Hi everyone,
My name is Becky, im 21, and i was diagnosed with Idiopathic Intracranial Hypertension nearly 2 years ago.
This is my story and words of encouragement for everyone.
I started to get severe headaches in the mornings and when i bent over, also when i bent over then stood up i would go blind in both eyes, i was soo scared as i was only 19 years old. I went to my doctors and they told me there was nothing wrong with me i was just stressed and it was in my mind. 3 months later at Uni i was in Dance class doing a practical exam and half way through i went blind which lasted for a minute. I freaked out! The next day i went to my doctors, they once again told me i was making it up. So i went to the opticians. They told me my optic nerve was bleeding and i had paplioedma in both eyes. They said they would write to my GP. 2 weeks later i was being seen by a consultant neurologist. I was admitted into hospital and i had an MRI and then a lumbar puncture, my opening pressure was 36cms H20 so i was diagnosed with IIH.
During this stay i was commenced on diamox and i had 2 further LPS both remained around 30cms H20.
I was discharged but i was so upset and felt depressed. I was back in hospital 3 months later with the same problems, high pressure and leg pain following the lumber punctures.
The next 2 months i didnt leave the house, i had slipped into such a state of depression didnt want to leave the house and i had no-one to talk. I started to think about taking my own live, i would even started to make scratched on my wrists. My GP put me on fluoxitine which psych'd me out.
In August last year the headaches returned, my GP put it down to my depression, at the same time i decided to reapply to Uni, but to study nursing. I was admitted to hospital and my LP showed my pressure was 40.5cms H20. This time they decided to put in a Ventriculo-Peritoneal Shunt. So they did. The day after the shunt, i went home.
Two days later headaches returned, the shunt had blocked, went back into hospital, had the shunt changed, went home the next day.
Once again, two days later, headaches, fever, sickness, fast heartrate. This time i felt really ill, i really felt like i was honestly dying. My mum called out the doctor as it was 9pm at night, finally at 2.30am a doctor came out, he then phoned an ambulance, they arrived at 4am as i wasnt deemed an emergency.
When i gpt to hospital it turned out i had Staph MENINGITIS. There was me feeling like i was dying, i nearly did!
I was in for 3 weeks, CVC, oxygen, many operations, a new shunt, many IV antibiotics.
I am now OK-ish, i have anaemia, IIH still but ive got the shunt, high blood pressure, fast heart rate, constant head aches.
The moral of my story for eveyone on here is, no matter what you go through, never give in, no matter how tough things get, dont ever let life get you down, im now studying Nursing at University and my placement is in Neurology! I know its tough, you will get through, please dont distance yourself from your friends and family. Thats what i did, and i was so clsoe to taking my own life, i now have a gorgeous 5 month old niece, i nearly never met her.
If anyone wants to chat, leave me a message, im here for anyone who needs it, we're all in the same boat!