struggling off the bus in agony, Deborah Ogg barely knew what was happening.
She had never suffered from headaches, but suddenly she was in such excruciating pain that she had to lie down in the street, utterly overwhelmed.
Her worried partner Peter looked on, helpless, and even the taxi driver he summoned offered to take them straight to hospital. But Deborah, 40, hating to make a fuss, insisted on going home to bed.
“I felt like somebody had hit me over the head with an iron bar,” she recalls, “It was massive pain.”
The pharmacist recommended migraine pills, but they didn’t help. “I tried getting up to go to the toilet but as soon as I got up the pain was even worse and I was on my knees, I just crumpled,” she says.
It was April 1 last year, and the start of a long and painful journey with what she eventually discovered was a rare condition called cerebrospinal fluid (CSF) leak.
Affecting around one person in 50,000, it occurs when the fluid, which cushions the brain and spine, leaks out through a hole in its protective sac. This results in a drop in pressure, so that the brain can no longer float in fluid.
The brain cannot feel pain, but the resulting “brain sag” pulls on tendons and muscles across the head, causing extreme pain, which is slightly relieved when sufferers lie down.
It is most common after epidurals or spinal operations, but in some cases, such as Deborah’s, occurs spontaneously, which makes treatment harder, because the location of the leak is not known.
Sufferers call themselves “leakers”, and their dream is that one day they will be “fixed” and the pain will finally end – but there is no sure-fire cure.
Two days after Deborah had lain down in the street in agony, she called NHS 24, where staff were so concerned they kept her on the phone while paramedics rushed to her home in Leith. But after carrying out some checks, they couldn’t find anything wrong. They offered to take her to hospital, but she decided to stay put, hoping it was a migraine and would lift.
Another two days later she was vomiting repeatedly and her GP called an ambulance to take her to the Western General.
Even morphine had no effect on the pain, and tests, including a CT scan, came back completely normal. All the while, the normally cheerful Deborah just lay in her hospital bed crying.
A painful lumbar puncture revealed that the pressure of her spinal fluid was low, but doctors were still baffled. “Because this is quite rare, they wouldn’t think of CSF leak unless maybe they’d seen it before. It can happen if you get an epidural or a lumbar puncture or an operation on your discs, but then they would know what it is quite quickly and identify it.
“But it doesn’t happen on its own very often so when they said it wasn’t meningitis and the CT scan was clear, I was sent home because they’d checked for what might kill me.
“I came back home and the pain was just unbelievable and I couldn’t cope with it.”
She experienced slight pain relief from taking the anti-depressant amitriptyline, but still suffered a regular vice-like pain, washing over her head from back to front.
In the end, it was almost by chance that Deborah found out about CSF leak. Attempting to find the source of her symptoms, she visited the optician, and went to the dentist in case she was clenching her jaw. All seemed fine.
“Then my dentist phoned me back and said that she’d just had a baby recently,” she recalls.
“She said, ‘It sounds really like the headache that I got after my epidural. It was worse than the pain of giving birth, I was on the floor and I was screaming and I got a blood patch where they take blood out of your arm and put it into the hole, and it closed’.”
Deborah researched the condition, and took her findings to her GP. “I said if I’m being some neurotic idiot, tell me.”
But the GP, admitting he knew little about the condition, referred her to neurologist Dr Richard Davenport at the Western. At her first appointment, Deborah didn’t tell him what she suspected, but straight away he came up with the same diagnosis.
Unfortunately, his initial recommendation was that she should simply wait and hope that the hole healed in time, as can happen in some cases.
She returned to work as a retail manager on reduced hours, but would come home in tears every night and crawl into bed.
Now she has given up work and spends her days in her neat colony house trying to distract herself from the non-stop pain, getting up for a few hours at a time before she has to lie down again.
By Christmas she was at the end of her tether, and when her neurologist said her leak could take up to five years to heal on its own, if it ever did, she decided it was time to try treatment.
First was a caffeine infusion. She had already noticed that her symptoms relieved slightly after drinking coffee, and she wasn’t imagining it – an intravenous infusion of high-dose caffeine can alleviate symptoms, possibly by increasing production of CSF.
“About two thirds of the way through it, my headache suddenly lifted. I was sitting in this wee room on my own and I burst into tears. I thought ‘This is amazing’ and the feeling that something had lifted the pain, not completely but significantly, was incredible.”
But during the second infusion, carried out later the same day, the headache started creeping back.
Since then there have been more scans, different drugs, and she is now considering the treatment that helped her dentist, which she had initially dismissed as too risky – a blood patch.
Blood will be removed from her arm and injected into her lumbar spine, and will hopefully make its way up through her remaining spinal fluid and clot over any holes.
For sufferers like Deborah, who don’t know where their leak is, it doesn’t always work, and carries risks such as paralysis or meningitis.
While she awaits the treatment, she lives from day to day. “When I’m really bad I can’t keep food down. Getting up, even just going to the loo you get this pressure in your head, once the pain builds up and you get that rush of pain it takes 20 minutes to die down.
“My balance completely goes sometimes. I used to spend my life on my motorbike, it was a huge part of me, but I sold it last week, because I haven’t been on it since April.
“I’m determined to get better and I’ve promised myself a brand shiny new one.”
The saving grace has been finding a Facebook page where hundreds of other CSF leak sufferers from around the world support one another.
Members of the page are now fundraising for one of their number, Sarah Ambrose, who lives in England, to go to the US for treatment.
Sarah’s pain has become so unbearable after five years that she has twice attempted suicide, and says she doesn’t know how much longer she will be able to cope.
But in North Carolina, Dr Linda Gray has pioneered a method of treating the condition which has a better success rate, and has offered to treat Sarah for free if the funds can be raised to get her there.
If Sarah can be treated, there are then hopes that the fund could be maintained to pay for others to visit the US, or for Dr Gray to travel to the UK and teach colleagues here how to carry out the procedure.
Despite everything, Deborah retains a tremendous sense of optimism, humour and determination – and incredibly, feels fortunate. “I can’t believe it’s been almost a year but I do feel really lucky that the neurologist that I saw picked it up straight away and that someone mentioned it to me because if I hadn’t known, I probably wouldn’t have pushed to see a neurologist. The NHS gets so many knocks but everyone I’ve spoken to has been absolutely brilliant.”
To donate to the fund, search online for youcaring sarah’s CSF – though giving through this page may involve fees, so for other options, email Deborah at firstname.lastname@example.org.
PAIN DROVE CLOONEY TO CONSIDER SUICIDE
cerebrospinal fluid leak is such an uncommon condition that Deborah decided to discuss her own experiences to mark Rare Disease Day, which fell this week.
But one of Holywood’s biggest stars, George Clooney, has also spoken of his struggle with it, admitting the pain was so excruciating that he considered suicide.
While Deborah’s leak is in her spine, his was around his brain, and caused CSF fluid to drip out through his nose.
Clooney was injured during the filming of a torture scene in Syriana in 2005, and told TV interviewer Larry King: “I cracked the back of my head and I thought I had an aneurysm because my head hurt so bad.
“So, I got a plane and got out of Morocco and went to Cedars-Sinai [hospital] and I was there for about a week and a half before they figured out what was wrong.”
Bedridden with severe headaches, he later told Rolling Stone magazine: “I was at a point where I thought ‘I can’t exist like this. I can’t actually live’.
“I was lying in a hospital bed with an IV in my arm, unable to move, having these headaches where it feels like you’re having a stroke, and for a short three-week period, I started to think, ‘I may have to do something drastic about this’ . . . but I never thought I’d get there,” he said. “See, I was in a place where I was trying to figure out how to survive.”
Although he never attempted to take his own life, he began to drink heavily until the symptoms were finally relieved by surgery – but still suffers from bad headaches.