encourages readers to question what they think they know, what they’re told and what they read.
In her more than 15 years of pain, Kamen has tried a vast array of treatments, from mainstream medicine to alternative treatments. She’s learned why some work, why others don’t, and why so many stop working over time. Kamen has also figured out ways to cope with the pain without denying the reality of it, but without wallowing in it either.
Reading about her journey, your headache knowledge will increase and you’ll laugh a lot. Like when you read the conversation she had with her therapist in the mid-1990s about finding support in online chat rooms. (One of the therapist’s responses was, “Your computer has rooms in it?”)
ChronicBabe’s review examines the models of coping that are traditionally available to those with pain and praises Kamen’s new approach. Links to more reviews and snippets of praise are at the end of the article. If you’re still not convinced, maybe these bits of wisdom that I gleaned from the book will win you over.
- Headache sufferers are considered to be more disabled than people with arthritis, about equal to those with severe congestive heart failure and only slightly less disabled than people with AIDS
- A majority of preventive meds have little evidence of efficacy
- Elvis Presley had migraines and the drugs that were in his system when he overdosed were common migraine treatments in the 1970s