“You know how the washing machine starts spinning first and then it’s very quickly getting hot-I feel like I’m on a superfast spin.”
Michele Reynolds Cole, from Rochdale in Greater Manchester, asks me what it’s like to survive without Gabitril, the medication she’s been using for eight years to minimize the intensity and frequency of her seizures, which usually occur around once a week.
“My little jerky motions have begun to return and I’m just really waiting for the next fit.”
Since I first befriended her in early October, Michele was already used to eating out her tablets, taking only one day rather than the two she’d been prescribed, because her doctor had run short.
They were out of stock a couple of weeks later, and she became extremely anxious.
She suffered sharp involuntary spasms without Gabitril, which meant that when touching warm food or drinks she was a threat to herself and others.
She was also at risk of physical harm as she was capable of hitting her head after falling during a fit, and she received round-the-clock care from either her elderly mother Pam or her 20-year-old daughter Lily.
“I rung hospitals, suppliers, found an unlicensed company online, I also rung America,” she added, outlining Gabitril’s futile search.
“I don’t recognize why I soon won’t get my drug.”
“Does anyone have to die of a convulsion before anybody notices it?”
For some cases, swapping one drug with another is relatively straightforward, but with epilepsy, even a slight change in medicine can have devastating consequences.
Clare Pelham of the Epilepsy Society explained:’ People will be familiar with migraine pills, where you can take one or the other, and both would work.
“This is not the same with epilepsy medications. That tiny switch may mean you will get a breakthrough convulsion, and you only need one to lose your driving license.”
Many people need their license, either for school or for work. Epilepsy is just one of several conditions for which people often fail to access drugs.
GPs, pharmacists and acute care physicians have told us that the current lack of prescription medications and therapies was “unprecedented.”
Last month, in the wake of news that women dealing with the disease had to import medicines overseas, the government banned the sale of all Hormone Replacement Therapy medications used to combat the distressing symptoms of menopause.