Taking medication safely with PoTS

When taking any medication, we advise you to read up about it.

There is some information on our website and more detail on the leaflet that you should receive with your medication.

Medications need to be reviewed regularly, initially to assess their benefit and side effects and to titrate the dose if needed. Some medicines require blood pressure and heart rate monitoring – even salt tablets. The prescriber should advise you how they plan to do this. For example, monitoring blood pressure is important when introducing drugs such as midodrine and fludrocortisone, or any other drug that affects blood pressure. This may be done through regular blood pressure checks, both lying and standing or more extensive blood pressure monitoring, such as a 24 hour monitor.

IV Fluids

Guidelines recommend IV fluids for PoTS  in specific circumstances only. A number of companies are offering IV fluids without proper medical assessment. Assessment should include a proper face to face dysautonomia assessment, and a trial of lifestyle strategies and all available medications first over a period of months. IVs should only be recommended to people who are unable to swallow 2-3 litres of fluids a day, once assessed by a gastroenterologist or in an emergency situation. Regular IV infusions carry some risks and we would encourage any members of our community considering this to read the guidance provided by our medical advisors.

Medication and pregnancy

Ivabradine is thought to potentially harm an unborn baby. Other drugs such as midodrine may also be harmful. Your healthcare provider should inform you of this when starting the drug. Most drugs that cause harm to the unborn baby should not be taken during the preconception period when you are trying to become pregnant and when breast feeding. When you are planning a pregnancy, we recommend that you speak to your healthcare professional before trying to conceive so that you can optimise your PoTS treatment to ensure the healthiest outcomes for your baby and you.

Make sure you take adequate contraception whilst on any of the potentially harmful  medications.