For the most part, we cannot distinguish a cavernous malformation headache from any other kind of headache. A headache unlike one you have ever experienced or headaches, particularly on the same side or general location as your lesion, may be related to your lesion. Lesions located deeper within the brain, with or without hemorrhage, are less likely to cause headaches. Any changes in your neurologic status or shift from your typical headaches should be brought to your doctor’s attention.
There are several types of very painful headache that are not related to cavernous malformation hemorrhage. These will need to be ruled out before concluding that your headache is the result of your cavernous malformation.
Migraines typically present with severe throbbing pain on one-side of the head and is often accompanied by nausea, vomiting, cold hands, and sensitivity to sound and light. Your migraine may be associated with or without aura (a warning sign typically with visual disturbances). Migraines are considered chronic if they occur more than fifteen days a month, for more than three months, that have the features of migraine headache on at least eight days per month. The standard treatment of migraine is safely recommended for patients with CCM.
These types of headaches can be very painful and come on very quickly, typically during sleep. They usually occur around or behind the eye and may be accompanied by other symptoms including tearing of the eye and congestion. These attacks will occur every day for as long as weeks or months and then go into a remission period.
Giant Temporal Arteritis
Giant temporal arteritis is rarely experienced in cavernous malformation patients, but it can cause inflammation in the temporal arteries triggering piercing headaches. The pain is usually felt around the ear and can present with jaw pain and loss of vision that may be temporary or permanent.
Rebound headaches occur because of regular, chronic medication use to treat headaches. This cycle will cause headaches to return once your medication wears off. Symptoms of rebound headaches can happen as often as every day, usually first thing in the morning, and may feel different than the headache you were treating. It is important to monitor your headaches for any changes and work with a provider on finding the cause and the best course of treatment.
This is the typical treatment for most types of headaches as there is no risk of hemorrhage.
Nonsteroidal anti-inflammatories (NSAIDs)
NSAIDs are a family of over the counter medications that include ibuprofen and aspirin. These are generally avoided by most patients with cavernous malformation due to their blood-thinning properties. However, new evidence indicates that their use does not provoke hemorrhage. Until we know more, it is not advisable to start using blood thinners without consulting a practitioner well-versed in CCM. Please visit our page on blood thinners for more information.
The standard treatment of migraine is recommended for patients with CCM, and triptans, for example, have not been shown to increase or decrease hemorrhage risk in people with a cavernous malformation.
Botox is approved for the use of chronic migraine and may be offered as a treatment. While the safety of using Botox if you have a cavernous malformation is unknown, a 2020 paper provided details of a case study of an individual who experienced two symptomatic hemorrhages following high doses of Botox. Until more is understood in this area, it is recommended to explore all your treatment options for headaches with a practitioner who is well-versed in CCM.
Tips for preventing headache
- Identify and avoid dietary triggers. Keeping a journal is a great way to track this.
- Consume a healthy diet that avoids processed foods
- Ensure good sleep hygiene
- Maintain a healthy blood pressure
- Avoid stress and try relaxation techniques
- Engage in regular movement
- Avoid excess use of alcohol and caffeine
- Stay hydrated
This chart from the National Headache Foundation details the different types of headaches one can experience. Additionally, they offer information on treatment, prevention, and a listing of qualified specialists who treat headaches.
- Koskimäki J, Zhang D, Carrión-Penagos J, et al. Symptomatic Brain Hemorrhages from Cavernous Angioma After Botulinum Toxin Injections, a Role of TLR/MEKK3 Mechanism? Case Report and Review of the Literature. World Neurosurg. 2020;136:7-11.
- Zuurbier, Susanna M et al. Long-term antithrombotic therapy and risk of intracranial haemorrhage from cerebral cavernous malformations: a population-based cohort study, systematic review, and meta-analysis. The Lancet Neurology. 2019;18(10):935-941.
- Akers A, et al. Synopsis of guidelines for the clinical management of cerebral cavernous malformations: consensus recommendations based on systematic literature review by the Alliance to Cure Cavernous Malformation Scientific Advisory Board Clinical Experts Panel. Neurosurgery. 2017;80(5):665–680.