On April 17th, 2023 I had a seizure in a supermarket. I’d had a busy day at work (the start of the busiest week of the year) and decided to go to Sainsbury’s on the way home. I remember feeling slightly dizzy and very tired and my eyes feeling funny at the jam, and decided this would probably have to be one of the days when I got straight home and went to bed.

I woke up on the floor beneath the doughnuts, round the corner from the jam. Someone was mopping the floor around my head and I was damp. Someone was reaching over me to the doughnuts, my partner was present with two ambulance drivers; none of them had been there when I went out.

I got ferried to A&E where we spent most of the evening. I had a CAT scan and bloods, they put a canula in my hand, and many, many people told me I should go see my GP about my blood pressure.

Bit by bit I pieced together what had happened. I had been down and out for about 30 minutes, long enough for passers-by to take my phone off me, and because I had been using it for my shopping, it was unlocked and they could work out who to phone. They saw my dad and thought actually maybe it wasn’t worth worrying him. They found my brother who was great but a long way away and put them on to trying my partner who was five miles away. He was not in my phone under his government name, so that took a few goes – I could see from the call logs later quite a few people got a call that night. When they eventually reached the right T, they told him he should come straight away as it looked like I was dying.

I am so glad he did, as he was an absolute godsend that night. For starters, he was in a position to pay attention to what I was being told in A&E. For me it is all a bit of a blur. And he also took contact details from the people who were in the shop, setting up a WhatsApp group with them and asking them to write up what had happened from their point of view. He organised with Sainsbury’s that both our cars could stay in the car park overnight.

After a few hours A&E let me go home. I don’t remember how I got home. The CAT scan was clear, the bloods were OK, they fed me a sandwich and referred me to First Fit Clinic, a subset of neurology that I had never heard of before. They told me I shouldn’t drive. I went home, phoned in sick and slept and slept.

The following day, I started car stuff. I did drive one more time – to get the car back from the supermarket and do the clumsy manoeuvre onto my drive. T couldn’t help because he only drives automatics, but he followed me back through the journey to check all went well. I SORNed the vehicle, cancelled my insurance and filled in forms for the DVLA. Reader should this happen to you, please follow the Stopping Driving Advice from Epilepsy Action and don’t just fill in the most obvious looking forms on the DVLA website. This will be important if you get to the end of a year without driving and need to persuade our Swansea bureaucrats that you would like to get behind the wheel once more. If you fill in the obvious form, the DLVA will revoke your driving licence. If you surrender your licence, you are still agreeing not to drive but one year later you don’t need their permission to restart, whereas if you fill in the form and have your licence revoked, you cannot restart driving until you have a letter from them saying you can. And that is not a quick or straightforward process.

I can’t remember much about that week off work. I had abandoned colleagues to do the hardest week without me when they were already short-staffed, but they were understanding and forgiving when I returned. I barely remember, but I ached all over, having used all of the muscles in the body in a very new and different way whilst spasming. And my mouth was uncomfortable because I’d bitten my tongue quite hard down both sides.

After that sick week, I returned to work. What had used to be a 40 minute car commute through busy traffic was now a 90 minute bus-tram-bus journey, and because it was multimodal, it cost at least £6 a day. I spent most of the year doing this, with its highs and lows. The routes were mostly quite busy, especially through the city centre and especially in term time, when a handful of stops were absolutely rammed by under 16s going to school. Some of their conversations around me were troubling, and some of them were just awesome. One morning there was even a bunch of school girls doing German homework out loud around me and I had to restrain myself from joining in.

I never struggled to fill the time. It turns out I can very easily waste three hours a day on my phone and now I no longer have to, I miss it slightly. There were all sorts of suggestions made to me about how to fill the time – I could read! or listen to podcasts or audiobooks! In fact I could easily fill my time with a series of word games – Wordle, Waffle, Connections, Squaredle, OneWordSearch. I got nearly a year’s streak on Duolingo, first trying Portuguese ahead of a Christmas holiday, then returning to Swedish, T’s mother tongue. Any remaining time was spent on Twitter, which turned into X during that time, X being much harder to use as it didn’t allow the awesome Dabr client I used before.

First fit clinic was supposed to be a few weeks’ wait. Fair enough, I suppose neurology have actual patients who are more important. In the meantime I followed up on the contact-your-doctor-about-your-blood-pressure advice. They were slightly surprised to see me as they had recently checked my blood pressure at my turning 40 NHS Well Man check and had thought hmmm at the time so sent me home to do a week’s worth of home blood pressure checks, two in the morning and two at night. Dear reader, if you think your blood pressure is wrong, there is no point just going to see your GP, because the first level diagnostic tool will be to send you away to do check your own for a week, because they don’t quite trust the few readings they can do in a 10 minute appointment. So buy your own sphygmomanometer (they’ve fallen a lot in price recently), do a week of readings and show up armed with that, and you can cut down the amount of time it takes to get a diagnosis.

The next thing I learned, on my return visit with a fresh week of BP readings, was they are going to want an average of all the top-of-the-fraction numbers and an average of all of the bottom-of-the-fraction numbers, so if you want to pre-empt your GP hurriedly typing them into his phone, you could set up a handy spreadsheet that works out the mean for you. At this point we are entering into not-a-serious-problem but-still-too-high so I leave with three months supply of entry level BP medication and get told to return with a fresh set of a week’s BP data. At this point I raise that we should have heard from neurology by now and haven’t, and the GP promises to get his secretary to chase them. I get a phone call a few days later and a person who sounds rushed off her feet confirms I am on the list, but that the waiting time is increasing, wait your turn and it will come.

Eventually probably the same rushed person phones again and asks if I can be available for a phone call the following day between 2 and 4 as first fit clinic happens by telephone these days. Yes, that’s fine – preferable if anything – I can book a quiet working room away from the open plan office and wait there till the call comes, and I don’t have to take half a day or negotiate the QMC.

The call comes on 1st June, six weeks after the seizure. I speak with the head-neurologist’s deputised person who has a strong accent but is just about understandable. He takes me through the day of the seizure and the WhatsApp messages from the bystander who saw me go down turn out to be extremely valuable as I have nearly completely forgotten everything that happened that day. The length of the seizure and the tongue biting strongly point to this having been an epileptic fit. No news at all about whether I should ever expect another one. Take care around water, take showers not baths (no bath in my house, not a problem), never swim alone (OK, this I can manage, I mostly only swim in the sea very occasionally) and never cook alone (completely impractical, advice ignored)

At the end of the call he asks me about my drinking. I log all my alcohol intake quite precisely after a weird meeting with a locum GP a few years earlier. I met this woman once, and at least three things she said are etched in my mind. 1) you probably drink more than you realise, try logging it for a while and see. I huffed, said of course I didn’t, followed the advice and whaddya know. 2) she told me the phrase “sitting is the new smoking” which I think I have said to someone else at least once a month ever since. and 3) she was actually mainly a nutritionist before a GP and so I quizzed her on where she stood on carbs. Bad, she thought. But I like bread!

Anyway, I log my alcohol intake. I measure all spirits and wines and of course things in pubs and cans are also measured carefully. So I knew that in the previous year my average had been around 21 units a week. I suspect health care professionals hear something like that and at least double it, so while I’m fairly sure that’s my levels, I also feel like I am being talked to as if I was a very heavy drinker, which I’m not really. He asked if I needed help to cut down and pointed out that the NHS advice is no more than 14 units a week.

Now I have a bit of a routine about units, I spared the consultant’s junior partly out of my own racist assumption that someone with that name is probably teetotal anyway and wouldn’t get the joke. My hypothesis is this: at school we were told 28 units a week for men and 21 units for women. This is the advice that carries through with my generation until the end of time. The new, reduced, 14 units a week only applies to younger people. It is the same with GCSEs. I will carry my letter grades with me to the grave, they don’t get converted into newfangled numeric grades. Etc. So as far as I am concerned, I am well within my limits. This however is not the point of view of the expert on the phone who asks me to cut down. (Blog post to come about dry weeks…)

And at the end of the call, he says he will refer me for a head MRI, should be a two or three month wait because it’s not urgent, and says I should probably google fudep. ?? It’s not very clear what he’s saying but I eventually I understand it’s SUDEP.

So I hang up and google and find SUDEP is Sudden Death in Epilepsy. I feel this is rather a cheap and shoddy way of letting me know that what I have experienced kills some people and there is no way of telling who will make it and who won’t.

So now we are waiting for an MRI and waiting for BP meds to kick in.

At some point I see my GP and they have a letter from Neurology which apparently had been CC’ed to me but my copy never arrived. It covers the points from the phone call, and not all of the sentences make sense. It’s obviously a form letter that was poorly drafted in the first place.

So we are cancelling holidays as suddenly quite a few things that were in the diary are no longer possible. A road trip to the Loire to see Château Chambord amongst many other Loire castles is now too difficult, so cancelled. A weekend to see friends in Normandy… not quite cancelled, but the dates are close so I adjust the ferry booking to the distant future since it isn’t possible to cancel and get a refund. No camping trips at all this summer. When I go camping, I fill the car and camp in comfort. This means weekends away have suddenly at least quadrupled in cost. You can find a campsite for a £10 a night. No other weekend away is anything like as cheap, so pretty much no weekends away this year. A road trip down the M5 to visit friends in the countryside near Bristol turns out to be just about possible by Megabus, so that stays in.

I have been talking a bit about the seizure on social media and an old friend from the very early 2000s drops me a line with some surprising news – he’s just finishing a year of no driving, having had his own seizure 11 months previously. He has lots of tips and tricks – it might be worth selling the car, getting it back on the road after a year will be a pain, and leave it in gear, don’t leave the handbrake on as you may never move it again without. But most importantly of all, if you are disqualified from driving on health grounds, you are automatically entitled to a disabled bus pass. I had no idea. This has not been mentioned by anyone in the medical profession who deals with seizures all the time, and it hadn’t come up in googling. But in the end it made a huge difference for the year without a car.

I got in touch with the part of Nottingham City Council who dealt with Mobility Cards and they were absolutely excellent, really the ray of sunshine in officialdom of this whole sorry saga. Neurology / MRI – slow. My GP, fairly good. DVLA don’t get me started. I did not have high hopes for NCC but actually this team was top notch. On the phone they heard my story, and thought I would qualify. They got me to fill in a form. I was worried I didn’t have any evidence at this point – the neurology appointment had been sorted by phone, and the DVLA hadn’t responded to me in two months. They reassured me that it was better to just get on with the application, see their medical specialist and not wait for the ducks to be in a row.

I made an appointment – there was a staff problem and one wasn’t available for weeks and weeks. The transport team actually phoned me back and asked why I hadn’t sent my form, and when I said I couldn’t get an appointment for weeks, they huffed, said that wasn’t right, made some calls, got back to me and said actually you can have an appointment much sooner. Another tick for them.

As it turned out the letter from the DVLA saying “you must not drive” arrived a few days before the appointment with the transport GP who helpfully was walking distance from my house. The medical check turned out to be just showing that letter to the GP who said, yes, you qualify for a disabled person’s bus pass. Most usefully of all, Nottingham City (not even Nottinghamshire County does this) makes their disabled person’s bus pass work all day not just after 9.30am, and makes it work on the bus and tram, so my whole commute to and from work is covered by this and is now completely free. This saves me £30 a week. Like I said, ray of sunshine.

The summer arrives. Choir tour in Beverley is entirely possible by train. For the August bank holiday I reheat my plan to go to Normandy. It’s… a bit of an ordeal. Trains to Portsmouth for the ferry take all day. My friends have to collect me directly from the port in Caen, which either means being there to meet the night ferry at 6am or me having a hotel night in Portsmouth. But it all works out and a lovely weekend is passed.

In September, me and T have our annual holiday away – these are normally quite active sightseeing affairs, often multiple heritage sites a day, a fly drive or a ferry drive, with yours truly behind the wheel. This year we resolve to go to a self catering resort and essentially just stay on the resort for the whole week. And indeed we do and it’s kinda marvellous. The resort is remote and there is absolutely nothing within walking distance. I slept how I wanted, drank how I wanted, cooked every night, and read a million books. Well not quite, but books blog post to come as I’ve not written one for years. Towards the end of the week I said to T that I had rather enjoyed it and would be up for another week of lounging and reading. I don’t think he quite agreed.

No news on the MRI. Neurology have proven hard to contact – the phone is never answered, there is no email address. So I wrote them a letter and five days later the frazzled woman phones. I am in the queue. They are aware. The waiting lists are getting longer. No more detailed updates can be given. Wait.

Eventually I am seen mid October, six months after the seizure. A space becomes available at the MRI in the Sport Science department of Loughborough University where they keep an MRI as part of their work with elite athletes. On the Olympians’ day off the NHS gets to play with it instead.

I’ve had 2 head MRIs before this as part of research projects in the University of Nottingham – in 2017 they were trying to work out if you could visualise noise related hearing loss through MRI, and it turned out you can. In 2022 the same researcher got back in touch and asked if I’d be up for going back through the tube for another project and yes, I did. In exchange for your time, they emailed you some scans of your own head, which I have now printed on a mug and use as a desk tidy at work. I rather like this slice which demonstrates very clearly why I am short sighted:

Look how non-spherical that eyeball is!

Anyway, I have had head MRIs before and this one for personal clinical reasons is no different from the earlier ones. A bit bangy, a bit claustrophobic, but concentrate on breathing deeply and it’s over soon enough. This tube has a lovely screen to focus on above your head. I mean, it would be lovely but they take your glasses off you and I can’t see that far without them, just look at those egg-shaped eyeballs.

There’s a team of about 4 people manning this MRI centre – a receptionist, a couple of nurses in scrubs to say what to do and where to wait. At the end a very nicely-spoken lady in a white coat and a fancy hair do comes out to thank me for staying still and to warn me that getting the imaging done is only one part of the process. The images now need reviewing and that will take another few months.

So back to the GP for the next blood pressure review. The pills do not work. The GP gives me a choice – a few more months on the same pills, but redouble my efforts at exercise or start new pills. He is wanting from me 150 minutes a week with an elevated heart rate. In fact my Fitbit and Google Fit are already monitoring and I manage something like this most weeks anyway – largely from walking up the hill to my house, and occasionally, weirdly, from bellringing, which Fitbit misinterprets as swimming. The GP is not reassured by this and wants me to fit real, heart-rate rising exercise into my routine weekly activity. I don’t have the heart to tell him about the week by the pool on La Gomera.

A few years ago, I sort of ran. I recently had an email from Park Run with a list of all my runs. Fewer than 10, the most recent five years ago, age grade around 30%. PB was 35.44 in 2015. So if any exercise is to be done, sort of running seems to be it? I can’t cycle. I don’t want to swim in local pools although I do like splashing in the sea on holiday / Wales in September. But, you know a 5k didn’t used to be impossible. But it had been a while so I resolved to start gently, plotted a one mile route from my front door and off I went at a very slow jog. My knees hurt to start at once and then they really hurt but I persisted and got back and then it was clear that my knees were a serious problem.

The pain hasn’t gone away since last October. I now have bad knee days. There are bellringing days when I worry about not being able to get back down the stairs. I can’t do heel kicks any more. I have to get out of cars like an old lady, swivelling slowly sideways and using the handle.

I have taken the knees to the physio and they suggested some exercises which haven’t really helped and strongly implied the problem was probably that I was old and lazy. Two insurmountable problems. But given I was expecting to hear arthritis, it’s possibly good news.

So now I need to find something else that raises heart rate and I’ve not got there yet. I did personal trainer / gym, for a few years a decade ago and I don’t want to do that again. I am reluctant to start swimming, but I probably should. I probably last tried a Nottingham municipal pool 25 years ago (I can remember where I lived, it was two houses ago and I’ve lived here 19 years this Christmas) and I found it hard to complete even one length. They’ve subsequently demolished that pool and there were long-running rumours it was going to be a mosque so everyone breathed a sigh of relief when it was just turned into a Lidl.

The GP also finally tackled the caffeine question. I had deliberately not been raising it but he actually asked at the most recent appointment. Turns out six mugs of filter coffee a day is actually quite a lot, who knew. Caffeine has never affected my sleep so it was easy to overlook it might be having other health consequences. I sort of stupidly had drinking a lot of caffeine as a personality thing so I felt it was very deeply ingrained and impossible to change. But it turns out my brand of ground coffee (which Nectar once told me I bought more of than anyone else in Nottingham) is also available in decaff. The doctor said switch mostly to decaff or tea, and I did, and that was actually a very straightforward easy lifestyle change.

Having had a lovely time lounging by a pool for my September summer holiday, a similar opportunity came up for Christmas, and I had both Christmas and New Year alone in Madeira. On two previous visits to this resort, I have had a car, but there was loads to do directly from site both on foot, through organised trips, taxis and even via local public transport. Turns out a fortnight mostly reading books, eating, drinking and quite a lot of walking is amazing, and I will definitely pencil it in for future years. Maybe not every year, as it was rather pricey.

In the new year, I finally received the outcome of the MRI telling me there were no abnormalities detected. This meant I had done all the tests neurology wanted and essentially had the all clear to return to driving. If I had followed the right path, I could have been back behind the wheel the same day I received the letter but because I had filled in the obvious but wrong form, I had to wait for codified permission from the DVLA. I completed the form that had arrived with the “you must not drive” letter, and posted it to neurology expecting them to return it to me. I did this wrong and week later, the neurology person phoned me again and asked me to post extra parts of the form to them and told me THEY would post it to the DLVA. I was worried about this because I would have no idea on timelines or when to expect a response.

It was a long wait. I managed an Easter holiday to the Dordogne – another remote resort, this time driving duties undertaken by my brother, who conveyed me, my father and two thirds of the nephews around for a week. Fab time had by most, eventful journey home involved being deplaned and hotelled for 24 hours while they struggled to get a plane that would fly…

The timelines are a little blurry now but at some point the DVLA posted me back my entire application and medical evidence with a complaint that I hadn’t sent them a fresh photo. (They hadn’t asked for one, but my old photocard was old, so perhaps I should have understood they would need one.) The handwritten paper form had been annotated by hand in red ink, and a slip in it explained this meant it had already been checked and not found wanting so all they were waiting for was a photo.

I can remember I took the photo at a student photo ID booth on campus the same day as a university choir concert, so that must have been 16th March 2024. I started using the DVLA licence online checker and have a screenshot from 23rd March from when it went from “you may not drive” to “you have a full driving licence.”

Once the permission was back, then the technicalities. My car was completely dead. No battery, brakes locked. I live on a steep hill on the inside of a tight bend, and my drive slopes downhill so it was quite a technical feat to tow the car out. We blocked the road for a bit and the tow truck driver passed the hauling cable around a tree to be able to pull in the right direction. The steering was extremely unresponsive and the seats were disgustingly mouldy. But eventually the car was hauled out and taken to the garage and a four-figure sum lavished upon it until it was finally roadworthy once more. I think the garage was a little surprised I would pay, but in fact getting it back on the road was not very much more than the last lot of MOT work needed and although new car is on the cards, I felt getting back to driving probably suggested a pause on that.

I had had some concerns about whether I would remember how to do it, but in fact getting back behind the wheel was like – well I can’t say riding a bike, because I can’t do that – but like a well fitting glove. I was straight back into the swing of it and managed to fit in collecting a parcel, going to Ikea, doing a bellringing tour and getting the seats steam cleaned in the next few days.

Not quite the end of the story – no discharge from neurology yet. The first fit clinic came with an inbuilt consultant review – in fact the appointment for that arrived before any news about my MRI. I almost phoned and cancelled since from my point of view the year of non-driving was over. However, the appointment was useful and the consultant made more sense than the registrar I had had the phone conversation with the year before. He told me that it’s not unusual for a person to have one seizure in their life… but if you have two, you have epilepsy. He talked to me in more detail about drinking, as one possible cause of seizures is withdrawal from alcohol. But this tends to be linked to people who drink mostly nothing, then have a huge 15 pint binge, and the seizure happens in the following days. My drinking pattern is much more regular and the consultant told me, and I quote verbatim here because it’s not the view most people have of me, “your drinking is not that impressive.” The outcome of the appointment was a final referral for an EEG, which is in the calendar for 12 November. If this is all clear, then the seizure journey is finally over. If not…?