Patient Perspective on Brain Health Series

Living with an undiagnosed neurological condition for almost 30 years

‘I wish I could have been stronger and empowered in my younger self to have pursued an answer to this’

I am Nadia, from Greece, living with chronic pain for the most part of my life and about to celebrate my 47^th birthday. The cause of my pain has an underlying diagnosis which is an autoimmune disease called Ankylosing Spondyloarthritis. I also have Osteoarthritis in my hip. I have some other comorbidities too, such as hyperlipidemia, bradycardia (which is a form of arrhythmia) and I used to live with a severe form of endometriosis that led to my hysterectomy. All these are my diagnoses. But since my adolescent years, I have been having some episodes, that up until a few years ago, were just happening- disrupting my life. There was no explanation for them and no treatment or way to control them.

I remember being 17years old, walking down the street during summer vacation and having an episode- fainting and coming to my senses a few moments later, with strangers asking my name and helping me get home. These episodes kept on happening once per month, around my monthly period, usually accompanied by a high pain level and irritable behavior or mood swings. As soon as the episode ended, I would immediately feel sleepy, extremely tired, unable to resume my previous task. The years went by and these episodes kept on happening once or even twice per month right before I got my period. Things got worse after I gave birth to my daughter, in 2002.

In 2004 I was diagnosed with Ankylosing Spondylitis. This brought pain to my daily life and my episodes became even worse. Now, once or twice per month, I would become irritable, dizzy, get some type of an aura, and right after that I would faint- not losing my consciousness completely but would be in a state of unresponsiveness and unable to move. This would become my new way of living.

I was referred to a cardiologist who diagnosed my bradycardia but did not come up with an answer as to why I was having these episodes. And the neurologist I visited was not able to observe them, hence explain them. All tests came back normal. My neuro exam was normal. But the episodes were still there, like clockwork, once or twice per month.

I could not travel because I always needed someone with me. I do not to this day have a driver’s license because what could happen if one of these episodes were to occur while I would be in the driver’s seat? I’ve had an episode being on a bus and we had to wait for an ambulance to come and bring me to the hospital. I’ve had an episode while swimming in the sea and barely had time to make it to the seashore. I’ve had an episode while in the supermarket with my daughter, 7 years old at the time, and she was so scared that she did not know how to deal with me. Once I had an episode and was lying in the bathroom floor, behind the door, and my family could not get in the bathroom to help me. I’ve had numerous episodes at my workplace, feeling embarrassed and weak among people I never would have chosen to show my weakness to. And this has been my reality for the better part of my life.

In 2020, my neurologist who is treating my essential tremor had to change my medication. I used to take a beta blocker, but we switched to an anti-seizure medication. And suddenly my life changed! My episodes stopped. I’ve had 3 in the past years and only because I forgot to take my medication. This has been lifechanging for me. My neurologist says I have been living my life with having absence seizures, in a form of epilepsy still not officially diagnosed. These types are not easy to diagnose as they are not easy to observe. I am relieved because a) she paid attention and spent some time listening to me and b) she helped me have a new reality. Living for so many years with chronic pain has had a detrimental effect on all aspects of my life. I’ve had doctors, even to this day, recommending or subtly suggesting that my pain is fictional, emotional, psychological.. anything but real. I have never pursued a diagnosis for my episodes because I never believed that anyone would take me seriously in describing what was happening once or twice per month. I’ve had a doctor suggesting at one point when briefly mentioning it that it might even be a hysterical reaction, due to stress.

I wish I could have been stronger and empowered in my younger self to have pursued an answer to this more persistently. I am now aware that there are more people like me, living with such conditions that are not fitting the clearly defined diagnostic criteria and that leads to missing out on quality of life and years passing by in limbo.  I really hope things could become better in terms of awareness, education and communication between patients and doctors.

I am really happy that today I have claimed a large part of my life back. Since the episodes are finally under control I am now taking driving lessons, I have been traveling freely and alone, I can do whatever I like without hesitating! And I know it’s a more carefree situation for my beloved daughter and husband who have had to live through it too.