Jennifer Hess, a ChronicBabe contributor, knows that eating minimally processed foods without many additives helps keep her pain under control. Instead of eating junk when she’s exhausted, in pain and can’t think, she has invested in good kitchen tools and always has easy-to-prepare, good-for-you food on hand. Jennifer shares her secrets in Chronic in the Kitchen! Tips to Keep You Cooking.
Posting links to news reports related to headaches and pain has made me increasingly uncomfortable. It is important to stay on top of what’s happening with our disease, but reading headlines and brief, one-sided reports isn’t enough.
Media outlets do serve the important role of messenger, but the primary goal of newspapers and radio and TV stations is financial gain. Hailing the miracle cure, shocking study results or any extreme position gets attention, which in turn brings in money. I don’t say this to be critical, but to point out the inherent contradictions in reporting.
Reporters and news sources do have a responsibility to improve the quality of medical reporting, but we’re doing ourselves a disservice waiting for the industry to change. Patients have a responsibility to digest information critically. As I wrote in yesterday’s post about nerve stimulators, we have to question what we learn – no matter if we learn it from the media, doctors or alternative health care providers.
These are some questions I ask when I evaluate news.
- Is the proclamation in the headline supported by the findings described in the article?
- Is only one point-of-view presented? Who else may provide a valuable perspective?
- If it’s about a study, is it the first one to have these results? If not, are the findings consistent with those in other studies?
- Is cause and effect stated or implied in the article? If so, does the information in the article support this conclusion?
- Are the side effects covered adequately? Could there be side effects or complications that aren’t addressed?
While writing this post, I found Health Compass, an excellent resource on how to evaluate the reliability of health information. Although the focus of the site is aging, the lessons apply to anyone seeking medical knowledge.
As for The Daily Headache, I sometimes blog about news that doesn’t hold up to these standards. I actively decide if it’s worth sharing even if it doesn’t fit, but I don’t always tell you why or even that I’m doing this. I’ll try to be clearer in the future.
Desperation makes ignoring pitfalls easy. Choosing a treatment without much clinical research to back it up or expose its shortcomings, like nerve stimulation, shouldn’t be done lightly.
The downsides that aren’t covered in the media? Just as the body tends to “outsmart” meds after a while, a nerve stimulator may stop working over time. Also, the surgery itself, or having a device implanted in your body over the long haul, may complicate or increase your pain. Notice that both of these sentences contain the word “may.” Studies on nerve stimulation for chronic headache are underway, but these are among the many questions yet to be answered.
The first of the occipital nerve stimulators are being tested now. One may prove to be better than another or all of them may need to be modified to work effectively in the future. Stimulators available five years from now will almost certainly be better equipped for this particular application. Or they may be abandoned altogether as a nonviable option.
Any doctor researching nerve stimulation, no matter how pure his or her intentions may be, would love to be the one to find The Answer for chronic headache. Of course they are excited about implanting a nerve stimulator. Not only do they have a chance to help you, they can also learn more about the device. This isn’t necessarily bad; just make sure your reason isn’t lost in their enthusiasm.
Docs aren’t all-knowing, particularly in an area that’s so new. Ask questions and make sure the answers are satisfactory. “We don’t know that yet” is an acceptable response only if you’re willing to take that risk. I was and I’m glad for that, but I do wonder if I will have regrets in the future.
Claire’s Head, a novel that will be released in the US in September, is a stunning depiction headache pain and treatment, desperation, and hope. Written by Catherine Bush, a migraineur, the novel is an examination of the relationship that someone with migraines has with him or herself and with others. Even if your headaches aren’t migraines, the struggle is probably familiar.
An Amazon review I read said that the first 150 pages are good, but the descriptions of headaches get old. The repetition might be annoying, but that’s the point. Frequent disabling headaches are bothersome and do interrupt the plot – whether it is the plot of fictional characters or real people.
If you have a hard time telling your loved ones what your headaches are like, pass this book on to them. There’s no way anyone can deny the reality of the pain after seeing it spelled out so well in this novel.
I feel like I’m writing an 8th grade book report when I say this, but reading Claire’s Head was like reading my own diary.
Note added Aug. 16, 2005: I copied this review so I could include it in an Amazon review and realized that I didn’t include a major part of it. While my ego would prefer if I just ignored this fact, I can’t mislead my dear readers.
The truth is, the book is great for showing the agony of headache, but isn’t a compelling novel. The plot isn’t believable, which makes the story boring. I still recommend the book, as it is great for showing headache pain, but don’t expect to have your socks knocked off. Despite this, the characters’ agony was enough to engage me for the first two-thirds of the book.
Sorry for the oversight.
Research examining how gene mutations influence brain cell communications of migraineurs has been published in the Canadian journal, Proceedings of the National Academy of Sciences.
Researchers Make Headway in Mystery of Migraines