Alright, so I had my lumbar puncture last week – you can catch up on the background story of how that came to be in this post – which wasn’t exactly a pleasant experience but it gave everyone the answers we’ve been waiting for, so that was a good thing.
As I said to the radiologist while I was lying on my side with a 127 needle hanging out of my back (I have no idea what a 127 is, I just heard him ask the nurses for one) and he’d just told me that my CSF Pressure Levels were twice what they should be, “Well at least this needle in the back nonsense hasn’t been a complete waste of time!”
Cue large amounts of laughter from the nurses in the room and a very quiet response of, “I can honestly say nobody has ever said that to me before” from the radiologist.
This was followed by a nurse high-fiving me as she wheeled me into recovery – “Look love, we’re finally getting you out of here and you did it all without any sedation. GO YOU!” – where I had to remain flat on my back for 4 hours in order to avoid a post-lumbar headache.
The nurses were AMAZING.
They laughed at all of my borderline inappropriate comments that I have a habit of making when I’m nervous – “How are you feeling love?” “Like this is one hell of a way to get an afternoon to myself!” – supplied me with magazines that unlike every other medical waiting room I’ve been in lately, weren’t from 1994 and made me the most delicious hot chocolate I think I’ve ever had. I KNOW. SO KIND.
And the diagnosis is…
Anyway, after a follow-up visit to the Sweary Neuro Bloke – let’s call him SNB for short – on Friday, I was given the official diagnosis of Idiopathic Intracranial Hypertension or IIH as it’s more commonly known.
Basically, for some unknown and fairly random reason, my body is producing too much spinal fluid which has nowhere to go but up. So it’s sitting around my brain, which is causing the pressure on my optic nerves and pituitary gland.
I’ve been put on a drug called Diamox in an effort to alleviate the pressure and SNB wasn’t kidding when he told me I’ll “feel like complete and utter shit” while taking it.
Think numb hands, feet and mouth, no appetite (not as fun as it sounds) and the ability to fall asleep at any given moment.
BUT, as SNB said, “You will want to stop taking the tablets as soon as you start taking them, but you need to remind yourself that not taking them will result in significant visual impairment, so what would you rather live with?”
And that’s pretty much where we’re at.
IIH with a side serve of pituitary issues thrown in for good luck. Apparently one in every 100,000 people get this thing, which has left me wondering why I couldn’t have used those odds to win lotto instead?!
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