What is Autonomic Testing?

Read about my personal experience of Autonomic Testing at the NHNN to find out more.


As it is #DysautonomiaAwarenessMonth I thought it would be appropriate to republish this post I wrote a while ago about my experience of Autonomic Testing.

Prior to this visit I had been showing signs of Autonomic Dysfunction with the strong possibility of having PoTS, I was referred by my G.P under direction of Prof Rodney Grahame, who after carrying out some simple tests wanted me to be seen by a Neurologist.
I saw a Neurologist at the NHNN and she decided that I needed to have a number of tests over 2 days, this meant being put up in a hotel nearby as I didn't require a need to be on a ward.

Day 1 of Testing

Due to the early start, we arrived at the hotel the night before as it would have been too much for me. The Ambulance picked my Mum & I up from the front of the hotel and took us to the hospital. We had to go to the day centre and were asked to complete the necessary forms, I started getting very anxious when I was looking round at other patients having their blood pressure taken as I had to go without my beta blocker this morning. 
I was taken to be weighed first then my heart started racing and I just wanted to leave, luckily my Mum was with me and persuaded me to stay, I think otherwise I would have left. My mum explained to the nurse how anxious I was, my BP and heart rate were very high and the nurse was concerned and said I could take my medication but it will affect the results, I was put in a really difficult position, when the nurse explained all that was happening today was I will be fitted with a BP monitor, I decided to not take my tablet. My anxiety gradually lessened, the nurse was really nice and took me for a tour around the department to take my mind off things. She retook my pulse which had improved a bit, she was less concerned.
I had to go into a different area to get the monitor fitted, I was told that I had to wear the monitor continuously for 24 hours, the guy explained clearly what I had to do and then I was free to leave the hospital.
Every 20 minutes the machine would beep and I knew then the cuff would start tightening, the part I dreaded! Every hour I had to carry out some very basic exercises like lying down for a few mins, walking to get my heart rate up and record the time on the machine and any symptoms, after a while I got used to the routine and knew what to expect, the tightening of the cuff didn't get any easier though! it really hurt my arm.
I knew I would not get much sleep tonight even though it only goes off hourly through the night, they told me at the hospital if I am symptomatic anytime I can do some manual recordings, I did this several times. I tried not to worry too much about what will happen in the morning when I have the dreaded tilt table testing. This is the main test to diagnose PoTS.

Day 2

Last night I did not sleep well due to the cuff tightening on my arm every hour, it would wake me up even though I tried to ignore it and go back to sleep. I was counting the hours down to when the machine can come off as I had coped really well but was starting to get fed up with it and it was hurting my arm. I was not allowed to eat or drink anything other than water 4 hours before the test.

The ambulance came to pick us up and take us to the hospital, just as I was getting in the ambulance I heard this beep and my blood pressure was taken, which was painful as my arm was out straight and could not do anything about it.

When we arrived at the hospital, we were told to wait in the lounge, there were other patients with EDS waiting so we got chatting, which made the time go quicker. I met one girl who was having her second tilt test, she told me there was nothing to worry about and that it is more boring than anything else.
I had to wait for a porter to take me to another building for the tilt table, he was very friendly! All the staff in the department were very nice. I had to sit in a narrow corridoor for what seemed like ages to be called through for the testing. I was chatting to some patients while I was waiting, then they called my name. The technician asked me lots of questions about my health and explained what would happen. The assistant asked me to get onto the bed and they made me as comfy as possible, they had to warm my hands up as they were so cold, even though I had been wearing gloves. My feet were freezing as well so they wrapped them with a blanket. They fitted me with a blood pressure monitor, which I was very used to by now! and a heart monitor. My BP was taken while I was lying still. I was asked to perform some breathing exercises and other short activities which were not difficult but you needed to work hard at some of them, my BP was taken again while I was carrying out the activities. Before I was tilted, blood was taken and then again near the end of the tilt. The sensation when they tilted me was really strange, you felt like you were going to fall off the bed even though you couldn't as you were strapped.
My chest felt funny straight away and my feet and legs changed colour, my heart was beating quite fast and making me a bit short of breath. I could only manage 10 mins of being upright but that was enough for them to get the results they needed.

I was free to go back to the day centre and wait to see a doctor before I was allowed to go home, he examined me and said I was tachycardic, which wasn't surprising considering what I had been through. I just wanted to go home.

I will let you know about my results in another post.

My journey living with PoTS

I was officially diagnosed with PoTS in 2015 at the National Hospital for Neurology & Neurosurgery. This is one of the only specialist hospitals in the country that has the facilities to carry out these complex tests. I had to complete two days of tests including  24-hour blood pressure readings and a tilt table test, which is the main test used for diagnosing PoTS. 
The tilt table test confirmed I had a high resting heart rate and blood was pooling in my lower legs and feet, I was unable to cope with more than 10 minutes of the tilt as I had chest discomfort, due to a fast heart rate so they lowered me back down into lying, where I felt much more comfortable. My blood was taken while I was tilted and my blood pressure was monitored regularly. I was asked to carry out some simple tests while I was in the lying position to trigger the stress response as this can be elevated in certain types of PoTS. 



For those of you who have never heard of PoTS, I will explain briefly about it, however if you click the link it will take you to another post explaining in more detail. PoTS stands for Postural Orthostatic Tachycardia Syndrome, meaning a fast heart rate with change of posture usually from lying down to standing or prolonged sitting. The reason for this increase in hr is due to a problem in the Autonomic Nervous System, the part in the brain responsible for the various automatic functions in the body that you don't have to think about, such as heart rate, blood pressure, breathing, temperature, bladder, bowels etc. 

In PoTS this function is not working properly and therefore causing a whole range of symptoms. Not everyone will experience all of them in one time and may only have a few. The simple act of standing can be a challenge for people with PoTS as their body is unable to adjust to gravity. 

Some of the symptoms experienced are:

• Palpitations
• Fatigue
• Headache
• Sweating
• Nausea
• Dizzyness
• Fainting

The majority of these symptoms are improved by lying down and elevating the legs to get blood back to the brain.

  

My Journey

I had been having fairly severe episodes of tachycardia, light headedness, heat intolerance, nausea and various other unexplainable symptoms for many years, which resulted in me having to attend my local hospital and Dr's surgery on a number of occasions. I had many ECG's which basically showed my heart was beating very fast but nothing to worry about. 

My worst Tachycardia episode happened while I was on holiday in Spain with my partner. Our first holiday away together without parents.  I had been walking around in the heat and not had much fluids when I experienced a rapid heart rate with chest discomfort and strange sensations down my face and arm, I felt very unwell and scared that I was having a heart attack due to the symptoms. The hotel phoned for a G.P to assess me as my heart was rapid. 
The Dr was really lovely and gave me a injection in my bottom to try and slow my heart rate two times without success, he left me for a while then came back and it was still rapid, he tried massaging my neck to slow it down but still no improvement, he called an ambulance out and they took me to hospital, I was connected to a heart monitor with pads stuck over me. I was really scared as no-one was speaking English and were all round my bed. Then I had a tablet put under my tongue and they left me,  
I kept looking at what my heart rate was doing and it was going up then down. They discharged me after a while, saying it was a panic attack and being in the heat.  
The G.P came back out to check on me again when we were back at the hotel, he was lovely! I think this was a PoTS episode 

I had many more strange episodes following this when I was back home and trying to work. The symptoms would just come out of the blue and my chest would feel heavy and my heart would race, I had to call a taxi to take me home on a number of occasions while I was at work. I started worrying about going to work in case it happened again. I thought I would lose my job as I was taking so much time off. 

I saw my G.P who said it was Anxiety and prescribed beta blockers to slow my heart rate, every-time he did my BP and heart rate while sitting it was ok, however if he had done it while standing, it would be different. I knew it wasn't anxiety and that something else was going on but you trust your G.P to know what is wrong.

When I was on a Pain Management Programme in 2014, I was getting out of the pool when my legs kept collapsing on me, luckily I had an assistant helping me as I started feeling lightheaded and nauseous and on the verge of passing out, thankfully my physio saw and walked with me to the cubicle and I was taken back to the ward to be monitored. I am sure this was another PoTS episode. I also had some funny episodes where the heat would really get to me affecting my brain function and triggering Migraines. 

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.