This is the case for Faye Selkrig, who has been battling with the feeling of dizziness and being off balance for 15 years since taking a fishing trip in 1999. After countless doctors’ visits came up with no diagnosis or treatment, Faye’s daughter Glenda spent three years trawling the internet for clues to the cause of her symptoms and finally came across a little known condition called Mal de Debarquement Syndrome (MDDS).
“MDDS is a balance disorder where people experience symptoms of continual unsteadiness and dizziness and find it difficult to keep their balance,” explained Dr Alan Pearce, a neuroscientist with Deakin University’s School of Psychology.
“The condition is extremely debilitating and prevents sufferers from doing the simplest of tasks such as hanging out the washing, showering or going to the supermarket. It is also difficult to diagnose and with no known treatment, which is why people like Faye find themselves feeling helpless and abandoned by the health system.”
Dr Pearce is looking for people to take part in the trial of a potential treatment for MDDS that he believes will give people like Faye new hope for a normal life.
“Given the condition is so rare, with only 2000 known cases in America, and the difficulty of diagnosis, it is possible that there are many people in Australia who do not know that what they are suffering with is MDDS,” Dr Pearce said.
“For the trial I am looking for people who have the symptoms of MDDS (persistent dizziness, feeling off balance etc) and have not been diagnosed with other conditions such as inner ear infections or Meniere’s disease (excess of fluid in the inner ear).”
The trial involves sessions of Transcranial Magnetic Stimulation (TMS), a safe and painless way of delivering electromagnetic pulses into select areas of the brain. TMS is often used to treat conditions such as depression, autism, and anxiety.
“All that we currently understand about Mal de Debarquement Syndrome is there seem to be some changes in brain activity, particularly in the sensory and motor areas, that is affecting balance. So we are looking at ways of altering the activity of the brain by using TMS.”
It was Glenda’s persistence with finding a way to help her mother that first brought MDDS and the potential of transcranial magnetic stimulation as a treatment to Dr Pearce’s attention.
“After mum had a fall and broke her shoulder I was pretty much frightened into action and became more determined than ever to do something to help,” Glenda said.
“Over years of searching the internet for answers I came across MDDS and one site suggested transcranial magnetic stimulation could be helpful. Another web search and I found that Alan was working with TMS so I contacted him and asked for his help.”
After familiarising himself with MDDS, Dr Pearce has spent the last year treating Faye with a session of TMS each week. With Faye showing some improvement, Dr Pearce decided to move into a full trial of TMS as a treatment for MDDS.
“Since having the treatment I have more good days than I used to,” Faye said.
“I am starting to be able to do everyday things like cooking, showering and dressing myself without feeling dizzy or like I am going to fall over.”
After years of doctors’ visits and tests, being told “there is nothing wrong with you; it’s all in your head” and sent home with the advice to breathe in and out of a paper bag, Dr Pearce’s research is the lifeline Faye and Glenda have been searching for over 15 years.
“It would be great to see mum live a normal life, she can’t even hang the washing on the line or those little things that we take for granted. And even though we haven’t found a cure for the condition coming to Alan has been the best thing that has ever happened as it has given us a sense relief that we at least have got something to put our hope in,” Glenda said.
And for Faye, she is hopeful that TMS will provide her with a new quality of life.
“Ever since I got off that boat in 1999 I have had dizziness, losing my balance and years of frustration. With Alan there is now hope,” Faye said.
Hope that could soon see Faye back on the green taking part in her favourite past time – lawn bowls.
For more information about Dr Pearce’s study, or to register as a participant, phone (03) 9251 7224 or email [email protected]