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of everyone affected by epilepsy

Seizure TV

15 June, 2007

I went into my bank to pay in some money when I began to feel disoriented and dizzy and a strong headache came on. It was obvious what caused it. There was a big flat-screen television over the counter.

I quickly made my transaction and walked out before I had a seizure. Maybe the technology used in digital television is a particular problem for people with photosensitive epilepsy. I wonder if the television has been a problem for any other readers?

MonitorWhen I got outside I began to feel better. Although previous tests have hardly shown anything, my epilepsy still lets me know it’s there. Fortunately, I can usually control it with a good dose of fresh air.

- Ian, Sheffield

Editor’s note: A large television of the type described here is likely to be a plasma-screen or liquid crystal display (LCD) television. Usually, these televisions prove less of a risk to people with photosensitive epilepsy, since their screens do not flicker in the way a regular television screen would. However, they can often be brighter and show images in high contrast. This could prove a risk to someone who was particularly sensitive to colours or patterns. It is important to remember that, aside from any flickering on the screen itself, the risk of a seizure depends on exactly what is shown on the television and how close you are to the screen. If you are unsure, contact the Epilepsy Helpline on freephone 0808 800 5050, or check the information on our website.

Heather lacks the drive

I refer to issue 83 (June 2007) of Epilepsy Today and specifically to the My Story article.

We always find these items interesting, but feel that here there is a potential for confusion. While Heather admits to continuing to have some absences, the photo on page 21 could lead one to believe that she is a car driver.

My son has been trying to eliminate his periodic absences for some years. He well knows that it is illegal for someone to drive unless they have been seizure-free for a minimum of one year.

Meanwhile, we all wish Heather and her family well.

- Mr and Mrs Foot, Surrey

Editor's note: Heather’s My Story article was largely focused around what Heather saw as her loss of independence when she was diagnosed with epilepsy. The photographs Heather chose to illustrate her article reflected that. They showed her doing the kinds of things that she was unable to do after her diagnosis, such as travelling to America and driving her car.

Epilepsy Today has no wish to mislead readers. We would emphasise that anyone who has been diagnosed with epilepsy must surrender their driving license and may only reapply for it after a minimum of one year without an epileptic seizure or a pattern of sleep seizures only for three years.

Aloe veraAloe again

In response to the letter on page 15 of June 2007’s issue of Epilepsy Today about aloe vera.

In 1992, I started having seizures and was diagnosed with a benign level 2 brain tumour. In 1997, I had surgery, as my MRI scans were showing that the tumour was changing and my seizures were getting more frequent. Thankfully, the tumour was removed with no problems. Unfortunately, I continued to have seizures about once a month.

I take 700mg of Tegretol retard and 1500mg of Keppra every day. When I first started taking these drugs, I felt extremely tired. I had no energy, which is a usual effect of AEDs. I also found that I kept being ill. I kept catching colds and flu. I was also run down and had a digestive problem causing bloating in the stomach. These are both problems that can be brought on by a weak immune system.

Three years ago, I came across some natural products that changed my life. I started drinking a very high-quality aloe vera juice and after just eight weeks the benefits I experienced were staggering. My energy levels shot up by 300 per cent.

The first thing I noticed was that I was getting up much earlier, going to bed later and having much more energy throughout the day. My stress levels went down, as well. I noticed my complexion starting to look really clear and glowing. My friends and family were complementing me and asking me what I was doing or taking. The icing on the cake was that I was not getting colds or flu any more, or very rarely (and if I did, I shook it off very quickly).

I feel so great now. There is natural help out there, which can work alongside prescribed drugs and may even help with side-effects.

- Anita, Milton Keynes

Sad news of SUDEP

I just read the article about Vicky Johnson in Epilepsy Today. My own experience is quite similar to that of her parents and the circumstances of Vicky's death.

My wife died last March. I found her sitting on the toilet slumped against the radiator. Helen had had a series of seizures during the previous sixteen hours. I was told she might have died from SUDEP. At the inquest we were told SUDEP would have been put down as the cause of death until the pathologist found signs of myocarditis, so he put that on the death certificate. I have never really had an explanation as to why she had the seizures or if they caused her death.

Like Vicky's parents, I found that you are left to your own devices. I did see her epilepsy nurse, who gave me a leaflet with the details of Epilepsy Bereaved on the back. I contacted them, but at the time I was not sure what help I needed and the information they sent never arrived.

I did however have the good fortune to attend a conference in Leeds run by Epilepsy Action. During the afternoon there was a workshop on SUDEP by Epilepsy Bereaved. I have been in contact with them ever since and have also become an active member as well as benefiting from their support of bereaved families.

I have a son who has epilepsy. He is also one of the children affected by sodium valproate. I mention this as Helen (my wife) was changing tablets at the time in order for us to have another child. I found out after she died that you are more at risk from SUDEP when changing tablets. We were not told of this when she agreed to try the new tablets (Keppra).

As you can see my case is not clear and illustrates how the inquest process can leave you with more questions than answers.

- Andrew, by email

Seizures and side effects

I am a 34-year-old woman that has had uncontrolled epilepsy from the age of 18 months. I also have several other conditions including cerebral palsy and spina bifida. I am now getting to the point where I can't take any anticonvulsants because I suffer with chronic side-effects. I already have the vagal nerve stimulator (VNS) system.

Please can you tell me if there is anybody else who has the same problem with their medication?

- Name and address supplied

Photo copyright: www.istockphoto.com/Anutik

PollutionPolluting my mind?

My son has epilepsy and his My Story feature appeared in Epilepsy Today some years ago. Our family’s efforts to reduce his seizures eventually led us into conflict with Great Ormond Street, which resulting in their offering my son the Johns Hopkins ketogenic diet. To a certain extent, this worked.

A further reduction in his seizure frequency was achieved by detoxifying him of heavy metals such as mercury and lead, by using methods that were introduced to us by Dr Greg Ellis in Philadelphia, USA. As a result I have always taken an interest in pollution and where it comes from.

I wonder if Epilepsy Action ever considers that pollution is possibly a cause of brain injury leading to seizures? The bread we eat, the air we breathe and the water we drink is toxic to one degree or another. All of our bodies are being compromised and have to work hard to eliminate these poisons.

Medication, surgery and the ketogenic diet are the main tools used to reduce seizures, but I wonder if more comprehensive results can be achieved by solving the pollution problem.

- Ralph Connor

Negative charge

I have temporal lobe epilepsy, and I have noticed that on many of the patient information leaflets enclosed with medications (other than anti-epilepsy tablets) that epilepsy is portrayed in a very negative fashion. Under the 'special precautions' section of these leaflets, I have noticed how often the question asked is, 'do you suffer from epilepsy?' It is odd that you can 'have diabetes' or 'have mental health problems'. Why is it that epilepsy is always given this negative twist?

Obviously some people with epilepsy do suffer quite badly, but why does it always seem that epilepsy must be portrayed as some scary disease that people suffer from?

I wonder how many other readers have noticed this...?

- Joan, by email

Editor’s note: Epilepsy Action avoids using this term exactly because of what Joan has pointed out. To say that someone ‘suffers from’ epilepsy immediately puts a negative slant on the condition and reinforces the stigma that surrounds it.

SurgeonWhat’s the frequency?

I was diagnosed with a brain tumour seven years ago. I had surgery at the end of 1999, followed a year or so later by chemotherapy. Two years later I had radiotherapy. I have epilepsy that stems from some continued activity in the tumour and the scarring caused by surgery, which was necessary to reduce the tumour while taking a huge biopsy.

Since my first and only tonic-clonic seizure (which triggered the investigation), I have had varying numbers of seizures. They are often simple/focal seizures or auras.

I have been through most of the drugs with varying degrees of success and side effects. The main base drug was always Tegretol Retard/carbamazepine. I also tried out phenytoin and sodium valproate among others.

I recently arranged a review with the local hospital and a fantastic neurologist, Dr S U Memon, gave me some options. One of these was to replace the Tegretol Retard with a similar drug – from the same ‘family’, but with fewer side effects.

It is called Trileptal (oxcarbazepine), which has worked wonders for me! Instead of two or three small seizures a day, I have now gone 12 days without any seizures and 52 days with only a blip caused by an upset tummy, stress and lack of sleep (this led to three seizures in one day). Instead of recording my daily seizures in my diary every day and figuring out my totals for the week, I am adding an extra day to the number of seizure-free days I’ve enjoyed!

The other benefit is that I can slightly modify the dose myself and I no longer need regular blood tests to check the levels as I did with carbamazepine. There is no target range!

As you might imagine, I am very pleased and looking forward to a better future. I hope this is of some interest to other readers!

- Ian, Kent

Controlled diet

I believe I developed epilepsy after an accident on holiday while on a banana boat. After the accident, I started having nocturnal seizures, which ended up becoming four to five a week (and that’s with medication).

My medication was not working for me, so I decided to take this condition into my own hands and sort it out. I changed my diet completely, changed social habits (such as going to the pub with friends) and started regularly training in the gym four or five times a week.

That was 10 months ago. I have not had one seizure since then. I was regularly having seizures, and since I’ve started exercising regularly and changed my diet, not one seizure. I'm not saying this would happen to everyone, but it definitely worked for me.

- Steven, Bury