Mental Health: Help Managing Anxiety

Key points 

• Anxiety does not cause PoTS
• Anxiety is common, and it makes sense that people feel anxious at various points of their PoTS journey:
  • Before diagnosis, when they don’t understand the cause of their symptoms
  • After diagnosis as symptoms can still feel scary
  • Chronic illness creates financial stressors, can impact relationships and cause worry about the future.
• Symptoms of PoTS and anxiety are similar and can be difficult to tell apart
• It is important to discuss anxiety and access support when needed because being anxious can affect quality of life and make symptoms worse.
• It makes sense that if one aspect of our physical health is compromised, we need to optimise other aspects of our life, including our mental health, to be as well as possible, and enjoy life as much as possible.

What does anxiety have to do with PoTS? 

Research has shown that PoTS is not the same as anxiety, and the heart rate increase seen in PoTS is not directly caused by anxiety. However, PoTS is sometimes confused with anxiety because:

1. Anxiety is so common that, just by chance, many people with PoTS will also have anxiety. 
2. Although studies have suggested people with PoTS do not have specifically increased prevalence of anxiety disorders, we know from research that in general, individuals diagnosed with chronic health conditions are more likely to experience anxiety due to the impact of the symptoms and changes to their lives from these conditions. Studies looking at people’s lived experience of PoTS have shown that anxiety may be present alongside this condition due to the high burden of symptoms and their fluctuations
3. Some of the symptoms of anxiety are similar to the symptoms of PoTS.  Palpitations, nausea, light-headedness, gut symptoms, fatigue and headaches are symptoms that can occur both in anxiety and as a result of PoTS.
4. Even when we know that PoTS symptoms are not harmful, symptoms can still feel very frightening.  Adding scary thoughts to the mix can increase symptoms even more.
5. Anxiety and stress cause our bodies to release a chemical in the blood stream called norepinephrine. People with PoTS seem to be very sensitive to this chemical which can cause symptoms like anxiety. In addition, the parasympathetic nervous system which calms us, may also not be functioning normally in PoTS.  

If anxiety begins to affect your day-to-day life, it makes sense to do something about it. The good news is, while we may not have all the answers yet for treating PoTS, we do have lots of things that have been proven to help with anxiety. 

Why we become anxious 

The system in our body that controls anxiety, now known as the fight, flight or freeze system, was developed to keep us safe by making us alert, ready for action and keen run away from threats. However, it has changed little since the Stone Age and due to this, our brain responds to modern day stressors such as an exam, job interview or a difficult medical appointment in the same way it used to respond to a sabre tooth tiger. It is an amazing process, however, sometimes we need to let our more recently evolved forebrain, where our more complex thoughts occur, take over.  In the modern-day people can benefit from being able to careful appraise situations and also to choose to stay in stressful situations, such as challenging jobs or meeting new people.

Anxiety and Panic 

Panic describes occasions when anxiety becomes overwhelming, and we can no longer easily tune into our rational thinking.  Panic Disorder occurs when there is a repeating pattern of misinterpreting harmless body changes as dangerous or threatening to us. A vicious cycle happens where we think inaccurate scary thoughts about what our body is doing e.g. “I am going to die”, or “I will faint and be vulnerable’”.  These ‘catastrophic’ thoughts increasingly make the physical symptoms stronger, causing a state of panic. Over time most people caught in this cycle start avoiding places and situations, because they do not want to experience panic.  This, however, leaves them feeling vulnerable, and actually more likely to experience further episodes. Panic disorder can commonly occur alongside physical illness.  

How to manage anxiety 

If we feel anxious, we can use our bodies, thoughts, behaviours and emotions to reduce our symptoms as described below:

1. Our body

When we are anxious, our bodies are observing themselves closely to check we are safe; and we can use this to our advantage. 

• If we slow our breathing or relax some key muscles, our bodies begin to assume that the need to be on high alert has passed.  Learning some soothing breathing and muscle-relaxation techniques can be great tools in themselves.  We can use them to calm ourselves down so that we can work on the other techniques described here with a clearer head. The aim with these exercises is to try and lengthen the breath, not necessarily to breath very deeply. Try and take slow steady breaths where your outbreath is longer than your inbreath. You can also place one hand on your belly and one on your chest, when breathing try and push the air right down into your belly so this hand rises as you breath, and your chest should not be inflating too much so this hand should be remaining still.
• It can help to have moments of quiet scheduled into every day to practice bringing in our calming (parasympathetic) nervous system.  Things like meditation, yoga and even a silent moment with an herbal tea can fit the bill!
• Regular exercise can increase feel-good chemicals that help us manage stress.  With conditions like PoTS exercise is extremely helpful, but it is essential to seek guidance about the best types of exercise to avoid post-exercise fatigue and flares. 
• When we are anxious, we can start to notice our bodies more. This is called hypervigilance.  We can then mistakenly assume normal body changes are dangerous to us, leading to panic. Some people even find the breathing techniques designed to help them get calm (above) cause them to slip into hypervigilance or over-attention on the body. For this reason, it is important to find a way of getting calm that works for you – like exercise.  There is no one type fits all. It can also be a problem if we try to ignore these sensations, because we can stop noticing genuine signs. We need to slow down and look after ourselves. It is a fine balance to achieve! Meditation (see below) can help us get better at tuning into our bodies more helpfully.

2. Our thoughts

• Unhelpful thoughts: When the caveman got home, he/she quickly felt safe and relaxed.  He didn’t have a highly developed brain capable of worrying for long about what might happen tomorrow or to criticise missed opportunities or mistakes in his day.
• Our highly developed modern brains can easily go into overdrive and generate unhelpful thoughts around imaginary situations that may or may not occur. Once we notice these unhelpful patterns we can begin to change them.  We can challenge our unhelpful thoughts and make use of more beneficial techniques like Cognitive Behavioural Therapy (CBT).

We can get better at reducing the time we spend worrying.

• Try to identify the things you are worrying about and work out whether they are problems you can do something to resolve. If they are, prioritise, and attempt solve them one at a time. If they are not problems you can solve at this moment, ‘hypothetical worries’, you can use other techniques to try and step away from these thoughts, like mindfulness or meditation.
• Break down what is needed step by step, and seek help where you can.  Just putting a list on paper can help us feel less overwhelmed and stop thoughts going round and round.
• Once we have a plan, it can help us lower our anxiety the rest of the time. 
• Meditation helps us build the mental muscle to calmly accept what is happening and refocus on something else. 
• Having a handy list of things to do or think about, that we find interesting or make us feel happy, can help distract us more quickly and successfully.

Letting go of things in the future and past, and realising we can handle the present moment are all skills which help us manage anxiety, and are the key skills developed in mindfulness meditation. Mindfulness is about paying close attention to experiences in the present moment, approaching them with a sense of curiosity and accepting whatever emotions and thoughts come up, and can be particularly helpful for those living with chronic illness.

There are lots of ways to do this, but common ways are focusing on our breath, and guided body-scanning meditation. Guided body-scanning improves our ability to notice pain or sensations without being distressed or needing to change them, building the belief that we can cope. Mindfulness meditation has been shown to reduce heart rate and regulate blood pressure. There is quite a bit of evidence indicating that it is worth giving it a go!

You can also practice engaging in everyday tasks in a more mindful way, by focusing on each of your senses during activities such as eating and drinking. Trying to remain in the present moment and approaching it was a curious mind can help draw attention away from anxious thoughts about the future or the past.

Lots of useful resources for all these approaches can be found online. If you struggle to get started you can seek the support of a professional to help you as changing these habits and forming new ones can be hard work on your own.

3. Our behaviours 

Obviously, what we do and where we go can affect our anxiety, and conversely anxiety can affect what we do and where we go. At times anxiety can increase isolation as you might try and avoid situations that may bring on anxiety.

In fact, part of the definition of clinical anxiety is avoiding things. Sometimes this is sensible, but often it makes things worse.  If every time we get anxious we leave or avoid a situation, we can start to crave the lovely relief chemicals that come from escaping. 

Soon we can find life is more and more limited by this ‘safety-seeking’, which can begin to affect our self-confidence, self-belief, our enjoyment of life and our mood.  If we stay in the situation and tolerate discomfort we can instead feel pride in ourselves and realise even extreme anxiety always passes.

Engaging in activities that we enjoy and that are meaningful to us can provide a helpful distraction from anxiety. Distraction is different from avoidance and can be very helpful. The trick is to choose to focus on something more helpful or positive (rather than desperately trying to stop or avoid symptoms, which, because of the urgency, only adds fuel to the fire of the anxiety symptoms). Try gently re-focusing on music, reading or a conversation.

It can be helpful to hold in mind the acronym ACE, which stands for achievement, connection and enjoyment. Trying to plan in activities that fit into each of these categories can help ensure you have a balance of different fulfilling engagements which benefit your emotional wellbeing.  

4. Our emotions  

Other difficult emotions like low mood, anger, guilt or frustration can prime us to be more likely to feel anxious in any given situation, so we need to get better at managing these too.  Once we are anxious it can spread, so things we would normally manage well can cause us to become anxious.  One of the most unhelpful things we can do is get angry or frustrated with ourselves for being anxious.  We don’t deserve this unkindness, and it only makes it worse by adding more anxiety to the mix.  Trying to ‘fight our way though’ anxiety also doesn’t work for the same reason.  We need to become a good friend to ourselves and be patient and reassuring. Sometimes it can help to think about how you would respond to a friend in the same situation as you, as we often find it easier to tap into compassion this way.

You can break the cycle

With the right tools, next time you feel the physical effects of anxiety you can use strategies to help you notice symptoms or sensations, to calm and redirect your focus.  This way you do not react excessively (which causes panic) and resist safety-seeking behaviours. Over time, discomfort in the same situations diminishes, and the world begins to expand again, rather than shrink. 

Anxiety is common and we need to talk about it more.  Anxiety thrives when we are ashamed of it.  Especially if our physical health problems have previously been misdiagnosed as mental health problems, it can make us reluctant to draw attention to mental health struggles we might have as well.  Remember it is very common to develop mental health issues with all long-term illnesses. 

Talking therapy

To avoid affecting your recovery by leaving anxiety untreated, ask for a referral, or self-refer online, for a talking therapy. These include:

• cognitive behavioural therapy (CBT)
• acceptance and commitment therapy (ACT)
• mindfulness-based cognitive therapy (MBCT) 

Once they learn these approaches, many people find them useful for improving all aspects of their lives, and they wish they had developed these skills earlier and that they were taught in school.

Talking therapies do not always involve sitting face to face with another person.  If mobility is a problem, it can be possible for sessions to take place over the telephone or online.  It can be hard work making all the changes you need to manage anxiety, but it can be well worth the effort!