My experience of living with long neuro-COVID
The arrival of the virus, SARS-CoV-2, in the United Kingdom presented a sudden need to expand the country’s National Health Service (NHS) workforce.
On March 24, 2020, then-Health Secretary Matt Hancock announced that all final-year medical students who met the General Medical Councils (GMC) outcomes to graduate were to be fast-tracked through graduation to be made available to help on the wards.
He also made a plea to retired healthcare workers to consider returning to the NHS to help at a time of national crisis.
Under the emergency framework, newly graduated doctors were eligible, but under no obligation, to apply to the GMC for a provisional registration on the medical register, enabling them to become foundation interim year 1 doctors and start work early.
Keen to support my colleagues, I, alongside 4,500 other newly graduated doctors, applied for provisional GMC registration, and in excess of 15,000 former NHS staff members came out of retirement to serve on the front line.
Throughout the summer of 2020, I worked on a variety of wards, including COVID-positive wards, before commencing my official foundation post in August.
By November of that year, we were in the midst of a second wave, and the U.K. had entered its second lockdown. COVID-19-related deaths and hospital admissions were again rising.
Like ‘being on a treadmill I could not get off’
I contracted COVID-19 at work after being deployed to a COVID ward. Working in close contact with COVID-positive patients and wearing only basic personal protective equipment (PPE), I was unsurprised when, the following week, I began to feel unwell, and a subsequent PCR test returned a positive result.
The acute phase of the illness lasted 2 weeks and was comparable to a mild-to-moderate flu: unpleasant but expected. As a fit and healthy 35-year-old with no comorbidities, I naively expected to recover quickly.
In week 3, barring a lingering fever, I mistakenly thought I had recovered. At the start of week 4, I returned to work but did not last long on ward rounds. Lightheaded and jelly-legged, I made it home. I now know this to be the start of long COVID.
At home I deteriorated quickly. I became tachycardic, at 140 beats per minute (bpm), and breathless, with a respiratory rate of 20–24 at rest. My heart rate would increase further, to 170 bpm, on standing and with minimal exertion, such as getting a drink or using the bathroom.
I began having cyclic attacks of pins and needles in all four limbs and violent entire-body shaking. The shaking was as violent as seizure, but it wasn’t one because I was conscious.
The attacks were associated with an unquenchable thirst, with or without an urgent need to open to my bowels, vomiting, or increased shortness of breath. They came in daily cycles lasting up to 14 hours at a time. I would frequently shake through the entire night.
“I had a dysregulated — I suspect neurologically driven — heart and respiratory rate. Physically, it was comparable to being on a treadmill I could not get off of. I know I am carrying a lot of trauma from this experience.”
In those first weeks, my airways felt narrowed. I was breathing fast, but what also felt like breathing through a straw. From past experience, I recognized the inflammatory airway narrowing helped by oral prednisone and fexofenadine (Allegra).
‘I was treated like an anxious little girl’
I attended the emergency room, where my symptoms were dismissed and misdiagnosed as anxiety. The registrar I saw heard “cyclic attacks” and “pins and needles,” saw sinus tachycardia on an electrocardiogram, and subsequently joined the dots in the wrong order.
He had expected to see a mucky-looking chest X-ray, and when this came back clear, he chalked my symptoms up to either long COVID, anxiety, or reflux.
“Despite a differential of long COVID, I was treated like an anxious little girl; my concerns were not taken seriously despite me being a doctor myself. I told him he was wrong in his diagnosis and that I felt very unwell. But my time was up, he had poorly patients to see, and to him I wasn’t poorly. A nurse brought a wheelchair, and I was escorted out of the emergency room.”
We now know that COVID-19 is causing postural orthostatic tachycardia syndrome, or POTS, a condition where the body’s autonomic system and therefore ability to regulate itself is disrupted.
In addition, several studies have also reported on the neurological manifestations associated with SARS-CoV-2, involving both the peripheral and central nervous systems.
At home, attacks of pins and needles, violent body shaking, and breathlessness continued. I experienced episodes of altered consciousness and sleep apnea. My body would wake me from sleep or the edge of sleep and, after a slip-second pause, I would gasp for breath.
It was as if my body had forgotten how to breathe. It was at this time that I suspected something central was amiss, and recognized that I was poorly, even if no one else did. I do not doubt brainstem involvement. It was at this time that I experienced a sense of impending doom, which I can only describe as an emotion felt as a physical sensation in the chest, dragging you down and pulling you under.
My sleep became disturbed. I felt a mental, physical, and emotional exhaustion like no other, but the virus or my body’s response to it kept me wide awake.
After 72 hours without sleep, I experienced external auditory hallucinations secondary to insomnia. Getting a glass of water I “heard” a tannoy call me to my platform, whilst a man “shouted” angrily at me from the corner of the room.
A wide array of hallucinations
Throughout December and January, attacks of pins and needles and violent shaking did not lessen in severity but did so in frequency and duration. They eventually ceased in mid-January, at which point I thought I was over the worst of it. I was wrong.
Throughout January, February, and March, my right cerebral hemisphere felt numb and inflamed. I also experienced immense otalgia, or ear pain. The pain felt much deeper than that of a bacterial ear infection, like a “hot poker” sensation deep in my ear. My vestibulocochlear nerve felt on fire.
“I began having internal auditory hallucinations. I hallucinated 5 of 7 nights a week for 2–3 months. I would hear music, bands playing, news reports, political broadcasts, all originating from inside the ear. Although my sleep continued to be disturbed, these hallucinations were not secondary to sleep deprivation. When I was fortunate enough to sleep, I experienced night terrors; vivid, disturbing dreams.”
Hallucinations occurred in addition to a COVID-induced tinnitus and a deeper brain noise. I experienced hyperacusis and bouts of vertigo. Unable to tolerate light or noise, I could no nothing but lay in bed with my eyes closed.
I became emotional. For months I said I felt labile. Subsequent episodes of mood and speech disturbance — which caused slowness, stammering, slurring, and more than usual word-finding difficulty, although I’ve had that, too — I believe were misdiagnosed and misinterpreted by the long COVID care team.
Suspecting neuro-inflammation, I raised my concerns, but my maternal grandma had recently passed, and depression and anxiety go hand in hand, and anyone, understandably, would have mental health issues having gone through what I had.
So a mental health referral was made in order to take a “holistic approach.” While I appreciate the value of a holistic approach, there is organic pathology that requires prompt investigation and medical management.
When I saw a neurologist around May, he suspected limbic encephalitis but believed it was then showing signs of “burning itself out,” as the hallucinations had ceased.
‘Not just tiredness’
Throughout April, May, and June, my brain no longer felt inflamed, but it didn’t feel right. When I touched my head, the right side felt different to the left.
But rather than being global, this odd sensation was more localized to the right parietal and right temporal lobes. When the right parietal position flared, I had associated episodes of speech and mood disturbance.
When the right temporal portion flared, I had ear pain and worsened tinnitus. With the tinnitus comes a genuine emotional reaction, as it’s something I do not cope well with. A subsequent hearing test has shown a degree of hearing loss.
Where am I now? Ten months on, I am improving but continue to be unwell.
Neurology have diagnosed limbic encephalitis, and my brain still feels like it is recovering from this insult. My mood remains fragile; with time, episodes of extreme emotional responses are becoming less frequent. I would like to believe that the more my brain heals, the more my hearing improves. I still hope the tinnitus will settle completely.
Dysautonomia is improving, but I am still somewhat dysautonomic. For 10 months, I’ve had a resting heart rate of 90-110 bpm which would elevate further on standing, to 120 bpm, or minimal exertion, to 160 bpm.
However, 2 weeks ago my resting heart rate — out of nowhere — dropped. I now experience bouts of tachycardia at rest, rather than constantly being tachycardic. Minimal exertion, such as movement around the house, can still trigger tachycardia, and I still randomly desaturate.
But episodes of acrocyanosis, which is poor circulation, or Reynaud’s in my feet no longer occur, and episodes of nocturia, which is excessive urination at night, are becoming less frequent.
Functionally, I am very fatigued and struggle with the debilitating effects of postexertional malaise. Except to attend hospital and for vaccination, I have not left the house in 10 months.
“Saying one is fatigued is not an accurate description. This is not just tiredness. As a doctor, I am someone who is used working 14-hour shifts on their feet. This is not something one can push through.”
It physically feels like something is amiss on a cellular level, the mitochondria are not functioning properly. There is growing evidence to suggest that mircroemboli and hypoxia secondary to endothelial dysfunction could be responsible.
On most days, I manage to prepare three meals a day and get changed and washed. Between these times, I actively rest. Some days I don’t always manage it. However, from initially not being able to sit up in bed or manage the stairs to use the bathroom, I have noticed a slow improvement with time.
I haven’t watched TV or driven in 10 months. I do not yet feel well enough to attempt driving.
Although I struggle to concentrate, and leave the gas on or taps running, I feel I am starting to become more alert. To a friend, I recently likened it to the state of being drunk.
When you are drunk, you don’t appreciate how drunk you are until you start to sober up. I’ve been “drunk” for months. As time passes, I’m sobering up and starting to reflect on how unwell I’ve been.
I am also angry and feel let down by the government, Public Health England, and my employer. We were not provided with adequate PPE and were instead fed a false narrative that this virus was spread only by droplet transfer and therefore hand washing and a simple face mask were adequate.
This is despite overwhelming evidence from the beginning that the virus is airborne, and full protection requires airborne PPE, including an FFP3 mask.
Even now, 1,500 healthcare worker deaths later, according to former Secretary of Health Matt Hancock, and with 122,000 healthcare workers off with long COVID, the national guidance on PPE remains unchanged. This is an insult to the dead and injured.
Like others with long COVID, I still experience a myriad of other symptoms — every few days I have a sore throat, sneezing, visual disturbances such as speckled vision, blurred vision, or increased floaters, intermittent diarrhea, and the rest.
“I know I am carrying a lot of trauma surrounding my experience of long COVID, its impact on my body, and a string of poor medical encounters. I frequently find myself in a dissociated, dream-like state. The world is real, but similar to when you are drunk, the edges of it are blurred and somehow unreal.”
I fear that the severity and prevalence of long COVID have been downplayed. I share my story in the hope of raising awareness about long COVID and its impact. There is an urgent need to understand the aetiology of this condition, which I suspect will be multifactorial, and an urgent need for treatment. While waiting for treatment, many people with long COVID continue to suffer and feel forgotten.
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