Epilepsy

My seizures started a few weeks after I was discharged from hospital, around April 2014. At first it didn’t occur to me what they were, until they started recurring in exactly the same manner and at exactly the same time each month. So I made an educated medical guess what they were (temporal lobe seizures), told my team (and struggled to convince them I wasn’t over interpreting things) and eventually had an EEG done in December 2014. I wrote a post about my seizures; check it out here.

But that was normal. So I thought that was the end of that.

However, the new year came and went and by mid-January 2015 I had had 2 more since my EEG. In all honesty, I didn’t really expect the EEG to highlight anything. After all, I didn’t have a seizure during the EEG, so it wouldn’t make sense to have an abnormal EEG anyway. Half a year passed by and I was still having them at the frequency of roughly once per month and at some point in June 2015, a letter fell through the letterbox informing me I had an appointment with a neurologist at an epilepsy clinic.

Finally. Perhaps now I could get a confirmation (or not) of my suspicions. Granted, being seen by a neurologist involved a lot of work – I had a 10 page questionnaire to fill out that seemed more like applying for a visa than explaining about my seizures. The day approached and I went with my boyfriend, so I could have an external memory of the consultation, just in case. I presented my questionnaire, gave my history, and met with the very concise response of “Yes. It’s quite obvious that you have epilepsy.”

I knew it!!

But as with the majority of my story, I’m often right about my own diagnoses… and this is often a bad thing. We then spent a while discussing treatment options and future plans, the conclusion of which was: Tell the DVLA, start on lamotrigine and see where we go from there.

I’m writing this about 2 months after my diagnosis, and I’m pleasantly surprised to say that I have had relatively few side effects from starting my anti-epileptics. I’m still in the process of titrating the dose up to what it’s meant to be, and everytime the dose increases slightly I get a small side effect for a few days… But thankfully it fades. The best part is, I haven’t had a seizure since the 6th of June, 2015. Only got until the 6th of June 2016 now until I get my licence back…

I think the weirdest part of this whole situation is not the condition. Sure, actually experiencing my seizures are very, very strange, overwhelming and rather trippy. I got used to them once I figured out what they were, however. The weirdest part for me is getting used to calling myself “epileptic”. Saying I have “epilepsy”. Something I never thought I would say, but then again I suppose I never expected that I would ever have to utter the phrase “I had a stroke” at this age. I suppose this is a recurring theme with illness – indeed, a lot of people I have spoken to about having an illness have agreed that one of the hardest parts is accepting that your idea of yourself has changed. That you cannot apply for research projects looking for “healthy volunteers” because… you’re not healthy anymore (okay maybe this point only applies to me). You have a chronic illness. You spend your whole life trying to figure out who you are, and when you have it figured out, it gets erased in an instant. I’ve said it before, but I feel this acceptance of your new self, your new status in your life is paramount to assisting recovery. You might not be able to change what happened to you, or what you went through, but you can change the way you deal with it.

Angiogram

So yet again I’ve taken a long hiatus from blogging – but generally that’s a good thing, as I’ve been so busy with enjoying life and getting back to things that complaining about it on my blog has taken a back seat!

At the request of several family members; here is an update on how my angiogram, which I was preparing for in my last post, went.

This angiogram took place on the 30th of December, in that odd period between Christmas and New Year that nobody really knows the purpose of. This wasn’t my first angio; it was actually my fourth. However this was the first one that I would be conscious for, and when you know you’re going to have a wire and tube inserted up the artery in your leg and threaded all the way into your brain, even an above average amount of insight doesn’t really help to calm the nerves, the anticipation and, most importantly, the curiosity.

The day approached. I was up bright and early, as I had to check in with the hospital at 8am. There was some initial confusion as to where to go – my letter had suggested I had to go to Outpatients, despite the fact that I would be an inpatient for a day. Eventually we were directed to a ward, and I was sad that it wasn’t my usual ward, Victor Horsley. Instead we were sent to, rather strangely, a ward emblazoned with “Nuffield Health, Queen Square Private Ward”. What? Thinking that we were going to have to move yet again, we entered the ward with some trepidation… only to discover that we were indeed expected in the private ward and my bed was waiting for me. What a pleasant surprise!

The private ward was plush; you truly do get what you pay for. Each bed had its own separate room, with a flatscreen TV, ensuite bathroom, wardrobe and… a MINI FRIDGE in the wardrobe! Interestingly, the bed in the private ward was exactly the same as the bed in the NHS ward. So whether you were prince or pauper, you still slept on the same mattress. I feel like there is some clever, significant saying I could make out of that but I’ll leave that to you guys to figure out. Having been on morning take before and having been the patient subjected to morning take, I knew the drill and patiently waited to have my obs done and be clerked in. An hour later, I was still waiting. And starving too, as I had to be nil by mouth from midnight. Eventually a nurse came to take my obs whilst a locum doctor from America clerked me in and took my blood. I ended up having to point out where my vein was and stabilise it, as she missed it first time and pierced through the vessel. Oh dear. Shortly after, the interventional radiologist that was going to do the procedure came to take consent from me… not only for the angiogram, but also to ask if I would be happy to do an MRI afterwards for a study he was doing. I instantly said yes, and tried to see if there was an opportunity to help. Sadly he missed the meaning of that and I only helped by contributing an image of my brain.

Yet more time passed, mostly interspersed with me napping, chatting to my boyfriend’s mom who had accompanied me or sending hospital/”omg private ward” selfies on snapchat. 12pm rolled around and I was taken downstairs to the theatres, and so the angiogram experience began. As I was taken into the theatre, I noticed on the wall the very same poster of the anatomy of the brain that I had stuck to my bedroom wall, which made me smile. My femoral artery was found (handily signposted by my scar from my previous angiograms), skin was prepped and local anaesthetic injected. Which, in hindsight, was the most painful/uncomfortable part of the whole procedure. I had requested some form of blanket as the theatre was quite cold and I had a fan heater blowing heat onto me underneath the sterile drapes. Which was amazing, until the local anaesthetic kicked in and I then had a cold triangle of skin; a very odd sensation. Satisfied that the patch of skin was numb, the catheter (4 french; roughly equivalent to 1.3mm) was inserted and threaded up my arterial tree. This again was an odd sensation; I could sort of feel it as a slight pressure in my common iliac, when it hit my abdominal aorta I could feel it less and once it went past my heart, I could feel absolutely nothing. Even though I could see the radiologist pushing and pulling quite forcefully at times, nothing could be felt. Eventually he reached my internal carotid and this is where the fun really started.

I had been warned, and read interesting stories, of the effects that the dye injected to visualise the vessels had on your brain. My handy “What to expect” booklet had told me of perhaps seeing flashing lights, hearing strange sounds, tastes; and my doctor had said the same. He was going to warn me everytime he injected the dye, after which I had to hold my breath for the duration of the contrast and X-Ray. Much to my annoyance, the screens were sort of in my left peripheral vision, but I couldn’t see them properly unless if I turned my head. Which I wasn’t allowed to. I had to stare straight up at the white box that was the tail end of the X-ray machine. But this white box provided the perfect blank canvas on which my visions grew. The first time I was so taken aback by what had appeared in front of me that I didn’t have time to analyse it before it ended. “Wow,” I told the doctor, “That is certainly an experience.” He replied saying he had heard similarly from other patients, and almost wished he could experience it too. The next time he injected, I was prepared.

It started in the center of my vision; a white glowing square that grew until it reached the edges, then it faded out to be replaced by some white glowing, pulsating, branching structures growing from the peripherals of my vision and sprawled across back to the center. I say branch, but in all honesty my first though was I was somehow seeing my retinal blood vessel network. It was very organic; it looked like a tree in winter, like a network of vessels or a network of neurons. Whilst this was going on, it was accompanied by a soundtrack that filled my head; a crackling, popping sound and sensation very similar to having too much popping candy in your mouth… but it was in my BRAIN!

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These effects happened every time dye was injected into that artery, but once the target artery was changed, the effects changed. On one injection, exactly half of my face became a temporary radiator, which changed to the other side of my face when the same artery on the other side was injected. Then a new artery was selected and I had a strange, almost metallic taste going down the back of my tongue and throat. After a few more injections the team were happy. I tried to ask them as many questions as possible but I had to hold my breath so many times I ended up staying silent. As they were wheeling me out of the theatre I manage to get a glimpse of the screens and saw Ralph in all its twisty glory. I was astounded; it was like I had been blind previously and now I could see. Ralph’s nidus was suddenly there, in full HD glory. It was like watching a YouTube video in 1080p instead of 240p resolution.

When I was in recovery and my wound was being compressed, Dr Rennie, the wonderful interventional radiologist who did my embolisation back in June, came to say hi. We discussed a lot; mostly neuroanatomy, specifically MY neuroanatomy. He was happy with the angio today; it turns out the reason why previous angio’s haven’t been clear was because the varix was occluding the main nidus and casting a shadow on it. But now that my AVM was more visible, just how complicated it really was was also more visible. It was previously thought that my AVM had one feeding artery, and one draining vein. Like most AVMs did. It turns out, Ralph has not one, but THREE feeding arteries, and was starting to recruit dural blood vessels to drain into. Which, in summary, meant that Ralph was still pretty complicated, and we still had to watch and wait.

After having a very quick MRI for the study, I was taken back to the ward. On the way back I expressed concern about missing lunch, to which a nurse assured me that seeing as I was on the private ward, if I missed lunch they would cook a new one from scratch for me. Thankfully I hadn’t missed lunch and was presented with a posh plate of tomato soup, bangers and mash, and sticky toffee pudding under…. a silver dome. Yep, my ward had silver service. And asking for some water resulted in me being given a monogrammed glass carafe of some fancy alpine, volcano-filtered still water, instead of the plastic jug of tap water that I was used to. I could see why people paid for private now – if not for the healthcare, then for the hotel like service and food!IMG_1117IMG_1116

 

After lunch amongst my visitors was Mr Shieff, who came to check in and update me with what Dr Rennie had already said. He mentioned that the gamma knife team would be looking at these images and come to a decision. They haven’t. I’m typing this on 18/02/15, almost 2 months later, and so far the decision has been made to give me another MRI scan.

Eventually I was discharged around 7pm. Overall the angiogram experience had been more fascinating than anything. Possibly the most irritating aspect was the part where I had to lie completely flat for 6 hours after my angiogram, to minimise complications of the wound site. That doesn’t sound bad on the surface, but try drinking tea through a straw, lying flat. And if you needed the toilet…. well, you just learn to have a very strong bladder. All those weeks spent holding my bladder on Duke of Edinburgh expeditions did come in handy after all!

Neuropsychology

The past few months have been a great interruption in uni. Really great. I’ve loved lying around, unable to do anything due to the extreme fatigue that comes with having a brain injury, being completely overwhelmed and watching my brain shut down by seemingly innocuous stimuli such as rush hour on the tube and just feeling quite frustrated at not being able to complete my degree. But as September rolled into October, I started to feel stronger, less tired, less foggy and more determined to get myself back to my old life. With a few modifications for Ralph, of course, but as close to my old life as possible.

The first step was work. I had held a part time job as an events first aider for the past three years which made going back to work gradually very easy, as I sort of chose how much per month I wanted to work. My first shift back was exhilarating. My mind was constantly split between “am I truly ready to jump back into life and work” and “Oh my word, I’m so happy to finally get on track again!” My shift partner was my usual partner in crime, which helped massively with the first thought. Since then I have been working increasingly more, whilst feeling proud of myself for I had had a huge haemorrhagic stroke 8 months ago and nobody could tell! It felt great to gain some independence back and, importantly, get paid and have some form of income. My financial state up until now had been dire, as apparently when you get ill and take a year out there’s not much help you can get financially. I was ineligible for Student Finance loans as I had already received it for four years. I was ineligible for NHS bursary as I wasn’t in clinics. And as an “external interrupted student” I was both a student and not a student and thus ineligible for help from my university. I had many long meetings with student advisors, the conclusion of which was essentially “Sorry. Can’t help you. Move back with your parents.” But I couldn’t move back with my parents; they didn’t live in London which meant any time I had a hospital appointment it would cost me about £40 in travel. Not only that, but the closest neurosurgical hospital to them was a good 2 hour drive away – so if Ralph decided to rupture again, my chances would be very slim compared to the 20 minute journey I would have to my hospital now. After having several doors shut in my face and being told “Sorry, we can’t help you”, it felt amazing to be able to start to support and help myself at least financially.

Anyway, I digress. Work was going well, so that was one aspect of my old life I was clawing back. The other, however – the student part – was a lot more difficult. When I had my stroke in March, everybody agreed I would be in no state to take my exams in May, so they were postponed till August. When I had my surgery in June, everybody agreed I would be in no state to take my exams in August, so they were postponed till the following May – leaving me with having to take a year’s break from my studies. I had already decided I would study slowly and thoroughly from September onwards for these May exams, but I was met with several mental and cognitive barricades. I had already attended all of my lectures, done all of my coursework – all I had left were my exams. And I had very good notes from the previous year. But every time I looked at the page, even though I saw the physical scrawl of my notes across the page, I had absolutely no memory whatsoever of writing it. Or being there. Or knowing the information. It’s impossible to describe the frustration of having information in front of you that you once knew so well, joked about with peers so often, made geeky references to on a daily basis…. and now instead have a black void in your memory where it once was. I tried to change this by revising every day, but suddenly studying had become laborious and inefficient. I mean, studying was never going to be easy, especially when it was neuroscience, but trying to study after having a brain haemorrhage was near impossible. Mentally, it felt like trying to swim through concrete. Imagine your life; starting at primary school and trying to figure out abstract learning methods based on the simplistic tasks you were given. Then you get to high school and the level is so much higher and harder, so you adapt. Then you get to 6th form and you do the same. Then you get to university and you do it one more time and by the end of your degree (or at least, halfway through mine seeing as mine isn’t a 3 year degree), you get to a point where you feel you have refined and streamlined your learning methods and style. But then something happens and mentally you go back to your primary school level of learning, whilst dealing with university level knowledge. That’s how revising felt. I couldn’t concentrate for longer than 10 minutes, I couldn’t focus, I was constantly getting distracted and it took me about a week just to go through one, one hour, lecture.

Obviously this was not conducive to my studies. I tried different tactics, the one that seemed to work the best being having 10 minutes “on” and 5 minutes “off” – allowing myself to have that 5 minute break seemed to stop me from procrastinating throughout. Whilst I’m sure most students can relate to the demon that is procrastination, this was on a whole other level. When my nurse called me a few weeks ago I filled her in on everything that had happened (including my apparent seizures, which will be covered in another post) and she spent some time assuring me that I shouldn’t try and rush back into studying; it was natural to be experiencing this. Nonetheless, she referred me to the neuropsychology department for an assessment. I got the call the next day to arrange an appointment, which was on the 20th of November.

Yet again, I approached this hospital appointment with a mixture of excitement and wonder. I had briefly studied neuropsychology in my 2nd year; even written an essay about it. I met up with a good friend for a catch up, who actually worked as a neuropsychologist, and we discussed my various issues and the upcoming appointment with interest. For those who haven’t googled it or figured it out yet;

Neuropsychology: the study of the relationship between behaviour, emotion, and cognition on the one hand, and brain function on the other.

Basically, it was the study of how my cognitive processes – my thinking, perception, recognition, processing, memory, attention, focus and all other sorts of stuff – have been affected by what happened to my poor brain. I already suspected I had some mild form of prosopagnosia (inability to recognise faces) and dysphasia (impairment of language processing… like always having something on the tip of your tongue). But I had no idea what was going on with my memory.

I arrived ready for my 9am appointment, a bit apprehensive that the early (for me) start would cloud my test scores somehow. After giving a brief history to the neuropsychologist the tests commenced. There were tests involving words, tests involving pictures, tests involving faces, tests involving numbers, tests involving shapes… there were a lot of tests. It will take too long to list them all, but I was incredibly mentally fatigued at the end… which led to physical fatigue. I got the opportunity to rest as often as I wanted, which allowed me to analyse the purpose of each test. Things that I remember struggling with were:

  • Visual recognition; I was shown a set of about 15 photographs, one per page, and told to remember them. Then I was shown 3 similar photographs per page and had to point to the one I had been shown previously.
  • Facial recognition: On the same theme as above, I was shown about 15 faces, one per page. Then shown two similar faces per page and had to point out which one I had seen. I don’t think I got any of these right!
  • Object recognition/naming (?): Different items, animals, objects etc. were shown to me and I simply had to say what it was. What shocked me was for about 40% of the items, I knew exactly what it was – I could describe in a lot of detail what they were/what they were used for, but I just simply couldn’t name it. This is known as “anomia” I believe!

These were just things that I had noticed. But apparently the neuropsychologist wasn’t too bothered by this, as at the end she told me that my main issue was actually my attention. My actual memory was functioning fine, it was just that I couldn’t pay attention to things to commit them to memory – so they were never there for me to remember in the first place. I will be going back on the 8th of December to work through these issues – I’ll try and remember as much as I can, as I’m pretty sure I know a lot of students that could use these techniques too! 😉

I suppose in a way I’ve been very lucky and unlucky. Seeing as my stroke was so specifically localised to my temporal lobe, it didn’t affect my physical capabilities (mostly controlled in the parietal lobe) apart from the occasional fatigue. But it has certainly affected my cognitive processes. It’s such a hidden deficit that on the outside, I appear to be perfectly normal and healthy, just like how I was before. I was warned that going back to studying would be hard, but trying to claw back my mind from what it used to be is one of the hardest things I’ve had to deal with. I don’t even know if this is going to be my new normal or if I’ll be able to improve it. Hopefully with the help of the neuropsych team it will be the latter, but only time will tell!

Seizures

I’ve been away from blogging for a while thanks to exams and finishing my BSc – finally! So let’s come back with a big topic: Let’s talk about seizures.

When people hear the word “seizure”, most will think of the dramatic “fitting” style seizure, where the patient loses all motor control and succumbs to violent, jerking movements.

I’ve had seizures. I think. And not once have I lost any control of my limbs. Chances are, many of you reading have had small seizures too, as that phenomenon of deja vu? That’s actually a mild temporal lobe seizure.

Sadly (for medical students who have to learn the difference), it’s not as black and white as the above – there are many, many different types of seizures which present in many, many different ways. Technically the definition of a seizure is:

“Uncontrolled electrical activity in the brain, which may produce a physical convulsion, minor physical signs, thought disturbances, or a combination of symptoms”

They can present in many different ways, depending on where the electrical activity starts. If the electrical activity starts in the part of the brain that controls motor function, well, then you get the stereotyped jerking tonic clonic seizure. If it starts in a different part, the motor system might not be involved.

Since my stroke last year, I have noticed myself going through something strange about once a month. The pattern is always the same. It starts with an almost nauseous, warm sensation in my abdomen that rises up my body. As it gets to my throat a sequence of memories start playing in my head – a sequence of all consuming, overwhelming and overpowering memories that I can neither stop nor change. I don’t even know if they’re my own memories, something my mind has created or something I saw in a film or TV show. What even is a memory? Whilst they’re playing, I’m not quite sure if what’s going on in my head is reality, or if real life, is reality. It’s very odd and very disconcerting to say the least. I think the easiest analogy to make is to say it’s like deja vu, that lasts for several minutes. Whilst it’s happening, I wouldn’t be able to say what’s going through my head – and afterwards I wouldn’t be able to remember what went through my head either. But I can hold a conversation throughout – unless if I said something was happening, there would be no other indication. After it’s over I do tend to become rather quiet, a little bit disorientated and withdrawn, but nothing major.

When it first started happening, I thought major of it. It started the month after I was discharged, and it just made me feel quite uncomfortable, but I was back to normal soon enough after it ended. It wasn’t until it started happening more regularly that I started keeping a symptom diary and noticed it tended to happen once a month. At some point last summer I was reading through old university notes (as you do) and came across my notes for temporal lobe seizures. My “funny feelings” ticked every box. The matching of descriptions was uncanny. So off to my nurse I went, armed with my new insight.

If you're a fan of the school dinner lady look, you'll be a fan of EEGs

If you’re a fan of the school dinner lady look, you’ll be a fan of EEGs

That was the end of summer last year. Since then, I have had an EEG (which again, was interesting to see from a patient’s perspective – but so annoying trying to get the glue used for the electrodes out afterwards!). And that’s about it. The EEG showed nothing abnormal… but as I pointed out to the technician, I didn’t have a “seizure” during the EEG so of course it would appear normal. My neurosurgeon seems quite hesitant to investigate this; I get the impression that he thinks I’m overthinking symptoms, perhaps as a result of being a med student and having too much insight. However my nurse does agree that this should probably be followed up and I’m being referred to a neurologist. I really just want somebody to tell me what on earth this is, because it certainly wasn’t there before my stroke. However, I really don’t want to be diagnosed with temporal lobe epilepsy. Even though the actual “seizures” don’t bother me, don’t affect my awareness or my motor function, a diagnosis like that would probably strip me of my driving license and subject me to a lifetime of anti-epileptic medication, neither of which are particularly appealing to me. I guess for now, like with everything, I need to wait and see what happens.

Outpatients

As a student, I had been to outpatient clinics a lot. “I’ve got outpatients today” or “Sorry, got stuck with a long list at outpatients” were common messages sent between myself and my peers. Outpatient clinics, or OPC, were a great chance for us medical students to see the long term care and follow up side of medicine. Sometimes we even had the opportunity to take some responsibility and take a history and examination of half of the list for the consultant, then present the patient to them to both save time (or take up time, depending on how good/bad you were) and have a taste of what being qualified would be like. I was pretty excited when the letter came through for my first outpatients appointment, as this hopefully meant that some further plans for my treatment would be made and I could feel like I had a goal again instead of aimlessly floating through recovery. My OPC was on the 1st of July. A week previously, I had come in for a 2 week post-op MRI scan to see how Ralph was behaving after being given a good dose of superglue. As I knew from experience on the other side, outpatient appointments often had a specific goal from the medical side (i.e. discussing results, following up on treatment, seeing how the patient is coping etc.) and some non-specific goals from the patient side (i.e. what’s going on, what’s going to happen, why does this happen, or even just… I’m feeling great). In the run up to my OPC I found myself theorizing the points of discussion that my consultant would have:

  • How are you feeling
  • Here are the results from the scan
  • Next plan of action

I, on the other hand, had a lot more points to discuss:

  • How I was feeling
  • What were the results from the scan?
  • What’s the next plan of action
  • Can I write a case report on myself
  • What should I do about my degree(s)
  • When can I start doing exercise/studying/working
  • Could I get a hospital note to give to uni

Since March I had been faced with a dilemma. During the academic year of 2013/14 I was doing an intercalated BSc in (ironically) neuroscience, which meant I had taken a year off from my medical degree to do another degree. Ralph ruptured the day after my final day of timetabled sessions (22nd March), which meant all I had left to do of my degree was finish my dissertation (due for mid-April) and write my exams (in May). Obviously, as one would expect, having a brain haemorrhage left me a bit worse for wear in terms of academia so my exams and dissertation were postponed until the August period. I was now completely torn. Should I take my exams in August (which would mean I would have to start revising as soon as I got back from the clinic), therefore finishing my BSc in August so I could go back to medicine in September? Going back in September would mean starting the penultimate year of my medical degree, which was notorious for being one of the most intense years mentally and physically. Should I drop the BSc altogether and just go back to medicine in September? Or should I postpone my exams again until May 2015, thus deferring a year and going back to medicine in September 2015? This was a great source of upset and mental anguish for me. I desperately wanted to go back to med in September, to be reunited with my peers and go back to what I felt I was stronger at. My brain was so exhausted from even just simple daily activities that even the thought of going through the process of revision, exam prep and writing the exams put me on the verge of tears. Dropping my BSc was very, very tempting. But then again at the same time it felt like a waste to have gone through all the hours of lectures and lab work, the thousands of words that was put into coursework, presentations, journal clubs and posters and for nothing to come out of it other than an unusually detailed knowledge of vesicles. Fellow iBSc Neuro people that did Cells & Systems, you’ll understand that last sentence far too well.

Due to my extreme lack of short term memory, and just because I wanted the company, I asked my boyfriend to accompany me – it would also be useful to have somebody else’s perspective (i.e. a non-medic) of how the clinic went. The day came and we eagerly got to the clinic early, then ended up having to wait about 45 minutes anyway. Not that this was unexpected to me; going through the OPC process on the medical side showed me that patients and doctors almost always overran their time slot. When I was eventually called, we were both surprised to see it was not my consultant that had called me but instead his registrar. We very quickly ticked off the first three points – I was feeling better, almost feeling “pre-morbidly” normal (“pre-morbid” is the term used to refer to the patient’s state before the health incident happened). The results from the scan were “very good” and there was a “definite change” despite the post-op MRI scan being only 2 weeks post-op. And the next plan for me was to have a follow up MRI/angiogram in September, then a possible further embolisation based on what the follow up imaging showed.

So overall, the answers to the main points seems pretty positive. Unfortunately I had less positive feedback on the other points. It was decided that there was no point in me writing a case report on myself as there would be no “learning point” in my case as, even though my condition is unusual, it apparently wasn’t rare enough to be worth writing about. I was also advised not to work or study until at least after the results from my follow up scans in September. Which, unfortunately, meant that all of my mental anguish about to BSc or not to BSc was dealt with in one fell swoop. Under doctor’s orders, I had to fill out all the relevant paperwork and admin to request to take a year out, and take my BSc exams in May 2015. I will admit: I did cry quite a bit over having to do this. Even though logically I knew it would be the best thing for my health to take a year out, this did mean that I wouldn’t be able to graduate with my cohort that I had started university with and I would have to get to know a completely new year group. I suppose in the grand scheme of things this isn’t too important, but I now had 2 months ahead of me whilst I was waiting for my MRI where I wasn’t supposed to study, work, exercise or generally do much to keep my thoughts distracted from how much I was going to miss being with my cohort. It sucked. It still does.

As I am writing these blog posts on a delay of a few months, I have been given the wisdom of hindsight. And in hindsight, whilst I am still very sad at not being able to rejoin my year group, and I have had other repercussions involved with taking a year out, it was definitely the best decision. Only now at the beginning of October, 6 and a half months on from my stroke, am I beginning to truly feel like I’m starting to return to my pre-morbid state. Every time I think I am going back to “normal”, another month passes and I realise I wasn’t. I’m sure that this time next month I’ll look back at how energy-less I was now. Take home message from this blog post: Sometimes your doctors will make decisions for you that you won’t be happy with at first. It might take a few weeks, or even months in my case, for you to accept that decision or understand why it was made, but often it really is for the best, even if you just can’t see it yet.

Just a spoonful of sugar helps the medicine go down

12th of June 2014

Slowly, gradually, the senses of the world started coming back to me. It started with sound; the rhythmic “beep” of the monitors around me, the soft breathing of the patient asleep next to me, the occasional moan of pain from the other patient next to me. Then I started appreciating the clinical, sanitised smell of the ward, tinged slightly by the acrid smell of what must have been the contents of my catheter. As my consciousness slowly returned to me, I became aware of how cold the ward was, and how the woven blanket that covered me in my crinkled hospital gown provided an isolated pocket of warmth. Soon, soft lights began to blur through my eyelids. As I slowly opened my eyes to a darkened room, shimmering coloured lights danced around me – the lights of my vital signs on the monitors. “She’s awake,” a voice said, and some pale round shapes came into view. As I rubbed away the rest of my sleep from my eyes those shapes formed into the faces of my mom, my boyfriend and my boyfriend’s mom. I tried to speak but instead was met with a cracked tube of sandpaper in the place where my throat once was. It felt like it had been forced open for several hours… and as I woke up, I remembered that it was. Forcing an intubation tube (often the size for the average man) into my throat (smaller than that of the average man), had left it sore and dry, so I gestured to the water jug I saw next to my bed. After a few sips (read: half the jug) had gone down, I managed to communicate.

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Another beautiful tangle; check out all those wires!

I knew that I had been taken for my operation around 1pm. The rest of the details were lost in a hazy, anaesthetic-induced fog. I was now awake in this dark, cold room with familiar faces next to me and I started to tick off an internal checklist. Could  I move my arms and leg? Check. Could I talk? Just about, check. Did I know who was in front of me? Check. Did I know who I was? Check. Did I have stroke during the procedure? It seemed like that was a negative. Yay! I tried to listen as my family attempted to help with my disorientation, but I was still so tired that nothing really went in. Something about being in theatre for 3 hours, something about being in recovery for a few more hours whilst the anaesthetic wore off. Something about tea, something about the radiologist, something about how everybody was happy. I get the impression that I just mostly smiled and nodded, but soon I became painfully aware of how hungry I was. I hadn’t eaten since 4pm the previous day and if I had understood correctly, it was now 8pm. So I had gone about 28 hours without food! My family asked the nurses if I could have some food and they brought me a little snack box that had a sandwich, some biscuits and an apple. After devouring the food a bit more energy returned to me, but unfortunately my family were told to leave, as it was getting late, I was awake and the other patients in the recovery ward had to rest.

The next few hours that passed were painful, in the respect that I was now wide awake, unable to go back to sleep and by myself in the quiet recovery ward. As I had had a needle inserted into my femoral artery, I had to lie flat for at least 8 hours following the operation to allow the incision to heal and therefore not bleed out into my leg. Time was spent listening to the other patients sleep, or complain about the pain they were in. It was quite lonely, really. Eventually I managed to drift off, and woke the next morning, greeted by my team who explained that the operation went much better than they thought it would, and they think they managed to embolise about 30% of my AVM. Which was great! Talks were being made of moving me back to Victor Horsley now that I had recovered fully from the anaesthetic, which was done later that day. To my surprise I had been moved from the side room into one of the bays – but sadly not my usual middle bay. This time, I was in the bay at the end, which I soon found out meant that you got all meals much, much later than when in the other bays. Sometimes we wouldn’t get breakfast until about 10am, whereas on the other bay we had breakfast at 8:30am! My few days on the ward passed by uneventfully, marked only by the regular visits from nurses, my team and my family. As I had no obvious neurological deficits and I appeared to be stable, I was discharged on the Sunday – four days after I was admitted.

Once I had settled back in to my boyfriend’s house, life appeared to return to as normal as it could be when you were recovering from “brain surgery” (I was told I could officially call it that, cool or what?). Something kept bothering me though – the spoons in the house seemed to be perpetually soaked in sugar, as whenever I made myself a cup of tea it tasted sickeningly sweet. If you know me personally, you’ll know that I am a bit of a tea addict and I just can’t stand tea with sugar. But no matter how I made my tea, it always tasted sweet. I started noticing that everything else was sweet too. Even my saliva was sweet, after a certain time (usually 7pm). I realised that this must be a side effect of my embolisation. I had certainly heard of people having strange tastes or sensations following this procedure, but I didn’t realise it would manifest like this! I started craving the saltiest, most savoury foods possible. My diet morphed; I ended up eating mostly cheese, pizza, olives, crisps, nuts – anything that was satly. Unfortunately everything still tasted sweet. Ever had sweet cheddar cheese? I assure you; it’s weird. I guess to most people the feeling of having a constant sweet taste seems quite good on the surface, but in reality it became very frustrating! Thankfully that seemed to be the only major side effect. For the first week post-embolisation I was incredibly fatigued, sleeping for more hours of the day than I was awake. The entrance site in my leg also became bruised and painful, as did the site on my arm where I had an arterial line inserted (Note to self: Arterial Blood Gases/Arterial lines/anything arterial HURTS like crazy!). It got to the point where I struggled to use my left thumb as the arterial line had bruised and hurt so much. It all passed after a week, however the sweet taste remained. It wasn’t until about a month after my embolisation that my saliva started gradually returning to normal, allowing me to enjoy food and most importantly tea again. It was odd; I had a needle injecting superglue to block up the time bomb inside my brain. And the only side effect I had was this sweetness! No visual effects, no personality change, no memory loss – medicine is truly amazing. Whilst I was experiencing this very strange side effect I couldn’t help but think of this classic time and time again:

Hospital: round 2

Let’s talk about headaches. Everybody gets them, right? Harmless, right? Last year on my neurology rotation our consultant spent a long teaching session making sure we understood this seemingly innocuous symptom and my eyes were opened. At first I thought there were just headaches, and migraines… but there was so much more: Tension headache, cluster headache, ice pick headache, migraine, thunderclap headache… the list goes on. Each type of headache had its own specific nature of pain, duration, etc. – it was very specific. However, I soon got to know different types of headaches better than I would have liked. When Ralph ruptured in March, I distinctly recognised that I had suffered from a thunderclap headache (sudden onset, severe, “worst headache of my life” kinda thing)- there was absolutely no way mistaking that pain. But after being discharged I suffered from daily headaches of many different types. This probably had something to do with the fact that I still had a lot of blood in my brain (leading to raised intra-cranial pressure) – and my headaches were quite distinctly… raised ICP-y. By that I mean they were worse on waking, worse on coughing or moving my head and worse when I lay flat (hence the need to sleep upright). Over the course of time I started to learn the signs my body was giving me well, and what triggered my headaches. The physical pain was easy to deal with – I had been given both paracetamol and codeine when I was discharged to take when I needed it. What was difficult to deal with however, was the anxiety. Every time a headache happened, “Is this another bleed? Should I go to hospital?” would race through my mind and circle endlessly until the headache went away. It was so difficult to tell when a headache was serious enough to go to hospital and for a while, the anxiety and paranoia completely controlled me. I soon developed a sort of screening system – if the headache went away after paracetamol or after half an hour, it was okay. If not – monitor. On the 26th of May, I woke up with a headache. It got worse when I coughed or bent over. Which were two red flag symptoms – waking with a headache, and a headache that got worse on coughing. I waited half an hour to see if it improved, but instead it got worse and my neck started getting stiff. Uh oh. I also started feeling a bit nauseous. Double uh oh. I rushed to take some paracetamol and cyclizine (anti-sickness) and waited for that to kick in. Paracetamol didn’t help, so I took some codeine. Still nothing, and in addition to everything else I started being photophobic. Time to go to A&E again. 😦

The new way to treat a headache and photophobia

It was very interesting comparing all aspects of this hospital admission to the one I had previously. Thankfully, this time around I was far more lucid, aware and involved in my admission to A&E. Every step we took was punctuated by either my boyfriend telling me what it was like the first time round, or asking me if I remembered. As we entered the doors of the Royal Free A&E memories came flooding back of a similar journey we took almost exactly 2 months previously. I got flashbacks, mostly involving memories of vomiting (previous to my first admission, I had emetophobia – fear of vomiting – and now wondered if I had very mild PTSD from the experience of vomiting!), but also involving memories of the sheer amount of pain I was in. This time around the pain was present, but at least it was nowhere near the level of pain I had during my stroke. We went through the motions of explaining to the secretary what had happened, giving details but trying to stress the importance of the fact that I had had a bleed previously and what if I was currently going through another one right now. The waiting room was quite busy for a Monday afternoon, so my mother and my boyfriend’s mother flitted in and out, targeting the staff and emphasising the urgency of my case. I’m sure their pleas fell on deaf ears, but their efforts were admirable. I was seen about 2 hours after coming in and attempted to give my history to the triage nurse in a way that was as medically concise as possible, but unfortunately found myself having to explain to her what an AVM was. I was sent to have a CT scan, which was far more interesting now that I was aware of what was going on. Whilst I was waiting for the results to come back to us I had my blood taken and a cannula inserted by a nervous medical student clearly doing this for the first time, who I tried to reassure. A doctor came to clerk me and do neurological exams – again, I had to explain what an AVM was. A team came round to explain I was being transferred to NHNN (surprise surprise) because of my scans, which were unclear as to whether or not I had a bleed. It did however show midline shift of the ventricles (meaning there was too much extra fluid, i.e. blood, within the ventricles – enlarging them and pushing them across the midline). However this was seen on one of my previous scans so I wondered if the previous midline shift had just purely not settled down. Either way, I was being transported via ambulance to NHNN, Victor Horsley ward (yay!), and I found myself explaining to the paramedic what an AVM was. I was amazed at how little knowledge of AVMs other medical professionals had, having explained to three different staff what my condition was, reinforcing the rarity of it.

After an interesting but calm (no blue lights) journey my mother, the paramedic and I found ourselves waiting in the lobby area of NHNN for yet another wait. Somewhere along the line there had been some miscommunication between the Royal Free and NHNN. Rather critically, somebody had failed to tell the bed manager of Victor Horsley that I was being transferred there, so there was no bed available. Greaaaat. Well I was perfectly happy to stay in the bed from the ambulance, but somehow I thought the paramedics might need it. Eventually the bed situation was resolved and we made our way up to the ward, where I was greeted like an old friend with “Look who’s back!” or “Did you miss us?” or “Hello again!” by the nursing staff. My new bed was even in the same place, almost! Same bay as the last time, but the bed next to it. As my mom brought in my overnight bag that she had packed for me, I was handed some paperwork to fill out and some analgesia for the pain. My anxiety settled, now that I was in a safe place.

The next morning I was seen by my team, who were of course surprised to see me. I was meant to have an outpatients clinic with Mr Shieff in about 3 weeks’ time so I jokingly told him I missed him and came in early, but I don’t think that went down well. The team clerked me and asked the usual questions and did the usual exams, but for some reason were very persistent in clarifying whether or not I vomited. I was certain that if I hadn’t have taken the cyclizine I would have, but I suppose for the purpose of medical notes that was a grey area. The plan for me was to have an MRI/MRA, which would be much higher resolution than the CT scan I had at the Royal Free to fully determine whether or not I had a bleed. I was assured that even if the MRI concluded there was no new blood, it would be useful – I had an MRI as an outpatient one month previous to this, but that was slightly earlier than Mr Shieff had wanted, so he was pleased to have another one to compare the changes in my brain over time. Later that day the MRI was done (still haven’t got over the novelty of it – I had always wanted to know what it was like!) and I was returned to my ward. Back to my knitting!

I felt like a bit of a ward veteran, having had a previous stay and getting to know the rhythm and timetable of the ward:

  • 6am – 7am: Morning observations.
  • 8am – 10am (it varied): breakfast was served.
  • 10am: visiting hours began.
  • 10:30am: Lunch and dinner choices were made.
  • 11am: Observations.
  • 12pm – 1pm: Lunch was served.
  • 1pm – 2pm: Visitors were kicked out for “rest time” (afternoon nap – like primary school!).
  • 2pm: Visitors allowed back in.
  • 3pm: Observations.
  • 6pm (roughly): dinner was served. Observations.
  • 8pm: Visitors kicked out
  • 10pm: Observations, then lights out

The next few days were pretty much the same so I’ll summarise them here: MRI showed no bleed, but I was still symptomatic so it was suggested that my AVM was “leaking” blood that was enough to be apparent in me, but not enough to show up on imaging. I was kept in until I no longer needed to take paracetamol for the daily headaches I was having. I was left feeling guilty for two reasons: firstly, I was worried that I had wasted people’s time and NHS resources. What if it was just nothing and I was being overly paranoid? Was there any point in me coming in? I also felt bad for my cousin, who happened to be visiting London from Turkey – yes, the same one who sent me cupcakes the first time round! The very same week that I spent in hospital was the exact week that she was in London, and she ended up spending most of it with me in hospital. I felt awful. But it was amazing having her around as she found ways to make my stay more fun – like bringing me delicious food from the outside to have instead of my dreary hospital food. And as was what seemed to be the new tradition, she also bought me cupcakes!

The best medicine!

The best medicine!

Another, less serious, thought that circulated in my head during my stay: would I be discharged before the weekend? I presented to A&E on a Monday… and that Saturday was the night of my university Summer Ball, which I had been looking forwards to the whole year! All my friends from med school, who I hadn’t seen much of for the past two years (due to me doing clinics, then BSc and them doing BSc, then clinics) were going. And damnit, I had just bought the perfect dress the week previously (and spent far too much money on it)! The closer it got to the end of the week, the more frequently I asked the nurses if they thought I would be discharged by Friday. We even ended up talking about how I would do my hair, makeup and all other sorts of girly, ball-related chat. Friday loomed and, miraculously, I was discharged! Cinderella WILL go to the ball! But would Ralph let me…? Well that’s a whole other blog post…