Epilepsy Traveller

For those who don’t know; uncontrollable epilepsy is when the seizures cannot be stopped completely with medication or surgery. I had a video telemetry earlier on this year hoping to be able to have surgery. When the results came back my neurologist said the epilepsy is effecting all of my brain, so I am not a candidate for surgery and have uncontrollable epilepsy. I have seizures daily; whether it be Tonic – Clonic (if I miss my medication) or quite simply partial ones, where my brain “hiccups” in effect. It feel like I’m dizzy or have a headache. I sometimes even groan a bit. I find this certainly doesn’t make my life easy; not having 1 day where my epilepsy doesn’t interrupt me. I take AEDs (Anti Epileptic Drugs), but they really only control my Tonic – Clonic seizures, I still have partial seizures. I just live in the hope that one day I can be seizure free

So today I did the same usual stuff; got up, had a shower, got dressed etc. Went to work for a 7am shift. Got to work early, so grabbed a coffee along the way. I started my shift and all of a sudden I was getting this double – vision, which I was worried about, but also this had happened before and nothing came about, so I wrote it off. This then turned into a sense of feeling like I just wanted to pass out, but believed it was all in my head. Even tried giving myself positive thoughts, which seemed to be working, but it got up to the point where basically I was just going to collapse. I work in a warehouse and in the morning forklift trucks are around, so I quickly got to the front and told one of my colleagues who helped me into the office. They aI asked my managers to call the emergency services but they said it had been similar other times and they called my next of Kin. As it goes in the end I was feeling better when I had a sit down, but they wasn’t feeling what I was feeling. It really felt like my brain was ready to explode. If I had tried to fight it anymore I really do believe I would have gone into a full blown Tonic – Clonic seizure

I was in need of one of my medications the other day, so as I normally do I went on my app to order my medication (I order my medication electronically). As we all know the waiting time is 48 hours, so 2 days later I went to the chemist and he said he didn’t have it. I’ve had these kind of issues before, sometimes the chemist just not having enough. I went back to him the next day hoping he had re-stocked but he told me again he didn’t have it. Decided to wait a couple of days and thought that would be plenty of time for him to get more, but still no joy. I was thinking I would try one more time before trying the hospital (even considered using a different chemist from now on). When back to him and asked if he had it because I was on my last few days worth but unfortunately he didn’t have it. I asked if I was able to have the prescription to give to the hospital/another chemist and only then found out there was a whole shortage in the UK. Turns out it’s all to do with Brexit and this “No Deal” business that is stopping Epilepsy medication coming through. Apparently it’s been going on all year as well. Luckily my chemist was eventually able to give me a similar medication but it now makes me worried and even more determined that the UK has a “deal” Brexit. I didn’t even ask for Brexit

*Update* (21st August)

Ordered some more Epilim because I was running out of the “substitute” medication. Luckily this time I got it back first time (hooray!). Also worried about how much I had because I have 2 trips coming up, literally back – to – back. I needed about 47 days worth but turns out it ain’t enough. Luckily after the first trip I’m back home for 12 days, so should be enough time to order some more. Fingers crossed this medication crisis is over

I’ve just been listening to a podcast where Fran Turauskis, founder of a website called Seize Your Adventure (a combination of epilepsy and adventure) interviewed some people and asked them what they knew about epilepsy (link is https://seizeyouradventure.com/2019/06/11/podcast-adventurers-talk-epilepsy/). Only 1 out of the 3 people actually knew what epilepsy was, which got me thinking that a lot of the time people dont know about epilepsy unless they have it themselves, or have known someone who has epilepsy. So I have decided to explain a few things about epilepsy. Hopefully this can spread epilepsy awareness.

Epilepsy is a neurological disorder which involves a person having seizures. Epilepsy can be brought on by head injuries, but most of the time the reason is unknown. There are over 40 different types of epilepsy, which include Generalised Epilepsy, Photosensitive Epilepsy, and Myoclonic Epilepsy.

There are also various types of seizures, with the most common one being Tonic – Clonic, where the person loses consciousness and has muscle jerking. These seizures can last about 5 minutes and is recommended you perform first aid or call an ambulance. Causes can include stress, sleep deprivation, and not taking medication. Other types of seizures include partial seizures where the person does not lose consciousness but can be a sort of disorientation. I have these seizures and when I have then it can feel like dizziness and a headache rolled into one. I always say it feels like my head is a drum and someone is beating it.

There are also what’s called “auras”. This is a feeling that happens before a seizure comes on (so more like a warning sign). These can include dizziness, headache, deja vue, and smell. For me I always get dizzy before a seizure comes on, so I always try to rest my head when I get that bad feeling.

There are a few myths about epilepsy, one being that it is contagious where this is certainly NOT the case. Another one is that everyone with epilepsy can have a seizure from strobe lighting but that is only true for people with photosenitive epilepsy. It is also untrue that people with epilepsy can swallow their tongue.

Epilepsy is a chronic illness. There is no cure, but if the epilepsy is only effecting one part of the brain surgery can be performed to help remove it. 1 in 103 people in the UK have epilepsy and 1 in 26 people in the USA suffer from it.

I hope this has given you a bit more insight into what epilepsy is. For more information go to:

Epilepsy Action: https://www.epilepsy.org.uk (UK foundation)

Epilepsy Foundation: https://www.epilepsy.com (USA foundation

At the beginning of the year I had a video telemetry done. It was over 3 days and the aim was to record my seizures to see what they look like, what causes them, which part of the brain they are coming from etc. Usually on day 2 they encourage you not to take your medication to force a seizure but for some reason (unbeknown to me) I had a seizure about a couple of hours after it started. I also had quite a few partial seizures throughout, so on day 3 they let me go home early because they said they had gathered quite a lot of data.

I got the results back after a month when I next saw my neurologist. I was told that from what they gathered that they could see that my epilepsy is effecting all of the brain, so surgery couldn’t be the next step (which I was hoping could be an option) seeing you can only have surgery if it effects only part of the brain. My neurologist suggested swapping one of my three medications I was taking for a medication called Lacosamide. I was a bit wary of this at first seeing I had been put on different meds before but neurologist said about increasing every 2 weeks, including the dosage in the morning/evening, so it sounded like it was going to be be better organised this time so I agreed to it.

First couple of weeks were ok, with me feeling dizzy here and there, but got the feeling my body just needed time to get used to the medication. One day I had a seizure at home. I quickly told my housemates (who know I have epilepsy) that I wasn’t feeling well. One of called the ambulance but by the time they came it had passed. The paramedics checked me over and I told them I was feeling ok and I didn’t want to go to hospital (I don’t like going to hospital that much because it always ends up with me being there at least 3 hours). Usually when I have a seizure or feel unwell I’m like “ok, I’ve had a seizure, we just have to move on” so that’s I felt.

The only problem is the next day I felt exactly the same way as the day before. It was this sort of dizziness and headache rolled into one. Sometimes if I lay on my bed it can pass but it just wouldn’t and had to let my housemates know again. The same happened; felt alright by the time the paramedics came and I didn’t go to hospital.

The next day I went to work and a seizure ACTUALLY did happen and my manager called for the ambulance and I went to hospital. I told them about the meds swap, so seemed to be the likely cause and I went home. I was going to go to work the next day but when I got up it felt like one was coming on, so had to call in sick.

It was basically a non – stop daily cycle. Even had a second seizure at work so I went to the hospital again and said I had about 10 consecutive days of seizures so the hospital told me to come back the next day. When I did I saw a doctor and the dosage of one of my other meds was increased. This made me have one seizure free day after an agonizing 10 days but then had another one. I increased the dosage of Lacosamide and had 7 seizure free days, so it looked like things were getting back on track but then I had another seizure.

Was hoping it could be another 7 seizure free days but had another 2 days later. This time it was while I was walking to my sister’s house. My head was getting the “pounding effect” and I sat down on a ledge to wait for it to pass but it wasn’t. Luckily a lady passed by and asked if I was ok. I said I wasn’t and that I was epileptic. She started ringing the ambulance but I was getting better, so didn’t need it in the end. She asked me the address of my sister and she kindly gave me a lift to my sister’s house. She even let my sister know what had happened. I thanked before I went in my sister’s house.

So this is where we are up to now. I had given my epilepsy nurse a call and she said I need to keep on the plan of increasing my dosage. I haven’t got up to the full dosage let, so hopefully things will be better when I do. The only ironic thing is that I’m taking more milligrams of this medication than the one I swapped it for. Makes me feel like this isn’t a stronger medication and wonder why my neurologist wanted me to go on it.

It’s National Epilepsy week in the the UK so I went to a talk hosted by Fran Turauskis, founder of Seize Your Adventures (https://seizeyouradventure.com) who really inspired me. She is someone who brings adventure and epilepsy together (being adventurous while having epilepsy) and does podcasts about adventurous things.

The talk was about people who were doing physiologically demanding sports (some with epilepsy, some without).

One lady talked how they did a 100km run. She showed pictures of when she did it, and explained all the do and don’ts of how to go about it if you wanted to do it yourself; like definitely give plenty of time to train for it because she said she rushed it a bit, have nutritional snacks, and do it with friends.

After a video was shown of a guy who had set up an organisation called “Outdoor Mindset” (and how he liked biking) another guy talked about biking across Tanzania. He did it with an organisation and had anxiety, so he was worried about camping with someone who getting eaten by lions but in the end he had nothing to worry about.

Another video was shown of a lady with epilepsy who lived in Texas who liked doing Stand Up Paddle Boarding (basically standing on a kind of surf board and rowing on it). Another lady then talked about how she did Stand Up Paddle boarding across the Thames. She said she wasn’t able to do it at first but with a few E – mails and face – to – face inquiries she was able to do with the right safety measures. Apparently she even coaches Stand Up Paddle boarding.

I went to this event because I have epilepsy myself and I like a little bit of adventure, so it certainly was an interesting night. The speakers’ intention was obviously to inspire and they did exactly that. Never heard of stand up paddle boarding before, so certainly something I would like to try. The speakers of running and biking got me thinking too, so all in all, a good night

I was first diagnosed with epilepsy in 1993 at the age of 10. It was in a recorder lesson while at primary school. I was rushed to hospital and told I had epilepsy with Grand Mal and Petit Mal seizures (now called Tonic – Clonic seizures and absent #seizures ). And was started on Tegretol. As the years went on my seizures wasn’t getting any better so was also put on the liquid version of Epilim (don’t know if you can still get it but it looked like Calpol). Later on also put on to lamotrogine and with a change to Epilim tablets that is what I take now.
Went through the whole of my school life with epilepsy and even had the odd seizure at school. I remember one seizure where I was in the playground and while having the seizure everybody was looking at me. I had a special needs teacher who would help me study throughout my school life though.

At one point I wanted to go on an Africa tour and needed a doctor’s signature. I was first turned down and almost gave up, but I e – mailed the tour company to ask how they would help my needs. They said they would be able to help me so I showed my doctor this and was given the go ahead. So even with epilepsy you should never give up on dreams.

As time has gone on my seizures have become less frequent, but never been seizure free. Longest amount of time has been 9 months without a Tonic Clonic seizure, though I have at least 1 absent seizure per day. My average is 1 Tonic clonic seizure per month but otherwise controlled as long as I take my meds.

Recently had my Lamotrigine swapped for Lacosamide. Was upping the dosage every 2 weeks seeing that’s what my doctor talked about and I was getting more because I think my body was getting use to the dosages. I saw my epilepsy nurse about this and she said usually the dosage only goes up if I have a seizure, so I could have misunderstood my doctor when put on this new medication and she told me to stick to the dosage now, so hopefully my body can get use to it now

In my opinion; I have 3 different seizures:

Tonic – clonic; also known as grand mal seizures, these are the kind of seizures that can last for more than 5 minutes and can also include jerking of the legs. From my perspective, I lose consciousness and while it is happening I may see someone who is looking at me, but it is very vague, like in a dream state. When I gain consciousness sitting down somewhere is the best and having a drink of water. My mind will still be a bit hazy. You could say I would be like a computer rebooting itself.

Partial seizures – these are not as bad as Tonic – Clonic. They are seizures that can last less than 5 minutes, perhaps even seconds. For me; I always tell people that when these seizures occur it feels like someone is shaking my head, or beating a drum inside my mind. It’s just something that comes on and goes off again but I can’t control it when it happens.

The third type is something that I consider a seizure but technically it isn’t. I get “auras”, which is something that happens before the seizure starts, so it essentially a warning sign. The aura I get is a sense of dizziness. Every now and then I get dizzy, which I know a seizure is coming on. The unusual thing is though sometimes I can have this dizziness, which can lead to a pounding headache, but if I can relax my head, or have a drink of water the dizziness/headache can ease off. This happens every so often which I why I consider it a seizure

So what I have found is people with epilepsy talk about their meds, so I will do a post about it. I take Tegretol, Epilim, and Lacosamide.

I was diagnosed with epilepsy at the age of 10 and the first medication I was put on was Tegretol. I started off at 100 mg morning and evening but over the 25 years I have had epilepsy it has been increased and now on 400 mg morning and evening. After a few years of my diagnosis I was put on Epilim. Originally it was a liquidized medicine that was like calpol (not really a medicine I enjoyed taking). I eventually got onto tablets of 300 mg, where I took 2 in the morning 2 in the evening. Lamictol (also known as Lamotrigine) was later added on and I was put on 50mg morning and evening.

In 2017 my neurologist changed my medication. The Lamotrigine was swapped for Keppra. I was put on 250mg morning and evening. My doctor wanted to “try something new”. It only made matters worse. I went from having a seizure once a month to once a week! It got to a point where I refused to take the medication, so I told my doctor and was put back to the Lamotrigine.

I’ve recently had a video telemetry and by the results my neurologist changed my Lamotrigine to 100 mg of Lacosamide. I also had a couple of seizures in 1 week (which was unusual for me), so my Epilim was put up to 600mg in the morning and 800 mg in the evening. Hopefully things will get better