It’s a horrible feeling to know something is medically wrong with you but have neither a diagnosis, nor an answer nor a clear path to walk down.Feeling lost within the medical world can seem isolating and hopeless. Getting a diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome) sometimes takes patients years – not because it’s that hard to diagnose but because the symptoms are often brushed off as anxiety or mistaken for other conditions.
Nowadays, thanks to the internet and amazing online communities, it’s easier than ever to look up your symptoms and compare them to those of other patients. While we don’t always recommend doing this (we try to stay off sites like WebMD that take us down a dark rabbit hole when we feel like something is “off”) the internet can be extremely helpful and a wonderful source of information.
POTS (Postural Orthostatic Tachycardia Syndrome)
A high heart rate upon standing (increased by 30+ bpm or a heart rate of over 120 bpm ) and low blood pressure are the usual indicators of POTS. However, the tricky thing about POTS, like other autonomic conditions, is that there are SO many other symptoms that go along with it. A lot of patients (us included) also experience syncope, extreme fatigue, headaches, lightheadedness, nausea, brain fog, chest pain, temperature regulation issues, poor circulation and blood pooling, just to name but a few. When you’re dealing with other chronic conditions (like us), it is always difficult to know what is being caused by POTS or what is being caused by something else.
If you think you have POTS there are things you can do to get yourself in the best position for the proper care you need and deserve. If you are not sure what do do next, here is our list to help move you in the right direction.
Check out the site Dysautonomia International. They are an AMAZING resource to learn all about Dysautonomia and POTS. They provide everything you need from patient information for you & your friends/family, research articles & how to become involved in the Dysautonoima community.
The right POTS (Postural Orthostatic Tachycardia Syndrome) doctor
Find a doctor who knows what POTS is or is willing to refer you to someone creditable who does. This is harder than you may think, between the two of us we’ve probably been to a dozen doctors (ER doctors included) who didn’t know what POTS even was. Some even gave us a hard time when we tried explain it.
Tilt Table Test
Ask for a Tilt Table Test (TTT). This is the standard test to get for POTS. A “poor man’s tilt table test” can be done, which is basically getting your vitals taken from a laying, sitting, then standing position, but you want to get a proper TTT to provide a diagnosis. If your doctor dismisses you, but you still feel strongly you have POTS, request this test.
Track your numbers
Get a personal blood pressure cuff that you can use at home & track your bp/hr. Keep a list of those numbers for a few weeks. Take it laying down, sitting & standing. You want to do this multiple times throughout the day so you can show your doctor how your body has been reacting.
Keep a list of all your POTS (Postural Orthostatic Tachycardia Syndrome) symptoms
Write down any other symptoms that you have you think are associated with POTS so you don’t forget anything during your appointment (because appointments can feel overwhelming sometimes).
drink plenty of fluids (with electrolytes) and salt (if you have low blood pressure) – this will help keep your numbers more stable.
If you are with doctors who don’t listen to you or aren’t giving POTS the proper time, do not let them dismiss you and tell you that it’s anxiety or all in your head.
Trust your gut
We still have to remind ourselves of this one & lean on our instinct. No one knows your body better than you. If you feel like something is off, it probably is.