Welcome to 2018s first grasp of epilepsy news. I’ve gathered more information that only claims something has happened, and that people with epilepsy will, could be or have been affected by it in either a positive or negative way. Are you interested?
I’m afraid I’ve not been able to write as much about epilepsy-related news this week. One new 9 am to 5.30 pm job started for me just yesterday, and I only heard about it on the Friday before that too. It has made it more difficult to bring you as much news about epilepsy, but if you search for the word on Google, then I’m sure there’s more you can find for yourself as well!
Anyway, it’s the best news about epilepsy that’s important today. I was happy to see Sodium Valproate shown on national television on Monday, and quite intrigued by the success of Cardiff Meditation this month. When improving our lives that were made difficult by epilepsy, Ms Reynolds and I certainly shared something in common.
Families Seek Compensation for Sodium Valproate Damages
In Ireland, a number of families affected by Epilim are looking to sue the AED’s manufacturer, due to being fully unaware of the dangerous side-effects the drug holds while pregnant.
Although a warning label has now been added to the packaging, it wasn’t instated until 2014. Before then, thousands of women are said to have gone on to have children born with disabilities and abnormalities due to the sodium valproate side-effects nobody chose to tell them about.
Of about forty Irish families looking for compensation, two women report having miscarriages due to the drug. Among the others, the inner-womb side-effects implanted include foetal malformation, seizures, spina bifida, cerebral palsy, autism, developmental problems, premature births and behavioural issues.
Many of these cases are being represented by Galligan Johnston, a law firm based in Dublin that supports the Organisation for Anti-Convulsant Syndrome (OACS). This charity works with parents whose children have suffered from foetal abnormalities or intellectual disabilities after being exposed to dangerous drugs in the womb.
The cases being brought forward differ quite a lot with what side-effects have caused problems, and seem to hold a fair chance of bringing the manufacturer, Sanofi, in towards justice. The drug is currently under review by the European Medicines Agency after it found that 30-40 percent of children exposed to it went on to have developmental problems.
On Monday 22 January, the dangers and scandal behind sodium valproate were further highlighted on BBC One’s documentary programme Inside Out North West. It seems the UK Government has known about its dangers since the 1970s but chose to do nothing about it. After searching for the programme on BBC iPlayer, it’s available to watch when you wish.
Brain Training Cuts Epileptic Seizures
In Brighton, a clinical researcher may have done epileptic patients with little response to drug treatment a big favour. Dr Yoko Nagai, a Wellcome Trust Research Fellow at the Brighton and Sussex Medical School, has devised a new type of brain training that seems to cut a person’s frequency and number of epileptic seizures significantly.
She invented the technique by teaching patients to train their brains to be more alert. Previous methods to try and calm seizures have more often aimed to relax the brain. However, Dr Nagai’s newly invented technique seems to show that increasing levels of alertness has been much more affective.
When participating, volunteers used an animated computer programme that responds to a person’s level of alertness. It involved learning to move a computer-generated animated figure towards the desired goal and included “lie detector” technology, with sensors attached to patients’ figures.
When focusing on the computer figure, brain and body activity made by patients (including emotional distress and alteration in sweat glands) was picked up by sensors. These sensors made a signal that enabled the figure to move.
By concentrating on the screen activity, the technique teaches patients to acquire a sense of control. After the trial, 60% of the 18 patients involved seemed to find an adequate way to help further their control of epileptic seizures, with more than a 50% reduction after a month of therapy.
As well as that, two patients went on to continue the techniques and greatly reduced the number of seizures they once managed. Another one volunteer reported being totally free of seizures for the first time in six years.
Current trials include 40 patients with drug-resistant temporal lobe epilepsy, aged 18 to 70. In this instance, 45% of patients have demonstrated a reduction of 50% or more.
Speaking about her technique, Dr Nagai said: “Our Clinical study provides evidence for autonomic biofeedback therapy as an effective and potent behavioural intervention for patients with drug-resistant epilepsy.
“This approach is non-pharmacological, non-invasive and seemingly side-effect free.”
She also hopes this research will lead to a simple online digital computer programme being developed for patients to use anytime and anywhere in the world. It sounds like a decent plan to me!
Seizures Predicted by Monthly Brain Cycles
Further research has led to the possible prediction of upcoming seizures in San Francisco, with monthly cycles of brain activity showing that their behaviour is often related to the seizures themselves.
37 patients took part in the research and were fitted with NeuroPace implants – observations of daily cycles in patients’ seizure risk, explaining why many seizures tend to have their episodes at particular times of the day.
However, the study also seemed to show that brain irritability rises and falls in much longer cycles lasting weeks or even months. This is when the occurance of seizures is much more likely to take place, just before the peak of the rising phase of these longer cycles.
According to the research, seizures are much more likely to occur when a patient’s daily and long-term cycles of brain irritability overlap, rather than when they are mismatched.
After Seizure Reduction, Young Entrepreneur Sets up a Meditation Business
After starting to practice meditation in life, Siwan Reynolds overcame a great deal of problems that were caused by her epilepsy. Taking full advantage of what she practiced, she now owns her own successful meditation business in Cardiff.
Only 24-years-old, Siwan began to be bothered by epilepsy in her teens when she was diagnosed with it at the age of 14. With seizures coming one after another, she found a great need to try and find an alternative treatment to overcome the condition, and similar to me, meditation is something that worked well for her.
Whilst studying Psychology and sometimes struggling with epilepsy at Exeter University, Siwan chose to start practicing mindfulness meditation. At that point, her seizure levels started to decrease, and she believes that her life improved in many other ways when she was studying for her degree. After managing to improve her grades and many other aspects of her life, she felt a desire to start out her career out with a new business; Cardiff Meditation.
After building her client base with schools to begin with, Ms Reynolds is now looking to collaborate further with other businesses who feel like their workforce would benefit from meditation sessions.
She has received mentoring support from Big Ideas Wales, part of the Business Wales service that encourages entrepreneurship around the country. Her idea that only aims to improve the mental health of more people as time continues is no doubt a good one to me.
I now meditate twice a day, and it helps keep myself in a positive state mind despite the difficulties that I face in my life with epilepsy. Although it doesn’t work for everybody with the condition, I recommend that any person should give mindfulness a go.
You can find out more about meditation and the life of Siwan Reynolds at the Cardiff Meditation website.