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My story/words of encouragement (BIH/IIH)

Posted , 6 users are following.

becky21southampton
becky21southampton

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!

1 like, 5 replies

5 Replies

  • mam
    mam

    Posted

    HI BECKY OUR 5 YEAR OLD SON IS GOING TO HAVE A SHUNT PUT IN HIS PRESSURE IS 34 AT MOMENT IT HAS GONE UP SINCE BEING PUT ONTO THE MEDICATION . HE TAKES THIS 3 TIMES A DAY BUT ITS NOT MUCH GOOD. WE ARE WORRIED SICK WE DONT HAVE ANY IDEA WHAT THE OPERATIN ENTAILS AND HOW LONG HE WILL BE IN HOSPITAL FOR ANY INFORMATION YOU COULD GIVE US ABOUT THIS WOULD BE GREAT. HE SHOULD OF BEEN IN HOSPITAL BY NOW TO SEE HIS SURGEON BUT THE HOSPITAL HE HAS TO GO TO HAS LOST THE LETTER FROM LIAMS HOSPITAL THAT HE GOES TO NOW. LIAM IS ALSO GETTING A BIT IMPATIENT TOO AS HE IS ONLY 5 AND NOT TOO SURE WHAT IS GOING ON HIMSELF AND AS PARENTS WE CANT TELL HIM. WE ARE WIATING ON DOCTORS SECRETARIES TO SORT THIS OUT SO HOPEFULLY BY THE END OF THE WEEK WE SHOULD HAVE SOME NEWS. HOPE YOU ARE FEELING WELL SOON TAKE CARE smile
  • Guest
    Guest

    Posted

    Your post really touched me, especially regarding the depression etc. i know you put this on a long time ago, i havent been on here for ages !! i get really low and withdrawn, i dont know if its the tablets or just generally the condition. i have had my meds changed 3 times now and had two lumbar punctures so far, nothing seems to be working !! a lot of the time i feel depresses but i thought it was only me, your post has really helped me and i wish you all the best for the future

    Span xxx

  • sapid
    sapid becky21southampton

    Posted

    Hi dear becky, so you mean this problem is life time. What about lifetime treatment?

    I will write my story soon...

  • luis74497
    luis74497 becky21southampton

    Posted

    I've been having a headache now for six months 24 hours a day it real bad in the morning I had a CT scan and MRI Doctors Tell me every thing looks normal I went for a jog my head felt like it was going to explode and my ears were bleeding a little and when I went to sleep is sound like Crinkling paper noises so I went to the hospital and they said I was normal so the pain got worse for the next two months and now it's been three months later still having a headache no pills work I realize when I give Matt the pressure in my head gets worse so I'm asking did you have the same symptoms please reply and when I take a sleeping pill to go to sleep the pain is getting worse in the morning any pills make it worse

  • ciara25432
    ciara25432 becky21southampton

    Posted

    My partner just got diagnosed and she ended our near 4 year relationship and we had planned to marry and had our entire life planned out. Her mother is a great support and asked me not to get offended by her cold actions. One day she was there in our home and the next she wasn't. I've stayed patient and sorted out any worries attached to where we had lived including our two animals. I know she is back on anti depressants but her physical health is fine. A friend seen her on tinder I'm so confused as her mind frame she also dyed her hair a uncharacteristically dark colour from being blonde. She has been our with friend down where we once shared a home but is yet to see me. I feel very lost I wanted to stick by her as I have always over the years. Even one of her tinder profile pictures is of us I don't know who this new person is. I just want to support her can you possibly shed some light on what is happening? Her mother told me she behaves as if she's lost the will to live. I am so scared for her but can't get to her.

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