These are the questions generated from the August 22,2004 brainstem angioma chat. The questions were general in nature, applying to anyone with a cavernous angioma. These answers come from Dr. Issam Awad, the chair of our scientific advisory board. We are awaiting answers from other experts.

1) Question: Is there any recommendation as to limiting alcohol consumption in regards to preventing the chances of a CCM bleed? A drink per day? A drink per week? Abstinence?

Answer: There is no known relationship between alcohol intake and CCM bleed.

2) Question: How about caffeine in drinks such as coffee? Should caffeine be limited? One of our participants experiences the feeling of her eyeball being squeezed, droopy and migraines in her eye (secondary to pons CM)? Are there any explanations for why caffeine would help? She knows caffeine is supposed to shrink blood vessels, and wonders if this makes sense?

Answer: There is no data about caffeine and the risk of bleed from CCM. There has been some relation shown between diet pills, certain stimulants, and nasal decongestants containing phenylpropanolamine and intracranial hemorrhage in young patients, including possibly cases with CCM. These items have been taken off the shelves by the FDA, but it is possible that other excessive stimulants might cause bleeds.

Stimulants may increase blood pressure in hypertensive patients and this could contribute to predisposition to hemorrhagic stroke. Extreme stimulants such as cocaine and other illicit drugs have been shown to cause brain hemorrhages among patients without prior history of high blood pressure, including cases with pre-existing vascular malformations.

Caffeine can help migraine in some patients, and can precipitate migraine in others. But, there is no known relationship between caffeine and CCM hemorrhage. There is certainly no reason to withhold caffeine for fear of hemorrhage.

3) Question: Is there any correlation between lack of hydration and a potential bleed?

Answer: No.

4) Question: Which anti-inflammatory medication would you recommend? Are some safer than others?  Are there any that patients should absolutely stay away from? Also, any advice on the use of anti-clotting agents used for other, non-lesion related surgery?

Answer: We recommend that patients with CCM refrain from blood thinning medications except for life-threatening indications. In many cases, there are alternatives to blood thinners which can be considered. The potential benefit of blood thinners, say for prevention of heart attack or stroke, may be offset by added risk of hemorrhage from CCM. The best approach is to have your physician discuss indications for blood thinners with the neuro specialist who is managing your CCM. This is particularly important in CCM lesions with recent growth or hemorrhage.

Blood thinners to be avoided include Coumadin and aspirin, but also common non-steroidal anti-inflammatory medication such as Advil, Motrin, and the newer medications Celebrex, Vioxx, etc. While many patients take these medications without problem, it is likely that hemorrhage risk is increased, and this could be serious with Coumadin. Again, decisions regarding the pros and cons should be visited between your doctor and and the neuro-specialist watching the CCM.

In contrast to the above medications, Tylenol (acetaminophen) is a common painkiller that does not cause bleeding tendency. We recommend it for CCM patients.

5) Question: Many chat participants correlate daily stress levels with a noted increase in transient symptom severity. The consensus was that these symptoms lasted for a few days even after the stress source was alleviated. Is there a physiological explanation for this, e.g. increase in vitals? And/or is there a hormonal basis, e.g. cortisol, for this observation?

Answer: Stress can alter neurological symptoms after a stroke and can account for subjective or objective fluctuations of symptoms. There is no known physiological or hormonal basis for this. However, stress can increase blood pressure, which could be a problem in hypertensive patients with increased hemorrhage risk (see comments regarding stimulants).