Even at moments of the most extreme duress, it is difficult for me to stop thinking like a scientist.
A few days after the birth of my son some twelve weeks ago, things were just starting to normalize for Richard and me. We were home from the hospital and, though the daze of sleepless nights had hit us pretty hard, we’d found time to get out of the house. I recall that walk in the park now as if it had been a dream, the baby snug in a sling against Richard’s chest, a little miracle with blue eyes and spun-gold hair: a warm autumnal afternoon, weak sunshine, leaves colored russet and flame and fluttering to the ground. We even picked a few late blackberries from the tangle of brambles by the pond. Richard ran up Stave Hill and I snapped his photo, silhouetted with our baby against the deep blue sky streaked with herringbone clouds.
The next morning, something began to be not quite right in my head. In the early hours during a feed, in the darkened bedroom, the streetlamp reflecting off the overhead lampshade looked uncomfortably like an evil eye that would not stop glaring at me. When I woke later to daylight, I started to register visual disturbances. Assuming it was the aura of a migraine, which I suffer from occasionally, I resigned myself to the inevitable headache. But the auras were all wrong: normally they scintillate in a crescent shape to one side of my vision, distracting but largely benign. This was something different: it wasn’t just a disturbance superimposed over reality: it was an alteration of reality itself. Fascinated more than alarmed at this point, I stood there trying to see a soap dish on the sink that I knew was there, but it seemed to slip away from view from whatever angle I attempted. It was both there and not there, in a blur of distortion similar to the way that ripples on a lake obscure the stones on the bottom. But in a few more minutes, I was almost blind.
I groped my way to find Richard: I have a distinct memory of trying to explain to him about the soap dish, and a memory that I was both very lucid and completely out of control: I could hear that my words did not make sense, and I even told Richard that I knew I was not making sense. That’s the last thing I remember clearly. There is a vague blur of being in an ambulance, the kindly paramedic asking me to touch my nose and then his finger: struggling to do this without concentrating very hard. I remember that the world was drenched in beautiful colors. I might remember being wheeled into the Kings College Hospital ED – or perhaps I only think I do. Much later, Richard was able to tell me that I’d suffered a grand mal seizure in the bedroom, that I’d nearly bitten his finger off, that after rousing from the coma-like finale, I’d babbled syllables that made absolutely no sense. After the ambulance ride, being unloaded from the wheelchair to a bed in the ED, I have a clear memory of saying, “Oh God, it’s happening again.”
Apparently, I then suffered a second seizure, but the next day is a total blank. After the seizures were controlled, Richard says I was sent for a head CT scan, cloistered in the HDU and given a drip of magnesium sulphate. My blood pressure was sky-high. My hands and arms sprouted cannulas; I was catheterized. Richard says I was aware during a lot of this, but amnesia has partially wiped my memory. I can’t quite recall when I came around. He says I would be speaking to him, and then I’d just dwindle away for minutes, forgetting that I was speaking. It was very difficult to find words, to formulate sentences. At one point I remembered that I had a newborn baby, and there he was, sleeping in the plastic bassinet next to my bed. A never-ending series of midwives, day and night, helped me change the baby and put him to my breast, or gave him formula when I was unable. I was so out of it that it didn’t even occur to me to ask anyone what was wrong with me, and nobody was telling me either, so that was fine. The worst times were when Richard went home, leaving me alone except for the night shift – who were kind, but very busy and seldom around. The neon cross on the Sir Giles Gilbert Scott-designed Salvation Army building, visible from my window, at first was comforting, but eventually seemed like an outpost in the middle of nowhere in South London and only reminded me of the incredible loneliness of those long nights.
The most memorable things about that transition from oblivion to reality were the visual disturbances. I was no longer blind, but the light show was spectacular. I was aware enough now to know that it was not real, but a few times I had to ask Richard if what I was seeing was an illusion. Parts of objects, outlines in particular, would occasionally flash like lightning. Every white space – the walls, the ceiling, the back of the hospital bed – would gradually fill up with evenly spaced red polka dots after each blink, like a Bridget Riley painting. Always dots, always red. But dark spaces, and the black universe behind my closed eyes, would become populated with the outline of interlocking green hexagons, very reminiscent of an epithelial tissue seen from a birds’ eye view, the sort of image I’d seen hundreds of time in my previous lab. Sometimes I’d see neon-like squiggles or lines. I was confused at that point, thinking it was a side-effect of the drugs. But it wasn’t: the drugs were struggling to cure me of the visions.
By the time I was taken down for the MRI, I was more or less fully coherent. As I lay in the cold, noisy tube, fighting against the panic of claustrophobia, I allowed the green hexagons to soothe me: at least they were familiar by now. The scan brought a diagnosis, and finally the doctors were telling me why I was there. I had suffered from eclampsia a few days after the birth, having had no warning signs beforehand – this is vanishingly rare (so rare that later, my GP would refuse to follow me up, declaring himself not qualified). At every antenatal appointment, my blood pressure had been normal with no sign of protein in my urine – the tell-tale signs of pre-eclampsia, a forerunner to this life-threatening complication of pregnancy. But my affliction had struck out of the blue. The resulting hypertension had caused not only the classic seizures, but had then stimulated my brain to swell – the posterior part, where the occipital lobe lies: the center of the brain that controls vision. Posterior Reversible Encephalopathy Syndrome: PRES for short, revealed by telltale patches of white on the brain scan.
Reversible. Thank God for that.
I wondered many things, and still do. Would I have died if Richard had not come home from shopping when he did that morning – would an hour later have spelled my end? Why did I develop eclampsia in the first place, without the pre- bit, and so many days after delivering? Why weren’t the doctors more concerned about my maternal age at the time, and why hadn’t they put that together with the fact that I’d reported the worst headache of my life, lingering 36 hours after the birth, coupled to a few really high blood pressure readings as I lay in recovery?
These are all important questions. But, scientist that I am, what I really want to know most of all is: why were my visual disturbances so uniform? Why the red dots, the green hexagons? Does everyone with PRES see these, or does each individual have his or her own special patterns for light and dark areas of vision? Did I see green hexagons because of some array of cells on my retina, somehow reverse-visualized – or was this pattern emblazoned onto some memory bank after years of looking at immunofluorescence images of epithelia in my previous lab? Do we know anything at all about these visions? And what does it say about the true reality of our environment, when something seemingly so subtle in the brain can alter it so completely?
I’m better now. I think I’ve made a full recovery. Sometimes I still search for words or the wrong one comes out of my mouth – but this could easily be nothing more sinister than new-mother sleep-deprivation taking its toll. I am left acutely grateful for my life, for my intellect, for my family, for my sense of reality being intact. Because there is a fine line between that and oblivion.
Jenny, thanks for sharing. What a terrifying experience and I’m so glad you’ve come through still with the detachment to discuss what happened. I hope there aren’t accompanying nightmares as well. As a migraine (with aura) sufferer myself I have often wondered about the lights and visual disturbances. They are very characteristic but nothing like as regular shapes as you describe. Indeed, I would find them impossible to describe but they always make my heart sink when they appear. But in migraine, as far as I know, there is still no clear cause. Perhaps some medic can explain all the chemical changes that accompnay the blood pressure rocketing, that is associated with PRES.
It’s the sudden and unexpected rise in blood pressure that’s the worry – the particular visual symptoms are secondary. It’s a worry your GP didn’t seek to follow this up. Shouldn’t the GP have referred you to a specialist? I suspect you might need to have some follow-up if, say, there is an underlying condition that rose to the surface only under the extreme stresses of pregnancy.
Cripes. It sounds very frightening, though you were borne along and thankfully not always aware. Poor Richard must have been beside himself with worry. Glad you’re all OK now.
Thank you, Athene. Auras are indeed difficult to describe – but mine looks almost exactly like the fourth picture in Wikipedia! http://en.wikipedia.org/wiki/File:Scintillating_scotoma.gif
I was living in dread of my first migraine after the attack, afraid I wouldn’t be able to distinguish it from what happened before. But I’ve had two since and they were reassuringly different.
I am not surprised that people in the past mistook auras for messages from God, like Hildegard of Bingen.
Henry – sorry for the confusion. The GP was only saying that he wasn’t qualified to care for me after I returned from hospital – all I needed was daily BP monitoring, but he refused. Fortunately I was being looked after quite well by my OB consultant and his hypertension colleagues at St Tommy’s. In fact I got more time from them then I ever have from the NHS in my life. They were brilliant.
Thank you, Frank. If my position had been reversed with Richard’s, I’m not sure how I would have coped. He was a rock.
Glad it’s being looked after. Keep tabs on that blood pressure. Mind you, I only have to walk past my GP surgery these days for someone to chase after me with a rampant sphygmomanometer. They’re like that in Norfolk. Sphygmomanometers I mean.
I am still concerned that Jenny had a blinding headache and an elevated BP while in the maternity unit at St Thomas’, before the initial discharge. That should have sounded alarm bells.
Henry, I bought a small Omron device and was taking it twice daily for the longest time. Was useful because I was able to tell when the beta blockers needed to be discontinued because the pressure was too low. I think it’s a mark of my recovery that I’m no longer obsessing about checking it so often.
I’m glad I’ve seen you since this happened so I know you’re okay, because this sounds SO scary.
Well, at least the visions were pretty …
… but still, that is such a scary experience. I am glad you are still here to tell the tale.
If you are wondering why the combination of headache and high blood pressure was not picked up, this book might help:
http://www.amazon.co.uk/Every-Patient-Tells-Story-Mysteries/dp/0767922476
I am happy to send you my copy.
It’s by the doctor who consulted on House MD, and she explores how hard diagnosis is, and what gets missed why. A fascinating read.
So glad to hear you’re recovering/recovered, Jenny. Can’t imagine how terrifying that would have been for you, and for Richard with you and a new baby to worry about. Well, perhaps as a parent I can half imagine it, and that is scary enough.
Re the possible ‘miss’ pre-discharge, I’d guess it is largely the sheer rarity of what you had. I used to work on ion transport in placental epithelium on and off for a few years, so went to lots of seminars on placental biology and one or two on pre-eclampsia, and I don’t remember ever hearing you could get post-partum pre-eclampsia. The general line in the research these days is that pre-eclampsia has something to do with the placenta, and of course post-delivery there’s no placenta left. Having said that, if anyone SHOULD be well aware of post-partum pre-eclampsia, it should be the Obstetrics crew.
Thinking about your symptoms, I’d surmise a headache and the odd high BP reading, though they are on the symptom list for pre-eclampsia, might not be that unusual post-delivery. Mothers have often been treated pharmacologically with this or that (pitocin, pain meds, ergometrine), any/all of which could add to the general, er, ‘physiological uproar’. And of course, with you being imminently going home with a new (and your first) baby, stress would inevitably suggest itself as a reason for the high BP reading. Ditto for the headache, I’d guess, esp if you have a migraine history.
We routinely teach medical students ‘When you hear hoofbeats, think horses, not zebras’ , i.e. the prosaic explanations are much more likely than the ‘House’-style hen’s teeth-type ones. Add in no elevated BP or proteinuria at any point pre-delivery (so no signs of pre-eclampsia) and I’d guess attributing your symptoms to something rare but malign would be a stretch, absent very definite ‘red flags’. Plus, most new parents are desperate to take the baby home from hospital and get started on some kind of routine (I know we were). I’m sure that is also in the minds of the obstetrics folk, and mitigates against keeping new mothers in longer just on a very small off-chance of something sinister.
Anyway, hope the three of you are settling down to enjoy Christmas together.
That sounds horrendous, even if you weren’t fully aware of what was happening: I’m glad you’re well enough now to write about it.
The things you saw reminded me of a great talk I heard once about a mathematical neuroscience project that aimed to explain certain common families of hallucination. The associated paper has some promising images, but the models don’t seem detailled or person-specific enough to explain the particular colours and patterns you saw.
Oh no Jenny, that sounds frightening!! Having had a (thankfully light) stroke and a case of rather impressive hypertensive crisis in the family (the former a long time ago, the latter in the last few years) makes reading your experience particularly scary. It also reminded me of this TED talk, which I think is really impressive.
Maria – the book sounds fascinating – thanks for the tip.
Austin…I know diagnoses are not straightforward and they want to clear their beds…but, really, peri-partum high blood pressure should have been a red flag. And diagnosis would take 30 seconds and would cost less than 1p (just run a dipstick to check for protein in my urine). I wish I’d thought of it myself – to be honest I was guessing that the headache was from the spinal, so I was distracted along that hypothesis. And I didn’t know you could get eclampsia after delivering the placenta – but the docs and nurses would have.
Mark, thanks for that paper, I’m going to take a look! Ditto Steffi, the TED talk.
Hi Jenny
Yes, not dipping the urine again sounds like a definite miss under the circumstances. Esp as I’m guessing that (given your *Ahem* age *Ahem* and that is was your first pregnancy) you must have been classed ‘High Risk Management’ throughout…?
It also shows the importance of standard/routine checks, something I try to drum into nursing and medical students. Anita tells me one of the bugbears of hospital medicine in her time was checks being rushed, or not done. Of course, chronic under-staffing often plays a part there.
Blood pressure is an interesting one. There’s apparently a discussion of how often they actually do your BP at booking (i.e. first pre-natal app’t), and how early that is in pregnancy. If it’s left a bit late, or not done at that app’t, then the first BP they take may be well into pregnancy and already raised… so then later on you end up comparing back to a ‘false baseline’, which makes it easier to miss a ‘real’ raised BP. Of course, if the reading is really sky-high then that doesn’t apply.
Another place you meet this ‘false baseline’ problem is with asthmatics measuring (e.g.) peak flow. If the first measurement is done with some airway obstruction present, you don’t know what that patient’s ‘healthy’ value really is, and so possibly don’t know the true % reduction e.g. during an attack.
Near-death experiences do change you for the rest of your life. I am so glad it was only near, and wish it hadn’t even been that near.
Oliver Sacks has written about his migraines (that was hyperlinked) and, in particular, about his visual auras. Mine only involve nausea, dizziness; some light aversion and great pain. I doubt you’ll be reading much sustained material in the near future, but when you will be able to again, give Sacks a whirl. I wondered why I hadn’t heard much from you, lately!
Bravo, Richard, too.
I’m so, so glad you’re all right — for all of you. My God. And I’m glad you wrote this. I’d like to see it get wider circulation and republication.
Your mind goes first to neuroscience; mine goes to public health and advertising: why don’t more people hear about this as a complication of childbirth? Why isn’t it simple and cheap to get small emergency-call devices? Even if the parent’s fine, an emergency involving babies and small children can make it difficult to get to and use a phone, and if only one parent’s home, even a toddler ought to be able to call for help.
This part worried me especially: “Why weren’t the doctors more concerned about my maternal age at the time, and why hadn’t they put that together with the fact that I’d reported the worst headache of my life, lingering 36 hours after the birth, coupled to a few really high blood pressure readings as I lay in recovery?” Underscores the need for public ed — know these warning signs and how to react — because sometimes you do have to stab the medical machine to make it go, but first you have to know there’s a reason to do it.
Anyway. Very very glad you’re all right now. Will be calming down all afternoon.
Add me to the list of those who didn’t know that post-partum eclampsia even existed. Your story is terrifying… glad to hear things have stabilized.
I had a colleague who suffered from mild aphasia – similar to what you describe, hunting for a word from time to time – as a result of what was probably a small aneurysm, but I think remained undiagnosed. She would have been in her mid-30’s at the time I think. No long-term effects as far as I know.
And good on rpg – “a rock”. No higher praise.
Mark: I’ve just had a look at that paper. My hexagon hallucination is there! Figure 1b, “Honeycomb
hallucination generated by marijuana.” Honestly, I didn’t inhale, but…wow. Looks like it’s all down to the brain structures affected. Very, very cool.
Wow.
I’m so glad you’re OK now – I was relieved to read the “reversible” part.
You’re actually the second blog friend of mine to have a terrifying post-partum event recently. I recommended Jill Bolte Taylor’s “My Stroke of Insight” (the book, haven’t seen the TED talk yet) to Alyssa and would recommend it to you, too – it really helped us all understand what was going on when my MIL had an aneurysm and subsequent stroke last year.
Take care xx