Question

I developed ME a few years ago and have all of the main symptoms including occasional problems with balance or unsteadiness, especially when I’m tired. Over the past few months my balance/ unsteadiness has become more persistent. I’ve also had a couple of episodes when I’ve come off an escalator (which I no longer do) and nearly fallen over. My GP has checked me over (nothing abnormal was found) and prescribed a drug called Stugeron/ cinnarizine, which hasn’t really helped.

What else can I do? Just put up with it?

Answer

Balance problems are commonly reported in ME/CFS. They tend to be described as being more like unsteadiness. Some people describe it as ‘walking on rubber’ or ‘feeling a bit drunk’ – rather than the spinning round sensation of vertigo. We don’t really understand why balance problems occur in ME/ CFS. However, there are a number of reasons why this problem could occur. One possibility, for which there is some research evidence, is a problem with the vestibular system in the inner ear – which sends messages to the brain about body position, movement and balance.

Your GP can carry out a simple test – the Fukuda stepping test – of vestibular function in the surgery.
If you want to follow this up, it is covered in more detail in the MEA purple book or by doing an internet search. A more general test that doctors use to assess balance is called a Romberg test – where you stand up straight with your eyes closed.

I know of a small number of people with ME/CFS who have developed what is called Meniere’s disease – although there is no research evidence of a direct link to ME/ CFS. Meniere’s disease should always be considered where balance problems are accompanied by tinnitus (noises in the ear), hearing loss and a feeling of pressure deep inside the ear. Meniere’s disease often starts with sudden and unpredictable attacks of vertigo accompanied by nausea, vomiting
and dizziness.
Unfortunately, there isn’t a simple and effective treatment for these type of balance problems.
There are prescription and over the- counter drugs that sometimes help. Examples include the one you mention – Stugeron/cinnarizine.
This is an antihistamine drug that is used for travel sickness and vertigo. However, this drug needs to be used with care if you have ME/CFS as it can cause daytime sleepiness as a side-effect.
There are also what are called balance-retraining exercises which could be discussed with your GP. On a personal basis I have not found them helpful and feedback from people with ME/CFS has been mixed.

Another possible reason for balance problems in ME/CFS, especially if they are associated with feeling faint or sweaty, and occur when changing from lying to standing position, is what is called autonomic nervous system (ANS) dysfunction.
The ANS sends messages to the heart and blood vessels to control heart rate and blood pressure. If this control system isn’t working properly, as frequently happens in ME/CFS, your blood pressure may fall quite quickly on standing, along with a sudden drop in blood supply to the brain. This will affect your ability
to stand up and remain standing, and is called postural hypotension.

Postural hypotension can be checked in the GP surgery by measuring blood-pressure change in relation to posture, or by what is called a tilt table test in hospital if the problem is more severe. Again, there are drugs and exercises that may help, especially if symptoms are more severe. This type of ANS dysfunction can also cause a rapid rise in pulse rate when moving from sitting/ lying to standing – a condition called postural orthostatic tachycardia syndrome or PoTS.

Finally, it’s important to note that there are a wide range of medical problems affecting the ears, brain and heart that can result in balance problems that
have nothing to do with ME/CFS.
So you really do need to go back and discuss what is happening with your GP because while your balance problem may be related to ME/ CFS – as I’ve described – it could also be due to another problem that has nothing whatsoever to do with ME/CFS. In this case you may need to be referred to a neurologist, cardiologist or a hospital ear nose and throat (ENT) department – who are the experts when it comes to assessing and treating dizziness, vertigo and balance problems.

Reference: Palaniappan R and Sirimanna T.
Peripheral vestibular dysfunction in chronic fatigue syndrome. International Journal of Otorhinolaryngology, 2002, 64, 69 – 72.

Further information

NHS information on Stugeron/cinnarizine:
https://www.nhs.uk/medicines/cinnarizine/