Waiting for a diagnosis of any condition can be frustrating, especially when you are experiencing symptoms and you are unable to treat them…
Katy tells her story of how she waited 12 years before she was diagnosed with epilepsy.
I was finally diagnosed with epilepsy in April, after 12 long years of not knowing what was wrong with me…
My falls, twitches, jerks and tics were later diagnosed as atonic and myoclonic seizures.
In February, my health took a severe turn for the worse and I spent weeks having test after test. I think I’ve been to pretty much every department in the hospital now!
Eventually, I saw a neurologist who arranged for me to have an EEG. Thankfully, they managed to provoke a seizure – by having me breathe in and out very deeply – during the EEG and they could immediately see it was epilepsy.
Finally, I had the answer I had been waiting for.
Of course, I expected a miraculous recovery and by the weekend I would be back to my old self. Sadly, it doesn’t work like that and epilepsy medication is a tricky thing…
Finding the right medication
It takes months to get to the right dose and be fully effective. Sometimes you may need more than one type of medication or to gradually increase the dose until the seizures are under control.
Nobody told me how exhausted I would be, how I wouldn’t be able to get out of bed some days. The levels of medication were so high that I felt like a zombie and was still having some seizures.
I’m still very much a work in progress and I speak to my neurologist and epilepsy nurse on a regular basis.
Keeping myself safe
I use an app on my phone to track my seizures, which I find really useful. I can add triggers and side effects to my medication. I can also print it off and take it to my appointments.
I have been referred to a care team to have an alarm to wear around my neck for when I am home alone. It will give me peace of mind that I won’t be stranded on the floor all day while everybody is out.
Nobody wants to be diagnosed with epilepsy but these are the first steps to getting my life back. At the moment I am housebound, in a wheelchair and unable to do even simple things alone.
With the right help and support I will be back to being independent again and living, instead of just surviving.
To anybody looking for a diagnosis…I would say keep pushing, don’t give up and make sure you get heard.
Many professionals will try and dismiss you and I was told many times it was anxiety or stress. Keep going back until somebody listens to you.