A young person's journey through IIH

By Hannah, Idiopathic intracranial hypertension, United Kingdom, February 25, 2021

I was diagnosed a week after my 14th Birthday. I had been suffering with terrible  headaches 24/7 for a year after being unable to keep up attendance at school. I LOVED school. In the lead up to diagnosis I must have been to the doctor about 50 times which was totally unlike me. I could count on 1 hand the number of times I had been to the Dr before. I couldn't stand the pain, it was excruciating . I had many tests and was never believed. I was told to imagine a suitcase and wheel my headaches away in a suitcase by one such dr. I was told I was stressed going into my teenage years and was made to feel like I was a nuisance. I was told it was all in my head. In respect it was, but not psychologically like they had thought. The prejudice of being a young person diagnosed with a rare condition  has been and still is one of the toughest fights, the constant doubt by others and second guessing really can affect your wellbeing. Lucky I had a very supportive family. One night the pain got so bad, I went to A and E and was about to be sent home with antibiotics for sinusitis when they checked my eyes. The pain of the light the dr shone on my eyes made jump backwards and knock over a chair. Thank goodness for that dr who said something isn't right here.

A week of tests and scans and nothing showed, I was about to be discharged when a visiting consultant at the hospital came to see me. 

He said we are going to do  lumbar puncture, to check for a condition I have seen before in one other patient. You probably don't have this but we have nothing left to test for.

I remember going down to the anaesthetic room, wanting to find answers when I wake up but not wanting this rare scary condition.

My lumbar puncture showed a high intracranial pressure on the brain and I was diagnosed with Benign Intracranial Hypertension. Later on as more and more people became diagnosed, they changed the name to Idiopathic Intracranial Hypertension as some people lose their sight with the condition which also causes chronic pain as well as wealth of other debilitating symptoms.

On leaving hospital, I asked for some written or verbal information from the doctors on my condition. I was told they didn't have any and to google it but when I did there was very limited information especially for children with the condition as the average age of diagnosis was 30.When people I knew asked me about my condition they would go quiet as they haven't heard of it and thought it cant be that bad as I would surely  have heard of it. I also had to be homeschooled because of the condition and people were often dismissive because they didn't understand or recognise the condition and would compare it to other conditions which were very different. The other difficult thing is that there was no support groups locally and I have only ever met one other person with my condition.

My disease course has been even rarer as I didn't respond to any of the medication to drain the fluid around my brain. Treatment options were very limited and often experimental. Every doctor I saw wanted to learn from you, from your scans to medical samples. I felt very passionately about people learning from me and progressing awareness around the condition. But being so rare a little bit of your heart sinks knowing that progression was a long way off and that it wouldn't help your case for a long time if at all.  I had to have lumbar punctures every 3 weeks for nearly a year and ended up having about 60. The ventricles in my brain were too small for me to the most common shunt the VP shunt in my head to drain the fluid so I had a LP shunt in abdomen.

I then went back to the cycle of not being believed that the shunt wasn't working and I was still having headaches. 

When I turned 16, I was transferred to adult services where I was taken more seriously and able to take some ownership over my own care. I met a great team of drs at hurstwood park who looked after me. One of the drs sat down whilst I was lying in my hospital bed undergoing invasive tests.  He said very sincerely I know its been a long journey for you, and it is still gonna be a long journey but we're on this journey together. And after years of not being believed I didn't feel 1 in 200,000. I didn't feel alone.

Things went from strength to strength, they are still not perfect but after a few more surgeries, I made it through school, college and University. I am still receiving new diagnosis of associated conditions such as chronic migraine and sleep apnea and I still probably have many surgeries to come  (last one was last year) but I am now an educator of my condition, I have been lucky to have been involved with many projects and charities  including the NHS Youth Forum and the Journey of  a Lifetime Trust who I had a life changing journey to africa who have made me realise I am not so different from everyone else and a person rather than a statistic.

To all those amazing children and young people diagnosed with IIH, although the journey can be tough there is hope. Not all stories are like mine, everyone with the condition has their own story to tell. Hang in there and never give up.

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