School went back for my two on Tuesday and how did I spend my first kid free day in 7 weeks? That’s right, at the Neurologist’s office. Clearly I did not think that appointment through when the receptionist gave me the date back in October last year!
LIVING WITH IIH
I was diagnosed with idiopathic intracranial hypertension aka IIH in May 2015. Catch up on how that was done here.
At the time I thought it take 6-9 months, maybe a year tops, to put my body into remission. Turns out I was way off.
There have been a lot of ups and downs along the way, but my last appointment with the neurologist in October was promising. My right eye was almost back to normal – hooray! My left eye was still a bit swollen, but my neuro allowed me to come off migraine medication, Topamax.
I was beside myself with excitement at this news because Topamax is one feral drug to be on. While it stops migraines dead in their tracks and helps with reducing the excess CSF fluid that is floating around inside my head, its medical nickname is Dopamax. Because it makes you very forgetful.
Not in a, “What did I come in here for again?” kind of way but in a, “I have no idea what this thing that I’m holding is called” kind of way. FYI, that thing is a pen.
So when I had my appointment with the neuro on Tuesday, I walked into it feeling really good. I was officially off Topamax, the headaches had not returned and I was down to four diamox tablets a day. I had this living with IIH thing totally sorted!
Except I don’t.
When the neuro looks into the back of my eyes with his torch, he usually makes the same ‘uh oh, this isn’t good’ sound. I tell him I don’t like that sound, that it’s not a good sign and I’m waiting for the day when I don’t hear that sound.
On Tuesday there was no sound. I didn’t say a word because I honestly thought I’d finally cracked this IIH thing. That the 25 kilos I’ve lost and the diamox I’m taking have worked their magic.
But then the neuro sat down, took his glasses off, sighed loudly and said, “I’m sorry but your right eye is swollen again.”
I sat in my chair, fighting back the tears that I could feel welling, when he added, “This is shit. Total shit.”
He sighed and swore some more. I laughed because let’s face it, laughing is a whole lot better than crying, and we had a good chat about what to do next.
THE PLAN
Unfortunately there aren’t too many options when you’re trying to fight IIH. These are mine:
- Increase diamox dosage from 4 to 6 a day.
- Lose more weight.
- Have an operation to have a shunt inserted.
I’m going with options 1 and 2 because having a shunt inserted into my brain, which then drains excess fluid into my stomach where it would be absorbed is not something I want.
I also don’t want to lose more weight but my neuro is an amazing bloke who really knows his stuff. He suggested 10 more kilos is probably required and while that sounds extreme, not eating cake for a bit longer is much more appealing than a head full of staples.
He did say that 5 kilos might do the trick but I told him if he truly thinks 10, then 10 I will do.
Don’t worry. I promise I’ll remain #kalefree
THE SILVER LINING
I have this routine after every neuro appointment, where I keep everything together….until I get to the car. Then I have a pity party for one. I cry for a bit, think how crap this IIH thing is, call Scott, cry a bit more and then I’m done.
I get my head back in the game and tell myself I can do this. That right there is the silver lining.
Living with IIH has shown me that I’m so much more determined than I ever thought or knew I was. As one my beautiful friends said to me in a message on Tuesday night, this isn’t going to beat you. Before you were just sparring. Now you are going in for the knock out.
Bring on the knock out round. I am ready.
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