Migraine “Risky Business”
Each time you try a new treatment you take a risk. Each medicine, supplement or treatment with the potential to help us also has the potential to hurt us. The FDA has tried to stack the deck in our favor with extensive testing to be sure that the serious effects are minimal. However, many of us with Migraine have tried l-o-n-g lists of medicines and other treatments trying to get our attacks under control. We’re using these medicines for reasons they were never intended. That is equal to a risk X 1, then times another, then another and another. What may start out as a rare side effect may now be multiplied because of the sheer number of times you’ve taken that risk.
How you initiate a discussion with your doctor so you can make an educated decision about trying a new treatment as a team, is important for optimal outcomes as you participate in these trials.
Those who follow my blog posts are probably already aware that I have suffered some severe side effects as a result of medications we have used to try to get my Migraines under control. My experiences with them exceed 30 years at this point, permanent damage to my brain, and a near death experience. I don’t talk about the loss of concentration and my job, pins and needles in my hands and feet, the inability to speak, or the day my hair fell out in patches anymore, because these are mild in comparison.
As a result of my own experiences, it’s become passionately important to me that two things happen:
- The general public realizes that there are NO preventive medicines designed specifically to target Migraine, and only one class of abortive medicines to treat Migraine. Shockingly there are NO medicines for Cluster Headache – nicknamed by doctors as Suicide Headaches because of their striking severity. Unfortunately the side effects of medicines used off-label for prevention, or as directed to treat a Migraine attack, can be very serious, and as a result Migraine itself needs to be understood as a very serious disease with potentially dangerous outcomes. Migraine attacks don’t often kill patients, but the medicines and the effects of those medicines patients are forced to take, are more likely to be fatal than the disease itself, and in fact excruciatingly under-reported as related to Migraine.
- Patients must learn about important side effects of these medicines and understand that although most people experience only mild side effects, there can indeed be a range between barely noticeable and fatal. Smart patients and their families understand this and talk to their doctors and make decisions as a team, planning for the potential for a serious side effect so no time is wasted in treating it if an unlucky event occurs. Being afraid of trying a new treatment isn’t probably very helpful because we need to find something that is helpful to us, but being highly respectful and prepared certainly is.
When faced with the option to try a new treatment for Migraine, there are a few questions you should remember to ask your doctor:
- Why am I taking this medicine or doing this treatment? What are our goals in this trial? What are my options? Ask your doctor to be specific, and if you’re unclear about anything, keep asking questions until you understand the answers.
- What are the potential side effects of this treatment, and what are your concerns about my unique reactions to the treatment? How safe is this drug or treatment likely to be for me?
- How should I be taking this medicine? In other words, what is our plan of attack, and what is our plan if something goes wrong? May I have it in writing please along with a way to contact you in case of an emergency? Most medicines used for prevention follow the “Start low, go slow” approach for maximum safety and the fewest chances for a side effect. If you are uncomfortable about the speed of starting the medicine, ask your doctor about starting lower, or going up in dosage more slowly. Be sure you know how to go off of the medicine and have that in writing too, since some medicines can be dangerous to stop cold-turkey.
- Ask your doctor for time to consider the treatment before beginning it, and inquire as to the responsiveness of the doctor and his/her staff which you can expect while trialing the treatment. Too often I see patients started on a new medicine unable to get in to see or even speak with their doctor for months when trouble pops up. This can be a serious mistake.
The movie Risky Business was watched by most of us in that generation with laughter and a tongue firmly planted in-cheek. In the end, the only thing that went amiss during Tom Cruise’s exploits was a broken figurine that disappointed his parents. I imagine the movie would have had a very different feel to it if someone had been seriously hurt or even died as a result of what happened when his parents were away.
Tom Cruise’s character got away lucky. Make sure you get away lucky too.
Learn more about the 2013 MHAM Blog Challenge and other MHAM events by visiting: 2013 Migraine & Headache Awareness Month Information Page
June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com