There is at least a reason I've not written it. Let me explain. (It's a long post - sorry!)
You may remember way back in March I wrote a post called Dear Depression. In that post, I mentioned my head being full of the sound of bees, that I was exhausted but couldn't sleep, that I was more accident-prone and more forgetful than normal... Little did I know, but they were all signs of something much bigger and much scarier.
What I didn't mention in that post was that my forehead sometimes felt like it was being squeezed in a clamp. Well, gradually over the next few months, the headaches started getting worse. On one day at the end of June, it was so bad I had to pull my car over and throw up in the gutter (not a highlight of my summer). Since then, I have averaged between 4 and 6 hours sleep a night; I'm permanently tired (even on the days when I did manage to sleep for 12 hours); my limbs began to feel like they belonged to someone else; I started getting migraines, both with and without a headache; I got dizzy whenever I stood up; I lost my eyesight a couple of times; the migraine auras stopped going away; I felt sick... It's been pretty horrendous. I just put it all down to stress, but went to the doctor about a month ago because it just kept getting worse and worse. To cut a very long story short, she couldn't find any medical reason for it, so just wanted to prescribe me medication to stop the headaches.
You might not have noticed (where have you been?!) but I'm quite stubborn, and I hate not knowing why something is happening. I can't just treat the symptoms if I don't know what the cause is. So I refused the pills and asked what my other options were. She didn't really have any, so I asked if it could be my eyes, and she said that an eye test wouldn't hurt (HA!). Off I toddled.
If you've had an eye test recently (if not, why not?!), you will have met the optician's favourite torture instrument - what I have termed the 'evil camera that blows in my eyes'. Basically, it takes a photo of the back of your eye while blowing air at your eyeball, which seems counter-intuitive since blowing in my eyes generally makes me close my eyes, thus resulting in lots of lovely photos of my eyelid and zero pictures of the target. Anyway, I'm sure it makes sense in Opticianland.
After about twelve attempts, the assistant was getting increasingly frustrated and almost gave up, but thankfully we had one more go and just about got it. I thought nothing of the photos until after the optician had done her thing, decided I needed a new prescription, and then opened up the pictures of my eyeballs on her screen. I should have known this wasn't going to go well when she asked if the doctor had done a CT scan (obviously not), but what I wasn't expecting was to be told to go straight to A&E. Do not pass go, do not collect £200.
I think I swore quite a lot, but to her credit (and the credit of the other two staff who rushed in at this point), no-one mentioned it. I didn't really understand why it was so important that she phoned a neurologist and I rushed to A&E, except that my optical discs looked like fried eggs rather than marbles.
I don't think the A&E staff really understood either, which is why I was still sitting in the uncomfortable waiting room at Edinburgh Royal Infirmary on a Sunday afternoon, six hours after arriving, with anaesthetic in my eyeballs making my pupils dilate to the size of dinner plates:
|After six hours in A&E with VERY dilated pupils|
By this point, I still didn't really understand why I had been rushed to A&E. They hadn't done anything except make me look like I was stoned, which I'm guessing was not the optician's primary aim all those many hours ago. All I had been told was that my optical discs were very inflamed, which 'could be caused by something benign, but could be something more sinister'. Right.
Monday morning rolled around, and off I went to work, pupils still massive so still a little bit blind, and awaiting a phone call from a neurologist.
Fortunately I didn't have to wait too long for the call, and by 1.30pm that same day I was installed in a much more comfortable chair at Edinburgh Western General hospital. The neurologist was expecting me, took me through to her office, did all sorts of tests (called me a 'walking miracle' when I told her how accident prone/ disastrous I am - I much prefer that to 'walking disaster'), and then explained that there were a few potential causes for the 'fried eggs for optical discs' (though didn't explain what those causes actually were...) She wanted to do some tests, so sent me off for a CT scan and 'something involving radioactive goo'.
I have decided that, as much as I am a 'walking miracle', I also spread
Radioactive CT scan things are hugely unpleasant. If you've never had one, let me describe it. It's like having your head inside a washing machine on the spin cycle. You aren't allowed to move, not even a little bit. You have a needle in your arm which is connected to a machine that beeps occasionally. You have been warned that it will feel a little unpleasant when the radioactive goo is released, but you haven't been told when exactly that will happen, or how long the whole experience will last. When the radioactive goo is finally released, it feels like someone has injected liquid metal into one arm, which then spreads through your head, your other arm, the rest of your body and finally your legs. When it passes through your *ahem* nether regions, it feels like you have wet yourself in a most spectacular fashion. Except of course you can't move, so you can't check whether or not your dignity is still intact.
Before the CT scan, I was told that if the results were clear or inconclusive, they'd need to do a lumbar puncture, but we'd get to that if we needed to. So the relief of being told that there are 'no lumps, bumps or blockages', was very rapidly cancelled out by the realisation that I was about to have a very long needle inserted in my spinal column.
I'm not going to go into the graphic details, but the lumbar puncture was not an experience I ever want to have to go through ever again. I would take the radioactive CT goop experience any time over a lumbar puncture. I was ushered into a very small, very hot room, where I had to lie in the foetal position, without moving, facing a wall. Once the doctor had painted my back with cleaning goo and drawn arrows all over me (presumably like some sort of treasure map, with an X to mark the spot), obviously the needle wouldn't go straight in, so she kept hitting the nerves connected to my hip, sending shooting pains up and down my legs. When she eventually got in, she announced that the 'pressure is so high it's practically gushing'. That's exactly what I want - cerebrospinal fluid gushing everywhere. Uugh.
I have no idea how long I was staring at that wall, melting and occasionally twitching (to be fair, I had done A LOT of lying still. I'm not very good at being still, it's stressful). Eventually, she told me she'd finished, and showed me all of the 30mls of CSF she had collected. All that for half a teaspoon of brain goo (kinda). Hmm.
So, apparently the 'gushing' confirmed the suspicions, and I received a diagnosis. I have a rare condition called Idiopathic (ie, they don't know the cause) Intracranial (ie, in the head) Hypertension (ie, too much pressure) - basically, there is too much fluid in my head and since it has nowhere to go, it just squeezes my brain, thus causing the migraines, dizziness, nausea, flashy lights, swollen optic discs, exhaustion, etc etc.
IIH affects between 1-7 people in 100,000, and is most common in overweight women of childbearing age. I have been prescribed medication (with some bizarre side-effects - I'm sure there will be another post about that) and told to lose roughly 10% of my body weight (definitely a post or two about that). Next week I will meet an ophthalmologist to find out what, if any, damage has been done to my eyesight. And after that? Who knows...
The moral of this very long-winded story is that perseverance definitely pays off. I knew that there must be a reason for the headaches, even if the doctor couldn't tell me what that reason was, and I knew that taking medication to treat the symptoms rather than the cause wasn't the right thing for me.
I am so relieved to have a diagnosis, and despite the trauma the lumbar puncture seems to have made a difference already - for the first time in months, my head feels clear.
I am so thankful for the brilliant NHS staff who tried to help me, even if they had no idea what was going on. I am also grateful that the neurologist was able to see me yesterday, and that I had a diagnosis within 24 hours of being sent to A&E.
I'm pretty sure there is a long road ahead and it's not always going to be an easy one, but it's a hell of a lot less stressful now that I know what I'm fighting.
So. Once again, bring it.