Patient Education, Resources

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.

Doctors, Treatment

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.

Books & Products

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.)

Society

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.”