A Intracranial Hypertension interview
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How did all start?
I went to Specsavers to have my eyes tested, where they found Papilledema in both eyes, I was then sent for emergency MRI and CT scan. At this point I did not suffer with headaches. I then spent 9 days in hospital after a lumber puncture of 39.5 and was diagnosed with IIH.
Do you already have a diagnosis? How long did it take you to get it?
Yes. Idiopathic Intracranial Hypertion. Was diagnosed within a day.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I had a VP Shunt fitted in December 2015. I then had this moved to my pleural cavity as it was causing so much abdominal pain in May 2016. This has recently been removed in April 2018 as my body was rejecting it.
What has been the most useful thing for you so far?
Nothing.
What have been your biggest difficulties?
Rejection of the shunt. Shunt was doing its job for head but my body did not tolerate it. Now awaiting further investigations to see what to do next.
How has your social and family environment reacted? Have your social or family relationships changed?
My family has been amazing support, although I have lost several friends since.
What things have you stopped doing?
Working.
What do you think about the future?
At the moment I am trying to be positive but is extremely hard. I usually have high pressure without Papillodema.
So far, which years have been the best years in your life? What have you done during them?
The best years of my life was marrying my husband and having my two boys.
What would you like to do if you didn’t have your condition?
Would love to get back to work and be able to afford to travel.
If you had to describe your life in a sentence, what would it be?
My life is tough going, I also have Fibromyalgia and depression and anxiety does not help either.
Finally, what advice would you give to a person in a similar situation?
Be strong.
