Mum is forced to avoid laughing due to rare condition causing her brain to LEAK
A MUM has been left bed-bound for six hours a day due to a rare condition that is causing her brain to leak.
Angela Chapman lives with excruciating pain in her head and neck, and laughing makes her feel like her skull is being stabbed with nails.
The 39-year-old, of Glenrothes, in Fife, Scotland, has been diagnosed with spontaneous intracranial hypotension, which causes the brain to sag inside the skull.
This is usually caused by a loss of cerebral spinal fluid through a hole in the tough layer of tissue that usually holds up the fluid the brain is suspended in.
The condition can cause painful headaches, nausea, neck pain, dizziness and imbalance.
In rare cases it can even cause dementia and Parkinson’s disease.
Angela, who has three children, Jacob, two, and Joshua, 21, and Aaron, 13 from a previous relationship, said: “My husband, Matthew, 21, thinks I’m already experiencing short-term memory loss, which is terrifying.
“The pain is so severe I have to lie down for hours at a time. I can’t go out much and even laughing brings on the horrific pain.
“People think I’m miserable as I try not to laugh much and avoid funny TV shows, but getting the giggles leaves me in agony.
“The only thing that helps is lying down, but you can’t do much from your bed.
“I just want my life back.”
Angela’s pain started a week after giving birth to 8lb 2oz Jacob at Victoria Hospital on January 20, 2015.
Healthy and happy, mum and baby went home the next day but a week later when Angela was cooing over her newborn she felt an extreme pain in her head and neck.
“I was leaning over Jacob, saying ‘coochy coo’, and I felt like there were pins or nails being pushed inside my skull into my brain,” she recalled.
“I’d suffered with migraines in the past, but I knew this was different.”
Hoping the pain would fade, former catering assistant Angela tried to put it out of her mind.
But soon her neck was in agony and her arms and legs were aching.
She added: “I was in so much pain, I was struggling to look after my little boy.”
Her doctor prescribed painkillers and medication for arthritis to ease the discomfort in her limbs.
RARE CONDITION THAT CAUSES THE BRAIN TO LEAK
Spontaneous intracranial hypotension causes the brain to sag inside the skull.
It is usually caused by a loss of cerebral spinal fluid through a hole in the tough layer of tissue, called the dura, that usually holds up the fluid the brain is suspended in.
The condition can cause painful headaches, nausea, neck pain, dizziness and imbalance.
In rare cases it can even cause dementia and Parkinson’s disease.
It is thought to affect five people per 100,000.
Symptoms:
- positional headache that is worse when upright
- nausea
- neck pain or stiffness
- pain between the shoulder blades
- arm pain
- dizziness
- imbalance
- sensitivity to light or sound
- hearing changes
Less common symptoms include:
- facial pain or numbness
- changes in taste
Cause:
The underlying cause is a loss of cerebral spinal fluid through a hole or tear in the dura.
When this fluid volume is reduced, there is less fluid available to support the normally floating brain inside the skull.
The resulting sagging of the brain and other structures causes headache and other neurological signs, symptoms and complications.
Treatment:
Simple measures to help with symptoms include bedrest, fluids for hydration and caffeine intake make help reduce the severity of symptoms.
When symptoms are significant or persistent, the most common initial treatment is an epidural blood patch.
Some blood is taken from the patient’s arm vein and is injected into the spinal canal in the space outside the dura to help patch the leak.
Still, the pain meant she had to lie down for hours on end and, a month later, she returned to her GP who sent her for an MRI scan.
“The day after the scan, the neurologist phoned me himself and said they had found a mass on my brain. I really thought it was a tumour,” she said.
But when Angela saw the neurologist in May 2015 she was told she had spontaneous intracranial hypotension.
The most common cause of intracranial hypotension, or low cerebrospinal fluid (CSF) pressure in the brain, is a CSF Leak.
“The doctor said, ‘there’s a hole in your brain and the fluid that surrounds it is leaking out’,” she said.
“He explained that was why I was getting so much pain, adding that it was really rare.
“I wasn’t officially diagnosed with a CSF leak, but spontaneous intracranial hypotension is closely related and a common cause.
“I gave birth on my knees on the hospital bed, with my head pushed into the pillow, so always wondered if that position is what caused my condition.
“I know CSF leaks can happen after an epidural in childbirth, which I didn’t have, and doctors have never confirmed my suspicion.”
According to the CSF Leak Association, when fluid leaks through the usually watertight membrane covering the brain and spinal cord, or dura, the skull drops and the brain slumps.
This causes severe pain, which is worse when standing.
The exact cause of Angela’s leak is not known.
She has had two surgeries to help with the pain, where an epidural blood patch is used to close the hole in her brain, the first in October 2015 and the second in December of that year.
But, after a car accident the following June in which Angela’s car was rear-ended, her symptoms returned with a vengeance.
“Within a month, I was getting extreme migraines and headaches again,” she said.
“The pain goes up my neck and into my head.
“I got to the point where I couldn’t play with Jacob. I didn’t feel like much of a mum.”
Angela had an intracranial pressure device (ICP) inserted into her head, to measure the pressure inside her skull at Edinburgh’s Western General Hospital.
The pressure was low, indicating her spontaneous intracranial hypotension had worsened.
“I am in constant pain,” she said.
“This is no life for a woman of my age, especially with a child.”
Meanwhile, her husband, Matthew, who she met through mutual friends and is at college studying electrical engineering, is concerned that his wife is showing early signs of dementia.
He said: “She already has short-term memory loss, forgetting things I have told her and writing everything down.
“I am really worried I am going to lose the person I married.
“I cannot stand to think about watching her deteriorate.”
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