seeking joy in a life with chronic migraine, chronic daily headache and chronic illness
The Epilepsy Therapy Development Project‘s website has the most comprehensive information on anticonvulsants that I’ve seen. It is thorough and broken down in a clever way, so that you can see the basics or intermediate or advanced information.
Here are links to the site’s descriptions of epilepsy drugs that are frequently used migraine and headache preventives:
Many thanks to Pam for pointing out the site!
Julie Carter and her three daughters all have Chiari malformation, a rare abnormality at the base of the brain that results in brain tissue extending into the spinal canal, which causes severe headaches. Nearly a half a million dollars in debt from brain surgeries, they lived in a refurbished chicken coop. An advocate for Chiarians and founder of Chiari People, Julie and her family have a new home courtesy of Extreme Makeover Home Edition.
Chiari has more than 85 possible symptoms and is frequently misdiagnosed as migraine or a host of other headache disorders. Other conditions associated with Chiari include syringomyelia, scoliosis, tethered spinal cord and pseudotumor cerebri.
The show’s executive producer said they received more nominations for Julie than they ever have for any one person. The builder of the home has an excellent profile of Julie Carter and day-by-day photos of the project. Some places to learn about Chiari malformation:
If you know of good Chiari resources, please leave a comment.
The show airs on ABC this Sunday, October 21.
Being an informed patient sometimes means feeling like you know more than your doctor does. Sometimes this isn’t just a feeling, but a fact.
In Why Doesn’t My Doctor Know This?, Dr. Kent Holtorf explains that “. . . [T]he overwhelming majority (all but a few percent) of physicians (endocrinologists, internists, family practitioners, rheumatologists, etc.) do not read medical journals. When asked, most doctors will claim that they routinely read medical journals, but this has been shown not to be the case.”
I don’t want to believe this statement, but with schedules crammed tight and overwhelming paperwork, it’s no surprise that some docs can’t keep up on all the research in their fields.
So the patient must step in. If you read about new study findings, look into more yourself. Many of the news articles will parrot each other, but dig around for the study abstract for more details. If the study is only of people with migraine with aura, and you don’t have auras, there’s no indication that you will benefit from the treatment in the article.
Don’t just bring in an article and ask, “What can you tell me about this?” Take concrete questions to your doctor. Does this treatment apply to you? Have other studies supported its findings? If your doc can’t answer your questions right away, ask that he or she get back to you.
If your doctor doesn’t act on the information, don’t assume that he or she is lazy or unwilling to work with you. One study does not prove a treatment is effective, future studies frequently contradict previously published research, or the approach may not be right for you.
However, if you feel like you are frequently stonewalled, being disrespected or not adequately treated, there’s always the option of shopping for another doctor.
[via We Are Advocates]
In one comprehensive page, the National Headache Foundation responds to common questions about migraine as well as tension-type, cluster, sinus, rebound headaches. The short answers include links to comprehensive information. Questions include:
Explaining to my family, friends and employers that my migraines are debilitating has been challenging. There are many misconceptions about headache disorders and migraine, so people don’t understand the difference between an occasional headache and CDH or migraine.
The best way I’ve found to let those around me know the seriousness of this illness is to let them see me in the throes of a migraine (which is not an easy feat). If the people in your life are willing to talk about your pain, there are many good resources to explain the severity of the illness.
The best resource I have found is a book called Chronic Pain and the Family, which I reviewed on Blogcritics. (If you decide to buy the book, I’d appreciate it if you went to Amazon through the link from my blog rather than Blogcritics — it helps pay for The Daily Headache.)
There are other good resources that won’t cost you anything, like these significant facts about migraine:
The National Headache Foundation has terrific information on how headache affects a sufferer’s life. This fact sheet (PDF) describes migraine and its suspected mechanics. It even recommends a children’s book that explains the disease to kids. ACHE also has good information.