I´m 3 today!!!

Happy Birthday, Candles, Cake
OK, what I mean is that today is the third anniversary of my surgery! Another milestone reached, and all is good. So good that I haven´t posted anything here for ages — my blog posts are getting even less frequent than my haircuts. But I had one of those this morning, so time to put pen to paper, figuratively.
To bring you up-to-date from my last post in January, I’m still driving. The instructor got his car fixed, with just a week’s delay I had my fourth and final lesson and I didn’t break the car. I mean, it was fine when I left it, OK? 😉 I’m used to driving again now. I’ve got over the novelty, I haven’t hit anything and the only accidents I’ve seen have been in my rear view mirror (jk).
I said in my last post that the neurologist wanted me to have another EEG and that she would make an appointment for a time when she could be there. I had that scan in early April. I was at the “relax, close your eyes and breathe deeply and slowly” stage of the test when I heard her voice. When the technician said “¡Abre los ojos!” I was able to have a quick conversation with her and proudly tell her that I had driven to the hospital by myself that morning. Before that, I had heard the technician saying that one of the electrodes wasn’t connected properly, but I think it was on the other side of my head and so not as important as the rest. The neurologist said she could see everything she needed to in the test results. My next appointment is on 12th July, which is when she’ll give me the results. I told her that I still occasionally get those flashing lights in corner of my field of vision, so she will take that in to account.
Looking back over the last three years, it´s interesting to note that although I’ve come a long way I’m still improving and my brain’s recovery is an ongoing project. One of the remaining effects that I have had occasionally is the feeling that I am about to have a partial seizure like the ones I used to have around three times a month. These momentary premonitions have diminished and I don’t think I’ve had one for a few months now. I’m still on the same dose of one medication (lacosamide, aka Vimpat) that I was pre-surgery. I’m also taking another one (clonazepam, aka Rivotril) that was introduced post-surgery for sleep and anxiety issues. Maybe the neurologist will start to reduce one of these, let’s see at my next appointment. Looking at my mental health, things are much better. I still get moments when I feel low, but these happen once every month or two at most and tend to go if I get up and focus on something else.
The main points are that I’m seizure-free (when I remember to take my medication), I’m working full-time (except for unrelated situations like feeling really rough after my second COVID jab last week), and, most importantly: in the last three years Lucinda hasn’t had to leave the house at a run to come and find me because I’ve called her to say I’ve had a partial!
That’s all for now, next update in three weeks after my next neurology appointment.

Did you say brake or break?

go-kart

Last time on (I need that) like a hole in the head, I told you how I had booked some driving lessons, then forgot my meds, had a seizure and had to cancel them. I had to wait until 28th December to start driving.

I said that I’d had a medical and sent off my application to swap my British licence for a Spanish one, which was going to be restricted to two years. Although online, on the traffic department website, it says my licence is only valid for two years, when I received the physical licence it was valid for ten! It also said I was born in Spain, so I thought I’d better take it back to them and point out the errors. The new licence is in the post… (but I have a temporary one to cover me until then).

Lucinda decided that it would probably be for the best if I started driving off the public road, in an automatic, so on my birthday just before Christmas we went karting! 😀 It was great fun, it felt natural, and I managed to lap Lucinda a few times, all-in-all a great confidence booster. We reached the 28th without incident, and then she let me drive her car around where we live and to work and back, a bit more slowly and controlled. All good.

Lucinda bought me four driving lessons as a birthday present, and I had the first of those on the 29th. Right at the start the instructor said, “Let’s go to Marbella, you know the way, yes?”. There are a couple of ways to go, he told me to take whichever I liked. We went to Marbella for the first and second lessons. The first time driving around the flat bit of the town between the main street and the sea, and the second time in an area that is a bit more twisty-turny and hilly — Divina Pastora, for those who know the area. That second lesson, last Wednesday, was my last for a while. We got back into the centre of San Pedro, on the big roundabout in the centre, and suddenly the power steering stopped working and lots of lights came on on the dashboard. The instructor told me to carry on; I turned off and headed up the hill towards the driving school and the car just stopped. Apparently, it’s an electrical problem, not my fault, but that was the end of the lesson. I was supposed to have another lesson today, but the car is still in the workshop. Hopefully, it’ll be fixed by Thursday or Friday.

As well as the lessons I’ve been practising in our (OK, Lucinda’s) car. I drove to the traffic office in Málaga last week to see if my missing licence was there. I’ve driven twice now when we’ve been out for the evening (I might as well, I can’t drink. 😀 ) And I’ve even done the supermarket trip on my own. I’m making sure I go out in the car every day, even if it’s just for 15 minutes.

Lastly, I had an appointment with the neurologist in December. Because I’m still getting the odd strange light effects she wants me to have another EEG test, and she is going to arrange it for a day when she is in that department so she can supervise it. Just waiting for the appointment for that now, more news when I get it.

Image by Capri23auto from Pixabay

Apparently we ARE at home to Mr Cock-up

So I’m over two years post-surgery, the neurologist gave me the all-clear to drive and I’ve applied to exchange my British driving licence for a Spanish one. The last you heard from me was in June, when I had booked a couple of driving lessons just as a refresher because I haven’t driven for a little over five years. So, three months later I’m back on the road, fully independent and designated driver on a night out, right? Wrong!

Everything was going well with my first lesson booked for Monday 29th June. But on the Sunday night, suddenly out of the blue, I had a seizure! I had woken up that morning with a bit of a nagging headache and I hadn’t felt good all day. I hadn’t walked the dog or done any cooking because I was just better off staying horizontal. The seizure happened in the evening after we had eaten. I was on the sofa outside on the terrace, so I was in a nice safe place. After I came round I couldn’t work out why I felt the way I did, asking Lucinda eloquently, “Why do I feel so shit?”. She told me I’d had a seizure, which obviously was surprising and worrying for both of us.

The first thing that goes through your mind is the thought that the surgery hasn’t worked and that the seizures have come back (which does happen in some cases). Once I had recovered sufficiently Lucinda got me upstairs to bed. She went to get my medication for me and then it all became clear.

My medication for both Saturday night and Sunday morning was still in the box! I had forgotten to take it, stupidly. I have alarms on my phone to remind me to take my meds, but I guess the evening one (11pm) was a little early for the weekend. I keep my meds box — with seven compartments handily labelled L, M, X, J, V, S and D* — in the bedroom. It’s usually just an automatic reflex to take them when I go to bed before I refill the glass of water on my bedside table. For some reason that reflex didn’t kick in on the Saturday night, and on Sunday morning the painkiller I took for the headache probably tricked my mind into thinking I’d already taken my meds when my morning alarm went off at 1030. I should have thought about the headache and general malaise I had on Sunday morning and checked my meds box then.

The one thing you don’t do with Anti-Epileptic Drugs (AEDs) is start or stop them suddenly. At the start you slowly build up to full dose and when you come off them you are slowly weaned off. Some AEDs are used for other nervous system conditions in people without epilepsy, and the same rules apply. Even if you don’t have epilepsy, start or stop the meds too quickly and you will probably have a seizure.

This left us with a certainty — obviously I couldn’t get back behind the wheel straight away — and a question… How long before I could drive? The first call I made was to the driving school to cancel the lessons I had booked. And the second to my neurologist. Sometimes it can be difficult to get in touch with the hospital, but I managed to speak to her secretary quite quickly and explained what had happened. He said he would pass the message on and get her to call me when she could.

The neurologist called me on the Wednesday morning and we had a nice chat. I explained exactly what had happened and she said that’s to be expected when you stop taking the medication suddenly. I asked her about driving and she said I should leave it for another six months, assuming I don’t have any more seizures in the meantime. Since then I see on the health service website that she has booked me in for an appointment in November, a bit earlier than expected but maybe she just wants a final check before I’m allowed back behind the wheel.

As a result of all of this we have gone back to the system we used to have. I tell Lucinda when I’ve taken my meds, and if I don’t she reminds me. We had both got complacent. And I have set my Friday and Saturday night alarms a couple of hours later.

Finally, if you live in the Marbella/San Pedro area and you’ve been worried about the prospect of meeting me on the road don’t panic! You’re safe until the end of December 😉

* That’s Spanish for M, Tu, W, Th, F, Sa and Su 👍

(In case you don’t get the title reference, it’s adapted from an episode of Blackadder)

An anniversary, and some catching-up to do

Man driving car

I’ve let this blog slide a little haven’t I. I haven’t written anything since November, that’s not good. So, before people start to think this is just another blog that was started with good intentions only to be abandoned forever, let’s catch up!

Firstly, today is the 22nd of June, so it’s exactly two years since my surgery. Yes, it’s been two years, and what a journey it’s been. But more about today later…

Since my last entry, things have generally been pretty good. Since the operation I’ve been seizure-free, but I have had occasional odd moments that could possibly have been “auras” or very light simple partial seizures. They have generally taken the form of slight visual disturbances like lights flickering in one corner of my field of view, but they don’t last long, I don’t have any other symptoms and there are none of the other symptoms that I used to get with partial seizures like confusion and extreme tiredness. It’s funny, that once the Covid-19 lockdown started, these moments stopped! In fact, lockdown was pretty good for me, much to the annoyance of everyone around me 😉

Before all that, I had a neurology appointment in January, and I described these symptoms to the neurologist. Her reaction was fantastic. She is convinced that these episodes are not epileptic in origin, which is great news. She is pretty sure that they stem from the recovery of my brain from surgery, and that they will pass. She said pretty much the same as my cousin’s husband, a psychotherapist. As the brain recovers it has to make new connections. Moments arise when the brain suddenly gets confused by sensory inputs that it can’t handle. The fact that sometimes I can control them and they pass without incident is a sure sign that they aren’t caused by epileptic brain activity, as that would be uncontrollable.

LED lights reflected in mirror
This is possibly what confuses my brain sometimes

Fast-forward to a week ago, last Monday, and I saw the neurologist again (six months since the last appointment). She was pleased to hear that since lockdown I have only had one more occurrence of the flashing lights, and that we have discovered something else. Switching off the lights in the living room makes the lights I am seeing disappear! We’ve got a light fitting in the living room with lots of tiny LED bulbs, and I think I catch a glimpse of them in the mirror, which starts it off. Just causes a momentary confusion in my still-recovering brain and that’s that.

In January, we asked her about the possibility of me starting to drive again, and she said let’s talk about it in June. And last Monday, guess what she said. She said yes! So now starts another adventure — I need to swap my old British driving licence for a Spanish one, and get back behind the wheel. I took the first step a few days ago. In order to exchange or renew your licence in Spain, you have a to pass a medical. It’s nice and easy, you just go a private medical centre that does these things, they do a few tests and give you a certificate to send off with your application. However, I made them earn their 40€ fee by being awkward. The doctor took my temperature and blood pressure, then gave me a sight test. All good. Then, he asked if I was taking any medication. I told him this is where it gets complicated and showed him the report from the neurologist; he was slightly thrown by this, and had to go and consult with a colleague. When he came back he said everything was fine, but my licence would only last for two years initially. That was a bonus because the neurologist had told me it would be one year. He commented that she had written exactly what was required by law, and I replied yes, of course, she writes these things all the time. Then I told him that I now have Spanish nationality — one of the things you gain with this is an extra surname (your mother’s maiden name), so the name on my old licence doesn’t quite match the name on my Spanish ID card. He looked worried, but I showed him the document I have from the police that links my old identity to my new one, and after another brief consultation with his colleague we were done.

While I’m waiting for my new licence to arrive, I have decided to ease myself back into driving gradually. I haven’t driven for five years, since a big seizure I had at work in 2015, and you may remember me writing about selling my car. Because it’s been so long, and we’ve moved to a different area since then, I’ve booked a couple of lessons with a local driving school next week. I just want to get behind the wheel in a controlled situation (dual-controlled 😄) and get some practice around the town and the main road that goes through it. I’ll have as many lessons as I need until I feel confident again.

Lastly, back to today. This time two years ago I was in the post-op intensive care unit, but I don’t remember much about it. It’s been a long recovery, but I am so much better now than I was even a year ago. Lucinda and I celebrated on Saturday night with a lovely meal at our favourite local “special occasion” restaurant, El Cortijo de Ramiro. Last night we had some friends round for a socially distanced game of Trivial Pursuit (our copy dates from the 1980s, it’s amusing when you get a geography question referring to countries in Eastern Europe that no longer exist!). And today we settled down to work just as normal. The “new normal”, where we both work from home. But just after 2pm I got a message from my boss asking if there was any chance Lucinda could take me to the office. He needed me to check something, quite urgently. I ran upstairs to where Lucinda works and asked her if she had any calls scheduled, and if not could she take me to the office? She said she could, so we left immediately.

Spìcy prawn rice, with a candle!
A surprise 2nd birthday celebration with my workmates

So we get to the office, there are just a few of our colleagues there, as usual these days. Someone has been to get an assortment of noodle and rice dishes from the takeaway, and as we get into the office everyone starts singing happy birthday. I think I’ve written before about how I get more emotional these days than I did before surgery, and yes, a few happy tears were shed. Our boss had even “re-engineered” a 5 candle to make it into a 2, for my second birthday. It was all a very lovely surprise. Lucinda had obviously planned it all with our colleagues. The funny thing is that I didn’t even notice when she removed me from the office Whatsapp chat yesterday so she could arrange it all!

In summary, I’m still free of epileptic seizures. The neurologist has said I can start driving again. And I am celebrating the second anniversary of my successful brain op in style 😄

A picture paints a thousand words!

CT scan post-craniotomy

I’ve written before about the health service here, and specifically about the website where you can make an appointment with your GP,  see and change your hospital appointments, check the status of your prescriptions, see your hospital discharge reports etc etc. Well just last week I noticed a new option: “Imaging tests”. It’s great, I can see all my previous MRI scans, CT scans and X-rays! The image you see here is from the CT scan they did a couple of days after the op — it’s labelled as a “scout” image, the rest are slices through the head showing internal structures.

CT scan post-craniotomyI find this one very informative. The staples that at that point were holding the flap of skin in place are very clear. Inside that horseshoe shape there is a smaller circle, which I think marks the boundary of the piece of bone they cut out to get access to my brain. I’ve never been sure what they did under the skin to hold the bits of bone together, but it looks like there are three bits of metal work doing that job. At the top there is a square piece with what looks like a screw at each corner, but the more interesting pieces (to me) are lower down to the left and right — they look like snowflakes, very artistic!

I’ve also got access to the MRI scan that enabled the neurologist to first find the cause of my epilepsy. What I don’t have on hand is a neurologist to help me interpret it! She did show me on screen at the time the difference between the right and left sides that confirmed the diagnosis, so if I find it again I’ll post it here.

Wiggle those hips!!!

One recurring feature of my recovery that I haven’t written so much about is the mental or psychological aspect. I’ve mentioned that I’ve had periods of feeling really low for no apparent reason. I’ve also suffered from anxiety when doing things for the first time since before my surgery. I’ve since found out that a likely reason for this is that although I remember doing things, my brain has lost the memories of the positive emotions I felt having done them. So the first time I am apprehensive because I don’t know how it’s going to feel.

 

Back in October I wrote about going back to salsa classes — at first I was apprehensive about this until I went to the first lesson and found that it wasn’t a disaster. Since then I have been going to two classes a week, one salsa and the other bachata. A few months ago the teacher said we would be having an end of year public show, and those who wanted to would be dancing a salsa routine that we would be learning starting then. It’s been a long road, I would never have believed how complicated it could be to learn a three minute choreography. But it took time, lots of practice, frustration and yes, tears! Soon after we started learning the routine Lucinda joined the same class as me. That made it easier as we were able to practice at home. And the end of this particularly story? We danced the routine (the whole class together and in time!) at the show last Sunday night. In front of about a thousand people! There were lots of different classes dancing different routines, and all their friends and family were there of course. It was in the amphitheatre in the centre of San Pedro, which has a capacity of 1,000 people, and it was pretty much full, as you will see from the videos below!

To make this fully relevant to epilepsy, to the surgery and to my recovery from it, I just want to add this. There have been many times since the operation when I just wouldn’t have been able to do this. Even if I thought I could and had been planning to do it, it would have been highly probable that I would have had to have pulled out at the last minute. But I didn’t this time, and I’m proud of myself. If you are on this path, if you are finding it difficult to get back in to your pre-surgery life: it will get better.

Here’s the first video, courtesy of Luis. You can see some of the crowd in this view from above. Lucinda and I are at the back on the left (as we are in the photo accompanying this post):

This second video, courtesy of Belén, is from ground level, looking straight at us:
I want to say huge thanks to Lucinda for her efforts, support and patience in getting me through this! Lastly, I need to mention the salsa school we attend here in San Pedro Alcántara, Academia Ven y Baila*, and our brilliant teacher Carlos. ¡Muchísimas gracias profe!
* “Ven y Baila” is Spanish for “Come and Dance” 🙂

One year on – it’s my party and I’ll… have cheesecake if I want to!!!

1st birthday decorations

We reached a big milestone yesterday, and celebrated in style!

Yes, it was the first anniversary of my brain op! Also, quite conveniently, it was exactly six months after (and before, obviously) my real birthday, so we decided to celebrate it as my first re-birthday 🙂 Lucinda organised it all, we had a few close friends round for a barbecue, and it was great fun! As you can see from the video below… *

The birthday cake is a raspberry and white chocolate cheesecake very kindly brought by our boss, and yes, I’m blowing out a candle in the shape of the number one 🙂 There was a 1st birthday tablecloth, and 1st birthday bunting, it was all amazing. Thanks babe! x

Earlier this week, we had the regular appointment with my neurologist. And as we hoped, she took me off one of my meds, Fycompa (peramanel). She’s added something else into the mix to help with sleep, the odd feelings/premonitions I´ve had and also some bits of anxiety, but that’s at a very low dose before I go to bed. She wants to see me in about six months, but seems happy with how it´s all going so far. She didn’t say anything about driving yet, but I don’t think I’m quite ready yet either. Maybe in a few months, let’s see.

But generally, things are going very well. Onwards and upwards!

* At the moment there isn’t a video, but I’m working on it. Today I have discovered that WordPress doesn’t let you upload videos if you aren’t paying for the service. OK, that’s up to them. But you can insert videos from youtube. I’ve uploaded the video to youtube, and it seems to be stuck on “Processing: 0%”. It’s a 30 second video, I’m not sure how much “processing” it needs, but according to youtube: “This is taking longer than expected. Your video has been queued and will be processed as soon as possible.”

Update: There’s always another way! The WordPress smartphone app does allow you to upload videos and insert them into posts. But, shh, don’t tell them! 😂

Purple Day 2019 #PurpleDay #EpilepsyAwareness

Purple Heart Ribbon

Today is “Purple Day” — the international day for epilepsy awareness. If you’re a regular reader of this blog I think it’s safe to say you are aware that there is this thing called epilepsy, and have a vague idea of its effects. But don’t just just take my word for it, if you would like to know more here are some useful resources.

 

epilepsy seizure first aid

And yes, I am wearing purple today. In fact I’m wearing the same fab t-shirt that I was wearing for Purple Day two years ago. This one:

Purple Day Purple T-shirt

Happy Purple Day to you all!! 🙂

EEG all clear?

calendar

I logged in to the health service website yesterday, and my next appointment with my Neurologist is already on the system — 17th June. It’s a little later than expected, slightly more than four months after the last one, but that doesn’t matter. The main thing is that it isn’t a sudden unexpected appointment in the next couple of weeks, so I’m guessing the EEG test last week didn’t show up anything untoward.

I’ll be back soon with something more informative, I promise!