About

In December 2022, I had a fairly ordinary respiratory infection, which I suspect was covid-19. I recovered fully, but then about ten days later, I woke up in the middle of a night with a headache on the right side of my forehead. I've had that headache ever since.

Between then and 2025, we treated it (probably wrongly) solely as a headache problem, and in April 2025 I was diagnosed with likely New Daily Persistent Headache. During that time, I saw my GP, had blood tests, an MRI, an eye test. I started taking amitriptyline. I had occasional episodes of fatigue and shortness of breath, which stayed either episodic or which I just accepted as “long covid”.

The headache settled to a manageable background hum, typically 1–2 out of 10, with occasional worse episodes. I could work, exercise, and live more or less normally, though I wasn't at my former full health. My partner and I had both noticed my heart rate seemed higher than it used to be as well.

In April 2025, things changed sharply. After exercising and a social evening, I crashed. Not gradually, not subtly, but a discrete, sudden deterioration. Fatigue became the dominant symptom. Shortness of breath was much more noticeable. I could no longer tolerate exercise or physical exertion. Work became extremely difficult. The headache was still there, but it was no longer the sole thing limiting my life.

I had a brief improvement in late September 2025 lasting about three weeks, during which fatigue and breathlessness noticeably eased. I don't know why. Then in October 2025, I crashed again after what I suspect was cumulative overexertion, and I haven't recovered to that improved state since.

I now understand the likely cause to be post-viral autonomic dysfunction, presenting as severe fatigue, episodic shortness of breath and persistent headache.

Since then, I have been seen by the NHS post-acute COVID service. They have clinicians and physiotherapists who I really respect and whose perspectives I have really appreciated. But they also have processes that are completely unsuitable for chronic conditions like this. I have had more expensive tests with valuable staff time and machinery being used than was necessary, primarily to rule out very unlikely anatomical issues.

A general practice clinician in that team diagnosed me within half an hour of seeing me as likely having autonomic dysfunction and suggested after an ECG and an echocardiogram that specialists should consider ivabradine and midodrine for this. Nine months on, I've seen specialists who have (in my view wrongly) dismissed his perspectives, and instead I'm on a waiting list to see a cardiologist who I know has previously dismissed my symptoms as deconditioning.

Why this site

When I first started trying to understand what was happening to me, it was quite hard to navigate everything out there. I found plenty of anecdotes, plenty of forum posts, and not a lot in the way of careful, first-person accounts that also took the evidence seriously and dispassionately. I wanted to create the resource I was looking for.

You can subscribe at the foot of the site to receive new posts by email.

What this site is not

This is not medical advice. Nothing here should be taken as a recommendation to try anything. I'm one person describing one experience of one condition. What applies to me may not apply to you, and any questions about your treatment or management should be discussed with a doctor.