Hi there folks, and welcome back! Welcome to another week of a blog, that of blog 13, though this is not unlucky for some! We hope you're enjoying what you've read on our website, enjoying our youtube channel, and are interested in our products that are made with the aim of helping blind and disabled people into employment and the quality of our products is second to none!
This blog will focus on living with epilepsy and other disabilities, hopefully with the eventual intention of showing you that it is possible to lead a fulfilling life with the right treatment and lifestyle.
I was first diagnosed with epilepsy aged 24, though we suspected that there was something wrong for 10 years or more. Mum and I came up with several possibilities ranging from teenage hormones, adolescent changes, stress with exams and university work and so-on.
I felt strange, had a strange smell, disheveled sensation and I would often blackout. I wouldn't be aware of anything. I would become feel groggy, confused, and sometimes with tears on my face. I would feel exhausted for the rest of the day. Mum was concerned, though the staff at boarding school inferred I was a liar, one house parent said, "We would have seen it." I'd have these spells 10-15 minutes after waking up, so when I was getting washed and dressed for school.
I had several MRI scans for different complaints over the years, though it wasn't until I had an accident at a voluntary placement which left me traumatised, and then a UTI which left me hospitalised and which doctors suspected I had sepsis, that more tests and another MRI scan were carried out thanks to another doctor who was on the all, kind, patient, understanding, need I go on?
Thanks to the latest scan, they found a white mass on my brain. I'd had several brain hemorrhages as a microtonal as I would be called these days. (See our website on my mini-bio.)
Ongoing to a neurologist and mum giving histology, going for further tests and before going to see him, a friend told me to keep a diary of my symptoms etc, I was finally diagnosed with complex partial seizures, these days called focal unawareness seizures. I asked why nothing had been picked up before, and the specialist told me that in recent years, the magnets in MRI scans have become more sophisticated, so they can pick up changes that would have been missed previously. He thought I'd had it all the time.
Retrospectively, and even today, I felt a sense of relief. We'd known there was something wrong for years, and now we had a diagnosis, something we could manage, although it hasn't been easy. I had counseling and talked a lot, though it's taken many years to come to terms with, though I'm doing it.
I've tried 3 medications, Lamotrigine which made me very depressed and tired, Keppra which made me anxious, and currently on Brivaraxetion which is an updated version of Keppra. So far, it's not been too bad. I had a lot of headaches and flashing lights for months recently, though on speaking to my consultant, she thinks that it could have been partly due to stress, though partly due to the condition itself. She upped the dose which has helped. I've always had headaches, and she thinks that this is just the way it is. We just have to plod on, that's how I view it. I do often feel tired, though that's due to the medication. Still, we just plod on.
I love being a mum, and Margot is a cheeky little mare, full of mischief and a 6-year-old's lip! Although she is very kind and caring when she wants to be..!
I had frequent scans when I was pregnant with Margot. With older epilepsy medications, babies were often born with Kleft pallets and brain and memory troubles. Women weren't educated and the doctors didn't know much about the effects on fetal development. With the newer tablets like Keppra Lamotrigine and now Brivaraxetion, problems are less likely to arise, though you are advised to take folic acid to stop problems in the baby's spine when it is developing. According to the NHS website, pregnancy, and epilepsy (2022), it states, "If you're taking medicine to control your epilepsy, you will need to take 5 milligrams (5mg) of folic acid once a day as soon as you start trying to get pregnant
This will need to be prescribed for you, usually by a GP, as it is a higher dose than normal.”
I can have triggers, things which make a seizure more likely to happen. One of the massive triggers is the lack of shut-eye. Stress can be a big factor too, though it is amazing what a positive mindset can do. My training and exercise that I do really helps to keep my mental and physical well-being good. Eating well is also important, though I can be a naughty knickers when it comes to chocolate, though can't we all? I'm giving it up for lent for 40 days, so pray for me guys, and see if I can undertake the chuck the chocolate challenge!!!
I have several more blind friends who do have epilepsy. They and I think the same, that if your blind with other challenges, each challenge compounds itself so you have to work harder in everyday life. Also, we all think the same that stress and lack of sleep are big triggers for a fit. It can take many months or years to get medications and their levels right, though, with support and love from your family and GP, you can lead a normal life in time. I believe that challenges can one day be overcome by patients, and learning to love and accept yourself for who you are. It is a lifelong learning curve to accept and love yourself no matter who you are and be proud of what you've achieved. I think no matter who we are, we have come a long way to strive to do our best, and we need to embrace who we are no matter who we are, and live life to the full!
I hope you’ve enjoyed reading this little number, and number 13 won’t be unlucky for some!