Folks, am reading conflicting reports on what effect moderate caffeine consumption has (if any) on people such as myself who suffer from multiple intracranial hemorrhages. One report I read states that caffeine decreases blood flow and intracranial pressure (a good thing), while other reports state that caffeine increases the risk of hemorrhagic stroke (esp. in women). I can't get any answers from my neuro people on this either. Have had many small bleeds (51 yr. old female, otherwise very fit and healthy), and two significant intracranial hemorrhages in the past five years ... the latest one 3 weeks back, leaving me with left leg/left arm "phantom" sensations and some uncoordinated movement. If someone who is knowledgeable about the caffeine subject can weigh in that would be great. I've already given up my daily stout and would also have no problem giving up my 2 cups of coffee daily if it would help cut down on these bleeds.

Hi,

I have read some articles about Thalidomide being used to help with nosebleeds in HHT.  It appears to have similar effects as Tamoxifen in reducing vascular growth.

Has anybody been prescribed it? And has it worked?

The research has been carried out in the USA post 2009.

Here is a link to an article

 Thalidomide stimulates vessel maturation and reduces epistaxis in individuals with hereditary hemorrhagic telangiectasia : Nature Medicine : Nature Publishing Group


Jase

   I seem to be having more nosebleeds this month - is anyone else, Could it be pollen-related ??

Hi Steave

Glad things are going OK I have started having side effects I have this uncontrolable erge to put on a white shirt and go out to eat. Something I have not done for a long time, no bad bleeds so far all the best.

Brian