It’s an Idopathic Intracranial Hypertension Life

Imagine your head feels as though it’s been crushed by a vice, a headache unlike anything you’ve ever felt before… All because you had taken a birth control pill.

Hayleigh Perry, now 19, was left with unbearable headaches after being prescribed with a birth control pill to help with her acne problem. “Imagine your head feels as though it’s been crushed by a vice, a headache unlike anything you’ve ever felt before, where every part of your head hurts and the pressure is unbearable, and it’s a pain no-one can see,” Rachel Turner, original owner of the IIH Support Forum, described the condition of a rare illness called Idiopathic Intracranial Hypertension (IIH). It only affects every one or two people in 100,000 and Hayleigh, from Basingstoke, Hampshire, has this illness.

It began at the age of only 15 when she was trying to get rid of her skin problem. What she didn’t know was that it would cause unbearable headaches and migraines right behind her eyes. Everyone, including her family, thought they were just migraines but her mother soon realised the sheer pain Hayleigh was receiving was irregular. She said: “It came across as this idea at first because of my large sensitivity to light and irregular pain behind the eyes. The pounding to the head was like someone was constantly taking a mallet to my skull.”

IIH does have these symptoms, though. IIH is a rare condition which a lot of people are unaware of. This is because you cannot be screened for it, the only way anyone knows you have it is through exhibiting the symptoms and having a scan to see your eyes and brain. Headaches are the main symptom and can be mistaken, like Hayleigh and her family thought, for migraines.

As Hayleigh did not know this, visits to the local doctor began. “I started taking a mixture of painkillers; paracetamol and codeine,” she said. “These, of course, had no effect. So came more visits to my GP. This time onto a migraine relief tablet. Pizotifen, this of which did not work neither.” After many trips to the doctor, it came to a point where the doctor did not know what to do himself.

As it is a rare condition a lot of GPs have not heard of IIH or even treated someone with the condition before. This meant, like Hayleigh’s doctor, they would not understand the symptoms. Referring Hayleigh to a paediatrician at the local hospital was all her GP could do. “This was a huge step into finding out what was going on,” she said. “After taking a look at me my paediatrician sent me on my way with some stronger painkillers, and an appointment for an MRI scan.” At the age of only 16, she was having to mature quickly in order to understand what was happening in her brain.

Despite all of the progress of finding out what was wrong, by January 2012 she was admitted to hospital with an increasingly bad headache. Not only that but it was made worse with a throat infection, glandular fever and a urinary tract infection. “I was admitted for five days and in that time I was given a lumbar puncture; a procedure in which clear bodily fluid, Cerebrospinal fluid, is drained off the brain through the spine to release the pressure in my head,” she explained. The doctors examined her MRI scan and it determined this was no brain tumour, this was, in fact, a rare condition, IIH.

IIH is a neurological condition that still to this day has an unknown cause, only symptoms can determine the condition. Intracranial pressure builds up around the brain without any existence of a tumour, just like with Hayleigh. It can arise spontaneously and obscurely and there is no cure. It does not matter what gender, age, race, body type or background you come from, anyone can get IIH.

Hayleigh’s doctor immediately prescribed her with Diamox, a medication that decreases the symptoms of altitude sickness. This helped her lose fluid quicker as this medication helps decrease the build-up of bodily fluid. But this brought bladder problems which interfered with daily activities. She said: “I would constantly need to use the toilet which in any case was not pleasant for me.”

The medication did work for several months until her vision started to become blurred and her headaches began worsening once again. Each time it resulted to another lumbar puncture. After deep research, it was established that the pill she was taking for her acne was the main cause of her IIH to the extreme. Without being on these tablets they noticed a big difference in the amount of pain and suffering. Although she will always be diagnosed with IIH, the acne tablets are thought to have been what triggered the condition.

A few other IIH sufferers have been through a similar situation to Hayleigh, including Rachel Yeo, 26, from Wales who developed IIH from taking Minocycline to reduce her acne. According to research, it is rare for an acne drug to do this, and scientists have still not proven the exact cause of IIH, but it has happened in a few instances.

For now, Hayleigh is in remission but for others with IIH they are not so lucky: “I am not as severe as some of the other sufferers out there, but with IIH, you can never tell when things might change for the worse.”

Ends (907 words)

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