Life With Epilepsy: Acceptance, Courage, Strength & Determination
By Lesley Donnelly
Living with Epilepsy
I was born in the UK but lived in Zimbabwe for over 46 years, where I had a good education and was a champion swimmer and diver.
Unfortunately, I hit a diving board at the age of 14; at 16 my epilepsy started. I am now 65 years of age.
Diagnosis in Zimbabwe was difficult due to a lack of specialists, and I was sent to Groote Schuur Hospital, Cape Town, South Africa, for further observation.
Once diagnosed with epilepsy the ‘change of routine and lifestyle’ began!
I was lucky to have a very supportive family, completed my ‘O’ Levels, went to Polytechnic, did a Secretarial Diploma, and found employment in a group of hotels back in Zimbabwe where I remained for over nine years and longer.
At the age of 17, I had a seizure whilst driving so decided not to drive again which was a disadvantage, but my family, husband, and friends were all supportive and assisted with transport when required.
Everything was running smoothly, I was on medication which obviously had its side effects, but I would not let this get me down.
Unfortunately, the situation in Zimbabwe changed and a move to South Africa had to be made for safety, the supply of and/or change in medication, and more expertise in the medical field/hospitals.
Here I struggled to find employment, life was very different, and my seizures had changed from focal to tonic-clonic.
I was an outpatient at Government Hospitals for several years and remained on Carbamazepine and Phenytoin which stabilised me at that stage.
Epilepsy South Africa
During my 14 years in South Africa, and due to lack of employment, I approached Epilepsy South Africa and requested to assist them with administration or get involved in research and/or any other sphere of work for the epilepsy organization.
I then joined the Epinews Panel, which is a group of members that have epilepsy, who compile and distribute personal stories in Epinews, Epilepsy South Africa’s bi-annual newsletter, for people with epilepsy, and offers a platform to share their experiences and stories of inspiration.
I still voluntarily co-edit this magazine today, 13 years later!
During this time, my passion was to open my own motivational, community Facebook page for people with epilepsy.
I did this in 2013, and I am proud to still be running this today with over +12000 Likes, whereby I offer support and advice to anyone with/or affected by epilepsy.
Anyone is welcome to visit, like, and share the page: just click here.
Once again, due to a lack of medication, doctors, and difficult times in South Africa, another relocation had to be made, but this time even further away, and to another country. I have now settled in Northern Ireland for five years.
Life here has not been easy due to a very different climate, new doctors and health system, change to newer medications and testing all over again, but due to the valuable National Health Service (NHS), I now have access to a proper Neurologist and good General Practitioner and get EEG and MRI testing when required.
Diagnosed with a Brain Aneurysm
MRI testing has been so valuable that whilst under review in 2017, I was diagnosed with a brain aneurysm. I then underwent surgery in August 2019.
This was a difficult six-hour operation, whereby they attempted to place a stent to keep the blood vessels open.
A stent acts as a scaffold to prevent the narrow section of the artery from collapsing back and staying in the artery permanently.
It supports the walls of an artery to keep the blood vessel open and blood flow to the brain.
Stents can be made of metal or fabric. Fabric stents sometimes referred to as stent grafts, are used in larger arteries.
Unfortunately, the stent broke during the operation, so the Neurosurgeon proceeded with scaffolding.
The operation was done through the groin, which was painful and took me a long time to recover from, but with determination, I am proud to say it was successful.
I now remain on Aspirin for life and have since been for further angiograms, which have proved that the treatment is working. Hopefully, no further operations are now required.
An angiogram also called an arteriogram, is an X-ray of the blood vessels. It can provide images of the blood vessels in many different organs.
As a result, angiograms often help doctors diagnose conditions affecting the heart, brain, arms, or legs.
A long, narrow tube called a catheter is inserted into an artery located in the upper thigh or groin, contrast dye is injected into the catheter and takes X-rays of the blood vessels.
The contrast dye makes blood vessels more visible on X-ray images.
Change to Seizure Pattern
After this operation, my seizure pattern changed back to focal seizures, and medications have been altered repeatedly, which I have found so unsettling.
From being on Carbamazepine and Phenytoin in South Africa, I have since tried Tegretol, Vimpat, Lamictal, Topiramate, Zonisamide, and Oxcarbazepine (2017 – 2022).
Unfortunately, taking Oxcarbazepine in December 2021 for eight weeks gave me hyponatremia (low sodium levels).
Whilst in hospital the endocrinologist diagnosed SIADH (Syndrome of Anti-Diuretic Hormone) which is a condition in which the body makes too much antidiuretic hormone (ADH).
This hormone helps the kidneys control the amount of water your body loses through the urine.
SIADH causes the body to retain too much water, so I am now restricted to the number of fluids I drink daily, together with having to take six slow sodium chloride tablets on a permanent basis.
Click here to find out more about SIADH.
Advice to Anyone with Epilepsy
I was then put on to Pregabalin (March 2022) in combination with Phenytoin which I have taken for over 35 years now.
This is still in the ‘testing stages’ and not seeing the Neurologist for so long now due to the backlog in our health system has not made the situation easy.
I have been lucky enough to remain on his list for telephone consultations in the meantime and am able to communicate with the epilepsy nurse should I encounter any serious problems.
My focal seizures follow a strange pattern; approximately 12 to 14 days of no seizures, then three to four days of cluster seizures. I will not give up hope that the right medication eventually will be found.
Unfortunately, side effects affect us all differently, but through willpower, courage/strength, patience, and understanding I have never given up the fight to find a solution!
My advice to anyone with epilepsy is to know that YOU may have epilepsy, but epilepsy does NOT have you!
This article was originally published here, and is presented with the author’s kind permission.