Market Town : Simon – Living with Epilepsy – Brave New World

The last few months have been a tumultuous time for Simon. His seizures, both Nocturnal and Atonic grew in  frequency and severity resulting in numerous injuries. As a result his visits and stays in hospital increased. His medication was constantly adjusted to try to tackle a situation spiralling ever out of control. Through it all Simon was stoic and strong, refusing to let his epilepsy beat him.

“I went to the Norfolk and Norwich (Hospital) because I had a really bad seizure in bed, I didn’t know I had one but my next door neighbor heard me and phoned my Dad up and my Dad said “Just press the red button on the alarm system” so they did and the ambulance crew came up and then I went to the hospital and I didn’t know anything about it.”

“I was really out of it and they asked me a few questions when I woke up “Do you know what your name is” and I could answer that and then they asked me “Do you know where you are?” and I said “No, not really” and they explained I was in the A&E department of the Norfolk and Norwich and that they had rushed me here because I’d had a bad accident and while treating me they discovered I had pneumonia, which I knew nothing about. They had to keep me in for about three and a half weeks.”

“I was put in three different wards when I was in there. The doctors and nurses really looked after me whilst I was in there. Some people reckon that doctors and nurses do not take care of you but I said when I came out, on my laptop, I wrote this, “I don’t care what people say about nurses and doctors people should take more notice of them and about the N.H.S as they are so kind and they take really good care of you.”

“When I came out they gave me a walker because I could not walk properly, I had to stay at home till I got better. When I was in the hospital and resting at home I really  missed my work at Dorrington House (A care home for the elderly) and I missed all the residents and the staff. Now I’m back at work I am really happy.”

During one of Simon’s visits with his local GP his doctor informed him of a procedure called V.N.SVegas Nerve Stimulation or Vegas Nerve Therapy and proposed the option to have a small device implanted within his body that could reduce, even cease his seizures entirely.

“If I stopped having fits I’d be so happy because my friends would say “Well done!, you did all that the doctors said, had the V.N.S in, gone through all of it and you’ve been taking your tablets and look how long you’ve been having fits, you started when you were three and now you’re finished having epilepsy!”… that’s if I have finished. My Mum and Dad and my whole family would be really happy too. I could go out more and not worry about anything.”

“At night I dream about epilepsy. I wonder in my dreams what I’ll do if I have a fit. I had a dream about wondering what it might be like when I have the V.N.S done, will I be scared?. I said to myself in the dream “Don’t worry about it Simon, you can get through it. Just be a man and don’t be worried.” and that’s what I reckon I should do. I guess I’ll just have to find out when I have it put in.”

V.N.S Therapy is not brain surgery. The therapy involves a minimally invasive procedure, which is typically performed under general anesthesia by a surgeon. The procedure takes approximately one hour and patients usually go home the same day. Typically, two small incisions are made – one in a natural crease on the left side of the neck and one in the left chest area, below the collarbone. The generator is usually placed under the skin in the left chest area. A thin, flexible wire connects the generator to the left vagus nerve in the neck.  The procedure is completely reversible.

The vagus nerve carries messages between the body and the brain and when stimulated helps to prevent electrical irregularities that cause seizures. V.N.S Therapy is automatically delivered by the implant at regular intervals all day, every day so that the user does not have to worry about missing a dose. If need be, the user can also sweep the hand-held magnet over the generator to send more impulses to the vagus nerve. This could be when a seizure is starting, or when a seizure occurs. A carer, or family member, is also able to use the magnet, if they witness a seizure taking place. V.N.S Therapy is not a drug and, therefore, does not have the same side effects and does not interact with other medications.

“I’m a little bit nervous but I am looking forwards to it. I’ve never had anything like this before. The operation will take a whole day, going in my neck and the wires going into my chest, the battery. They will set a time after it’s in to turn it on. I will be a little nervous. When it’s implanted I shouldn’t really know anything about it at all, not until a seizure comes on but now I’ll have some warning so if anyone is near me I can let them know I am about to have a seizure and they can put me in a chair or lower me to the floor.”

“Another thing I found out, animals can have V.N.S too, dogs and cats!. I’ll still have to take my tablets, it will not interfere with them. On the video it said it will hopefully get rid of my seizures and I’ll keep it in for life.”

“My doctor asked me if I wanted the V.N.S put into me and I said “Yeah, I do” because if there is a chance it can help cure my epilepsy I want it because this last year I’ve been having so many fits, been in and out of hospital so many times. I might as well have it done instead of wasting the hospitals, the doctors, nurses and the ambulance mens time. So it’s worth a try isn’t it?”

“Before I found out about V.N.S I thought it was just going to carry on, my fits and drop seizures because I was just forever taking tablets and more tablets and my fits were getting worse and worse and I was just going to have to have support by carers as I do now forever. I did think that one day one of my drop seizures might kill me because one day I had one in the middle of the road and a car hit me. Luckily they and some other cars stopped and someone called an ambulance and I was rushed to the hospital again.”

“I must have had thousands of drop seizures and really any one of those I could have fallen onto something or in front of something that could easily have killed me. If anyone else is like me what I would say is and I’m not forcing them to but go to your GP and have a word with them, ask them about the V.N.S and if they have a leaflet there have a read and find some more about it like I have or Google V.N.S to learn some more.”

The small scars from the two incisions typically fade over time and become minimally noticeable for many people. The most common side effects of V.N.S Therapy include temporary hoarseness/changes in voice tone, coughing, a tickling sensation in the throat and shortness of breath. These side effects generally occur during stimulation periods and typically decrease over time.*

“On the twenty first of March I went into the Norfolk and Norwich hospital, I had to go in at five thirty a.m. as it’s a 24 hour job and have an operation to have my V.N.S put in. I stayed in overnight and couldn’t have anything to eat or drink all I could have to drink was a little bit of water to take with my tablets. There were some other people there that had the same operation as me. There was one gentleman there that was there who had already had his V.N.S put in already and he had a sandwich and a coffee and was saying “Ahhhh this is a lovely sandwich and a lovely coffee!” and we were saying “Oh, shut up!” just because we could not eat or drink anything.”

“The nurses said “Don’t worry it’ll all be over and done with soon.” So when it came to my turn I got taken into the operating room on the bed and they explained what was going to happen and told me “We are going to give you a tablet and you’re going to drift off to sleep and we’re going to put the V.N.S in.” Watching the DVD helped me with my nerves as I could see what it was all about before hand so I was not as nervous as I thought I was going to be. Now the V.N.S has been put into me it’s left a few scars on the left hand side of my neck and my chest.”

“When I got home immediately after the operation it was quite sore, especially if I bent over or turned my neck but now it still hurts a little bit. Now it’s the 6th May and I had to go back to the hospital and saw the doctor there and he said “In five minutes we’ll be turning the V.N.S on for the first time and you may choke a little bit or lose your voice for a little while but it will come back, it will only happen for around three seconds each time.” It was unusual the first time after it was switched on (Simon coughs) like just now, every five minutes it switches on and I don’t know if my voice just changed but that’s when I’m choking a little bit, it’s a side effect of the V.N.S switching on. It’s just telling me there’s a little pain in my neck and it’s sort of like kicking in to my neck and then going away just after a few seconds.”

“Last year was the worst ever really, especially at the gym when I had a seizure and fell off the treadmill and cut my head open, then the time at work, then my hernia, then the pneumonia. At least I was willing to go back to the gym, to try again, I had the guts for that at least.”

“Hopefully the V.N.S will stop my seizures completely. I still have to take all my tablets but together they might work. That will make me much happier. Before, I could not go on holiday all by myself, I’ve always had to have someone come with me. I’ll have a chance to be more independent. I’ve been a slave to my epilepsy, I hope I’ll have my freedom.”

“At the beginning I hated my epilepsy, I was just three when I started having fits and drop seizures and now I’m forty four and it just carried on and on and on. I’ve got my own place to live in, I’m single and now I’ve had the V.N.S implanted and today turned on what I’m hoping for the future is that I might get a nice girlfriend, as they say there’s plenty of ladies out there!. I’ve got a job but if ever wanted to I could get another one and also that it will allow me to go on holidays more or go out in the evenings more.”

“I’ve got more chance of meeting someone if I’m able to get out a little bit more by myself. I don’t drive a car and I’ll never be able to but now I might be able to get to the city at night and maybe go to some of the nightclubs, now I might be able to get the bus alone or stay in a bed and breakfast. I’d just have to remember to take my tablets with me. It would be great to meet a nice lady. I’ve been on my own for quite a while, about fourteen years. It’s not hard I suppose, I get used to it and I have a laugh with my friends, they look after me but it’s not the same really.”

Another of Simon’s hobbies is karaoke. He practices at home and sings in a local nightclubs karaoke evening when well enough.

“My mate Andy, his nickname is D.J Donkey and he does karaoke everywhere but mostly Dereham. About three years ago I’d never done it before but he said “Go on Simon, give it a go, I’ll help you if you get stuck, I’ll put a nice slow one for you” and he did and I thought “I love this!” so I went up and said I wanted to sing another song. From then I really got into it. I thought to myself if I’d started at an early age I might have been good enough to sing on the TV for a show like X- Factor but it isn’t going to work now is it? I’ll still sing slow songs not the fast ones. I like duets like ‘Summer nights’ from the film ‘Grease’ very much.”

“I keep practicing the same songs over again and again. I’ve not been able to go for quite a while but there is this one song I can sing without even looking at the words and that’s ‘Imagine’ by John Lennon. I also like singing ‘Always on my mind’ as it always makes me think of other people, people that might be homeless or have epilepsy.”

“I don’t know what happened. It was night-time and my neighbor was outside and heard a noise that must have been me and my front door was locked and I had my keys in the door so he phoned the ambulance people up. The police smashed my window, you know how they break into doors, really rough, they had to do that and climb in the window. They found me on the floor and I was right out of it then the ambulance came and they asked me the usual questions. I’d been sick on the floor, cut myself when I fell so I was taken up to hospital and kept in for a day and had to have an x-ray on my neck as I damaged the bones when I had the fit. I don’t know what I cut myself on.”

“It’s the first fit, well, bad fit anyway since I have had the V.N.S. I’ve had smaller ones but only in bed. The was the first one as bad as this. It’s been working alright and the new medication is working ever so well but to have this bad fit is a real shame. It’s been helping, the V.N.S I’ve had to swipe it a few times, to kick it in to control seizures and it’s worked. It does affect my voice, makes me sound a little different.”

“I’ve got to go back to my doctors for a checkup and to have the unit turned up a little, you can change its settings if it’s not working in the way you want. It’s stopping seizures for sure. When I go back to the doctors I’ll need to tell him about my bad fall and that’s when he’ll turn it up a little bit to try and stop every seizure from happening. They might adjust my medicine again to get them working together.”

*Patient’s Manual for Vagus Nerve Stimulation with the NeuroCybernetic Prosthesis (NCP®) System, page 27. Produced by Cyberonics, October 2000.

V.N.S Therapy presentation video @ Vimeo.

Epilepsy Action advice about V.N.S Therapy and stimulation.

If you require any further information regarding epilepsy Epilepsy Action is a great online resource.

Advice on how you should help if you’re witness to a person having an epileptic seizure

Link to more stories about Simon

About the author: J A Mortram (b.1971) has been exhibited, awarded and published for his work documenting marginalized people in East Anglia, United Kingdom within the documentary series Small Town Inertia. See more on his blog site here and his tumblr site here.