Living in the gap between neurology and cardiology: Rebecca’s story

Leer en español

By Rebecca Blower, edited by Nancy Volkers, ILAE communications officer

---

Blower R., Volkers N. Living in the gap between neurology and cardiology: Rebecca’s story. Epigraph 2025; 27(2): 66-68.

---

When she was 24 years old, Manchester (UK) resident Rebecca Blower began having episodes of deja reve—a type of déjà vu—followed by loss of consciousness. Her neurologist believed she had non-epileptic attack disorder (functional seizures) or an arrhythmia that required a pacemaker; her cardiologist believed Rebecca had epilepsy and was too young for a pacemaker.

After nearly two years of bouncing between neurologists and cardiologists with little to no collaboration, Rebecca was given a tentative diagnosis of temporal lobe epilepsy. She had to conduct her own research online to discover the term “ictal asystole” and understand that her epilepsy and her arrhythmia were related.

Ictal asystole is a relatively rare arrythmia associated with focal seizures. It may go unidentified in people with diagnosed epilepsy; in those not yet diagnosed, the arrhythmia can delay diagnosis.

No guidelines exist for managing epilepsy with ictal asystole. Pacemaker implantation is a treatment option, but little evidence exists regarding indications or outcomes. When someone receives a pacemaker, or whether they receive one at all, rests solely on the decisions of individual cardiologists and neurologists.

What follows is Rebecca’s experience in her own words, edited for length and clarity:

At age 14, I was diagnosed with Graves’ disease; I spent my entire teenage years trying to stabilize my thyroid function, to no avail. I could not receive radioactive iodine due to the development of thyroid eye disease. I underwent a thyroidectomy in 2019, at age 22.

My main symptoms from the Graves’ disease were tachycardia (my heart rate was rarely below 100 bpm), severe nausea, tiredness, heat intolerance, breathlessness, and weight issues. I was under the care of a cardiologist and taking medication to control my high heart rate.

My first episode of neurological symptoms was in college: I was 17 or 18 years old. I started having events where I would re-remember a dream (déjà reve) and then become sick to my stomach, experience severe dread, and feel as if I were about to pass out. This would last about a minute and then disappear. It was infrequent enough that I thought it was a normal form of déjà vu that probably everyone gets once in a while, and I brushed it off.

After leaving college, I had no events like this for about 5 years.

In October 2021 I was 24 years old and working in a hospital microbiology department. I had a déjà reve episode while at work, but this time I woke up on the floor with my colleagues surrounding me. They said I had fallen off my chair, hit my head, and started convulsing.

When I regained consciousness, I instantly knew where I was. I went to the emergency department and due to descriptions of what happened by my colleagues, I was told it was likely I had a seizure. I would need to be seen by cardiology and neurology and could not return to work until I did. I was off work for 3 months.

I was seen by my cardiologist about 2 weeks after this episode. I had a 24-hour ECG in January 2022, during which I had another déjà reve episode but did not lose consciousness. The ECG showed bradycardia during the episode.

Because I had no post-ictal confusion after the previous episode (when I lost consciousness), the neurologist believed I didn’t have epilepsy.

In April 2022 I was back at work and experienced déjà reve and extreme dread; I lost consciousness for about 30 seconds. I was taken off work for a further 3 months and told that if I did not get a definitive diagnosis, my job may have to be terminated or I would be redeployed to another department.

I had another episode soon after this at home; I lost consciousness and bit my tongue. Again I woke up not feeling confused or disoriented.

I had received a brain MRI and CT scan, which were negative for structural issues or epileptogenic foci. I also had a sleep-deprived EEG and a prolonged EEG, which showed no significant findings. My neurologist believed I had non-epileptic attack disorder (functional seizures or psychogenic seizures) or a cardiovascular issue. I had never seen a neurologist face to face, however, only spoken to one on the phone.

I had several more episodes between June and September 2022. I received a loop implant recorder in October 2022—one year after my first episode with loss of consciousness. In November 2022, my cardiologist sent a letter to my neurologist asking them to start me on antiseizure medication. This did not happen. The neurologist told me I needed more tests and would be referred to an epilepsy specialist, but that getting an appointment would take a long time. I also was told I had no risk factors for epilepsy, although my maternal grandmother was treated for it as a teenager.

After the loop implant recorder procedure, I had an episode during a lunch break at work. The team monitoring my loop recorder called me to make sure I was okay because they had seen a 30-second pause with no atrial activity. I saw my cardiologist the next day; he said I may need a pacemaker but was very apprehensive about giving me one, due to my young age. He sent a letter to my neurologist asking again for antiseizure medication, but I was not given any.

All of my previous blackouts felt the same, so I inferred that every time I blacked out it was because my heart must have stopped. At this point, I was under the impression that this was a heart problem and I needed a pacemaker, but my cardiologist did not want to give me one.

In May 2023, I saw an epileptologist in person and was scheduled for an inpatient video EEG in August 2023.

I had another episode in July 2023, during which my heart paused several times. I was then prescribed antiseizure medication and told that I probably have temporal lobe epilepsy, but that I could never get a definitive diagnosis unless I had an episode during an EEG. The inpatient video EEG the following month was normal.

Since being on antiseizure medication, I have had no episodes of déjà reve or loss of consciousness. I am almost 2 years seizure free.

I feel like the neurologist prolonged my diagnosis solely because I recovered quickly after losing consciousness. It’s been incredibly scary not knowing what's going on with my health and I feel like so much time was wasted. After being told I have epilepsy and that there is a risk of SUDEP, I have spent many nights thinking about my own mortality and whether I should create a will for myself, which most young people cannot even comprehend. I had to do my own research to see if there was a correlation between epilepsy and my heart stopping. That is how I found the term ictal asystole, which added to my fears about mortality.

I don’t know whether not getting a pacemaker was the correct decision, but I don’t feel like I had a choice.

As far as I am aware, my cardiologist and neurologist communicated only through my clinic letters, which were addressed to me but forwarded onto each specialist. I want to see direct communication between the specialties. I want to see doctors coming together and having discussions about what to do about patients like myself. One conversation could dramatically change someone's life.

More needs to be done, not just in the fields of cardiology and neurology, but in all disciplines. The human body is an accumulation of processes that work and interact together. The body is able to communicate among all its intricate systems. Why can't the people studying it do the same?

Read more about ictal asystole and efforts to develop guidelines for identification and management