Thought I would get the ball rolling! Would love to hear from fellow Potsies. I have been diagnosed for 2 years (after searching for an answer for 20 years!) and have been having both short acting and long acting Octreotide treatment for about 18 months. I have seen some improvement in my symptoms. Would gladly advise anyone wanting to know more. I also have EDS hypermobility type 3, reactive hypoglycaemia, basilar artery migraine and complex migraines, endometriosis and PCOS.