Log in
Cavernoma Alliance UK
352 members103 posts

What do we avoid to prevent further bleeds?

I just tuned 58 years old. My first bleed was in 2009, I was 51. It was pretty bad because  my cavernoma was in the brain stem, near my pons. But with God's grace I recovered with a year of therapy. During the duration of my therapy, I took an herbal supplement called NeuroAid. You can check their website and read more on it. In 2011, I had an episode that gave me partial blind spot on my right peripheral. But it slowly, to 90%. My most recent mild bleed was a month ago. I have slight double vision, tight jaw, an awful taste on my tongue, nausea, dizziness, a bit of balance issues. Iam optimistic that it will all go away. It is only this last episode that I was diagnosed with cavernomas, 2 of which are within the brain stem area, and 4 more scattered in the other parts of my brain. Surgery is not an option per my neurologist. Iam would like to know what do other neuros say on what can trigger a bleed, what to avoid doing and what preventive measures we can do to avoid another bleed?

6 Replies

Hi - I also have multiple cavernous, including brainstem, which have bled. Although there is no clinical evidence to say that stress causes a bleed, you will find that a lot of people with the condition will say it does. You would also be advised to avoid lifting excess weights, no roller coasters with G force and no bungee jumping. Try and avoid medications which can thin blood in any way such as anti-inflammatories which don't cause bleeds but can make them worse. Cavernoma alliance UK has a secret Facebook page where your questions would be answered by others in a similar situation - just contact them via their website and ask to join - it's free.


Thank you for you reply Emmaj70. How do I get into the secret Facebook page?


Go to cavernoma.org.uk/  and apply to become a member - there's a tab on the page for this. It is all free. They will then send you details about the secret Facebook page which is where we all hang out!


Ok thank you.


Hi babooshkah25, did you sign up and become a member of CAUK? It's free and easy to join: cavernoma.org.uk/sign-up/. If you need any further assistance please email me on community@cavernoma.org.uk.



Not yet, but I plan to, thanks.

1 like

You may also like...