What happened to me: a timeline

This is a personal account rather than an evidence review. It’s here partly for context — knowing who is writing the other posts on this site and why — and partly because pattern-matching with other people’s experiences was one of the most useful things in my early months of trying to understand what was happening.

This is one person’s experience. It will not match everyone’s. But if pieces of it resonate, it may be useful.

Before

I was active before this started. Not an athlete, but reasonably fit — hiking at weekends, cycling to work, no significant health problems beyond the usual. I had a physically demanding job and rarely needed to think about energy management.

I’d had the typical range of viral illnesses over the years. Colds, one serious bout of flu, a mild case of what might have been COVID in early 2020 (untested, pre-widespread-testing). I recovered from all of them normally.

The illness that didn’t resolve

The illness that started this was in summer 2022. A respiratory virus — not diagnosed, not COVID by rapid test on day three, though by that point I’d learned rapid tests miss a significant proportion of cases. About five days of acute illness: fever, significant fatigue, mild respiratory symptoms. By all appearances, unremarkable.

I expected to be well within two weeks. By week three I was still tired. Not severely — I was working, functioning — but the baseline had dropped and didn’t come back up. Six weeks out, I noticed that I was getting breathless on exertion that shouldn’t have caused breathlessness. Walking uphill. Carrying shopping. Climbing stairs quickly.

Eight weeks out, I noticed my heart rate was elevated on standing. Not dramatically — I didn’t know what POTS was — but when I started occasionally checking my pulse for curiosity, I’d see rates of 95–110 sitting and 110–130 walking at a pace that used to produce 80. I didn’t think much of this at the time.

Twelve weeks out, I had a bad week — attempted a moderately demanding walk, felt unexpectedly terrible during it, and spent the following three days significantly worse than baseline. This was the first clear post-exertional episode. At the time I attributed it to having pushed too hard during recovery. I know now it was something more specific.

The pattern becomes clear

By month four, the pattern was established: standing up produced a heart rate spike. Mild exertion produced breathlessness disproportionate to the effort. Cognitive tasks were harder than they should be. Energy was limited in a way that didn’t follow normal tiredness logic — resting didn’t reliably restore it, and overdoing anything reliably cost several days.

I also developed new-onset headache during this period — a daily background headache that had never been present before, with occasional more severe episodes. The headache has been continuous since month four. I later learned that new daily persistent headache occurring after a viral illness is a recognised syndrome.

The medical journey

Month three: First GP appointment specifically about the post-viral symptoms. Blood tests: full blood count, metabolic panel, thyroid, CRP. All normal. Told to rest and give it time. This advice was well-intentioned and partially correct (rest was appropriate) but incomplete.

Month five: Second GP appointment. Still symptomatic. GP referral to cardiology for “tachycardia and breathlessness” — framed that way because I knew framing it as fatigue alone would likely not produce a referral. Waiting time: three months.

Month eight: Cardiology appointment. ECG: normal. Echocardiogram: normal. Holter monitor: showed elevated resting heart rate and several episodes of heart rate exceeding 120 bpm with minimal activity. Cardiologist diagnosed “post-viral inappropriate sinus tachycardia” — reasonable given what they had, though not the full picture.

Month ten: Referral to long COVID clinic (following NICE guideline changes and local service establishment). This was the most useful step. A physiotherapist and physician familiar with post-viral presentations assessed me, performed an active stand test (heart rate rise of 28 bpm — below formal POTS threshold, but clinically significant), and acknowledged the full pattern. Access to more specific investigations and discussion of management options finally became possible.

Year two: Neurologist assessment (primarily for the headache). POTS not formally diagnosed (sub-threshold on formal assessment), but orthostatic intolerance acknowledged. Headache diagnosed as new daily persistent headache with migraine features.

Year three: Ongoing management. The core picture hasn’t changed dramatically, but understanding it better has made it more manageable.

What tracking revealed

I started tracking systematically about six months in. This turned out to be one of the most useful decisions. Having objective data — resting heart rate trends, HRV data, standing HR difference over time — meant that:

I could see the post-exertional pattern clearly, confirming it wasn’t psychosomatic
I could identify what made things better or worse with more precision than subjective memory allowed
I had data to share with clinicians that was more convincing than symptom descriptions alone
I could assess whether interventions were doing anything

The tracking data has been consistently useful, even when it showed things I didn’t want to see.

Where things stand

Three years from the start of this, the core picture is: orthostatic tachycardia (sub-threshold POTS), persistent elevation of resting heart rate, low HRV, post-exertional pattern, new daily persistent headache. I work, function, and live — not at pre-illness capacity, but not entirely defined by the illness either.

Management involves salt, fluid, compression, recumbent exercise, several medications, symptom monitoring, and pacing. The headache is managed separately. It’s a lot of active management for something that used to require no attention at all.

What’s improved: the acute orthostatic tachycardia is better managed, the post-exertional crashes are less frequent and less severe (because I understand the pattern better and stay within a safer envelope), and the first-year fog of not understanding what was happening has cleared.

What hasn’t changed: the underlying autonomic dysfunction persists, the headache is daily, the energy envelope is still significantly smaller than pre-illness, and the trajectory is gradual improvement measured in months rather than weeks.

Why I’m writing about it

Partly because writing forces clarity in thinking, and I think more clearly about my own situation when I’ve had to explain it to someone else.

Partly because the information I needed in the early months — about what was actually happening, about the evidence for different interventions, about how to navigate the NHS with something that doesn’t fit standard pathways — was hard to find in one place, and I want it to be easier for someone in the position I was in.

The other posts on this site are evidence reviews and practical guides. This one is context. If you’ve arrived here from the plain-language guide to what’s going on, this is where the personal experience behind that comes from.

I’m not a clinician. Nothing here is medical advice. I’m someone three years into a post-viral condition, trying to understand it well enough to manage it better.