STARS News & Events

Be kind to yourself

The vaccine has meant that the immediate dangers of COVID have lessened, and we can begin to return to normal. However, long COVID continues to be a concern — particularly as, at present, we do not know what (if any) protection the vaccine provides against the development of long COVID. In this interview, Dr Melanie Dani and Dr Boon Lim (both Imperial Syncope Unit, Imperial College Healthcare NHS Trust, Hammersmith Hospital, London, UK) recommend that anyone with long COVID “be kind” to themselves as that is the first step to recovery.

Overall, what percentage of people who have COVID will go on to develop long COVID?

Reports from the Office of National Statistics suggest that about 1 in 10 people still have persistent COVID symptoms after 12 weeks. However, other studies show that the number may be even higher than this — according to data for May 2021, about 1 million people in the UK are living with long COVID.

Do we know who is most at risk of developing long COVID?

Women are more likely to develop long COVID and, specifically, middle-aged women seem to be most affected, and rates seem to increase with age. Also, healthcare workers are more likely to develop it.

Furthermore, we are finding that some patients with long COVID had mild autonomic symptoms — such as palpitations, fast heart rates, and dizziness on standing — before they developed COVID. Therefore, COVID may “unmask” a likelihood for getting long COVID type conditions in people with a predisposition. People who develop PoTS after COVID, similarly, may already have had a tendency to develop PoTS prior to getting COVID — for example naturally low blood pressure or joint hypermobility syndrome.

What are the most common symptoms of Long COVID?

The most reported symptoms are fatigue, “brain fog” (memory problems and difficulty concentrating), and shortness of breath with mild exertion (known as exercise intolerance). Another prominent feature is “post-exertional malaise” or difficulties getting back to one’s previous exercise regime (or activity levels).

The symptoms of long COVID can be like those of PoTS. Why do you think this is?

We do not know the answer to this yet but there are a lot of theories. It may be that the virus directly infects the autonomic nervous system; or maybe the body tries to mount an attack to the virus, but instead mistakenly attacks itself by making antibodies to itself (this is called “autoimmunity”). In fact, some of the same antibodies seen in PoTS are also seen in some patients with long COVID, but the significance of this is not clear yet.

We know that PoTS can be triggered by viruses, and that viruses in general can cause fatigue syndromes (e.g., Epstein Barr Virus and chronic fatigue syndrome).

In your view, are PoTS and long COVID the same condition or different types of a post viral syndrome?

It is too early to say, and this question needs to be studied in detail. But we are seeing patients in our clinic with PoTS or vasovagal syncope following COVID. It may be that these individuals had underlying risk factors making them more likely to develop symptoms, like a naturally low blood pressure, or hypermobile joints, which results in blood pooling in the legs on standing.

It is likely that long COVID consists of a spectrum of different conditions — of which a PoTS-type condition is one. Some patients with long COVID are more likely to have more predominant fatigue, while others may have symptoms related to the damage from the initial infection, for example, to the heart or the lungs. Over the next few months this will become clearer as larger numbers of patients are studied.

If someone is experiencing symptoms of long COVID, or PoTS, what are your tips for self-management?

So, the first thing is to be kind to yourself. The very fact that you have found yourself reading this shows that you are someone who takes control of your health and wellbeing.

Educate yourself. One piece of good news is that you are not alone, and there are many people who are with you, have gone before you, and sadly, are likely to come after you. As a result, there are many advocacy groups and support groups — such as STARS — where you can access resources, education, and support from healthcare professionals and other patients. Connecting with others and learning what has worked for others can be very helpful.

Next, pace yourself! It is very tempting to think you can go back to full-on working days and exercise as you used to, but this can set you back quite significantly. The most important thing is to listen to your body, work with it, and do what you can. Some people may find that they get very tired at work, and need more regular breaks, while others may not be able to get out of bed without fainting. Work out what you can do comfortably and what you cannot do, and then focus on setting yourself small challenges every week or every few weeks.

If you are suffering from autonomic symptoms, the following conservative advice can be helpful:

  • Know your blood pressure: If you are suffering with dysautonomia it is generally a good idea to know what your blood pressure and pulse rate is. A simple validated upper arm cuff BP monitor can usually be bought on the high street or Amazon for under £40.
  • Stay hydrated: Drink at least 3 litres of water per day. This keeps your blood volume replenished. Always have a glass of water or a water bottle to hand, including by your bed at night. Drinking 250ml of cold water 3–5 minutes before standing up can boost your blood pressure and prevent light-headedness and other symptoms
  • Eat salt: If you know your blood pressure is low or low normal (i.e., below 115/75mmHg), be more liberal with salt. Salt allows your body to hold onto the water you drink and raises your blood pressure. Aim for least two teaspoonfuls of salt per day. If you really do not like the taste, your doctor may be able to prescribe you salt tablets.
  • Wear compression garments on your legs and abdomen: These can be very effective in stopping blood pooling in your legs. Your GP may be able to prescribe you stockings or an abdominal corset, but we usually recommend shaping underwear from clothes or underwear stores. It is important that your thighs, waist, and tummy are covered by the underwear. They work by compressing the major blood vessels in your legs and abdomen and pushing more blood towards your heart. Then, when you stand up, you are less likely to have symptoms.
  • Consider getting abdominal height Grade 2 graded compression, which should deliver 25–35mmHg compression, depending on the manufacturer.
  • Use postures when you start to feel unwell:  If you start to feel dizzy and really cannot sit or lie down, you can encourage blood back up to your heart by some simple exercises. Tense the muscles in the lower half of your body, squeeze your buttocks and thighs, cross your legs, or if possible, squat. If there is a chair or stool close by, raise a leg onto it. Similarly, clenching your hands together can help.
  • Learn your triggers… and avoid them: Symptoms of dysautonomia are wide and complex – and everyone is different. It is important to know what your triggers are, and what does and does not work for you. It is a good idea to keep a symptom diary so that you can record patterns and trends in your health
  • Common triggers can include hot steamy places such as saunas and shower rooms, alcohol, being rundown, and the menstrual cycle. Some of these things are unavoidable, but if you are aware that your symptoms are worse in the premenstrual period for example, you can ensure you are even more careful with the advice above. 
  • Stay prepared: It is important to know what challenges your day may face so that you can prepare for them accordingly. Some people carry a bag with water bottles, salty snacks, compression socks and even a portable stool! This can be very empowering and allows you to be in charge of your symptoms, rather than the other way around.
  • Eat smaller, more frequent meals: Larger meals can divert blood to your intestines, away from your heart. So again, there will be reduced blood returning to your heart. It may help to plan your meals ahead of time and aim for five smaller meals per day. Avoiding alcohol may also help, as alcohol can lead to vasodilatation (expansion in blood vessels, which may also drop your blood pressure further).
  • Have a shower stool – and keep your shower cool: This is often quoted by patients as a life changing hack. It will allow you to enjoy your shower and carry on with your day, clean and refreshed! Additionally, keeping your shower slightly cooler than you normally have it, will eventually start to train your body to vasoconstrict your peripheral vessels. If brave, consider giving yourself an icy blast with minimal or zero hot water at the end for 10 seconds, then 20 seconds, aiming eventually for 30–60 seconds of very cold water at the end of your lukewarm shower. This may initially be fairly shocking to experience, but in time, you may find yourself enjoying the invigorating feeling, which may lead to a boost in your BP when your body learns to adapt to the cold by vasoconstricting.

For both PoTS and Long COVID, the advice is to drink plenty of fluid (up to 3L a day). What are your tips for achieving this?

We normally advise people to “front-load” — that means drinking more fluid earlier in the day, with most by midday. You may want to set reminders throughout the day. Ice can make it more palatable or adding a low-sugar fruit drink. Adding oral rehydration salts can also help you retain the fluid you drink. If you have been sitting or lying for a while (e.g., in the morning, when you wake up), a glass of water before getting up may help improve your blood pressure

What medication/treatment is available for the management of PoTS and long COVID?

There are no medications yet licensed for the treatment of long Covid but there are plenty currently being tested. For people with autonomic symptoms or PoTS-like symptoms, we usually recommend a good trial of conservative management, as medications are unlikely to work in isolation. There are some medicines for use in PoTS to help with increasing body fluid volume (e.g., fludrocortisone), for squeezing the blood vessels in your belly and improving blood pressure (e.g., midodrine) or for taking the edge off palpitations and high blood pressure. These medications all have side-effects some people find them difficult to take, so your doctor may trial them for a short period to determine whether there is any benefit.

If someone has Long COVID, how long is the recovery process?

This is very hard to predict, and one of the most feared and difficult questions. Every person is different. Many patients recover quickly, but there are others who take much longer to get back to normal. It is such a new condition that we do not know everything about it yet, including the natural history of the condition and the predictive factors for recovery. Anecdotally, most of the patients coming back to our clinic do get better with time and patience. But it is worth noting that you may be more susceptible to relapse if you become ill again, even with a minor viral illness or bacterial infection. So, if you tend to have low blood pressure usually, remember the conservative advice above and incorporate it into your life even when you feel well.

Conditions such as Long COVID and PoTS can have an impact on mental health. What would your advice for improving general mental well-being?

It is important to explain your symptoms to your family and friends. Symptoms of dysautonomia are not always immediately obvious to others. It is also crucially important to realise that you are not on your own, and some of the best support can come from others going through similar symptoms to you. There are some very helpful websites where you can share your story with others who are in the same position as you. 

As with so many illnesses, you will have good days and bad days. Do not be put off by the bad days. Put the challenging days behind you and focus afresh on each new day. Make sure you celebrate small victories and progresses and congratulate yourself for getting this far.

There is increasing evidence that mindfulness and meditation can enhance your wellbeing and can improve both mental and physical health. Focusing on and regulating your breathing can modulate your blood pressure and heart rate and improve symptoms of dysautonomia. There are a lot of popular applications and guides to guide you (e.g., Headspace, Calm, 10% Happier) and you may need to browse to find one that suits you. HeartMath, for example, is a biofeedback device that teaches deep breathing exercises and gives you real-time feedback (on an app on your smartphone) to show how your breathing immediately impacts on your heart rate patterns. We suggest choosing one and committing to a small amount of time per day (even five minutes). Be sure to record your symptoms as you do this. Think of it as an investment to a happier, healthier you!

CLICK HERE to watch Dr Melanie Dani's talk on Long COVID at the STARS Patients Day (now available on-demand)

CLICK HERE to see the full STARS Patients Day agenda

CLICK HERE to for more information about STARS Patients Day, including how to register. 

 

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