Please can you tell me if there is a connection between headaches & Marfan Syndrome?
A doctor that specialises in headaches has suggested Marfan Syndrome because of my family history of Aortic Aneurysm’s, & probably because I am the same long thin build as the relations that died I am wondering what type of specialist I should see next & what tests may be helpful.
I'm not sure whether there is any evidence to establish a relationship between headache and Marfan Syndrome (MFS). I have not run across any such evidence before.
There are conflicting reports as to whether the incidence of intracranial (brain) aneurysm is increased in people with MFS (which could potentially cause headache). If I remember correctly, a very small study indicated yes, but a larger study at Johns Hopkins indicated no. I don't believe there is any association between the two.
For your headaches, you might visit a neurologist who can order an MRI/MRA to evaluate your intracranial blood vessels.
If you do not regularly visit a cardiologist for your possible MFS, you should find one who is knowledgeable about MFS and visit him or her. A good workup will include a CT scan of the entire aorta to find any dilatation or aneurysm and an echocardiogram of the heart to visualize any possible defects.
If your aorta is dilated, especially in the root (which connects to the heart), you may benefit from a new therapy that halts and/or reverses aortic growth. The therapy involves a family of drugs called ARBs. You can learn about this therapy by clicking on my screenname and reading my old posts. You can also visit www.marfanlife.net/bb3 and view the "Pharmacy" section to read about these drugs. There, you'll find many people who have had great success with ARBs and aortic regression. The key with this therapy is to take a sufficiently high dose. For most full-sized adults, that is at least the FDA-recommended maximum. Beware, most doctors do not keep up with the research and they are unaware of this groundbreaking therapy. Many will try to discredit it out of ignorance. But if you do your homework, you'll get your hands on the recent studies out of Johns Hopkins and other medical institutions proving that this stuff works.
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