My CSF Leak Story: From Dismissal to Diagnosis and Recovery

Hi, I’m Fay, a mum of two girls. In July 2024, I gave birth to my second daughter. It was a natural birth, without any pain relief (no epidural, which is relevant for the story) nothing out of the ordinary happened. But pretty much instantly, something didn’t feel right. 

As well as labour recovery, I started experiencing unusual headaches, but these weren’t typical headaches. They came in sudden, explosive bursts of pain whenever I bent down, coughed, laughed or strained. Even the simplest movements, lifting my baby, picking up a muslin from the floor, even getting dressed could trigger them. The pain was immediate and overwhelming- it would build within seconds into what I can only describe as a 10 out of 10, unbearable pressure, like my head was being crushed from the inside. Each episode lasted around 45 seconds to a minute, but in that time it completely consumed me. A wave of intense, unavoidable pain that I couldn’t escape, couldn’t ease and had to just endure until it passed. It didn’t stop there, after just three or four of these attacks, I’d be left with a lingering headache that stayed with me for the rest of the day.

I contacted my GP that same month and was advised to go to A&E immediately, where I had an MRI with contrast. I was absolutely terrified of what it might show, especially as my mum died of a brain tumour when I was young. I was told everything looked normal and sent home without a follow up. Looking back, that moment feels incredibly frustrating, not only did I leave without answers, but there is also no clear record of my visit or my results.

Over the following months, my symptoms continued. At one point, I put my symptoms into ChatGPT, which suggested a CSF leak. At the time, it sounded quite dramatic and I didn’t think it was likely. I’d also read that leaks are commonly linked to epidurals, which I hadn’t had, so I dismissed the idea. Everyday life became a challenge. Looking back, I’m not sure why I let this go on for so long, but I think being in the trenches with a newborn leaves you with very little capacity to take care of yourself. In December 2024, I went back to my GP, this time I felt dismissed. I was told it could be hormonal; possibly linked to my age (I’m 38!) or recent pregnancy and was prescribed propranolol. It didn’t help at all.

I started tracking my headaches, sometimes experiencing 20–30 episodes a day. They were short but intense,  sudden spikes of pain triggered by basic movements. Daily life became a constant negotiation:

Lifting my daughter = headache

Getting nappies from bottom draw = headache

Unloading the dishwasher = headache

Tying my shoes = headache

Laughing at the TV or with friends = headache

Coughing = headache 

Even after a series of small movements, as well as the lingering headache I would also hear a ringing sound, like a low humming or a fridge noise, inside my head which I found really distracting and irritating. It was exhausting, physically and emotionally. Trying to care for two young children while managing unpredictable pain felt overwhelming. Even laughing would trigger it, something so small and natural suddenly meant bracing myself for pain. But it wasn’t really about laughter,  it was what it represented. I couldn’t be fully present with my children. The simplest, happiest moments came with a cost and over time that really affected me mentally.

In June 2025, I pushed again for answers and was referred privately through Bupa which I’m lucky enough to get through my workplace. I’ve often wondered why I didn’t do this sooner.

In July 2025, I saw Dr Colette Griffin. For the first time, something showed up. My MRI revealed signs of low pressure in the brain known as ‘brain sag’ even though no obvious fast leak was visible. That result changed everything for me. I was then referred to Dr Kuven Moodley, who recognised the pattern immediately. He explained that my symptoms were highly suggestive of spontaneous intracranial hypotension, likely caused by a slow leak or a CSF venous fistula (A venous fistula is where there is an abnormal connection between the spinal subarachnoid space and adjacent paraspinal veins). He also noted something that finally made sense: The timing, just after childbirth, suggested that the strain of labour could have caused it. After months of feeling dismissed, I finally felt validated. Dr Moodley suggested taking pro-plus which he explained increases the production of CSF – I took four a day which is a lot of caffeine for a non-coffee drinker! Dr Moodley also told me to drink as much water as I possibly could - which, as a small silver lining, also did wonders for my skin. He suggested a blood patch with Dr Declan Johnson and I begged to be booked in as soon as possible as I was about to get married.

I got married on the 15th  August 2025 whilst still leaking. It was a gorgeous day and of course one I will always treasure, but the pain was very much present in the background. Even simple things like moving around and dancing caused significant pain and alcohol seemed to make my symptoms worse. 11 days later while newlyweds are usually on honeymoon, I was at St Georges Hospital having a blood patch (having blood taken from my arm and injected into the epidural space) unfortunately I felt no benefit whatsoever. I was then referred to the National Hospital for Neurology and Neurosurgery (NHNN).

Returning to work only made things worse. The pain was unbearable and completely consuming. Looking back, during maternity leave I would lie down for a nap during my daughter's lunchtime nap and I think that break in the day helped reduce the gravitational pull on my brain. Once I returned to work, I couldn’t do that anymore and losing that small window of relief pushed me to a point where I felt completely broken. I remember sitting in a meeting and suddenly breaking down - I simply couldn’t do it anymore. I was signed off that instant and didn’t return to work for 3 months. I’m very grateful for a supportive team and employer.

Dr Yates and I agreed on an embolization (which is the process of blocking the abnormal connection using a catheter and medical glue)  And I finally got a date for my embolization in January. I arrived at 6.30am and sat waiting for 9 hours when eventually the neuroradiologist came and said my procedure was cancelled due to a complication with the person before me. I cried a lot but he promised to get me back in on the earliest slot available. That date came on the 11th February, I was first in the queue, the procedure took 3 hours and I knew as soon as I woke from the general anaesthetic that something had changed. I instantly felt lighter. I stayed overnight for 2 nights and then spent the subsequent week lying flat as much as I could. We were very strict on the no bending/twisting rule as I didn’t want to jeopardise what I had been through. Over the next few weeks and months I slowly reintroduced light activity and returned to work and life very quickly felt much more normal again.

In June 2026, I had a follow-up MRI of my head and whole spine with contrast which was compared to my previous scans from July 2025. I spent just under two and a half hours in the MRI machine, lying completely still with a face cage over my head, which wasn’t the most comfortable experience. But it felt important, like a final step in everything I had been through.

The results showed that the previously demonstrated imaging features of intracranial hypotension have now resolved. The brainstem slumping and cerebellar tonsillar descent seen on earlier scans have corrected, with both structures returning to their normal position. The pituitary gland has returned to a normal size, and the previously observed diffuse dural thickening and enhancement has resolved. Importantly, there were no new concerning findings anywhere in the brain or spine.

The overall conclusion from the scan was that the imaging features of intracranial hypotension have resolved following treatment.

For me, that report reflected what I already felt day to day, the symptoms that once dictated every movement are gone. The headaches, the pressure, and the fear of triggering pain with the simplest tasks have completely lifted. After such a long and difficult journey, having that confirmed so clearly on a scan feels like real closure.

This experience has been incredibly challenging - physically, emotionally and mentally. The hardest parts weren’t just the symptoms, but:

- Not being believed

- Being told it was “just hormones”

- Trying to function as a mum while in constant pain

- Navigating a system that didn’t immediately recognise what was happening

What I’ve learned is how important it is to listen to your body and advocate for yourself,  even when it’s difficult. I’ve also started therapy during this time, which has helped me process everything I went through after such a long and challenging period.

If sharing my story helps even one person feel less alone or pushes them to seek answers sooner, then it’s worth it. If you’re experiencing unusual headaches, especially those triggered by movement, bending, or straining - trust yourself. You know your body best. Keep pushing for answers.

This journey has shown me resilience I didn’t know I had. Balancing recovery while caring for two young children hasn’t been easy. But I’m proud of how far I’ve come and I’m hopeful for what comes next. I don’t take the small things for granted anymore, even something as simple as laughing freely without pain feels like a gift and I try to do as much of it as I can. I’m making the most of everyday moments that once felt out of reach and I’m very much looking forward to getting back into Paddleboarding and Boxing, now I've had the all clear.