Dizziness and a feeling of movement, even when still, can be a symptom of MS. Willeke van Eeckhoutte understands this all too well.
I crashed into my first full-blown vertigo attack weeks before my multiple sclerosis diagnosis.
Aside from having a predisposition for fatigue and frequent bouts of neuropathic facial and eye pain, some of my other MS symptoms have been vertigo and issues related to my balance.
Before my diagnosis almost 14 years ago, I had brief spells where I would lose my balance when cars or trains drove past me when I was walking or standing still on the street. It never occurred to me that this could be a indication of something bad, but I didn’t particularly try to understand it because I wasn’t worried enough to search for answers.
The first time I experienced vertigo
My first proper vertigo attack was as frightening as it was worrying.
I was on a business trip in Barcelona. I had added a few days to my trip to explore the city, take in the sights and explore the work of the artist Antoni Gaudí. I love architecture and history, and had scaled architectural heights many times before, so walking up a small staircase in the basilica seemed like it would be easy enough.
It turned out that it was not the case.
I felt physically sick walking downstairs and once on firm ground I had to sit down for 10 minutes before feeling well enough to continue. The false sensation of movement lasted for three more days, but I attributed this to the four flights I had been on in a short period of time before travelling to Barcelona.
Another piece of the MS puzzle
A few weeks later I went to the emergency room and was admitted into hospital for 10 days with a long list of symptoms including vertigo, severe fatigue and trigeminal neuralgia which, according to Mayo Clinic, is a chronic pain condition where even mild stimulation of the face may cause extreme pain.
Soon after I was diagnosed with MS.
With the diagnosis laid out on my neurologist’s desk it quickly dawned on me that those quirky malfunctions were actually all indication of how fragmented my central nervous system was.
What is vertigo?
Vertigo is often incorrectly used to refer to a fear of heights or acrophobia, which is an extreme fear of being removed from the ground. It is also occasionally used interchangeably with dizziness, but they are not the same.
Dizziness is the feeling of being lightheaded, disoriented or confused as if you’ve lost your balance. While not a disease in itself, it can be caused by a problem in the inner ear and can therefore affect your sensory organs. Dizziness could be triggered by ear infections, anxiety, dehydration, anaemia and many other conditions.
Medical vertigo (or disequilibrium) on the other hand, can cause dizziness and creates a false feeling of being on a fast-spinning merry-go-round. It feels as if you, or everything around you, is moving and makes you feel nauseous and like you’re about to fall.
According to MS Trust, one in five people with MS experience spells of vertigo. In some it can seriously disrupt their lives, affecting daily tasks like walking up or down stairs, standing on chairs or ladders, driving, dancing, going to the gym, cycling, etc.
How vertigo affects my life
After a few near-misses during vertigo attacks, I have since developed a fear of certain daily tasks. Vacuuming staircases, getting on a chair to check the main circuit breaker or fixing anything that requires a ladder to reach it is now approached with trepidation and extreme caution.
Two months post-diagnosis, my job required me to move to a different floor of the building with a new team. I was so disorientated from the recent move that it suddenly felt that the floor was tilting up and down and from left to right. It was hard trying to make sense of my surroundings.
But it didn’t end there - my lunch felt as if it wanted to crawl back into the kitchen where I found it and my ears were ringing as if a doorbell was plugged into them. Even lying in bed at home felt like I was on a flying carpet, without a GPS.
A few days later I contacted my MS nurse and she calmly explained that the spells of vertigo didn’t mean I had necessarily had a relapse. She also added that I would have to get used to situations like this where symptoms like vertigo might come and go with no warning.
What I’ve learnt about living with MS and vertigo
- Vertigo and dizziness should be taken seriously regardless of the reason. Vertigo can be dangerous so seek medical help as soon as you experience vertigo-like symptoms.
- Ask a physiotherapist to design an exercise plan that can mitigate the impact of dizziness and other symptoms.
- Check if any of your current treatments can cause vertigo.
- Regulate your water intake to avoid dehydration and water retention.
- Reduce your caffeine intake to avoid fluid loss.
- Reduce or avoid alcohol intake.
- Avoid nicotine as this causes blood vessels to constrict which leads to a lower blood supply to the ears which might increase instances of vertigo
While pretty scary at first, after living with MS for 14 years I now recognise, understand, and deal with symptoms in a much better way than I did after first being diagnosed. That said, I still battle with staircases, ladders and chairs. A situation involving the former combined with a vacuum cleaner and something breakable is therefore a big no-no. But that’s okay. I’m not Superwoman – lycra and I don’t mix.
NPS-IE-NP-00160 December 2020