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Octreotide using POTS patient

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.

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I haven't really come across anyone using octreotide before - I was advised that's an option for me if other meds don't work. I currently take fludrocortisone, midodrine and slow sodium for POTS and reflex syncope. Have you tried other treatments or did you start on octreotide? Do you have side effects from octreotide? How has it helped (eg do you blackout less or less heart palpitations or other symptoms?). Sorry for all the questions! Thanks


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