The brain sits inside a bag of spinal fluid that extends all the way from the skull down into the spine. This bag also consists of a group of membranes called the meninges, the same group of membranes that are responsible in cases of meningitis. This spinal fluid inside the bag flushes waste products from the brain and provides cushioning and support in the event of any movement. When the fluid pressure becomes too low, however – typically when there is a small leak somewhere in the meninges – the brain sags downward and stretches the brain's membranes and nerve lining.
Patients suffering with this condition often complain that their thoughts are hard to form and their speech is often slurred. They experience sensations of dizziness and nausea and will start to complain of random periods of dry eyes and tinnitus. More debilitating than any of these things, though, is the intense headache incurred from sitting or standing in an upright position. Consequently, maintaining a normal routine soon becomes impossible. It is a condition known as Low Cerebrospinal Fluid Pressure Headache and it turns out this is the likely cause of all my recent headaches.
Write about what you know, or so the adage goes. Well, for the last five months or so, trying to understand the cause of all the pain inside my head has been occupying all my efforts. Defining my experience, if you like. The story of how I came to find out is interesting in itself because it's taught me a thing or two about diagnostics and analysis, not to mention the virtue of valuing the good health you have already. So I thought I would try and tell it here. Three paragraphs in, here goes.
It all started about fifteen months ago with a nagging and persistent headache that seemed to show up at the end of every day, sometimes even earlier. It persisted over spring and summer but to cut a long story short, it was never fully understood. Of course, hindsight is 20/20 but it wasn't handy at the time and it was much easier for everyone - doctors and myself included - to wave the vague finger somewhere in the direction of migraines, stress and depression and identify those as the main causes. I was working as a freelance environmental enforcer at the time and whilst I freely admit it was getting on top of me for many reasons, the headaches proved to be the final straw. It made sense that it could be the stress of the job that was giving me all this every day and so, after three years, I figured my body was trying to tell me something and I hit the panic button, made my excuses and left.
By happy accident, the headaches did fade away around the time I was working back in Nottingham in the winter as a labourer, but the minute I got returned to London they instantly returned. Naturally, it was tempting to think the two things were connected. Somehow, despite wanting to live here, London was stressing me out? It was kind of plausible. But to the point where I couldn't walk, take public transport or leave the house? If that was true then the science fiction writer in me was desperate to find out why. Was it something to do with all the smog and pollution? A consequence of living amongst so many wireless transmissions? Things were starting to border on tin-foil hat territory. So, in the absence of any tangible theory, stress was the only explanation left to sit there and take root.
Each time I went to see the doctor they prescribed me some more mind-bending medication, five different types in the end, some with substantial side-effects that really slowed me down. Things continued to deteriorate though, and it wasn't long before I was feeling a crushing pain inside my skull consistently and all the time, to the point where I couldn't think straight and would have to lie down or go to bed. I lost my new job and it wasn't long before even writing became difficult. Panicking, I kept on turning up at the Doctor's or A&E but because there was no sign of stroke or tumour they kept on sending me back to see the other. It began to feel like I was trapped in some kind of Kafkaesque loop.
My condition was now at the point where I couldn't move my head without it feeling like it was being constricted in some kind of vice or calliper. By evening, I'd be flat on my back with my head tilted towards the ceiling because standing or sitting felt like I'd been bashed on the back of head with a spade. Well, it still does, to be honest. But back then I didn't know how to treat it. I don't mind admitting that things were starting to get a little desperate
But as I lay there, dosed up on some new medication that was giving me heart palpitations and making my face itch, it hit me: if lying down flat was the only thing that relieved the pain, surely this pointed to a potential problem with my spinal posture or pressure? Or circulation, something like that. A simple search through online medical journals and an urgent visit to a private neurologist confirmed it. Every symptom matched those associated with someone with a case of Low CSF Brain Pressure. And so it's amazing that just by asking a different question, I was on the money in less than five minutes flat. The neurologists don't yet all concur, sadly, and the truth is that no-one has any real idea how long it will take before I am feeling fully better or 'cured'. It could take years, or tens of thousands of pounds if I don't want to wait that long. Which has been quite a lot to take in, to be truthful.
As far as emotions go, it's a bewildering mix. I'm relieved that I don't have a tumour so as far as that's concerned, I'm very grateful. But in other respects, it's been totally overwhelming because it has fundamentally changed so many things about my life and in many ways I did not expect. You see, whilst everyone was saying this was stress, there was the hope that this condition would leave in the same way that it started. Now I know it isn't some intangible illness or pollutant but an actual physical condition that I have to live with and manage until they find a cure, usually by means of epidural blood patch. If it is low brain CSF (and all the evidence so far suggests it is) then it's quite a rare condition (affecting five in a hundred thousand people) which is why it is taking so long for anyone to diagnose and I gather treatment may not be very quick or straight forward. Basically, the rest of the next year looks set to turn out very differently to the one I'd originally planned.
I spend most of my life lying down now and that soon brings with it many problems of its own. A simple thing like walking to the shops is difficult and longer excursions require the right combination of pills before I can realistically set off confident I can get back without having some kind of seizure. These happen when I do any kind of activity and become so bad that I have to lie down in public spaces which - I'm sure you can appreciate - is not always possible in a big city like London. I don't want to get hooked on painkillers so I save those for special occasions. As a result, I cannot work and social trips are beyond me. Countless hours are spent lying on the floor and I seem to have become quite an expert in 'shutting down'. Everything is difficult when my brain feels like it's being poached, especially writing because I can't focus on the words. I end up just wanting to throw my laptop on the floor.
Much of the realisation has felt like some kind of slow and terrible dawn. I've heard about the stages of a grieving process, and in many ways, that is exactly what has been going on, but over many different things as I come to terms with what is lost and what soon might be. First I was in denial, then I was angry, especially regarding my reduced ability to write. Then I was depressed, then I tried to bargain with my doctors, frantically trying to change the situation by pleading with them to bump me up the queue. Acceptance has been reached now, I think, on a whole number of losses or 'changes'. And that is good, because now I've accepted it, writing should now become a little easier. It will be slower now, and less comfortable, but I can still do it just about. Especially if I fashion some kind of ingenious seating arrangement or something. It definitely will be worth the effort to try.
Who knows how it will all progress. Various books are on the brink of completion but I was never a very quick writer to begin with. The Iron Gate will be published one way or another within the next year, I'm very definite of that. I'm also going to try and forget about the fact I can't make this year's Loncon3. I was due to attend as a Tech volunteer and was really looking forward to it but here's hoping everyone going and taking part has a really good convention.
The positive is that I know what I'm fighting now and that's an immense relief. Knowledge is power and I can now manage my symptoms quite accurately, to the point where I'm no longer caught out in the way I ever was before. Caffeine actually produces spinal fluid, so a hearty kick of the black stuff in the morning keeps me sweet for a couple of hours, sometimes 'til lunch if I take it very easy. I have a loving family, friends and a very supportive partner which means more to me than anything at a time like this.
Hopefully now I've turned a corner, I'll be able to fashion some progress in the year ahead. Here's hoping. And thanks for reading this far - I know this doesn't make for light reading but it feels better to write about it and get it off my chest. I'll keep a log of any major developments but for now, I have finished writing about what I know. Now...time to dust off those old word files and get back to being started.