Migraine ‘Miracle’ Results in Death of Olympic Hopeful

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.

 

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
1. Mayo Clinic Staff. “Drug Allergy: Symptoms.” Available at: http://www.mayoclinic.com/health/drug-allergy/DS01148/DSECTION=symptoms. Mayo Clinic. © 1998-2012 Mayo Foundation for Medical Education and Research 2. Moore, Thomas J; Furburg, Curt D. MD, PhD; Cohen, Michael R. Rph, MS, ScD (hon). “QuarterWatch Monitoring FDA MedWatch Reports”. Available at: http://www.ismp.org/quarterwatch/pdfs/2011Q4.pdf. ISMP.org . May 31, 2012. 3. Silverstein, Stephen D, MD, FACP. Holland, Starr, PhD. Freitag, Frederick, DO. Dodick, David, MD. Argoff, Charles, MD. Ashman, Eric, MD. “Evidence-based Guidelines Update: Pharmacologic Treatments and NSAIDs and other Complementary Treatments for Episodic Migraine Prevention in Adults. Report of the Quality Standards Subcommittee of the American Academy of Neurology and the American Headache Society.” Platform Presentation. American Academy of Neurology Annual Meeting. April, 2012. 4. Evers, S., Áfra, J., Frese, A., Goadsby, P. J., Linde, M., May, A. and Sándor, P. S. (2009), EFNS guideline on the drug treatment of migraine – revised report of an EFNS task force. European Journal of Neurology, 16: 968–981. doi: 10.1111/j.1468-1331.2009.02748.x 5. Hodgekiss, Anna. We thought it would be a miracle cure: Parents anguish after daughter, 18 died from allergic reaction to Migraine tablets. The Iconocast News. Available at: http://www.iconocast.com/10-08-2012/55/Parents-anguish-after-daughter-died-from-allergic-reaction-to-migraine-tablets.php. UPDATED: 10:14 EST, 8 October 2012

Comments

View Comments (10)
  • sherid67
    2 years ago

    While what happened to that young woman is awful, but Lamictal (Lamotrigine) has truly been a miracle drug for me. I had daily migraines until a neurologist prescribed this as “off label.” I’ve been on it over 10 years, and it gave me my life back. It’s the difference between 3 migraines a month versus 30. It’s unconscionable to say it should be taken from those of us whose lives have been so improved by it.

  • Kim Smith Lawson
    6 years ago

    Ellen, you are absolutely correct… we stay terrified of the next “wonder drug” for us. Two of the three that I am on have been known to affect eyes (glaucoma) kidneys (kidneystones) liver, and pancrease. These side effects are so dangerous you don’t know if you are winning or losing. Each time I have to change, my throat just closes with fear… because no relief has been perfect yet, just a little better- but I wonder at what cost.

  • Ellen Schnakenberg author
    6 years ago

    Kim, Hang in there, because there are some exciting things coming down the pipeline. It’s sort of confusing to try to explain, but in a nutshell, doctors are working on a way to more specifically target receptors that play a part in Migraine attacks. This means fewer side effects because the medicine will not be affecting other organs/cells etc. This is going to take time though, so what we have to do is keep on making good decisions, good conversation with our doctors, and above all remember two things:

    1. You are the expert of you, so pay attention to your instincts.

    2. The one with the most to lose, gets to choose!

  • betsymalavet
    6 years ago

    I had a bad reaction to Topamax which can also occur with Lamictal–bone marrow suppression. I was lucky that my internist noticed the anemia and sent me to a specialist–one bone marrow biopsy later (and one is more than enough in a lifetime!), I found out what the problem was. But I was fortunate that I had a doctor who was watching me carefully and that my reaction was not sudden and severe but gradual. It’s not easy to know what to do in these circumstances and there don’t seem to be a lot of options for preventative treatment of migraines. I was also lucky to find that Namenda seems to be working for me without bad side effects and my doctor was willing to try something totally outside the norm.

  • Paula L.
    6 years ago

    Lamitrogene (lamictal) did wonders for my depression. More to your point, many, many drugs are used for disorders outside FDA approval. Statistically, that doesn’t make them any more likely to cause serious reactions. Of course doctors should inform patients of possible side effects.
    I’m a chronic headache sufferer, desperate to find appropriate treatment. That doesn’t make me feel that doctors take this disorder any less seriously. Certainly, it’s given more respect & credence than my fibromyalgia!

  • Janet
    6 years ago

    Excellent!!! Is everyone listening????
    Janet Jones

  • alig0118
    6 years ago

    How very sad. I agree there should be medications specifically designed for migraine. Not one that some doctor ‘figured out by chance’ that happens to work/help. Thank you for a great article.

  • Ellen Schnakenberg author
    6 years ago

    alig0118 – thank you so much for your comment. The problem is, without research into the pathophysiology and epidemiology of Migraine, there aren’t going to be any new medicines targeting Migraine. There is such stigma re: Migraine that it isn’t taken seriously. We have facts and figures showing the immense societal and personal burdens of patients, but until that stigma vanishes, no one will take the time to listen to those facts and figures. There won’t be any research. We can all do our part by contacting legislators. I hope you’ll consider helping us 🙂

  • Cindi
    6 years ago

    Great article Ellen. I’m sure, as many of us, she was only seeking relief from never ending pain. Your suggestions when using new or off label drugs are spot on. We have to be vigilant when caring for ourselves, which is easily forgotten when you’ve been in pain for weeks on end. Again, great article. I’m so sorry that the promising life of a young woman has ended.

  • Ellen Schnakenberg author
    6 years ago

    Thank you Cindi. My heart aches for this family. This happens more frequently than most people even realize. She made the news because she was Olympic caliber. So many others pass away and their families never understand the implications of what really happened to them.

  • Poll