CADASIL and Migraine: Know Your Family Medical History

Many people who suffer from migraine attacks wonder – am I going to have a stroke? What will this do to my mental abilities? Will I pass this on to my kids?

These are good questions. And yes, migraine disease, especially certain types, can raise your risk of stroke, and may be passed on to your kids.

Most of us know that migraine often goes along with other disorders and diseases, such as depression, fibromyalgia, and cardiovascular problems. But sometimes migraine attacks are actually a warning sign of something else – and that’s the case with CADASIL.

CADASIL is the short form for a disease known as cerebral autosomal dominant arteriopathy with sub-cortical infarcts and leukoencephalopathy. And now you know why they call it CADASIL!

Here’s a good description from the National Institute of Neurological Disorders and Stroke:

CADASIL (Cerebral Autosomal Dominant Arteriopathy with Sub-cortical Infarcts and Leukoencephalopathy) is an inherited form of cerebrovascular disease that occurs when the thickening of blood vessel walls blocks the flow of blood to the brain. The disease primarily affects small blood vessels in the white matter of the brain. A mutation in the Notch3 gene alters the muscular walls in these small arteries.

You know how concerned doctors get if blood vessels get narrow or blocked. Imagine if an inherited condition actually caused your blood vessels to be that way. Having a stroke would only be a matter of time. And the small strokes typical with CADASIL would lead to depression, memory loss, and changes in personality.

Early in life, there may be no symptoms at all. But as time goes by, some symptoms – such as migraine attacks or memory problems, may develop. This often starts in the patient’s early 30s.

Before we go on, it’s important to realize that CADASIL is very rare. You probably don’t have it, and may never meet anyone who does. But it’s important to be aware of, not only because someone reading this may have it, but also because it highlights the importance of knowing your family’s medical history. There are other diseases as well that may lead to migraine-like attacks.

In the case of CADASIL, about 1/3 of patients develop migraine with aura as an early symptom. Sometimes there may be an unusually long aura phase in these attacks.

Because CADASIL is a genetic disease, it can be diagnosed with genetic testing. But because of the expense of genetic testing, it may be diagnosed with MRI tests, interviews with your doctor, and a knowledge of your family’s medical history.

The genetic test has actually only been available since 2000. Before that – and sadly, even today – CADASIL may be misdiagnosed.

So if you’re looking into your medical history, you may see evidence of other neurodegenerative diseases, such as multiple sclerosis or Alzheimer’s disease. These could be evidence of CADASIL.

If you have one parent with CADASIL, you are at risk.

There is no cure for CADASIL. Most patients have dementia by the age of 65.

The disease can be managed, and patients helped and supported, but only if they know they have it. Also, I’m happy to share that the National Heart, Lung, and Blood Institute is going to be doing a study on the disease, and will be looking for participants. For more information, see CADASIL Disease Discovery.

If you would like to learn more about CADASIL, check out this article from Genetics Home Reference, and the NINDS CADASIL Information Page.

Many of you who do or don’t have CADASIL will appreciate this article: The Stigma of Rare Disease: How Do You Tell People About Your Condition?