Long Covid and Orthostatic Intolerance Issues

Orthostatic Intolerance means that you experience a worsening of symptoms standing or sitting up that are relieved by lying down. Symptoms can include:

• Light-headedness
• nausea
• confusion
• weakness
• fainting
• blurry vision
• heart palpitations
• chest tightness and pain
• exhaustion/fatigue
• exercise intolerance
• diarrhoea
• nervous/jittery feeling

You can see how it could be easy to confuse with other causes and symptom clusters like ME/CFS type fatigue. It can also present similar symptoms to some serious damage that covid can cause so its well worth getting the recommended tests carried out to exclude urgent critical treatment being needed.

In the words of Lucinda Bateman this is important because orthostatic intolerance is “measurable and treatable…whatever the underlying cause.”*

One challenge for patients is that the medical community in the UK seem to be very bad at reliably identifying and treating orthostatic intolerance correctly. We have had quite a few members with ME/CFS have these issues and experience a range of problems such as:-

• one person was given a diagnosis but neither told nor offered anything for the treatment of their PoTS ( a specific orthostatic intolerance condition),
• one person repeatedly tell medical people about issues sitting and standing but no interest or recommendations were shown and when pressed to test for PoTS did an inadequate test and then stated falsely that there is no way they could have PoTS
• Often despite patients talking about symptoms consistent with orthostatic intolerance no investigations are carried out.

It is really important to access the right medical advice but this can be challenging as it is often misunderstood. Cardiologists with an interest in PoTS and related conditions are very rare and they were in much demand before a pandemic leaving many people with Long Covid and orthostatic intolerance issues. You might be wise to bring some evidence with you to the meeting ( or phone call) such as the https://www.hrsonline.org/guidance/clinical-resources/2015-heart-rhythm-society-expert-consensus-statement-diagnosis-and-treatment-postural-tachycardia or https://www.onlinecjc.ca/article/S0828-282X(19)31550-8/fulltext as well as any data you have in terms of heart rate and blood pressure readings.

There is an excellent video done by Dr Nick Gall a leading PoTS expert with Gez from his Run DMC Youtube channel that does give some excellent advice although as Dr Gall is keen to note when it comes to treating these issues in regard to Long Covid there is much yet to be known and current recommendations might prove to be wrong.

Mount Sinai Centre for Post-Covid Care has developed an interesting and well thought of treatment programme for Long Covid which does focus on dysautonomia. Which again is worth reading and listening about although it would be hard to fully access from the UK. https://www.youtube.com/watch?v=f0ehpsv-2TE is one video but there are quite a few more videos, pod casts and written material about the approach. Whilst they have had lots of patients and been tracking feedback it would be fair to catagorise their approach like most to Long Covid as being a sort of experimental and pragmatic method rather than a proven one.

Lots of the treatments for OT can be fairly easy to administer depending on the exact form of OT such as:-

Water intake

Salt intake
Compression clothing
Diet
Exercises
Sleep with raised legs

Some patients have reported seeing benefits from taking antihistamines and doing “Histamine Diet” so that might be worth exploring although there is at present very little research of scientific evidence yet in this area.

Both Dr Gall and the Mount Sinai practitioners endorse looking at breathing and if there is any issues there then looking at Breath work, operatic breathing exercises or something else to address dysregulation in breathing could make a positive difference in terms of lessening some symptoms and also preparing for some of the exercises to tackle the intolerance. I am currently doing the Stasis Breathwork program for this (week 1 of 24) as well as irregularly attending some Operatic Breathing Classes. There are loads of good resources on the internet if you wish to explore this area.

Ben

*https://www.youtube.com/watch?v=WwH2kCuQqj8&t=2580s