Guest Post: Thankful for Family Support and Finding an IH Friend

Hi all my name is Ashley I'm 21 years old and I was diagnosed with IH on January 22nd of this year.

My journey started when I was in work, I'm a senior care officer in a home and got attacked 5 nights in a row by one of the patients. We called the doctor out to assess her, etcetera, and passed it on to management, however they never did a thing about it. The 5th night she attacked me she pulled my hair and pulled me to the floor.  She was hitting me with slippers and shoes, punching me and spitting on me. Once I got home I went to sleep and woke with really bad pains in my head, I couldn't bear bright lights and my boyfriend took me to the hospital. They thought I had a stroke at first, as my right side was very weak, the right side of my face was numb and I had pins needles in it.  They did an MRI, then they thought I had a bleed on the brain so did a CT scan as well.  Thankfully, both scans came back clear.

They then decided to do a lumbar puncture.  After 5 failed attempts they finally managed with an opening pressure of 54. They took the pressure down to 23 and I felt instant relief even though I had a sore back and head. I was admitted for 4 days and got out with acetazolamide 1000mg a day and pain relief. I was then back in and out the hospital every 7-9 days and had to get an LP every time. I went to meet my neurologist and neuro ophthalmologist. I don't like my neuro ophthalmologist -- he's really stubborn and doesn't listen to me. During my last 2 LPs, they hit the nerve in my leg so I suffer from nerve damage and it flares up now and then. I'm near 12 LPs this year so far and over 20 including the failed attempts.

I have lost some vision in my eye even though I haven't had papilledema so they are baffled slightly. Most days I'm stuck in bed in agony, but then I push myself to go out and do things with my boyfriend. My main support has been my boyfriend and my parents.  I lost all my friends over this as they don't understand although I have met a fellow IH'er and she is lovely so it's good to have someone to talk to and knows what it's like.

So that's my story thanks for reading xx

By Ashley Liddell