Well it’s been a year since I was diagnosed with IIH and last week I had yet another visit with my Neurologist, so I think it’s probably time for a bit of a health update.
But before we get to the update, let’s backtrack a bit because a lot of people have asked me what symptoms I had prior to my diagnosis, which I haven’t really explained before. So here goes.
My IIH Symptoms
In December 2014 I began to notice that the vision in my left eye was becoming slightly blurry. I wasn’t too worried about it as I was short-sighted and back in 2003 had laser surgery to fix it. At the time they warned me that it might eventually wear off as my short sightedness was quite bad, so I figured that time had probably come and I would have to start wearing glasses again.
In January 2015 I went to my optometrist for a check up and he reported that everything was fine, although there was something going on behind my eye that sometimes could indicate a tumour. He must’ve seen the colour drain from my face because he quickly followed that up with, “but I’ve had a colleague look at it and you’re fine. There’s nothing to worry about. You just need glasses when you’re working at the computer.” #phew
But his comment about the whole “sometimes that could indicate a tumour” bothered me, so I went to my GP for a chat about my vision. She brushed me off and told me that if the optometrist said I was fine, then I was fine.
Except I wasn’t fine. My balance had been off for a few months and a couple of weeks after visiting the GP my vision became worse – every time I stood up, my left eye went completely black for a good 10-20 seconds.
Then, on a random day in February while I was standing at the supermarket checkout with a trolley full of groceries, the left side of my mouth went completely numb.
“That’d be bloody right,” I remember thinking to myself “I’m having stroke in the middle of Coles” before I shoved my toilet paper, self-raising flour and various other essentials onto the conveyor belt, paid for them, made my way home and called another GP for a second opinion.
Turns out that blurry vision, eye black outs, facial numbness, balance issues, migraines and a throbbing in your head that occurs every time you exercise is actually cause for concern.
The ophthalmologist thought it was either MS, a brain tumour or IIH, which is short for Idiopathic Intercranial Hypertension. The Idiopathic bit means they don’t know what causes it #great
The Intercranial Hypertension bit means there’s increased pressure around your brain caused by an excessive amount of cerebrospinal fluid (CSF) being produced #fabulous
An MRI and a lumbar puncture confirm a diagnosis of IIH. Diamox, Topamax and various other drugs were administered in an effort to reduce the increased pressure around my brain, which was/is putting pressure on my optic nerves and causing all the vision, balance, numbness and headache issues.
Weight loss was also suggested as a cure, although neither the neurologist, endocrinologist or ophthalmologist know what the link is between weight and IIH – they just know that in some cases there is one. So I stopped eating cake, started swallowing tablets like a senior citizen and twelve months later, here we are.
My IIH Health
If you’ve been following this whole IIH thing from the beginning, you’ll know there have been a few ups and downs along the way. My neuro (we call him Sweary Neuro Bloke or SNB for short because, like me, he loves to drop a good f bomb every now and then) calls it “doing the Cha Cha” which is an excellent way of describing it.
When I saw SNB last week I was quietly hopeful that when he peered into the back of my eyes with his torch thingy (yes, I believe that IS the technical term for it) he would have good news for me. Turns out I was sort of right.
Finally, after twelve long months of weight loss, medication and all sorts of tests, the swelling in my right eye is almost back to normal. My left eye is still swollen although nowhere near as swollen as it once was. There’s also a ‘tide mark’ left on my left eye from where the original swelling began and we won’t know if that’s going to be a permanent problem until all the swelling has gone.
SO. SNB has reluctantly allowed me to reduce my Diamox dosage from 5 tablets a day to 4. Last time he let me do this I was beside myself with excitement as I thought I was on my way to being in remission/cured. But then the headaches returned and BAM! the swelling was back too. So I’m not getting too excited this time around.
I’m going back to see SNB in six weeks time and I’m hoping the left eye has decided to play nice and all the swelling has settled by then #fingerscrossed
Let’s Talk Weight Loss
It’s no secret that I’ve battled with my weight my entire adult life – mostly due to an under active thyroid, a love of cake and an intense dislike of anything remotely exercise related.
But when I was faced with losing my sight or having to stay on medication for the rest of my life or worse, having a permanent shunt inserted into the back of my head to drain the excess fluid OR I could have a crack at losing a few kilos to see if that made any difference to the CSF levels floating around in my system, something inside of me clicked.
I had determination like I never had before and when my endocrinologist and his side kick The Food Nazi presented me with the most ridiculous eating plan I’d ever seen, I took one look at it and said, “Well, I don’t know about you but it’s probably time I got a new phone cover.”
Surprisingly, neither of them laughed and even though I was being my usual self-deprecating self, I went home, took that photo up there and threw that phone case out.
I also got rid of the part of me that would usually say yes to all the things that day too. “Would you like dessert?” NO THANKS. “Can I get you a wine?” NO THANKS. “Do you want to meet for coffee and cake?” NO THANKS. “Have some more!” NO THANKS.
And if anyone would crack the sads and tell me I’m no fun/not eating very much/annoying them because if I don’t have cake then they can’t have it either, I’d reply with, “I’m trying really hard not to go blind, so I’m not eating cake or drinking alcohol for a while” instead of my usual, “Oh what the hell. You only live once right? Pass me the plate/fill her up/I’ll take two!”
So after a year of not eating cake, drinking much alcohol or taking on anyone else’s food issues, here’s the result:
I’m 20 kilos lighter and if I had my way I’d stop right now. But SNB thinks another 5-7 kilos will solve the swelling in the left eye, so the cake eating will have to wait for a little bit longer.
The message in all of this
The one thing I tell everyone who asks me about my health journey, is to listen to your own body and trust your instincts.
I knew something wasn’t right with my eye sight and had I of listened to the busy professionals who initially brushed me off and not trusted my own instincts, I would’ve eventually lost my eye sight completely.
Don’t be scared to deal with your health. Get that thing that’s been worrying you looked at. Make the appointment and once you’ve been, if the problem still persists, go back for a second opinion.
You know your own body and how it’s meant to operate better than anyone. Look after it and most importantly, listen to it.
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