Myalgic encephalomyelitis/chronic fatigue syndrome has a wide range of debilitating symptoms that often affect my ability to initiate or complete activities of daily living. However, having ME/CFS, Postural Orthostatic Tachycardia Syndrome (PoTS), and BPPV can make it even more difficult to do simple everyday tasks that healthy people take for granted.
Written by an anonymous supporter of the ME Association
For the past 2 years, the UK has experienced spells of very hot weather that caused an exacerbation of my symptoms – namely feeling dizzy and faint – which meant the exhaustion and depletion of energy was unbearable. It felt like my body was completely and utterly devoid of any life and for several days I wasn’t able to do even the most basic tasks. This experience wasn’t new, but I had never been so severely affected by these symptoms before and it was very disconcerting and distressing.
Did you know that on an average day a person may sweat 2 litres of fluid? This can increase when temperatures rise in the summer months. I know how important it is to remain hydrated in general and in hot weather I tried to increase my fluid intake, but this time it didn’t seem to have any effect on my symptoms. In the end, the only thing that helped was to take dehydration salts.
During this period, I was also experiencing Benign Paroxysmal Positional Vertigo (BPPV) which means vertigo occurs usually when you turn in bed, although it can happen from merely changing your head position. Both of these happened to me and caused great anxiety when I lost my balance; it felt like I was falling, and it caused unbearable dizziness.
Epley Manoeuvres
The worst thing in my opinion about BPPV is the exercises I am encouraged to try. Epley Manoeuvres invariably make the symptoms 100 times worse before they improve. They are designed to move crystals that have shifted from their original position into the ear canal back to the correct position.
NHS Scotland says: “No one really knows why this happens, but some debris (tiny pieces of calcium crystals) have moved from one part of your balance organ to another part where it shouldn’t be. When you move your head quickly for example turning your head, looking up or lying down, these crystals move about and irritate your balance system causing you to experience vertigo.”
After a few times (upwards of 8 or so) of performing the manoeuvre, the experience of vertigo became less and less, until I noticed the exercises did not trigger any symptoms. This is not the case for everyone though, and I can't imagine having BPPV all the time without having any or much relief from the doing the Epley Manoeuvre.
According to most websites, the BPPV episodes feel like ‘a sudden sensation that you're spinning or that the inside of your head is spinning’ and whilst this is true the actual experience is much more disturbing and upsetting than people realise. In fact, during the most severe vertigo, I was brought to tears because of the awful sensation and the extremely upsetting loss of control.
Nystagmus
Another common occurrence during BPPV is Nystagmus. This is a rhythmical, repetitive, and involuntary movement of the eyes. Eye movements are usually from side to side, although they can also be up and down or may be of a circular motion. It can cause the eyes to move together or move independent of one another. A person with Nystagmus has no control over these eye movements. The episodes I experienced caused a few laughs from my family (but not in a nasty way) especially when they made me look like a dizzy cartoon character!
- NHS Berkshire: Adult hearing and balance service.
- NHS Berkshire Leaflet: Benign Paroxysmal Positional Vertigo (BPPV).
Dealing with a chronic illness like ME/CFS or Long Covid in hot weather is additionally difficult especially if you suffer from PoTS and BPPV. While desperately trying to keep cool and hydrated, it can be truly exasperating especially when trying to continue with the principles of pacing when attempting even basic daily activities.
I was totally incapacitated. I couldn’t shower, brush my teeth and even going to the toilet by myself was impossible. I felt so fragile and weak that bedrest in a darkened room was the only option. Fortunately, things did improve. However, to limit having to take dehydration salts, I have increased my salt and fluid intake, and I am considering buying or asking the GP for compression stockings.
All these treatments eventually seemed to help control the symptoms of PoTS, however, there is nothing to prevent the episodes of BPPV, which I appear to be at an increased risk of having, because I am also diabetic.
NHS Scotland says that people may be at increased risk of developing BPPV if they experience any of the following:
- Trauma.
- Diabetes.
- Osteoporosis.
- Lying in bed for long periods of time.
- Vitamin D deficiency.
Feedback
Have you found that your ME/CFS, Long Covid, or PoTS symptoms worsen in the heat? What steps have you found helpful? Have you experienced BPPV? Please share your experiences.