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…



2 thoughts on “Hospital: round 2

    • I’m so sorry to hear that! It’s awful that this condition affects so many young people but hopefully we also have age on our side 🙂 I hope it does help, I send my best wishes to them.

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