Migraine Design Project, Questions 4 & 5

Here’s the third installment of my answers to Molly’s questions. Molly has already heard from many of you and is thankful for your honest, unveiled answers to some tough questions. I’m sure she would appreciate any more answers that trickle in. To help with the design project, send your answers to her at mmcgee@risd.edu. (Does this read like an NPR fund drive script or is it just me?)

4. Are your family and friends or coworkers understanding of your pain?

Mostly yes.

My headaches became debilitating while I was in grad school and teaching. I often had to have friends cover for me. One friend in particular took many of my classes. He was very helpful and understanding at first, but I depended on him way too much. We’re not friends anymore. Most of my students were understanding, others weren’t. It mostly broke down by the feel of the class. The least understanding bunch was the semester when I missed three out of the four first classes. I never felt like I established a good relationship with them and they challenged me verbally more than any other class.

I worked at the place I wound up at after grad school for three years. The first year and a half I managed to hide my debility and work my butt off. Things went way downhill after that. Most of my co-workers were understanding and personally supportive, but I know that my missed deadlines and many absences were frustrating for others.

My friends and family are wonderful. Before I recognized how severely my health affected me, I lost several friendships because of my "flakiness." I couldn’t explain to them what was going on; I didn’t know myself. Other relationships have shaken out over time, but growing up has contributed to ending some friendships. Now I’m surrounded by people who believe and support me. And it’s terrific.

5. Finally, write anything you think is important. What is the most important thing you want to express about migraines?

Headache isn’t curable. It’s treatable and symptoms can be minimized or even disappear for many patients, but even these people still have the underlying disease. As someone who falls into the not-really-treatable category, the most important part of my treatment has been accepting that this disease isn’t going away. After many years of fighting nonstop, I’ve accepted that I will probably never have a pain-free day in my life. As much as this may seem like resignation, it’s not. The more that I accept migraine and CDH as part of my life, the less of a hold they have on me.

Migraine and CDH (at least in CDH from transformed migraine) don’t just cause pain, but have a collection manifestations. These include odor hallucinations, weakness or heaviness in limbs on one side of body, numbness or tingling of face, confusion, disorientation, difficulty finding words, problems understanding spoken or written language, pale skin, frequent urination, irritability, excitability, depression, nervousness, difficulty concentrating, nasal congestion, runny nose… And this is only a partial list!

Other headache bloggers who have responded to the questions are Tracy of Moogle’s Thoughts and Angel from Give Me Something to Sing About.

UK Approves Migraine Drug for Marketing

British regulators have approved Pozen’s MT 100, a drug that combines naproxen (which is what’s in Aleve) and metoclopramide (Reglan, an anti-nausea med), for marketing in the UK. migraineurs without nausea are the drug’s target market. Yes, you read that right — migraineurs without nausea. Metoclopramide is said to increase the speed by which the body absorbs naproxen, bringing pain relief more quickly.

Pozen stopped developing MT 100 for sale in the US in August after an FDA advisory panel raised concerns about possible side effects. The panel said that the risk of tardive dyskinesia, a neurological disorder where patients suffer from involuntary movements, was greater than the drug’s potential benefits. Furthermore, the FDA wasn’t convinced of the necessity of this combination of drugs in one pill.

Getting a Second Opinion Online

Seeking a second opinion can allay headache- and migraine-related fears. But most of us are lucky to have one good headache clinic within an eight-hour drive, let alone having two to choose from for a second opinion. How about getting that second opinion right from your computer?

Through e-Cleveland Clinic, patients pay $565 for a physician’s written second opinion and treatment recommendations. Insurance companies don’t pick up the cost, but if a second opinion would require substantial travel expenses, this might be a better option.

You have to register before you can access the list of more than 600 life-threatening or life-altering conditions included in the program. I searched for "migraine" and "headache." Both times the only diagnosis listed was migraine associated vertigo/dizziness, but users can e-mail to see if their particular diagnosis is included even if it’s not on the list.

Partners Healthcare has a similar online consultation, but your doctor and the Partners’ doctor communicate with each other directly. Available consultants are arranged by specialty, not by diagnosis as at e-Cleveland Clinic, but neurology is available.

Fine print: These services are only for second opinions. You must submit all your prior health records for review. Residents of Washington DC, Georgia, Kentucky, Louisiana, Nevada, North Dakota, South Dakota, Oklahoma and Wyoming cannot use e-Cleveland clinic (although the article’s author got around this by using her parents’ address in Illinois). Partners’ services are unavailable in Iowa, South Carolina, Louisiana, Tennessee and Oregon.

Giving Thanks

Happy belated Thanksgiving, everyone! As I settle back in after a trek to Washington DC to visit Hart’s grandpa, my gratitude for unexpected things abounds.

I had two pretty good days and was able to abort two headaches that promised to be nasty, including one on the flight back home. Grandpa’s house, which he and Hart’s grandma have lived and smoked heavily in for more than 35 years, didn’t make me too sick. One of the people who spent the weekend with us is a psychiatrist who let me pick her brain. That I met in person my friend Lisa, who I know through a headache forum and this blog.

These are the little things that can get lost in the busyness of life. Living with this disease has taught me that sometimes the smallest things mean the most. And, to use a cliche, that life is too short to ignore the goodness amidst the struggles. I am glad that I learned this when I was relatively young.

Someone I know who has chronic headache and is bipolar said that the only way she copes sometimes is by writing down what she is thankful for on every single day. Even when she can’t get out of bed, she recognizes the goodness that surrounds her. It’s terrific idea that I rarely execute. But I can pick it up any day.

I hope you all had Thanksgivings that were just as good or better than mine.

Forgive me if I’ve gone too Hallmark. I’ve been weepy during the two Thanksgivings since my mom’s brain aneurysm ruptured.

Migraine Blog Roundup

Lots of migraine bloggers have been posting recently and the pieces are thoughtful, informative and touching. Here are just a few. Many of these blogs have newer posts than these and there are some blogs I couldn’t get to, but are always listed in the sidebar, so be sure to explore.

In the News

I’ve had a couple terrible, horrible, no good, very bad weeks, so I’m trying to take it easy right now. Fortunately Kevin, MD has had several links to interesting stories in the last few days that I’ve wanted to share.

P.S. Alexander and the Terrible, Horrible, No Good, Very Bad Day, which I allude to in the first sentence of the post, is quite an entertaining book.

Good Old Days of Meds Not So Good

Longing for the days of safe, reliable medications? A drug discovery researcher says those days never existed. The health risks of drugs like aspirin, penicillin and acetaminophen, he claims, are great enough that many older meds wouldn’t have received FDA approval. Some wouldn’t have even made it to FDA review.

He concludes with, "What are we to make of all this? It’s possible to be both glad and worried. We can be relieved that we’ve learned so much more about pharmacology, ensuring that the drugs that manage to gain approval today are the safer than ever. Or we can think about how people seem to use aspirin and the other legacy drugs anyway, safety problems and all, and wonder how many more useful medicines we’re losing by insisting on a higher bar."

I lament how how often drugs are approved on on the market before serious health risks are found (or revealed). But before any product is marketed a company (and the FDA in this case) considers the known risks and benefits. If a drug or medical procedure potentially helps significantly more people than it might harm, the benefits may outweigh the costs. It’s the same approach that insurance companies use.

If someone accepts that’s medications can’t be totally harmless and chooses to take a drug anyway, shouldn’t he or she know all of the risks beforehand? Truly it wouldn’t be difficult for drug companies to hide information about a drug’s harmful effects in plain sight. Isn’t that what’s been done with aspirin?

via Kevin, MD and Medpundit