‘A rare neurological condition left me housebound for nine weeks and led to a caffeine dependency to manage my symptoms’

A Buckinghamshire mother who experienced severe headaches that progressed to vomiting and being “housebound for nine weeks” was diagnosed with a rare neurological condition affecting five in every 100,000 people annually that forced her to consume three coffees, a caffeine tablet and a Coke Zero every day to manage her symptoms.

Sapna Bidwall, 45, an accountant living in Milton Keynes, was diagnosed in January 2024 with Spontaneous Intracranial Hypotension (SIH), a type of cerebrospinal fluid (CSF) leak, where there is a small hole in the outer membrane that causes the brain to sag downwards, according to The Brain Charity.

Sapna underwent a series of scans and she was diagnosed with SIH before she was told she could manage her symptoms by consuming caffeine. This can help constrict blood vessels and increase CSF production, according to complex spinal surgeon Gordan Grahovac.

In March 2025, aged 44, Sapna decided to have a thoracic laminoplasty procedure to seal the leak, which is when she found out the hole was 10mm wide.

Sapna told PA Real Life: “People really don’t understand what a CSF leak is and patients are ignored.

“I know so many people who have been told they’ve just got migraines, when it goes deeper.

Sapna said her symptoms came on without warning in July 2023 while on a family holiday in Croatia with her husband, Palvinder, and her daughter, Diya, 13.

She said she assumed it was “just dehydration”, but she felt “really sick” the next day with nausea and ended up vomiting.

She didn’t realise it at the time, but CSF leak symptoms are usually “remarkably worse when standing or sitting upright and lessen or disappear when lying flat”, according to The Brain Charity.

The headaches persisted after Sapna returned to the UK so she went to her GP, who referred her to a physiotherapist.

Sapna went on two more holidays – Tanzania in October 2023 and the Turks and Caicos Islands in December – where she noticed her symptoms would worsen.

During the latter, she said: “I think it was day two when I went on the water slides there and then I woke up the next day and I felt my head was blasting.

“It was really quite bad and intense and that’s when I thought there must be something seriously wrong.

By December 29 – just days after returning from holiday – she was still “really struggling” so she went to her GP and said: “My head is bursting and there’s definitely something wrong.

“I feel there’s a tumor.”

On January 2, 2024, Sapna was told that she had “brain sag” and received her diagnosis of spontaneous intracranial hypotension, which she was advised could be helped with rest and caffeine.

Sapna thought to herself at the time: “What sort of condition encourages you to have Coke?”

“I started realising, if I’m having caffeine towards the end of the day, around six o’clock, I’m not waking up with a headache,” Sapna said. “So I started making all these adjustments to make myself better.”

Sapna was also encouraged to stay at home for at least nine weeks to see if her condition improved, which she described as “like being in prison”.

It was through this group that she decided to see a private consultant neuroradiologist named Lalani Carlton Jones in March 2024.

After two myelograms – an imaging test that uses contrast dye to identify where in the spine the leak originates from – Dr Carlton Jones referred Sapna to consultant neurosurgeon Dr Grahovac.

Three months later, a follow-up MRI revealed it was still leaking, so Sapna had to decide if she wanted to go through with spinal surgery.

Sapna said: “It was now a year after my headaches started and I was still suffering.

“If I didn’t have caffeine, my life was just not possible.

So Sapna took some time to weigh up the risks of the thoracic laminoplasty surgery and decided to go ahead with it in March 2025.

Sapna said she “wasn’t nervous on the day” because she felt “110% confident” in Dr Grahovac.

The next day after her surgery, Sapna woke up and was surprised to not have a headache, especially because she had not had any caffeine.

“My whole journey after surgery has been brilliant,” Sapna said. “I have never, ever woken up with a headache.”

Sapna added: “I can say all the positive words in the dictionary to express my gratitude to Dr Carlton Jones and Dr Grahovac.

“I know I’ve got life because of them and I have a second chance.

“It’s like I’ve won a lottery.”