Sterio EEG and Video Telemetry is no cakewalk but it is a walk worth taking

It’s been a month now since I completed my sterio EEG and telemetry with stimulation to boot and It has re-enforced my respect and gratitude for those who cared for me.

I was in hospital for 13 days, and to be honest with you aside from the days where seizures happened it was was pretty much groundhog day. Aside from the first few days.

Monday- I was admitted, and spoke with the Surgeon who would be manipulating the robot which would assist the surgeons place the electrodes (I may or may not still have them… as a momento or maybe a future Christmas decoration). He was super nice and I was as relaxed as I could be. I have been down this path before but this felt (feels) different. My thoughts about the procedures and my future have more conviction, I’m not scared of the what-ifs any more. Which is a big contrast from me 2 years ago.

This is one of the occasions that I had decided to try and pull out my electrodes. Thankfully there was plenty if slack.

This my head with the electrodes in situ. I felt no pain.

Let’s fast forward to Wednesday (electrodes in my brain ready to go) when I was moved to the telemetry room at the hospital. Later on that day I was wired up to the EEG and off we went.

Telemetry itself is fine however it plays with your head a bit, you are bed bound and you need to except that this is for your safety. Nothing hurt, everyone that I spoke to was lovely and I had a room (and crash cart) to myself. They watched me like hawks but hawks that who can administer buccal modazolam.

You will not be able to use the toilet- no ifs ands or butts. Your seizures must be in front of the cameras, we have a job to do so lets get it done not worrying about the small things.

Take entertainment, maybe an ipad or books, definitely snacks and definitely don’t worry about sleeping, not sleeping will help things along nicely.

Seizures happened

As was expected I had lots of activity and one big tonic clonic seizure which brought proceedings to a close. When I was post-ictal had a good go at pulling the electrodes out and needed to have my wrists restrained. I’m 6’3 that takes some effort on their part.

The most amazing bit was watching my consultant read my EEG like a secret book in a language known only to a few. In addition when they stimulated my electrodes when I did feel something its was totally humbling. We know so little. But those who do know are in a different league.

So What has changed for me since last time?

In the past, I felt a lot of responsibility to my family business, not acknowledging the fact that my epilepsy stops me from being able to be my best me all of the time.

We all have our limits. I have had some significant seizures over the past 3 years, no medication really stops them. I have always jut carried on parenting and woking. Now safety is an issue. I had to be escorted home yesterday. My brain was like toffee.

I grew up, I’ve grown up to understand that you can’t make an omelette without breaking eggs I’m prepared for the risks that might be involved I’m 41 now, I’ve had enough of not being in control.

What is next?

In true surgical style I have a few appointments before I really find out what happens next. The big ones are in early June. But what I do know is two things.

They have found the offending spot on my brain and that they know more about my brain that anyone every has. That is huge!

What did Covid-19 ever do for us? An Epileptic’s perspective

After a couple of weeks of being in lock-down and also a furloughed worker, it has become obvious to me how important routine is for a person with epilepsy. I relied on certain landmarks in the day to act as a reminder even more so than a clock or an alarm. Without these I am somewhat lost and fall into the self made category of bad epileptic.

I have no problem getting medication or help from specialist nurses but unfortunately we don’t have the luxury of a PA to follow us around with an alarm clock and medication or a reminder that it’s bed time and 8 hours sleep is the way to stay bright and breezy. So how do we/I get around this? The truth of the matter is, I don’t really know but I suppose the key is to try things to make the situation better.

For me I generally don’t spot a problem unless it is too late, my last problem came in the form of forgetting if I had taken my medication and then getting my evening dose wrong (it’s two for the price of one but at least I didn’t pee myself this time). Following this I had a series of head thumping seizures which only stopped with the help of my emergency medication and an alarm clock set at 12 hour intervals.

Since then I have been a bit more regimented with my alarms. Although I am quite sure there are things that are happening at the moment which are still happening despite the lock-down. I am also trying to get the sleep and listen to my body more and give it rest when it needs it and move around when it wants me to also. Basically just make a routine out of what you have.

Public well-being announcement aside. As a result of the lock-down and the cancellation of all elective surgeries in the UK, the surgical treatment of my epilepsy has ground to a halt. I can honestly say that I am relieved. I was scheduled for SEEG surgery and observation as of 6th April and this has been understandably cancelled…. But for how long?

Video Telemetry a leap of faith

My last EEG was done when my medications worked!

For those who have never heard of it, the words video telemetry can strike fear into the ears of people who have. Or maybe that is just me.

Video telemetry is as much a thing to go through as it is a test. It consists of an EEG which is completed over the course of five days and at the same time a video camera records any seizures that occur. It sounds rather simple, and that’s because it is. It isn’t scary at all, what millennial doesn’t love having a camera on their face. Also EEG selfies would look awesome on a facetwit post or with a dramatic filter on instabook? The only problem is I am 36 and the only reason that I know what instaface is because I have a younger sister and she spends a lot of time on her phone taking selfies and pouting and nobody in particular. Kids nowadays eh!

Where VT gets scary is with the small matter of medication or should I say, the lack of it. As I said earlier, I am 36, and haven’t spent a day off my medication in 30 years. To me that means I don’t really know what it is like to be an uncontrolled epileptic. It is this little chestnut that scares me. I don’t even want to mention the risks but needless to say, they aren’t pleasant. Hopefully the worst I’ll have is a bitten tongue or a black eye.

Don’t get me wrong I would hardly call myself a person with controlled epilepsy. If I was I wouldn’t be spending a week in hospital wired up to a PC with a bowl to wash with and a commode to… You know do commode stuff in. I have on average about 10 to sometimes 20 seizure types events a day. Although this feels normal, I am told that it is not and that it is significantly worse than when I was in my late teens and early 20s. There are no more medications for me to try so that leaves me at the doorstep of my friendly neighbourhood epilepsy surgeon. I have met him a few times, he seems keen on the idea of popping open my noggin and seeing whats what. But wait, before that there are tests to do and questions to answer. Questions like, where is the tumour? Where do my seizures start? and What parts of my brain are involved(I’m told that last question is really quite important)? Which brings us to Visual Telemetry as it holds the answers to some of the surgical teams questions. I’m also quite keen to have a few answers too.

So the deal is clear, for me to find out if I am a good candidate for surgery, they need to know EXACTLY where my seizures are starting. If I want answers about surgery, I have hoops to jump through. So on Monday that is what I will be doing. Taking a bit of a leap of faith whilst jumping through hoops. Wish me luck!

Let me know if you have had video telemetry I am very keen to find out what it could be like as I do not like surprises. Although I think I could be a fan of all the Midazolam.

I have been told I will have 1-1 nursing, I don’t quite know what to make of that and the idea of a commode is just grim. But I’ll be out on Friday so…

Thanks, Ant

A knock in confidence is just that.

Having I’ve always had epilepsy, well nearly always, since I was 7 years old. As a result I have always just… gone with it, for lack of a better description. Seizures have always happened, and over time you establish that you spend more time worrying about how it is perceived by others than how you are actually feeling. So you could suppose that I’m okay with it and I have made my peace with it.

No. This couldn’t be further from the truth especially as an adult, where we are meant to be allowed to make choices to a far greater extent than when we were children. With epilepsy we are not always afforded this luxury; which I suppose is why I am (or was at least) happier to accept it. Accept it as almost predictable, routine, like clockwork and even bizarrely comforting. This arrangement is fine until it isn’t, routine, like clockwork and comforting.

A few weeks ago I was away with my family, visiting family. We travelled a little bit, planned a lot, but got there in one piece and had plans for the weekend which we were excited about. We arrived into the hotel where we were staying and had some food and went to bed (nothing out of the ordinary there). In the middle of the night I woke up and needed to go to the loo. Off I went and sat down (I wasn’t in the mood to stand). And at that point it all went black. The rest is grim and to be honest messy.

TACET 😉

That was the first (possibly second, arguably third :S) “proper” tonic clonic seizure that I had experienced in years. I was (and still am) gutted. I have had partial seizures for years but this was old ground which I had hoped to never go over again. I didn’t realise how vulnerable and crappy that makes you feel. It was like having a bad hangover, but without having the cracking night out the day before!

With a numb tongue, bruising and banging head I realised that at that moment I didn’t have it, it had me. Shit.

All of a sudden and for the first time in a long while going outside or doing anything alone was a massive deal. Its quite a lonely place to be. Not being one to admit defeat to this sort of thing, I downloaded a seizure tracker app, I wanted to know how many seizures I was having, of what type and when.

Prior to keeping a proper record of my seizures, I had always thought that my seizures were most prominent in the evening. As a result my AEDs are geared to compensate for that. Based on my data from the app, the happen in the middle of the day and are plentiful. Far more than I had previously thought, about 5 times more.

So maybe I haven’t been managing it, I have been ignoring it. The seizures weren’t predictable or routine.

Following this revelation things have picked up. I have learned that optimism and epilepsy does’t always work. I’m also happier to accept the reality of it. Reality being, in the time it has taken to write this I have had 2 auras, but on the plus side no seizures. Which is good as I have food in the oven.

So that’s that really, I hope that was useful in some way. Please leave a comment if you can. Thanks for reading.

Ant 🙂

Epilepsy, fatherhood and fatigue, yet the wheels didn’t fall off.

My daughter is 16 months old now an we have settled into a routine, we have what I can only assume is a normal home life. I’m pretty confident that it is.

When she was born, she arrived with a thump. Having been battered and bruised on the way out; she took a while to get better and spent some time in hospital. Now she is a happy 16 month old who loves her George Pig toy. If I didn’t have pictures to prove it, nobody would know that she went through the mill. My wife took a pounding too, she never uttered a moan or complaint. She is a legend, an absolute hero.

Before the baby was born I was concerned about having seizures around my daughter. I just didn’t want to get in the way and need help, when I was meant to be the help. However as soon as she was born something rather strange happened, and to this day I am unable to explain it.

From the day of her birth I had a 6 week period without so much as an aura, and even now I do not have seizures in any way like I used to. In the first 3 months my sleep was interrupted and wakeful, this is traditionally a recipe for disaster. But no. I remained seizure free. The lack of seizures was unnerving and I waited for an absolute monster to come along and rain on my parade. I am even now at a loss as to what caused this, but maybe it was just that my sleep was so jiggled and disjointed that my brain didn’t know what to do. So it did nothing. I accepted this with open arms. This was the longest period of grace that I have ever had from seizures since I was about 7 years old. The gratitude that I have for this is immeasurable.

But all good things come to an end. Two days after my daughter started to sleep through the night, my period of grace was brought to an abrupt  but quite polite end.

Oddly, when they came back I felt more normal than I had when I wasn’t having seizures. During those eight weeks I felt as if I had to look over my shoulder, as epilepsy was taunting me just waiting to pounce. On its return, the relief was considerable, yet so was the disappointment. Bizarrely the fact remained that I had missed my epilepsy. Is this normal?

I feel quite guilty for missing the seizures. I know people would give their right arms to be seizure free. To be honest I would too. Although I don’t think that I would be able to trust the seizure silence. At least now I know where I am with it, its like an old friend that you just can’t shake off. You know, the one that comes out on a night out and “forgets his wallet”. Yet if he wasn’t there, you’d wonder where he was and would lend him some money in order to get him to go to the pub.

Maybe it is just me.

With the help of a new AED, rest and an rejection of stress; my (rather brutal) partial seizures started to get in to line. At the moment they are much kinder, far less frequent, intense and more predictable than ever. Epilepsy certainly does not stop me from completing Dad-ly duties. If anything, my experiences in life have made me focus and made me a better Dad. For that, I am quietly grateful.  🙂

Many Thanks for reading ,

Ant

 

 

Hiding a seizure is definitely more fun than just letting it take over!

Being a very well medicated person with epilepsy, I have always challenged myself (knowing that I always lose) to power through any partial seizure that dares attempt to inconvenience me. I have been on the end of various differing outcomes; for example I regularly stand having discussions with colleagues in work whilst they are totally aware that the left side of my body has switched off, and that I could fall like a felled redwood at any second. There is a coping strategy for this and many other scenarios. Quite often I can feign full lucidity for the duration of the partial, leaving them totally unaware of the battle between chaos and order that is silently dominating every movement.

I must admit, the people I work with are getting wise to my “fool proof strategies” to stay (more or less) upright. They immediately notice me stood bearing the weight on my right leg barely moving, whilst I am unsure of what is going on with my left hand side. It could be on fire and I would plough on as if all was fine an dandy.   At home my other half simply has to look into my eyes, then wait for me to  ask (rather oddly)if she is okay. For a split second I assume that she is also in a world of absent spacial awareness and a non responsive left hand side of the body. Apparently it is an easy mistake for me to make.

Phone calls are a big challenge, they are arguably the hardest of all. The main nemesis being the ever present office swivel chair.

I can not overstate the difficulty of holding a swivel chair in an forward facing position when the entire of your left hand side has lost its muscle tone, causing the chair to turn. This is yes, hilarious, but it is also made even more fiendishly difficult when coupled with the lack of spacial awareness that occurs with it. I have toppled chairs in the office before now, due to my insistence on holding a phone call whilst the chair is in a uncontrolled turn to the left. It resulted in me tripping on my own leg, getting tangled, then as a result pulling myself off the chair; only to finish the call as a mangled heap in the floor. It was far from a convincing outing. I couldn’t even remember what the phone call was about.

However there have been some genuine wins.

It was the summer, the lads picked me up with the taxi and we headed to the pub. As we arrived I was getting the smallest hints that a partial could be happening soon. As a result I sauntered over to the bar and assumed my position, holding my weight on my right hand side poised and ready for a seizure that, in all honesty I expected it to be a no show. So as time went on with no seizure, my confidence grew and I placed some weight on both feet but held my beer in my ever steadfast right hand. This was my mistake.

Moments later the room was upside down and my left side was no longer there, it was only a matter of time before it gave way all together. So as panic set in I surveyed my options.

1. Return to my right side leaning strategy and hold on for the best- the outcome would be unpredictable
2. Walk the 5 feet to the nearest chair- this distance may as well be 5 miles as my leg was a complete waste of tissue at that time
3. Sit on the floor- the floor was sticky, it was the smelliest but least risky of the options

I boldly chose option 1.

I stood talking with my friend, mostly able to look at him instead of the room that was flying around. Then it started to happen I began to tip. I didn’t notice initially as my perception of movements wasn’t working. I only noticed what was happening when I looked down at my pint. I became transfixed by it. As I was falling the beer was creeping up to the lid of the glass. So I made what consider an admirable decision. I was going to save the pint.

I focussed all my energy on looking at the beer and held it level all the way to the floor, I hit the floor with some force but I was numb, thankfully. Then holding my pint in the air like a toppled He Man I defiantly saved every drop of my pint. I laughed as my genuinely concerned and confused friends looked at me an my bizarre demonstration of where my priorities lay. Job done.

In hindsight, option 3 every time.

So for me the fact that I am certain that these partials will follow me forever, I have tasked myself with blindly ploughing on and finding a way to make sure there is a way to just get on with it. I am happy and very lucky that I have this available to, most people aren’t.

 

Thanks for reading. Drop me a message bellow if you like, I’ll get back to you ASAP.

Cheers,

Anthony

An Epilepsy Dry Spell

This is a bit of an odd post to write. I normally write blog posts about how something quirky and uniquely epileptic has happened. Or someone has outraged me beyond belief etc. The thing is that this time it isn’t the case. I have a pretty mundane 9 months epilepsy wise. Which is why I have chosen to update my blog and start again. But for me it poses one question. Why have I had a such a good (but not seizure free)period of epilepsy?

I did an investigation into the whos, the whats and the whys- strangely they are similar to epilepsy prevention methods, funny that.

I hold a regular 9-5 job in a business which fully understands epilepsy. They make themselves better by finding out more.

I take my medication regularly, sticking to a 12 hour cycle. I have no idea if this makes a difference for me, but I feel better about it.

I do drink, but not too much. I can share a bottle of wine with my other half and feel as normal as the next person. I supposed that is what it is about. Being and feeling normal and enjoying it.

I don’t get stressed anymore. I only worry about the things that I can control and so do the people around me and my loved ones. In addition to this my life is safe and secure and moving forward happily, so aside from the concerns of life in general, I have one less trigger to worry about.

I also lost weight, and went bald. These made no difference to my epilepsy but I lost a serious amount of hair!! 😉

I still have partial seizures but I manage them one at time. They don’t weigh down on me like they used to. A lot of this has to do with having someone that helps me to pick myself up and move on, this comes in the form of my fiancee Jo. She sees me, and not the seizure.

I consider myself very lucky to have all of these things, and I certainly am not going to count my chickens before they are hatched. As I will never be seizure free, just that managing them seems to be getting a lot easier.

 

Many Thanks,

Anthony

 

Triggers are blindingly obvious… once removed.

I don’t know what it is like for anyone else so I won’t even hazard a guess when it comes to seizures triggers. I can only now speak with some vague confidence about what my own triggers are. However this confidence appears to be short lived as the more I think about it, the more I second guess myself so I better get this typed up pretty sharpish.

I have just come off the back of a three month, yes THREE MONTH seizure free period. I literally forgot that, a) I have epilepsy and b) I am waiting for epilepsy surgery. My short term memory revolves around the Wunderlist app and funnily enough seizures and surgery aren’t on their.

I have never gone this long, seizure free, in my life. Just to give you an idea of how long that is for me, here is a list of things that fit into this period of time.

1) You can give notice on commercial waste removal via a local authority, I know this isn’t the best example but for me its topical and right at the front of my mind.

2) When I worked as a teacher, I could have gone the whole first MARATHON term seizure free, although this is unlikely :S

3)Mercury would be able to complete one whole orbit of the sun.

4) You can make 1/3 of a human baby, at least one stilton and a whole puppy (isn’t that cute).

So after this unusually long epilepsy holiday, I think I can narrow down my triggers. There isn’t anything special in there or weird. It is simply fatigue, stress and of course a tumour.

The odd thing is that, within this three month break is I have managed to move home and completely uproot myself. It has been a stress riddled and tiresome time like no other. Yet this has been interpreted by my brain as far less stressful than anticipated. I have taken this as a win on my part. As a result of this I am holding out for the seizures to come as fall out. If they do, no problem, these problems few months have been pretty good. If they don’t, its a bonus.

The odd thing is that I have experienced considerably less stress and had seizures as a result. There are clearly more factors at work that I just can’t understand and don’t have my head around.

Thanks for reading. Please email me with any questions, I will get back to you 🙂

Anthony

I failed an appointment but all is not that it seems.

I am a strong advocate if the National Health Service (mainly because it has kept me alive this long), however last weekend my patience was tested to the limit. It was not a one off either. This is the second time something like this has happened.

Wales played Australia on Saturday in what I have come to believe is now just a ceremonial display of the same game of rugby replaying itself over and over again, and we actually pay money to endure this misery. As I walked through the front door, I was greeted with the ever familiar postmark of my local health board. I was actually quite excited as I was waiting for an MRI scan date as part of brain surgery investigations, exciting stuff. So I opened the letter. But all was not was not as it first appeared. Not so exciting stuff.

I did recognise the letter as it is a format that I come across in work. It was a failure to attend letter. This is where I started to smell a rat, mainly because in order to warrant receipt of a letter such as this. I would have needed to have received and appointment on the first place, which I didn’t. I had been waiting for the letter for MONTHS and MONTHS so as you can imagine my surprise when I saw the you are no longer invited to my party, letter it came as quite a shock.

Following my steaming hell rage, I read the letter in its entirety and established that, there was no accountability being taken for the letter. As it wanted me to go back to the Dr that referred me in order to correct their mistake. I thought on this for a moment, and was somewhat unsatisfied. I then thought, maybe I can improve on their procedures… If I made a mess in your house (lets say at a party), how would you feel if I said, yes, in order to fix this you need to get the guy in charge of organising the entertainment to clean it up. As you can imagine, he would not be happy with this, and the home owner would be somewhat bemused by the arrangement.

So I called the Radiography department. Not my Dr (it’s not’s their mess to clean up).

Firstly, I found out that the phone number on the top of the letter was for the WRONG department…. Brilliant, smoke and mirrors. Luckily a helpful person gave me a bundle of numbers to call if I didn’t have any luck. I still have these numbers :).

When I got through to them, they were very helpful. However, something screamed MANAGEMENT FAILURE. The lady I spoke to told me a number of letters had gone missing. These were not acted on, however they did send out the failure to attend letters for those appointments, and push the people who had been waiting months to the bottom of the queue as well as make their figures look swell. This an incredibly cynical statement and may be wildly inaccurate when applied to waiting lists (please excuse my imagination making ideal world statistics, if this is the case). But it is accurate in representing how I felt at the time. The fact remains that the the letters were never sent, and that then becomes the patients worry. As if we haven’t got enough to worry about.

Incidentally, I wanted an appointment so I did’t say any of these things. My appointment was very quickly remade, however I do not like how administrative decisions could drastically impact clinical decisions and timing.

The moral of the story, go route 1. Go back to the place who wrote to you. Try not to let them move you on or back, especially if they made the mistake.

I had my scan last night. Which like always was handled with military precision and world class care. It’s as if the NHS functions despite the horrendously flabby layers that have been put upon it. Well done NHS. 🙂 You still nailed it, but just send letters properly.

Holiday insurance… debacle

It was just about time that I booked some holiday leave and go on away. I didn’t go on holiday at all last year and to be honest I could do with a break or an enforced stop. So I went online and booked myself a holiday away for 10 days.

So with the flights and the hotel booked there is one important thing that I had to remember to do before I could go away. That was to book holiday insurance.

Now I’ve done this before and in the pass this hasn’t been a problem; so why would there be this time?

In fact I would go as far as to say as it was a doddle. An absolute doddle!

For the record my epilepsy is well controlled, I do not lose consciousness, it is caused by a DNET tumour which was removed partially in order not to damage my vital brain function (you know, little things like spacial awareness, moving, looking in the right direction this will turn out to be a crucial detail). I have not been hospitalised since I was 7 years old. I am 31 now.

So I began my search.

Try 1. Confused.com’s pre existing condition insurance search (I have to admit, it is a bit of a mouthful).

The questions covered the basics, what was the nature of my pre existing condition and the details of it. The quotes ranged £1200.00 £1600.00.

This is 10% more than the cost of my holiday. Needless to say I did not walk through door number 1.

Try 2. Insure nGo. Epilepsy Action do offer a discount with this company however epilepsy action make it clear that members are subject to Insure n Go’s policy’s, and the two are very much separate companies.

I found that (after a bit of probing) Insure n Go would not cover me for travel insurance. I went through all their questions. Answering honestly, because I can’t afford not to. When they sent me their quote they had not marked an answer to a question as I had stated. So I called them back. After receiving a quote of £256.00

The question was. Was all of your tumour removed. They only had the choice of yes or no. So in my case I answered; “no, as much was removed as could have been done in a safe manner”. They marked it yes. The last time that I checked, yes was the opposite of no. This was an important detail for me because I wanted cover for a brain tumour.

On speaking to them they told be that if I answered no, then they would not be able to cover epilepsy. To which I replied, “you won’t be covering a lot of people with epilepsy then”. The scary thing was we both knew that this insurance salesman would have been quite happy to send me off on holiday with what was effectively a void policy and meaningless piece of paper. But hey, he would have got his commission and I would have been left responsible for the inaccurate (I am being kind here) questionnaire marking.

To his credit and my persistence they sent it off to the underwriters. No doubt for them to come back with an astronomical quote for a low risk person. The message that they will be trying to tell me with the quote will be, go away! So my search continued.

Try 3. AllClear travel – Full cover £247.00 🙂 N0 fuss. Seriously it was that easy for me. I filled in the online form and I got a realistic cover for someone who has a brain tumour sat in their head. I was happy with that, very happy in fact.

From my experience of finding travel insurance I am genuinely concerned about the possible number of people who have existing conditions and taken the time to get appropriate cover. Yet they are sold inappropriate coverage simply because a yes or no answer is interpreted in favour of the salesman’s monthly quota. Also there could be a number of people who travel abroad not even knowing that their insurance is inappropriate.So my advice would be ALWAYS re read your quotation questions and how the questions have been answered, even if this means you have to pay a admin fee to get a copy. Without doing this I would not have spotted sneaky Joe’s “mistake”.

Also, the git from one company said “its your choice of you take the policy”. I thought about this as was I was on the phone to him and told him quite directly that it wasn’t a choice if the company’s policy is to cover all or nothing. So by looking at the definition of a choice we certainly do not have one. Oddly the twerp did not have an answer for that. Maybe his computer said no.