Tamra May

It's an Idiopathic 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, 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 Idiopathic Intracranial Hypertension, IIH, as a pain no-one can see. Hayleigh Perry, only 18 years of age, suffers from this very condition. She lives every day with the pressure in her brain, causing daily tasks to become much harder than they would usually.

 

The condition itself is rare and studies suggest that one or two in every 100,000 people are affected. IIH is an illness in which there is raised pressure within the skull which puts pressure on the brain. Idiopathic means the cause of the pressure is unknown because a lot of the time, the cause is unknown.

 

Her problem arose in April 2011, only aged 15 and still at school when she got continuous headaches which appeared to be migraines. Everyone including family thought they were just migraines as she felt pain behind the eyes. However Hayleigh and her mother soon realised the sheer pain she was receiving was irregular. She explained them as, “Pounding to the head like someone was constantly taking a mallet to my skull.” With this the visits to the doctors began.

 

It started by Hayleigh taking a mixture of painkillers however these had no effect. She took more visits to the doctors and he gave her migraine relief tablets called Pizotifen but these did not work either. After many late evening trips to the local doctors he referred her to a Paediatric Doctor at the hospital.

 

This was a huge step as she was doing her GCSE’s and living her teenage life and now it was time to find out what was going on with her brain. After her first check-up with the Paediatric Doctor he gave her some painkillers and appointed her for a Magnetic Resonance Imaging Scan, an MRI scan checks health and the body, and sent her on her way.

 

Despite visiting the doctors, come January 2012 she had to be admitted to hospital with an increasingly bad headache. This was made worse by having a throat infection, glandular fever, and a bladder infection which was a urinary tract infection.

 

She was admitted for five days and in that time she was given a lumbar puncture; a procedure in which colourless clear bodily fluid, Cerebrospinal fluid, is drained from the brain through the spine to release the pressure. Once she had the MRI scan it determined she had no signs of a tumour but this was the day she found out she had IIH.

 

After discovering this, her doctor prescribed her Diamox and this helped her loose fluid quicker so it helped with the eye problem. But this brought bladder problems which interfered with daily activities. This medication worked for several months until her eyes started blurring out and her headaches began worsening. Each time this happened resulted to another Lumbar Puncture.

 

When the doctor looked further into things, they realised the cause of her illness was the pill she was on, Loestrogen which was designed to help with acne.This opened up to the discovery that as a sufferer she overproduced the fluid which caused pressure on her brain. “As do many of the other sufferers with the odd few suffering from low pressure from time to time,” Hayleigh said.

 

But with her illness it brought more great problems because the Diamox did not work and she was moved onto a steroid. “This of which caused me a large amount of weight gain, which was bad enough as the illness itself doesn't help you with weight loss.” She added.

 

As progress grew, she had to be referred again as she was too old for a Paediatric Doctor and was moved to a Neurologist which she still sees today. With this new options arose and her medication changed from Diamox onto Topiramate, an anti-epileptic drug which is used to help lose weight.

 

This did not work either so there was talk of a VP shunt. This talk was on-going until her Neurologist decided this wouldn’t be the best option for her as she’s not as severe as some of the other suffers out there. Hayleigh added: “But there is still the possibility of it in the future because with an illness like IIH you can never tell when things might change for the worse.”