Felicity Kane was a track star who was forced to give up her Olympic dreams because of Migraine and autoimmunity — a frequently comorbid pair. On a cocktail of medicines prescribed for rheumatoid arthritis, lupus and the Migraines those medicines triggered, Last December Felicity agreed to try her 37th medication with hopes this would be her miracle Migraine treatment.
Instead, this bright, intelligent and energetic young woman died days later as a result of a rare reaction to the anti-seizure drug lamotrigine.
Although the press is currently calling the reaction an *allergy* there are currently no reports of typical drug allergy symptoms(1) she would normally have suffered if this were the case. A drug reaction (side effect) however, is much more likely to have resulted in her death.
It is interesting to note that lamotrigine is listed by the Institute for Safe Medication Practices (ISMP) as one of the drugs found to be most likely to cause a severe reaction(2). The FDA has acknowledged the large number of these severe and even fatal reactions caused by the drug, and ISMP noted their opinion that the FDA should consider restricting lamotrigine to second line only – - in epilepsy patients for whom the drug was originally designed to treat. No recommendations will be made for Migraine prevention, because it is not approved for that use in the first place.
My sadness and anger increases when you consider the fact that the latest US(3) and European(4) recommendations for preventive care for Migraineurs states that lamotrigine was established as ineffective for episodic Migraine prevention. Despite this, the coroner on her case considered the medication appropriate for her.
Dangerous. Enough it should be restricted.
Ineffective. Declared both in the US and Europe.
Medication reactions and hospital mistakes are currently thought to be the fourth leading cause of death in the United States(2), only hinting at the struggle many Migraineurs endure with each new unapproved medicine they are forced to try in their attempt to gain control of their condition.
For each medicine a Migraineur tries, they could potentially suffer a serious reaction. These reactions are rarely limited to a simple allergy. The more medicines a Migraineur tries, the worse their favorable odds become.
This illustrates once again the truly desperate need Migraineurs have for a medicine designed specifically to treat Migraine, not another disease or disorder. Drugs designed for other diseases and disorders target other problems and have the occasional happy side effect of decreased Migraine attacks. Take these drugs, and all kinds of things are happening inside the Migraineur’s body that are unnecessary and potentially harmful. This physiological action designed to help other problems often leads to a plethora of unwanted side effects and serious reactions as a result.
They simply aren’t targeting Migraine.
Add to the discussion that most patients will continue trying new drugs every few months for many years, many of which are used *off-label* for migraine. About 50% of patients do not see positive outcomes (lessened occurrence, severity or duration of their Migraine attacks) from these treatments. The statistics are very sad indeed.
It’s worth noting that some physicians find that lamotrigine sometimes seems to help their patients, despite the American Headache Society and American Academy of Neurology’s findings.
Although Ms. Kane and her family reside in the United Kingdom, I wanted to bring you this story today to emphasize the importance of being proactive patients. Here are some ways you can lessen the chances that a story like this will apply to you someday:
- Be educated — about Migraine and your comorbid conditions. Ask your doctor many questions about each new prescription. Get answers, but go home and look up those answers yourself to be sure you got the correct information. If you have a comorbid condition, search the name of the new drug with the name of your condition and look for any information that may implicate the drug as potentially harmful, even if that reaction is a rarity. Use this information to begin a discussion with your doctors so you can make an informed decision as a partner with them. And remember: The most to lose gets to choose. That’s you.
- Start small. If you have a tendency to react unfavorably to medications or have a potentially serious comorbid condition such as autoimmunity, talk to your doctor about starting doses extremely small and well below what is normally considered effective. Titrate them upward slowly as you both feel you are able, but give extra time to be sure no adverse reactions are going to be a problem. This may mean additional time is needed to trial the medicine, but it is often worth it for peace of mind if nothing else.
- Monitor frequently. If you are concerned because of a potentially serious comorbidity or a history of serious medication reactions, talk to your doctor about frequent monitoring to be sure you are still safe during the start of treatment. If you fear an immediate problem such as a cardiac reaction etc, ask to try the medicine the first time or two while in the doctor’s office where you can be consistently monitored throughout the first few minutes or hours of the treatment.
And perhaps the most important thing you can do to help:
- Act globally. Get on board and become active within the Migraine community at large. Join us as we talk to legislators, breaking the stigma of our disease while trying to educate them to the immense personal and societal burden that results from Migraine. Sign the petition that asks for a Congressional hearing we so desperately need to explain that Migraine is not a headache worthy of an occasional aspirin, but a widespread genetic, neurological condition too long ignored. If the patients who suffer refuse to be active in changing this, we will never get what we need — more research into the pathophysiology and epidemiology (how Migraine occurs in the body, why and to whom) of Migraine, there will not be any new medicines coming down the road to help us. Period.