Medications for POTS
There are currently no approved medications for someone with POTS. Doctors typically prescribe drugs "off-label" when they are used for something other than the drug's listed condition(s). With the new thinking that POTS could be an auto-immune type syndrome, it becomes increasingly important to get drugs on an approved POTS medication list. These are often very expensive and it is difficult or impossible to get insurance companies to cover off-label drugs.
Some medications that Meghan currently takes are listed here. It took us multiple doctors to get the right combination - with no "just POTS" doctors, patients see cardiologists and neurologists to find answers and prescriptions. Meghan takes midodrine 3 times a day to help her blood vessels squeeze harder and increase her blood pressure and the ability to pump blood from her feet to her head (vasoconstrictor). She takes fludrocortisone each day to help her retain the water she drinks to increase blood volume.
She takes propranolol (one of the first beta blockers created) at night before bed to help her sleep - the theory is that it helps keep her heart rate steady through the night so she can get continuous sleep. Often for people with neurological conditions, sleep is difficult as it is an automatic function that the nervous system helps to control - POTS heart rate changes can keep the patient from getting restful sleep. Lack of sleep adds to the feeling of fatigue the POTS patient already experiences. Talking with your doctor about this is important - some people take propranolol during the day to keep heart rate steady and to help with the anxiety feeling that comes with a racing heart. Meghan naturally has a low heart rate, so during the day, propranolol is not a necessary treatment for her. Dysautonomia International has some really great videos you can watch on-line from their prior conferences. One on sleep disorders is where we first learned about propranolol helping with sleep. Click here to link to videos.
Recently asthma has become an issue. She is currently taking advair and singulair to try to get ahead of the symptoms with the hope of backing down to just singulair. She also takes L-methylfolate to help with energy production and it can help with depression. The only drug not covered by our insurance is L-methylfolate.
She has medication for migraine when necessary - mostly after her IVIG treatments. She also has a nausea medication that we use sparingly since it can damage the stomach lining - but it works miracles when she does take it. We also have a probiotic chew and magnesium capsule that are added as supplements. Always talk with your doctor about adding supplements - I go back and forth whether these really add any benefit.
There are a lot of different medications that patients with POTS can take. These are just some that Meghan takes. Many patients also have underlying disorders that also require treatments - such as sjogrens or lupus.