Most patients with cadasil experience pain in the head with headache, or migraine.
CADASIL (Cerebral Autosomal Dominant Arteriopathy with Sub-Cortical Infarcts and Leukoencephalopathy) is a rare genetic, degenerative neurological syndrome that causes migraines, strokes and dementia. If you have CADASIL, there is a great support group on Facebook called CADASIL Support! Join us there.
CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy) is an autosomal dominant genetic disorder. This means that a person only needs to inherit one copy of the mutated gene from either parent to develop the condition.
No one really knows that right now, as CADASIL is often misdiagnosed or NOT diagnosed. It is genetic, so a genetic blood test will tell you if you have this serious degenerative condition. I attended the first-ever CADASIL conference in the USA in July in DeKalb, Illinois, put on by the ULF (United Leukodystrophy Foundation) and TWHH (CADASIL Together We Have Hope). Of the approx. 50 CADASIL patients who attended, about half raised their hands when asked if they had been misdiagnosed as having MS (Multiple Sclerosis) first. When I was diagnosed in the fall of 2009, less than 500 people in the USA and 1000 in the world had also been diagnosed with CADASIL. That number is growing daily, as more people are made aware of this genetic disease and are tested.
CADASIL is characterized by a series of strokes, which is thought to be triggered by genetically determined deficiencies of small cerebral arteries.
Yes. Research has shown that patients with migraine with aura are at increased risk of stroke. This risk is highest during instances of status migrainosus (migraines that last longer than 72 hours) or migraines with prolonged aura (aura that lasts longer than one to two hours). Inflammation in the blood vessels in the head and neck can temporarity decrease blood flow to the brain, causing a stroke, or a stroke like event. Migraines with aura also caused an increased risk of white matter lesions on the brain. It is not known if these lesions actually cause changes in cognitive function. In addition, there is a rare hereditary disease called CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy). Migraine with aura is one of its main initial symptoms. This is a degenerative disease with no cure, that causes repeated strokes and dementia.