I was on a family holiday in Palma, Mallorca, in July 2001. One weekend we rented a motorboat and went cruising around the coast. I remember we were going fast, crashing over big waves. It was exhilarating, but also a strange feeling. I wondered if this was how boxers feel: punch-drunk.
I began to realise something was wrong only when we got back on land. I was using the washrooms at the marina, and said to my sister-in-law: “Why are the sinks coming up to meet me?” We went for a meal, and I sat in the restaurant wondering why the table was swaying. After I got back to the UK, the sensations of being on the sea increased. It made simple tasks impossible: cooking was a nightmare, all that twisting and turning you do when prepping food.
I went to my GP who told me I hadn’t got “my land legs” back yet, and gave me motion sickness tablets. But the feeling didn’t subside. I felt as if I was constantly walking on a sponge or trampoline, everything bobbing and swaying. It wasn’t dizziness: the room didn’t spin. It was more as if my body had come back to land, while my brain was still at sea. I feel it from the minute I wake up until the minute I go to sleep.
After several more appointments, I was sent for an MRI scan. I remember feeling disappointed when they didn’t find a brain tumour: at least that would have explained things. At one of my last appointments with the ear, nose and throat specialist, he said, “I know there’s something wrong with you, Jane, I just don’t know what.” I felt that the whole world had collapsed. How was I supposed to live with this feeling, not knowing if it was ever going to go away?
I started to do my own research. In February 2002, I got an email reply from the Vestibular Disorders Association in the US to say that, although rare, it knew of a condition called Mal de débarquement syndrome (MdDS). Most bouts last a few days or weeks, but some cases can last years. It can be triggered by any sort of travel – by boat, plane or even train. Hearing the potential diagnosis, I could have cried with happiness; I’d started to think I was going mad.
I got a confirmed diagnosis from the National Hospital for Neurology and Neurosurgery in London. But they told me there is no cure, and all they could do was help me manage my mental health.
Certain triggers would set off particularly bad episodes, such as sitting at a computer for a long time without a break. For the first few years, just walking down a supermarket aisle, with all the visual stimulus coming towards me, could be overwhelming.
I’m not ashamed to admit I was close to suicide. If it hadn’t been for my teenage son, I probably wouldn’t have carried on. I started taking antidepressants, which helped me to cope.
Nearly 20 years on, I’m still living with MdDS. Some people find that benzodiazepines take the edge off. Others suggest hypnotherapy. I’ve heard of all sorts of weird and wacky theories, but nothing has worked for me. I never say that I’ve learned to live with it because that gives the impression I’ve given up on finding a cure, or even some kind of medication to manage the symptoms. I hope something will be discovered within my lifetime.
For me, one way of coping has been to educate people about the condition. I’ve found fellow sufferers all over the world, and have set up a website and UK support group in the hope that no one else has to go through what I did, struggling to get a diagnosis. I’ve even contacted Nasa, who told me it is aware of MdDS in astronauts.
One of the most peculiar things about MdDS is that it’s motion triggered, and yet motion – by car, train, plane or boat – can bring temporary relief. Some chronic sufferers become almost like travel addicts, craving that release.
I’ve continued to travel a lot – from Brunei to Disneyland, where I rode every white-knuckle ride there is, hopelessly trying to jog something back into place in my brain. But so far I’m still at sea.
• As told to Malcolm Jack
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Source: TheGuardian
