On various message boards and communities I'm asked "Well what does IIH do to you? How do you feel?". It's one of the perils of having a relatively unheard of condition. It's not a 'sexy' media cause, no-one on a TV show has it, so it's invisible to most of the world.
So here's how it affects me, and many others:
Most of us have had a hangover at one point. You wake up and your head is pounding, you feel like even moving your toe will make you vomit your skeleton out, the room is spinning, your vision is blurred. When you stand up you puke, the ground feels unsteady and you feel wobbly and dizzy. Oh the pain that sears through your head as you open the curtains and light pours in, like someone's shoving a hot poker through your ocular cavities. You need food but the thought of it makes you want to throw up again, you feel a bit confused and your memory is hazy, you hurt all over, even the noise you make pouring a drink is too much, your senses are overloaded, "What did I DO last night? Never again!".
Now imagine that you wake up feeling exactly like that one day, and that it doesn't go away. Imagine that the feeling lasts all day. You keep taking painkillers, and sleeping, but every time you wake up there's that sickening throb in your skull. Every time you move your head your stomach lurches, the ground beneath you sways, the light burns your eyes, everything's distant and out of focus as if you're looking down a tube.
That's the initial basics of it in a nutshell. There are other features like numbness and pain in my arms and legs, and weakness. My neck is stiff and my range of motion is limited. My back aches as if I've been run over by a bus sometimes. Something you might take for granted like sitting up can be a trial by fire for me. Ten minutes upright can put me out of action for 12 hours. My numb old legs do work, and it's physically possible to walk but the pain is unbearable, and the dizziness overwhelming. I can't thermoregulate so I'm either half-conscious from cold or near heatstroke, my perception of sensations (good and bad) are distorted so I don't often know if something's wrong with me until it's at an advanced stage, because I can't interpret the pain signals properly. Noise, and light can be horrendously painful, earplugs and sunglasses are my best friends, and I have both in varying strengths/colours to suit that day/hour/minute's symptoms.
Mentally speaking, many of us are tightly coiled springs of pain and frustration. We may appear 'snappy' or over-emotional, but emotional-lability is one of the side-effects of the increased pressure. We might cry over the tiniest thing, or be sent into a spiral of depression over something that seems trivial. Chances are that our memory and attention span aren't too crash hot either, and we might seem spacey or unfocussed. I have pulsatile tinnitus virtually 24/7, a constant pounding in my ears, that can be terribly distracting. Sometimes I forget simple words, or how to write, all of this is common in IIH/PTC/BIH. The tinnitus roars, and crashes in my ears almost 24/7, sleep can be difficult. Obviously lack of sleep makes being a focussed, coherent individual even harder. Keeping to any kind of schedule for eating, sleeping, taking meds is virtually impossible. Often I will simply forget to eat/drink/mediate myself which makes my condition even worse. I've often sat and sobbed because I feel so weak and ill, only for someone to ask "Have you eaten today?". Energy in=energy out, and if you're forgetting to eat then you might as well be trying to run the 400 metres with your feet tied together.
Energy levels are constantly variable. Head and body pain, and tinnitus, can disrupt sleep, so fatigue is common, but on a 'good' day we'd all appear perfectly 'normal'. This leads too many people to make the hurtful assumption that this is under our control, and that fatigue is an excuse to avoid things or people. Even after ten years I forget that I need to pace myself. On a good day I'm so happy to be up and about, I miss my painkillers, I overdo it (use the Wii or leave the house!) and earn myself three days fast asleep in bed. Whoops! Some of us (yeah me too) also have an intolerance to physical activity that can make anything from using the toilet to having sex an interesting experience. It's a sudden WHOMP to the head with the flake-out hammer, that means if you don't get yourself to somewhere safe and soft quickly, you could be in trouble. It's as if someone has set a sleep timer on your back that you can't reach. This can happen anywhere, makes life er... fun. *ahem*
This is public but comments are off. I'll probably make it a sticky post at some point, memory probs notwithstanding!
To find out more about IIH/BIH/PTC go here
If you have IIH and stumble upon this feel free to PM me, I love to 'meet' new Squishyheads.
If you're in the UK and would like links to UK-based resources including leaflets to give family and friends, or employers, PM me.