Symptoms of Postural Orthostatic Tachycardia Syndrome (POTS)
- Cognitive impairments
- Sleep abnormalities
- Neuropathic pain
- Blood pooling in the extremities
- Light sensitivity in the eyes
- Abdominal pain
- Rapid gastric emptying
- Hypersensitivity of the skin
POTS is a chronic illness that is often invisible to the untrained eye. A person with POTS may not have all of these symptoms, and some may be more sporadic while others are constant. My daughter suffers from neuropathic pain, crushing fatigue, and brain fog 24/7. Headaches, abdominal pain, insomnia, hot flashes, and light sensitivity are intermittent. At this point, she does not suffer from the other symptoms on this list. Every person with POTS is different, and we need to receive individualized treatment to get the best clinical outcome.
And the tests come back normal. My daughter was getting progressively more ill, but all of the blood and urine tests came back as normal. Her complete blood count (CBC), blood sugar, creatine kinase came back were all negative. The MRI of her back and hips, normal. EKG, normal. We were told that she had depression, anxiety, and conversion disorder. The truth is that they had no idea what was going on, and felt the need to give some diagnosis even if they had no evidence to support it.
Be sure that your child is well hydrated. The rheumatologist who diagnosed my daughter with POTS first realized that she was not drinking nearly enough fluid per day for her age (my fault!). Children should consume 7-8 cups of fluid per day1, in addition to the water that they get from eating watermelon, ice cream, Popsicles, etc. We increased her fluid intake radically, but her symptoms did not abate.
Consider trying the Poor Man’s Tilt Table test at home or in your doctor’s office. If you know someone who has many of the symptoms listed above and you suspect that she might have POTS, you can try the Poor Man’s Tilt Table Test at home. It is really easy – all that you need is a watch and to find her radial pulse on the thumb side of the wrist, or the carotid pulse on the side of the neck.
Poor Man’s Tilt Table Test
1. Lay her on her back for 5 minutes and be as still as possible. While still laying down, take her pulse and write it down.
2. Have her stand up, and stand as still as possible for 2 minutes without leaning. Take her pulse while still standing. You can repeat pulse evaluations every 2 minutes until she has been standing 10 minutes.
POTS can be diagnosed a couple of ways:
If the heart rate is greater than 120 beats per minute at any point while standing, POTS might be indicated.
Adults age > 19, an increase in heart rate of 30 beats per minute or more between laying and standing may indicate POTS.
Children and teens age <19, an increase in heart rate of of 40 bpm or more when standing, it may be POTS.
You can use the Stand Test for POTS app to track changes in heart rate during this test. If you have an automatic blood pressure cuff at home, you can use it to monitor blood pressure and pulse for you. In many POTS patients, there will be a decrease in blood pressure by up to 20/10 mmHg when standing.
If after the Poor Man’s Tilt Table Test you still suspect POTS, please contact an autonomic specialist. You need to find a doctor who is a specialist in the autonomic nervous system, which is the system affected by POTS. Most autonomic specialists are either neurologists or cardiologists, but not all of them are familiar with POTS. Look for a neurologist or cardiologist who specializes in POTS.
Finding a Good Autonomic Physician
People with dysautonomia need a good autonomic physician to oversee their care. The following resources can help you find a good autonomic physician in your area who understands postural orthostatic tachycardia syndrome, or ask your doctor for a referral to a specialist close to you.
How to Find a Good Doctor gives excellent general advice for what to look for when you are choosing a new physician.
Once you find a good physician, be sure that you prepare for the appointment. Making a good impression is important, and bringing along as much information as possible will help you to hit the ground running. This is especially important when you have an invisible illness. Check out these preparation tips.