Terrific New Headache Website

The Canadian Headache Society and Headache Network Canada have joined forces to create an awesome headache website. It’s full of information to people who are new to researching headache and has great resources for the seasoned veteran. Topics include diagnosis, tests, how frequency of headache affects treatment options, and drug and non-drug treatments.

My favorite part is the headache diary that can be printed or filled out in Excel. The form is thorough and easy to complete. This terrific tool can help you track if your headaches are better or worse and how debilitating they are, how the pain varies throughout the day, and which meds work for you.

Claire’s Head Released in US

The US version of Claire’s Head is now available. It’s a great novel to show how agonizing migraine pain and neurological symptoms are. The plot isn’t so believable, but it’s still a good read for headache sufferers and their families. If you’re interested in more of my opinions :), see this longer review.

Fortunate

The more horror stories I hear, the more I realize how lucky I’ve been finding doctors. I haven’t avoided crackpots entirely, but most of my care has terrific care.

Some of this is because I’ve lived in two cities with large programs in academic medicine, so I’ve been in the right place. I’ve also been there at the right time; rumor has it that my first headache specialist isn’t taking new patients. While I had to wait 6 months to see my new specialist, that’s better than no chance at all.

I saw this new headache specialist last week. One of her first comments was that my first doc has a tremendous mind. I’ve praised him many times already, so you know I think he’s brilliant. Having her confirm it at the outset was somehow reassuring. She proceeded to treat me like a human being who is involved in my own care.

In the 45 minutes she spent with me, she answered most of my questions before I even asked them. She respected my opinion and asked questions about the blog. She also told me that she’d like my help if she ever had time and staff to start a support group. We even discussed whether Trexima is all about retaining a patent on Imitrex, how drug companies ration triptans with packaging and how inaccessible triptans are for so many patients. I left the office with six prescriptions, a written list of four abortive options I’ve never tried (mostly drug combinations), and a goody bag containing $500 in drug samples.

When I needed a doctor who’s a research superstar, that’s what I found. When I needed one who stays on top of research but is patient-focused, that’s what I found. (Not to say that my first doc didn’t answer questions, discuss interesting things with me or care about me, but they have different approaches to their life’s work.)

Because I know that many of you have been through countless doctors who don’t give you the time of day, I feel like I’m bragging. That’s not my goal; I merely want to express how thankful I am for my good luck. I was so frustrated when I was searching for a diagnosis and trying drug after drug, none of which worked. But I know I have endured far less than many other headache sufferers.

I’m sorry that so few people get the respect and treatment I have received. That’s one of the reason for this blog. Raising awareness of our plight is essential for health care professionals and society at large to accord our illness with the attention and research it requires. I’m a small fish with huge plans.

All in My Head Discounted to $5.99

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.)

What’s That Saying?

You know, the one about power and corruption?

Ex-Head of FDA or Wife Sold Stock in Regulated Area

"Dr. Lester M. Crawford, the former commissioner of the Food and Drug Administration, or his wife sold shares in companies regulated by the agency in 2004, according to financial disclosure forms.

"The sales may have played a role in Dr. Crawford’s sudden resignation from the agency last month after only two months as its leader."

Possibilities for a Better Headache Preventive

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.

Melatonin, Sleep & Migraine

Whether or not melatonin is an effective to fight insomnia is still under debate. A recent study indicates that when you take the medicine affects how it works in the body. Researchers report that it was most effective when taken in sync with an individual patient’s sleep cycle.

They warn that people shouldn’t self-medicate with melatonin. The lead researcher says, "This is all very complicated. If you give melatonin at the right time of day it can be effective. But if you give it at the wrong time it can make sleep problems worse."

Melatonin may or may not be an effective migraine treatment. A small study published last year shows that taking the supplement 30 minutes before bedtime can help reduce migraines. But headaches can also be a side effect of melatonin. I took it for a while, but stopped because it increased my headaches and made me drowsy. I was told that in my previous headache specialist’s practice, some patients didn’t have side effects at first, but developed them after a few months.

Obviously there’s no conclusive evidence or prescribing guidelines here. If you’re interested, you should definitely talk to your doctor about it. Supplements don’t have to meet ingredient requirements, so one kind can vary dramatically from another. It may also interact with other common headache meds.

An article in UC Berkeley’s Wellness Letter issues these warnings about the supplement:

  • Having your levels measured won’t tell you anything, since levels vary from person to person and from hour to hour.
  • Chronic use of melatonin supplements may suppress the body’s own  production of the hormone.
  • Nobody knows what might happen if you have high natural levels and take a supplement on top of that.
  • Melatonin can interact with other hormones, which is why, in part, pregnant women and children should never take it.
  • Such drugs as aspirin, beta blockers, and tranquilizers can affect melatonin levels.