What is PoTS?

What is PoTS?

PoTS stands for Postural Tachycardia Syndrome and is a condition related to the Autonomic Nervous System, the part of the brain that is responsible for regulating many organs and functions throughout the body, including heart rate, BP, temperature, breathing, bowel and bladder function. People with EDS seem to also have PoTS. This maybe due to the laxity in the blood vessels.

PoTS is still a fairly unknown condition amongst the medical profession as it is considered to be fairly rare and also due to the symptoms being similar to anxiety and other disorders, makes this difficult to diagnose. The other problem being that Dr's take your bp and heart rate while seated, rather than standing, which is why it will probably be normal. Symptoms can change from day to day with PoTS, so unless you are having a bad day it will probably be misdiagnosed. Some people suffer for years with symptoms before getting a diagnosis.

This shows clearly the functions of the Autonomic Nervous System

How is it diagnosed?

There are various different tests that can be used to diagnose PoTS but the simplest way is by having your blood pressure and heart rate taken while upright, this can even be performed at your G.P surgery if you are not under any hospital. 
A tilt test is the standard method for diagnosing PoTS, however only specialist hospitals have them. I think there is only one hospital in the country that has a tilt table. The patient is strapped to a table and tilted upright at an angle of at least 60 degrees. The blood pressure and heart rates are taken while flat and then again while tilted upright, how long the patient can remain upright without triggering severe symptoms will depend on each individual but can be from 10 mins to 40 mins and if they faint the test is concluded.

You maybe asked to wear a holter monitor to measure the effects on your heart which will record what is going on over a 24 hour period. You might have to keep a journal of any symptoms you experience over this time. 

What are the symptoms?

There are many symptoms which can vary in each person but the main ones are:

• Palpitations 
• Dizziness 

• Orthostatic intolerance

• Chest pain

• Brain fog

• Breathlessness 
• Tingling in the hands and feet 
• Fatigue
• Collapse or syncope 

Symptoms come on within 10 minutes of upright posture and without a drop in blood pressure and accompanied by excessive changes in heart rate of more than 30 beats a minute or over 120 beats/minute
They are caused by an in balance of the Autonomic Nervous System's control over blood flow, this regulates the necessary adjustments in vascular tone, heart rate and blood pressure upon standing.

The symptoms can be life altering and very debilitating, a person with PoTS uses three times more energy to stand than a healthy person, which explains why the fatigue can be very severe and feel like you have ran a marathon, when all you have done is maybe walk up the stairs or done some light housework. Some people will become disabled and not able to work due to the symptoms.

One third of patients will also have digestive problems, due to the blood flow not matching the need so blood is not going to the right part of the intestinal system when it needs to, causing problems with nausea.

How are symptoms treated?

• Act immediately
• Breathe calmly,
• Sit, crouch, squat
• Do calf pumps by going from heel to toe 4 times
• Drink water- between 300 to 500 mls reduces the blood pressure within 10 to 15 minutes and lasts for 1 hour and apparently it's quicker than medication.

If after taking the appropriate action things don't improve then seek medical advice.

After recovering from a PoTS episode, you need to look at what may have caused it in the beginning. Look at your Triggers which will be different for everyone but may include any of the following:

• Dehydration
• Doing too much
• Stressed
• Infection
• Standing still for too long
• Environmental temperature
• Raising arms above head

Once you have identified what are your possible triggers then make a note of them and look at each one individually and decide how to manage and prevent as best as possible by using self management strategies.





Self management strategies:

These were explained by the Autonomic nurses at a PoTS self-management clinic session, with the aim of making 'you' the expert.


Trigger: Posture

• Sitting down for as many tasks as possible
• When you are changing posture from sitting to standing, make sure you do your calf pumps and move on an out breath.
• Avoid raising arms above the head
• Don't stand still, keep moving

Trigger: Sleep

• Sleep with the head of the bed at 10 degrees
• Have appropriate bedding that doesn't cause you to overheat and use a bed cradle

Trigger: Heat

• Avoid warm/hot environments
• Be aware of central heating, baths, cooking
• Use portable fans, cool drinks, cool vests,
• layers of clothing e.g. cotton and fleece
• Keep physical activity to a minimum during hot times of day

Trigger: Time of day

• What time is best for you?
• Plan your day

Trigger: Time of the month

• Symptoms can be associated with menstrual cycle

Trigger:  Food

• Simple sugars, caffeine and alcohol can make symptoms worse
• Have small regular meals
• Increase salty choices

Trigger: Dehydration

• Carry water all the time
• 500mls on waking, keep urine a pale yellow colour

Trigger: Pain 

• Pain can be a trigger so explore options with your G.P or specialist
• Infections can take longer to recover from so may need help from G.P
• Be careful with pain medication due to side effects on circulation

Trigger: Medication

• Some medications can make PoTS symptoms worse
• Be aware of increased symptoms
• Get the balance right between medication and symptom relief

Trigger: Infection

• Can you self manage
• Do you need treatment from your G.P
• You may need longer to recover

Long term management: 

There are various medications available to help with symptoms but many are not licenced for PoTS, so it is a trial and error whether they will help. 

Compression socks are recommended by some people for pooling of blood in the legs. 

Exercise is important in PoTS as it increases muscle tone which can improve symptoms, helps pain management and improves mood but a lot of sufferers find it very difficult due to the severe fatigue it causes. You need to be sitting or lying when exercising and work on legs and core muscles. Work at your own pace not trying to keep up with everyone else. Rest before and afterwards and keep hydrated. 

I hope this has given you a better understanding of this condition and if I have missed anything or you want to share your experience, please do so.

Resources used:

http://www.dinet.org/

Handout from Autonomic nurses at UCLH