Living with Functional Neurological Disorder

By Vanessa Correa

It was some time during 2010 when, unknown to me at the time, my life was starting to change. It all started with the occasional fainting episodes. Irrespective of what I was doing, all of a sudden I would faint and would not wake up for at least a couple of minutes. Little did I know that this would be the beginning of a very long struggle which would change my life and that of so many members of my family.

I went to the doctor in the Primary Care Centre and the investigations began. The first diagnosis did not take too long to arrive. I was told that my fainting episodes were caused by a condition known as Syncope. This is a condition which is commonly known as fainting or passing out. It is a loss of consciousness and muscle strength characterised by a fast onset, short duration, and spontaneous recovery. It is caused by a decrease in blood flow to the brain, typically from low blood pressure.

I was then sent to UK as a sponsored patient where after further tests they confirmed my condition and I was prescribed medication. I then returned to Gibraltar where I continued with my medication which was definitely helping.

The fainting episodes stopped and I was still being monitored by my doctor. About a couple of years later, my doctor at the time decided to stop my medication and it appeared that my Syncope condition was history.

I was then able to enjoy a normal life with my family and in 2012, my husband and I decided to try for our third child. We had previously been blessed with two lovely boys, but as they were growing older, we decided to try for another child. The early stages of my pregnancy went well, until I suffered a miscarriage.

I had to go through the ordeal of an internal clean in the Day Surgery. After a short break, as advised by doctors, we decided to try again. This time the early months of my pregnancy went well and we were told we were going to have a baby girl. We were over the moon with this news and couldn’t wait to have our little girl in our arms.

Unfortunately, nature, life or whatever you want to call it had different plans. It started with the occasional spotting, but I was assured that everything was ok. At about five months into my pregnancy things got a lot worse.

I returned to maternity ward as a result of continuous spotting which was quite concerning, although I could still feel my baby moving inside of me. I was examined by the doctor and the look on her face was quite alarming.

She appeared shocked when she told me that my baby was going to be born prematurely and that there was no chance that the baby would survive the birth. I was admitted to the ward and they gave me medication to try and delay the birth. Unfortunately, this did not work and I had to go through the natural birth of a very small and premature baby who did not survive the birth. It was the worst feeling ever.

I suffered, my husband suffered emotionally as this was the worst feeling we had ever experienced. When pregnant, everyone dreams of walking out of hospital with their new-born baby in a pram, unfortunately, we did so with our baby in a coffin.

We were totally broken and weren’t looking forward to telling our young boys who would struggle to understand why their baby sister would not come home. I was told in hospital that this was a one in a million and that if we really wanted another child, we should try again.

I thought I had dealt with the emotional trauma of losing a child. We decided to try again. My pregnancy started well. Spotting again and again being reassured that my baby was doing well. This would obviously be a very nervous time for me after my last experience. We were once again told that we were expecting a little girl.

Unfortunately, what I was told before to be a one in a million situation when I lost my first girl happened again. My second baby girl was also born prematurely after five months and didn’t survive the birth. We were living our worst nightmare once again.

I have always been told that I have a cheerful and stoic personality and after a period of mourning with my family, life had to continue. We were very lucky to have two lovely little boys and we always wanted to give them the best upbringing we could, so life had to continue. Obviously, neither of the two little girls we lost will ever be forgotten, but I thought I could continue with my life as normal. Unknown to me at the time, all that stress was boiling up inside of me and this would eventually come back to haunt me.

Roll onto 2021, when once again, the fainting episodes returned. It was a bit of a shock for the whole family. This time, the fainting episodes were happening more often and they were always unexpected and more violent.

My episodes would happen anywhere and at the time would more likely than not result in an emergency call for an ambulance. On more than one occasion I was admitted to hospital for observation. There were also a number of times when I was admitted with the initial intention of being discharged the next day, but as my episodes continued and I was having multiple episodes in a 24-hour period, I would be kept in for longer and eventually discharged.

I went through numerous testing in Spain and Gibraltar over a period of several months and eventually, during an extended stay in hospital, given a diagnosis of Functional Neurological Disorder (FND) and Epilepsy.

I was also told that if further symptoms appeared, I should not automatically assume that it was FND and should always seek medical advice. Having a diagnosis gave me some peace of mind, but I avoided discussing FND with well-wishers as that was quite difficult to explain as the unknown condition was also quite hard to accept and understand.

My fainting episodes were now being called seizures. During the next few months I was prescribed multiple types of epileptic medications in various dosages. Each type of medication would start well and would help for around a couple of weeks, but unfortunately, the seizures would return.

This would normally result in a return to hospital and, again, extended stays in hospital. Before Christmas 2022 I was in hospital. I was lucky to be able to go home for Christmas with my family but unfortunately, just after Christmas I had to return to hospital. 2023 was celebrated with my husband and two sons in hospital with orange juice.

Later in 2023, just as we were planning to visit my eldest son in university I returned to hospital again. This time, things got a lot worse. As doctors believed my seizures were epileptic, as a result of having so many seizures in a 24-hour period, sometimes over 20, I was moved from the ward to the Critical Care Unit.

The seizures continued and as doctors were concerned about the effects this could have on my brain, the decision was taken to put me in an induced coma for 72 hours. Unfortunately, the hope that this would give my body a type of reset and stop the seizures did not work but it did cause me to get pneumonia.

Seizures continued and in September 2023 I was sent to Chalfont Centre for Epilepsy in Buckinghamshire for further testing where they concluded that my seizures were not epileptic as first thought but indeed functional.

It was now confirmed that I did not have epilepsy and was now given the news that my condition was Functional Neurological Disorder and told to slowly stop taking the concoction of epileptic medications as they were of no use to my condition. I then returned home knowing that there was nothing available in Gibraltar to help me with my condition.

The seizures continued and now I didn’t even have the hope that any medication could help me as there are none available for FND. The only way that FND can be treated is by a multidisciplinary approach where they work together to retrain the brain. Put simply, FND is a condition which affects the messages that the brain sends around the body; this could be as a result of a major injury or a psychological trauma but this is not always the case.

FND is also a condition which if not treated properly, like most conditions, will get worse and the longer the condition is left untreated, the harder the road to recovery. More symptoms are now appearing and I now have head twitches, difficulty walking, constant body aches, occasional blurry vision, incontinence and spasms affecting different parts of my body as well as my seizures which are now lasting longer than ever.

I am now receiving support where I stay in John Mackintosh Rehabilitation Ward when my husband, who works shifts, is working and return home when he is off work as I can’t be left alone. I am currently on the waiting list for Queen’s Square University College in London which has a specialised FND unit. There is a very high demand for their services and I am patiently waiting but I am lucky to be able to count on the support I am currently receiving whilst I wait.

The reason for writing this article is to raise awareness of FND. I am aware that I am not the only person in Gibraltar living with this condition but it is a relatively unknown condition which is still being researched. I am still hoping to be able to live a normal life after treatment in UK.