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Epilepsy, my blessing in disguise

(click here for help and advice on epilepsy, click here for a detailed guide to all epilepsy drugs)

CLICK HERE TO READ ABOUT HOW I REPLACED MY ANTI-EPILEPSY
PRESCRIPTION DRUGS WITH ORGANIC MULTIVITAMINS!

 

Do you have something that you want to say about Epilepsy? Add your message by clicking here

I was 16 years old when I was first diagnosed as having epilepsy. For a couple of months I'd been experiencing "dizzy spells" several times a week, during which I felt as if someone had muffled my senses. My vision became blurred, my balance went wobbly, and I was unable to say anything that could be understood.

These episodes would last for perhaps 10-15 seconds - most of the time those around me would notice absolutely nothing, except that occasionally I may stop talking mid-sentence.

It was in the autumn of 1994 as I was studying for my "A" levels at the Hereford Sixth Form College that I stayed over at a friend's house. That night I didn't sleep at all well, and the following morning I felt very strange when the alarm clock went off. It was a little like those times when you wake up from a vivid dream and it takes a few minutes to reassure yourself that the world you've been in was only a dream. Also, my tongue hurt as it had never hurt before. I was confused, and so asked Jo who'd been sleeping in the bunk above me if she'd noticed anything during the night.

"Yes" she told me. "At one point you made quite a lot of noise and started thrashing about- but then you just went back to sleep."

I told my mum and dad about this, and they immediately recognised the signs. There was a history of epilepsy within the family, my mum's sister Veronks (she doesn't like being called "Auntie" and I don't blame her, she's far too young for that!) has had epilepsy for much of her life, whilst the stress of wartime bombing raids took their toll on my Grandmothers health. Also, at the age of 6 I'd had a few "dizzy spells". Tests at the time showed nothing unusual but a few "adult brain waves", and after a couple of months I was back to normal without any treatment.

I don't pretend to be an expert on the medical/ technical side of epilepsy, but what I write is what I understand to be the case. The brain is essentially a vast network of minute electrical contacts, and every second electricity is flowing around making and breaking these contacts - This results in all of our actions and everything else that makes us Us. In my case excessive stress or tiredness usually brought on a seizure, although with some people it is things such as televisions or flashing lights that set them off. A seizure is a result of an electricity storm within the brain, during which hundreds of "short circuits" occur and there is a complete loss of control of bodily functions.

Having spoken to consultant after consultant I now see that the major problems for those with the condition is not the epilepsy itself, but the social issues that go with it. The first is that your driver's license is revoked for a minimum of one year, as mine was, three days after I'd received it through the post just after my seventeenth birthday! The second is the stigma attached. Not many people are clued up on epilepsy, and some even believe it's a terrible disease, which leaves people fitting uncontrollably every other minute! Not so, as you can see in my case. I only succumbed to this social pressure once by withholding the information on an application form for a job in a Supermarket - I was sure they'd reject me out of hand if they knew the truth. I have since learnt that the only person who had an issue with it in that situation was myself, and I have never felt the need to lie about it again. All in all it didn't take me too long to accept my epilepsy for what it was, and in fact I decided to feel that I was special rather than worse off than others.

My condition had lain dormant within me for 10 years, and was triggered (I believe) by the immense stress and pressure that I felt when I started to attend the Sixth Form College. My education at the Waldorf School had, on the whole, been an immensely positive experience. I had come to learn and understand so much- and now I was faced with an education system whereby the method seemed to be to cram as much information into your head as possible and spit it back out on paper in an exam. On top of this pressure came that from the Careers Advisors. I felt that I was expected to decide upon my entire life's vocation within the space of a few months. I was to go to university, get my degree and settle down into a 9-5 where I would stay until I reached retirement age. Having scrimped and saved for almost fifty years I would move with my wife Ethel to a little bungalow in Bournemouth where I would eventually die old and happy. Of course it doesn't really work like this, but that's what I felt was being demanded of me, and so I began to rebel.

The problems really started for me when I was put on medication to control the condition. There was always the danger of seriously hurting myself should I have a seizure anywhere but in bed, and it's common practice these days to prescribe a drug which will calm the brain when it's heading for an electrical overload. The unfortunate thing is is that you never know which of the drugs is suitable for you until you try them, and they can have very bad side effects as the first one that I tried ("Tegratol") did.

Tegratol really changed my life - although initially it just changed my personality! I became very very bad-tempered. I felt so tired, and lost my sense of humour entirely. This coincided with my first-year exams, resulting in what became a completely untenable situation. I just couldn't handle life at all. I was referred to an epilepsy specialist in Birmingham, but whenever I had an appointment he was too busy to see me. Instead, I saw nurse after nurse none of whom had a clue about my case and insisted upon hitting my knee with a hammer time after time. Thankfully, after one month or so my medication was changed to Epilim (sodium valproate), and I found that my true personality gradually re-emerged. Meanwhile, I'd had enough of the NHS (National Health Service) and enough of my mystery consultant- I simply decided to get on with my life, take the tablets I was prescribed and look no further into my condition. It turned out that the centre I had been referred to was shut down shortly after my last visit - and I'm not surprised!

I concluded that in fact it was just myself that was stopping me from realising my ambitions. I desperately wanted to leave college, and I'd long had dreams of travelling, yet it took a lot of courage to completely turn my back on my life's plan and routine as I knew it. However, with the additional craziness that the epilepsy had created I was given that final boost needed in order to write the word "Fish" a number of times on my Theology exam paper, stand up, and walk out of college - out of my formal education.

I truly feel that had I not had epilepsy I would be a very different person today. As it was, my condition led me to question the path that had been laid out before me, in addition to giving me the strength needed to challenge societies rules that I felt were binding me so strongly. Had I not had epilepsy, who knows, I may well have gone on to university and obtained a degree in a subject of marginal interest to myself. Perhaps I would have secured a position within a company that promised lots of money, for at that time that was what appealed to me most - although I'd never admit it! Would I have gained the freedom and happiness that are now such a large part of my life? Would I feel that anything was possible, or would I have just accepted that that's the way things are and I should look forward to a happy retirement?

These days I'm not even sure if I still have epilepsy - that's the thing, you can't stop the medication in case you have a seizure, but you'll only know if you don't have it by stopping the drugs anyway! I was very fortunate to see a top specialist a couple of years ago. Rather than hit me on the knee with a hammer this chap just wanted to talk. Talk about my feelings regarding my condition, my history, my hopes and my dreams. His feedback finally gave me the professional blessing that I felt I needed in order to set me free from what until that time had been a medical problem. He told me that from hearing about my history and my feelings now I probably no longer have epilepsy. He reassured me that I was perfectly capable of handling it myself, and that I could gradually reduce the dosage of my Epilim until I either reach a significantly insignificant amount, or perhaps quit altogether.

Today I am taking only a tenth of what I was originally prescribed, and I aim to come off it altogether by the end of 2003. We'll just see how it goes. I do not enjoy having to take artificial drugs, yet I accept that it's necessary. The side effects these days are more or less limited to ensuring that I'll be totally drunk on one bottle of beer. However, I have a little suspicion that they are also partially responsible for my rather crazy nature at times. I guess that none of us will know the real Joseph Tame for a few years yet.

At the end of the day I'm very thankful to have had epilepsy, it has made me feel special, and at times when I've felt weak its given me the strength to break the rules that can hold us all back. Epilepsy was the key to my freedom, and for that I am eternally grateful.

Epilepsy and I - An update - Winter 2003/2004

In February 2003, after 8 years of no seizures, my epilepsy reappeared overnight.

I was in Japan at the time, just coming out of an incredibly stressful period of my life that had lasted for about 6 months. Initially, I refused to accept that the "dizzy spells" were epilepsy. Surely, they couldn't be, not after 8 years of having no seizures whatsoever. I'd spent all of that time gradually weaning myself off the drugs, and was finally down to 200mg of Epilim Chrono a day. I'd been on that dosage for over 8 months, and was planning to give it up altogether within a few weeks.

Being in Japan, it was not so easy to get it checked out, and besides, I knew that I'd be returning to England soon where I could see my regular doctor. So, I ignored it. Within two weeks of the first "dizzy spell" I was having over 10 a day. In the March 2003 edition of The Daily Mumble I wrote:

"Generally, I can tell when I'm going into one of these spells - my head will start to feel mentally tired (hardly surprising when it is has to be responsible for me all the time). My sight then slips off to the left or right, away from whatever I have been focusing on. I've noticed that I can be looking at pretty much anything for this to happen, whether it be a computer screen, a street sign, a blank wall or the back wheel of the bicycle in front of me - i.e. it doesn't seem to be triggered by light. There then follows 5 - 15 seconds of general confusion. I can't focus my eyes - yet I feel that this is not actually a physical problem. Don't ask me how or why, but I kind of feel that my eyes are physically focused, but my brain is somehow scrambling the signals when processing them. It's all very strange.

I feel that if I wanted to, I could simply force myself to snap out of these spells (as one can snap out of a daydream), but, for some reason I am very reluctant to try this. Once again don't ask me how or why, but I feel that if I was to force myself back to reality rather than letting whatever it is run its course, I would somehow damage my brain, kind of like a power overload. Having had/as I have epilepsy I am only too aware that the brain is simply a delicate network of electrical contacts, a network that can easily bwecome agitated by stress etc - I don't want to push my luck. By the way, none of this is based on scientific theory - it's merely how I think and feel." read the full entry here

Eventually I did go to my local hospital, where a very kind Japanese doctor prescribed more of the drugs that I was about to run out of. I incresed my dosage by four-and-a-half times, from 200mg to 900mg. Within a week the "dizzy spells" numbered only three or four a day - two weeks later they were gone altogther. This naturally confirmed that it was epilepsy - it was still with me, subdued by the medication.

It is now Winter 2003/2004. I have not had a seizure since last March, and once again plan to slowly cut down on the medication - a process that will probably take many years. Judging by the events last spring, it's likely that I'll be able to ever come off it completely, but we'll see.

So what caused the return of my epilepsy after 8 seizure-free years? The doctor's can't tell me, but having spoken to a friend who has had the condition for many years I have an idea that it was stress related. In the months leading up to the re-occurence, I was really stressed out due to a turbulent relationship. When that relationship began to settle down, so I relaxed. What has been suggested is that at that point my body said, "OK Joseph, you've been holding it together in order to get through the hard times, now you can relax and let it all out". It was only then that my body allowed the epilepsy to show itself. It kind of makes sense really.

Despite feeling pretty peed off when I realised that it was back, I now don't really mind at all. It's just a part of my life, a part of me.

Epilepsy and I - An update - May 2005

In May 2005, after 10 years without a tonic clonic (Grand-mal) seizure, and over two years since a minor seizure, I woke up concussed, with a bitten tongue, limbs that felt as if they'd been torn from their sockets and bleeding feet.

The following is an extract from my online diary, The Daily Mumble (15th May 2005)

I had rather a traumatic night last night. It involved

1) our flat being burgled (I heard the burglary but failed to grasp what was going on)

2) I had my first tonic clonic (epileptic) seizure in over 10 years last night whilst asleep, resulting in

a) a harshly bitten tongue

b) toes bleeding due to a lack of skin due to prolonged rubbing against bed frame

c) 4 limbs that all feel as if they have been dislocated

d) prolonged concussion. I couldn’t think at all, didn’t know what was going on, but eventually realised, called mum and dad who called NHS Direct who then called the paramedics for me! Two ambulances turned up within minutes! They took me to A & E where I was checked over, and despite superficial injuries I should be ok, but I have to take it easy.

great timing, what with exams next week.

I’m absolutely wiped out, despite having slept all afternoon. Limbs weigh an absolute tonne.

I really never thought I’d ever have another tonic clonic seizure. off to see my GP tomorrow to discuss upping my medication.

uurrrrgh

4 hours later...

Crikey it must really have been a big seizure. I'm so glad I was unconscious whilst it was going on!

What really confused me, as if I wasn't confused enough already, was when I woke up this morning my feet were bleeding (as I mentioned above). Now, there's nothing sharp near the end of my bed, just a mattress (which incidentally extends all the way up my bed!) and the smooth wooden bed frame. Imagine how long / how hard I must have been seizuring to rub the skin off completely - and we're talking foot-skin here which tends to be quite durable.

I'm pretty sure I dislocated the tendons in both of my shoulder joints. My right shoulder has a history of slipping out, and the way it feels now matches that exactly. The left has been ok until today. Once you have done it once though (and stretched all the bits involved) it's more likely to happen again, which is probably why, to my great astonishment, my left shoulder popped out this afternoon!

I've also hurt my lower back, and my head is still thumping away.

This is all a major pain in the bum, especially with an essay due Wednesday, an exam Thursday, another exam Friday, a third exam the following week and a final exam the week after, oh, and then ten weeks in Japan.

Probable causes for this seizure:

- sleep deprivation. I was up very late on Friday doing all my homework (bed 3am ish), and was then woken by the phone at 5.30am. Then yesterday i was in the library until 2am-ish, stuck in front of a computer for 12 hours. Once home, I went to bed, but was woken at about 4.30am by my flat-mates who had discovered that we had been burgled. After about an hour of sorting that out with the police and security, I went back to bed - and it would have been then that I had my seizure.

Coupled with a lack of sleep has been the stress, associated with exams, and more recently returning to Japan. It's been a recipe for disaster really.

UPDATE July 2005 : After my seizure my Epilim dosage was increased from 500mg to 700mg a day. This made me feel very sleepy and unable to concentrate. After about 3 weeks, I reduced my dosage again to 500mg a day. The seizures stopped.

UPDATE September 2005: Following a seizure-free 3 months, my epilpsy returned in the form of up to 40 petit mal seizures a day. Possible triggers: the tiredness and stress resulting from my returning to the UK from 8 weeks in Japan. I increased my Epilim intake gradually, until I reached 1400mg a day, and the sizures stopped.

UPDATE January 2006: My epilepsy remains controlled on about 1500mg daily of Epilim Chrono. However, if I get very tired or stressed I can feel my brain attempting to have a seizure, which is then prevented by the Epilim. I know that I have to look after my body - early nights and stress control are the order of the day!

UPDATE January 2007: I can now control my epilepsy on 700mg daily of Epilim Chrono. "Dizzy spells" are a rarity. Getting enough sleep is an important part of my self-imposed management program, as is eating healthily. I've found nutritional supplements (vitamins, minerals and protein powder) to help too.

Despite the return of Epilepsy to my daily life, my feelings towards my having the condition remain unaltered:

Personally, I never really think of my epilepsy as an illness. I tend to think of it as just a part of me, something that helps me look after myself, by making me only too aware that my body cannot be used and abused, and that I need to look after myself.

In the past it has helped me in this way a great deal. For example, when I was still a teenager and tempted to take drugs such as Ecstasy as some of my friends did, it was Epilepsy that gave me the strength to say no. Now I am a university student (albeit a rather old one having entered 9 years after most of my classmates) it helps me say “no” when someone asks me if I’d like another beer (I’m already on the floor having drunk half a shandy!!). It is epilepsy that helps me feel it’s ok to go home to my nice warm bed at midnight when all my friends are trying to persuade me to stay up until the wee hours, despite having a 9am class. It’s epilepsy that has brought it home to me just how important it is to not take your body for granted, and so who knows, epilepsy may yet be responsible for extending my lifespan by another decade or two! And of course, as stated on my website, it was epilepsy that enabled me to make some life-changing decisions back in my late teens, decisions that to this day I am enjoying the benefits of.

I think if we look at how epilepsy has effected us and those around us, it is always possible to see some positive outcomes.

 


Epilepsy and I - An update - 7th June 2007

The update I never dreamed I'd ever be able to write!

How I replaced my anti-epilepsy drugs with organic vitamin and mineral supplements

[DISCLAIMER: everyone is different, and everyone's epilepsy is different, thus what works for some may not work for others. I am not a medical doctor and I do not recommend that you stop taking your anti-epilepsy drugs without consulting your doctor. ...although they'll probably advise you not to do what I did, as they often receive very little training when it comes to natural vitamins].

The following text is taken directly from my blog, The Daily Mumble.

Eight days ago, I wrote about the spate of seizures I'd been having following the Trailwalker event (link to that post). I couldn't think of any changes in my lifestyle that might have brought it on - except for the fact that I'd stopped taking my organic multi-vitamins. I vowed then to ensure that I didn't miss a single dose, and to see whether this effected my seizures.

Well, I must say, the results have been absolutely remarkable. I have hesitated to write it here until now as I could have just been having a lucky couple of days - but now I have no doubts. Within 72 hours of starting back on my vitamins (a combination of vitamins / minerals / phytochemicals / additional Vitamin B complex), my seizures stopped.

What impressed me even more was that the weekend saw me in Prime Seizure Mode - that is, a Friday night with no more than 15 minutes sleep (on the bus), Saturday concentrating in Japanese all day, and then after that a party with rather a lot of alcohol which went on until 3am! I was then up about 4 hours later for another full-on day, which only came to an end at about midnight after the journey back to Tokyo. If I was ever going to have a seizure, that would be the weekend to have one!

Up until today, I had never heard anything about the possibility of using vitamins to help control epilepsy from anyone else. It was purely through looking back on my own experience that I came to think that there may be a connection - thus I am more than satisfied that this is no case of the placebo effect.

Tonight though, it did occur to me that others may have found relief this way. A quick Google Search on Epilepsy and Vitamins revealed that yes indeed, they had. A lot of people. Why has this possibility never been mentioned to me before by any of the many specialists I have seen? Possibly because the sad truth is that Doctor's in the UK get virtually no training when it comes to vitamins & minerals - hard to believe, but true. They don't do "staying healthy", they're only trained to pick up the pieces when everything falls apart - something which I think they do a very good job of (except when it comes to epilepsy...!).

This is, of course, great news for me. I loathe taking those purple tablets that work against my body's natural functions, and are possibly damaging my liver. They're also a pain in the arse when it comes to international travel / living abroad for long periods of time. Here I now have a safe alternative - in fact not only is it safe, it's organic too! Of course there's no guarantee that I can stop taking Epilim altogether, but I'm going to experiment with reducing my dosage as I have done in the past (that's how I got down to 700mg from 2000mg).

13 years of epilepsy and no-one ever mentioned this possibility. Extraordinary.

I guess it didn't help that my own attitude towards nutrition & supplements was not all that great. The thing with supplements is that it's very unusual to see any sudden change resulting from their intake - so how do you know if they're making a difference?! I appreciate now that this is flawed thinking, especially nowadays. After all, if you exercise for one day you are unlikely to see a direct result - but over time the difference made to your health can be remarkable.

I have also always been somewhat suspicious of the synthetic vitamins on the shelves of Superdrug. I mean, how do you know what's in them? I learnt something else recently too (thanks to my sister):

[A] primary difference between real full-spectrum whole-food vitamins and synthetic vitamins is that real vitamins contain the essential trace minerals necessary for the vitamins' synergistic operation. Synthetic vitamins contain no trace minerals and must utilize the body's own mineral reserves. Ingesting real vitamins does not require the body to deplete its own reserves of nutrients to replace any nutrients missing from the false vitamins.

[link]

(Oh, something else I learnt the other day: vitamin C is actually white, but came to be thought of as yellow or orange due to the colour of the glue used to stick the supplements together!)

It's only been in the past year, talking to my sister (a qualified nutritionist) and other friends who have studied nutrition for several years that I have started to appreciate just how important it really is.

Whilst I would never recommend that anyone reduced their dosage of or stopped taking their prescription meds without consulting their doctor first, I would encourage others with epilepsy to at least try upping their intake of vitamins (B complex in particular), and see whether or not it helps.

This is a tremendously exciting discovery for me, and I will of course keep you informed of the progress of the experiments I conduct upon myself!

UPDATE: August 2007

I have now been off my anti-epilim prescription drug (Epilim a.k.a. Sodium Valproate) for just over a month. I now take 4 organic multi-vitamins a day, and 2 - 4 organic Vitamin B complex supplements (I take four on days when I have not slept enough as tiredness is one of my triggers).

For more info please email me.

- Do you have epilepsy?
- Have you had problems with Epilim or Tegratol?
- You are not alone. Please feel free to share your experiences with me.

email me

Need help?

http://www.epilepsy.org.uk/

Visit the homepage of the Britsh Epilepsy Association
for information, advice, email and phone support

If you are in the USA go to http://www.epilepsy.com/

For desciptions of major anti-epilespy drugs
and their side-effects, see bottom of page

Emails from fellow Epilepsy folks!

- I will never publish anything you send me without your permission.
All names etc have been changed for reasons of privacy

Hi Joseph,

I was surfing around trying to find information on epilepsy and I came across your page. I found it very inspiring so wanted to thank you.

I used to have epilepsy. I got it when I was 12, had 5 seizures (mine is set off by strobes/ computers more so than anything else) and then, as you are, I started slowly coming off my medication. What a joy, I am 25 now and for the past 6 years I was able to get on with life, not a sympton, nothing, well...until recently.

I had 2 dogs set on me, thankfully I was unhurt, but I was petrified and I believe it has brought on my epilepsy again. For a few weeks I put it down to shellshock haha cause I didn't want to be 'epileptic' again - You know that 'feeling' you get before you have a seizure...it's so hard to describe to other people...well I was having it all the time so reluctantly I went off to the docs and had a great wee chat and back onto the good ol' tried & tested epilim.

I have been soooo tired these past few days, must be the medication kicking in, but I know its for the best. I have my driving test at the end of the month and fingers crossed I won't actually take a seizure cause then its back to the 'ban'.

Well I just wanted to say thanks, you have made me feel less of a 'freak'. I honestly am embarrassed which isn't right, as you say, it's the other people who have stigmatised it....At least in this day and age we won't be burned at the stake haha.

Thanks again, Amy

 

 

Dear Joseph,

I hope you are well, what a fascinating website.

Last September, at the age of 62, after a night disturbance I was given Epilim. Having had many tests (which unfortunately took nearly a year to complete) the consultant prescribed Epilim, "just as a precaution".

I was happy being on Epilim, but because of the appearance of some heavy excessive bruising two weeks ago, I was told by another consultant that I should stop the Epilim and change to Tegretatol.

This I did, and then last Friday I started feeling poorly. Yesterday morning one of my daughters happened to come to my house and she noticed that I was turning yellow. She took me to see my GP, who took several blood samples. The result? Tomorrow I am having to be admitted to hospital. Something tells me Tegratol has had an adverse effect on my body.

Did I need this? I don't think so.

I hope to hear from you soon,

Best wishes

James.

 

 

Dear James,

I am so sorry to hear of the problems that you have been having, and I do hope that your condition is getting better. I have never heard of someone over the age of 50 being diagnosed with epilepsy. I think that I was quite typical in that I was diagnosed in my teenage years. Were you under excess stress at the time of the night disturbance?

I must say that I was very very angry with the NHS with the way that they treated me. I saw so many consultants, all of whom had conflicting opinions, and none of whom seemed to have any real idea what they were talking about. I used to have to travel to a clinic in Birmingham, which has since been closed down by the government, where I never actually saw the consultant who my case was assigned to (a doctor Spillane, I still remember the name after 8 years), I only ever saw junior doctors who would hit my knee with a hammer and such rubbish. The waiting for appointments and test results meant that the entire ordeal lasted for many months. I lost all of my faith in the NHS and then society in general, which, when combined with the horrific side effects of Tegratol led me to quit my formal education forever.

Tegratol or Epilim? Well, for me it's Epilim. Eight years after the diagnosis I still take it every day, although my dosage is very low (200mg daily as opposed to the 2g a day I took at the age of 16). I have no side effects, although I do believe that it has made me more emotionally vulnerable. Oh, and I get drunk on just half a pint of beer! When I first started to take Epilim I did suffer from extreme tiredness and irritability, but that passed after a couple of months.

When they put me onto Tegratol it was absolutely horrific. I felt that I was losing my mind. I could not cope with anything, my personality completed changed drawing complaints from college, my employers and friends. These symptoms disappeared when I went back onto Epilim.

Having said that, I have some good friends who's story is exactly the opposite of mine. Epilim wreaked havoc on their bodies, whilst Tegratol suited them very well. At the end of the day it seems that the only way to find out is to try them both. The other option of course is surgery, although that should only be considered in extreme cases. Let's hope that there is a significant breakthrough in the treatment of epilepsy in the future, as at the moment it all seems quite haphazard.

One of the worst aspects of Epilepsy can be the stigma attached to it. Even now, not many people understand what it is, likening it to diseases such as Leprosy! I must admit though that attitudes are changing for the better. For example, this year when I took out my annual travel insurance policy, I was informed that the insurance backers no longer required me to declare that I have epilepsy, and that it will not affect claims in any way. Employers are also not at all concerned, unless of course your job involves driving. The stigma is, in my mind, completely unnecessary, and if you do not treat the condition as a contagious disease then those around you will not either.

Regarding my drivers license (which of course I had to surrender for one year), I now have to renew it every three years. It is simply a case of filling in the appropriate form and returning it to the DVLA, with a new license issued with no further questions asked. Having said that, I haven't had a seizure for 6 years so of course there should be no problem.

I entirely understand your feelings of anger and frustration. I felt the same.

But, Epilepsy is NOT a fatal disease, and things WILL get better. There is always light at the end of the tunnel. Personally, as I described on my homepage, I feel that my epilepsy was a blessing in disguise. Although at the time it was horrific ("Why Me?"), I am now grateful to have gone through those dark times, for ultimately it has changed my outlook upon life for the better.

I am thinking of you as you go through this difficult time, but have faith, you will be OK. You are certainly not alone as many many people share our condition.

Joseph.


James has since emailed to say that thankfully the allergic reaction that he had to Tegratol was not permenant, and he has now made a good recovery.

 

Here's Robin and Parker's tale of their experience with epilepsy:

 

Joseph,

Hello, I am really happy I decided to do a search on this "newer" drug for my son, "Tegratol." My son who is going to be 7 in April, has been on 3 different drugs so far for his seizures. All of them have had bad side effects on him and what use to be a wonderful happy personality.

I am having such a tough time, and he has been having so many problems in the first grade with math and memory.

The neurologist put him on "Neurontin" first which was like he was in the Twilight Zone, then he was on, "Zonegran" which was no better. Now this Tegratol! Ugh! He says he just wishes he could feel normal again. That makes me feel terrible!

I am in Southern California and I am not sure what the difference we have in health care, but if you have any suggestions I would love to hear them.

Thank You for sharing your story with all of us in www land. I look forward to your response.

Sincerely,

Robin

 

Dear Robin,

I know what you're going through!

It really is so difficult, those first few weeks, month and in some cases years when the doctor's are trying to find the right drug for someone when they've being diagnosed as having epilepsy. I felt so angry, frustrated and played-around-with by the UK health system. The doctor's didn't seem to have a clue what they were doing. My happy personality disappeared overnight when I started to take Tegratol. Those really were dark times, but I got through them. As you saw from my article online, it was Epilim (Sodium Valproate) that finally helped me. I have been taking it every day now for the past 9 years, and my hope is to come off it completely this spring, as I believe that my epilepsy has now simply "faded away".

I want to reassure both you and your son at this difficult time that things WILL GET BETTER. It seems that with Epilepsy, it is nearly always necessary to go through this game with drugs and side-effects at first, but, the doctor's WILL find the right drug.

At first, I felt a little stigma attached to having epilepsy, but I soon decided that actually I was "special" rather than "strange". Please reassure your son that as his epilepsy has been diagnosed when he is so young, it will not be a problem for him in later life. He WILL feel normal again. I used to feel just like he does now, but after a little time (a few months) life got back to normal. He should not worry about the future, but simply try and be strong. He is not the only one. There are millions of people in this world who have epilepsy, and we can all help to reassure one another that it does get better, that it will not last forever.

I strongly advise you to contact your local / national epilepsy support group. I'm afraid that I only know of the one in the UK, but there will be one in California too. Contact them. They can offer you a lot of advice and support, and let you know that really, you are not alone and nor is your son.

Finally, please know that I am thinking of you and sending you supportive thoughts. Please tell your son that it WILL get better, and that an English boy with Epilepsy who is now living in Japan is thinking of him right now. Life is tough at times, but in the end he will be a stronger person for the challenges that he is now facing.

Take care,

Joseph In Japan.

Dear Joseph in Japan,

Thank you so much for your quick response and kind encouraging words. When my son wakes up I will share your email I know it will help him not feel alone and so different. I can tell you once he hears you are in Japan he will be very excited, as he loves Japan and it's people. I think he would love to live there so he can be near the people who invented SUSHI! He is a nut for the stuff and blows all the people at the restaurants away with how much this thin kid will eat! What made you choose to live in Japan? I have friends from college who were students from there, made me want to at least visit. The people are so nice.

I wanted to tell you I would love it if you would share my email with your website. If someone could be helped then it is all worth it.

Thank You for devoting so much time to people like my son and being availible to all of us. I think God has changed the direction of your life to help all of us. We never know how or why things happen in our lives, yet as you said, the bad has been turned into a good thing. I shared this with my son, telling him what you said and he did listen. Now can you tell me how to get a 7-year-old to listen to me. HA! HA!

With Warm Regards

Robin and Parker

from Jenny

Joseph

Thank you so much for sharing your story and your experiences. I have a friend who has epilepsy and has found it very difficult to come to terms with his diagnosis. Recently his seizures reappeared after a long time. After months of continuing symptoms he was finally prescribed Tegratol with the Epilim he was already taking. I have been searching to find some information on the interaction of these drugs and have not been able to find anything, even on the effect of Tegratol on adults until I saw your website. Your information (and everyone’s emails to you) has confirmed for me that Tegratol has some nasty side effects that change the personality and make people really hard to live with! I wish this information was more readily available as it would have really helped my friend. His seizures have stopped since the additional prescription of Tegratol but his quality of life is not nearly as good. I will have to pass this information on to him. I hope there are some other options out there for him so that he can be free of the seizures and not have to deal with the side effects of Tegratol. Again thanks so much for your honesty.

Kind Regards

Jenny

hello Jenny,

I am sorry to hear about your friend’s condition. It can be very difficult, especially at first, to adapt to living with epilepsy.

I have tried to find some information on the interaction between tegratol and Epilim but like yourself, I couldn’t find any. But yes, I have heard of many cases of people not taking to Tegratol at all well, and of course, I speak from experience too.

Having said that, I have also heard that the side effects of tegratol do ease with time, although as you know I never put that to the test as I become so impossible to live with that I was switched to Epilim within quite a short space of time.

It is strange isn’t it – even on specialist websites devoted to epilepsy there is rarely any mention of tegratol’s side effects on the personality of those who take it. But, I know due to the volume of emails that I get on the subject that this is not a rare occurrence. Your email was one of two this this week that I received on the subject.

But, there is always hope. Medical science is continuously progressing, and so let us hope that a better alternative to Tegratol comes onto the market soon. It is hard to know what to suggest other than to bring to the attention of his doctor the fact that the medication is having a serious detrimental effect upon his quality of life, and perhaps try an alternative drug. I assume that they had already tried simply increasing the intake of Epilim? I used to be on 2g daily, went down to 200mg after a number of years, then back up to 1.5g daily when my seizures reappeared, and then back down to a control dose of 500mg daily which I’ll probably stick with for the next decade or so.

Well, I send both you and your friend all my love, and I hope that the situation improves soon.

take care

Joseph

 

Hey there Joseph,

My name is Ruth, you're probably wondering who I am (a name doesn't really cut it when you're trying to figure out who a person is! especially thru email) and why I'm writing you. But I came across your website and just wanted to tell you that your story of dealing with epilepsy is very helpful & reassuring.

i'm still getting used to the fact that i may have a seizure at any given time despite being on medication -- i'm 23yrs old and only last july did i have my first seizure (i've had subsequent ones since then, while adjusting to being on tegratol) and it's been very strange to get used to it. the first time i ever had a seizure was while i was at work. it was nearing the end of the day and out of nowhere i went into convulsions (not surprisingly scaring my coworkers!) and i had a second one in the emergency room at the hospital. I don't remember it happening whatsoever - i totally blacked out. Since then I've had subsequent seizures, tho they haven't been as bad. But I quite often have "dizzy spells" or go in and out of consciousness .. it's hard to explain... I'm aware of what's going on but can't control my actions or speech. Or I'll just wander around in a confused state for any length of time. My doctors have done tests but don't really know for certain what's causing these seizures all of a sudden. For the most part, I don't feel a stigma attached to it, I'm pretty open about the whole thing, what I really don't like is being on the medication. Tegratol makes me very tired, I have very little energy these days and if I don't get enough sleep while I'm on it and have to get up early I find I end up having dizzy spells throughout the day. I'm used to having a fairly busy schedule so i don't know how I'm going to be able to really work while on this medication. Before all this happened I rarely took any sort of prescription drugs and I never even been admitted to a hospital!

But that being said, this "seizure disorder" as my doctors are calling it has led me back to Toronto, Ontario (I live in Canada btw) from Vancouver, BC where I am finding more work opportunities. Had this not happened to me, I dont' think I would have left Vancouver and would not be moving up as I am (at least I hope I am) now. So I also see this as being a blessing in disguise! I just hope I can start weaning myself off of the medication at some point.

I was wondering if you have had any more luck being able to wean yourself off of your medication and how long u think it would take? I almost think I'd rather just take my chances with having a seizure rather than constantly taking these drugs.

Anyway, I hope you're doing well - thanks for sharing your experiences on your site :)

take care,

Ruth

hello Ruth,

well, you're certainly not alone (you're one of two people this week to relate their stories of how epilepsy has affected them this week!)

I'm really happy to hear that you are dealing with it in such a positive light – I think at the end of the day, like you say, it's best to look on these challenges as blessings – I do tend to think that there is a reason behind everything.

I'm sorry to hear of the side effects of tegratol. As you know from my website, I didn't get on with that drug at all, and so asked to doctors to try me on Epilim (Sodium Valproate). The side effects of that are almost non-existent compared with those of tegratol – but everyone is different and what works for some doesn't work for others – but you may like to at least enquire as to whether it would be possible to try something else.

As for stopping taking the drugs, as I wrote on my homepage, I gave that a go a couple of years ago whilst in Japan. I thought that as about 7 years had passed since I'd had a seizure I might be ok, but unfortunately the seizures returned, so I'm kind of resigned to having to stay on the meds. Mind you, as I don't feel any side effects (other than getting drunk very easily!) it's not really a problem – although of course I'd prefer to not have to take them.(also makes being a student quite cheap!) Like you I've generally enjoyed good health and object to putting man-made chemicals into my body! But hey, it can't be helped.

So, I think I would suggest you talk to your doctors about maybe trying something else (such as Epilim) as the side effects of tegratol are clearly having an impact on your lifestyle. I would advise you against stopping taking them though – it was when I did that that I had a seizure whilst driving – not much fun I can tell you!

Well, I send you all my love and best wishes. I hope the sun is shining on you today. (it would be here, but it's night time! hee hee!)

Joseph in England

UPDATE: After several weeks on Tegratol, Ruth found that she was able to adjust to Tegratol, with the side effects gradually waning until she didn't really feel them anymore. Remember, different drugs affect different people in different ways!!

 

Hello Joseph

I was really interested in your life living with epilepsy. My daughter has just been diagnosed at age 14. Was really just out of the blue as she was leaving school one day. She was taken to hospital where she was monitored and had another at ED. She was then admitted overnight and while sleeping about 2.00 while connected to different machines she had another. Was really good that the staff where about to witness this one. She can't remember anything of course.

Nicole was started on Tegratol 200mg one twice daily then was increased to 300 twice a day. She seems to be managing this ok, although is very sleepy and at times I notice not to steady on her feet. She also has a slight rash but doesn't seem to be as bad as I was led to believe it would be.

Nicole has always struggled at school, has learning difficulties and had been diagnosed with ADHD/Touretes...consultant couldn't be sure . She was started on Ritalin 20mg slow release twice daily. I wasn't so sure about her being medicated and held on to them for about a month before trialing them. I didn't even tell the teachers. I was amazed and them too when she was able to settle to a task without being disruptive to others around etc. Ritalin was really a lifesaver for me, although I don't mention to many she is on it as people tend to voice their opinions and find it hard to deal with. It is different when the situation is closer to home.... to me has made a huge difference to her ability to even get on with people.

Last Wednesday Nicole had an MRI, results not obtained as yet....and also will be going for a EEG..which I hope can tell us some things. I wonder if all is connected. My dilemma is should she be taking Ritalin and tegratol at the same time. Would the tegratol do much the same job as Ritalin. I can't find any info on this. Nicole is a short stocky girl and worries me that this drug has increased her appetite, we just need to get her exercising etc to keep things in control. I do notice some outbreaks with her behaviour I don't go back to the specialist until 3rd sept so hope to learn more then...or even have some of my questions asked. Nicole does'nt seem to bothered about all this ..is me that does the worrying for her. She is very young in years more like a 12 year old.

Was wonderful to read of your life etc...Is nice to know there are others out there that care and can pass on valuable info.

I wish you all the best in controlling your epilsey.... I don't mind if you put this letter on the site..The more people know about this illness the better.

regards
sue

hello Sue,

many thanks for your email.

Sorry to hear about the problems that your daughter has been having. It sounds like you are dealing extremely well with what is obviously a difficult situation.

You say "My dilemma is should she be taking Ritalin and tegratol at the same time" - I would suggest that the doctors who are prescribing the drugs would certainly have checked this out beforehand - whenever I am hospitalised or see the doc they always ask me what I'm on and check up on any problems that my epilim might cause.

I hope the MRI results help clear things up a bit, and maybe when Nicole is through her difficult teenage years the epilepsy will fade away, as is often the case.

I wish you and Nicole all the best

Take care

Joseph

 

 

The main anti-epilespy drugs
and their side-effects

(scroll down for drug-by-drug analysis)

This information is taken from The Epicentre website
http://137.172.248.46/

 

The conquest of epilepsy, which really began in the 1930's with the introduction of >Dilantin (Warner-Lambert), has been a triumph of modern medicine. The development of newer medications, especially Tegretol (Ciba-Geigy) and Epilim (Reckitt & Colman) has meant that epilepsy can be suppressed in most patients without serious or annoying side effects.

This is not to say that every patient can be fully controlled, or that side effects do not occur. A continuing effort is being made by international pharmaceutical companies to find safer, more effective treatments for epilepsy. New drugs are not cascading onto the market however, for the high cost of research, development and marketing (About A$150 million for any new drug) is an important disincentive.

How do drugs prevent seizures? Strange to say, most of the drugs used in treating epilepsy today were discovered to have anti-epileptic properties by chance. We have used these drugs with great benefit for years without really knowing how they work. However, a more systematic search for new anti-epileptic drugs is now under way, based on research progress in understanding how neurones transmit impulses to each other, and our increasing knowledge of the structure and function of the membrane which surrounds each neurone.

The messages that one neurone sends to the next, meditated by releasing neurotransmitter chemicals, can either excite the neurone next in line, or can inhibit its electrical activity. The identification of gamaa-amino butyric acid (GABA for short) as an important natural inhibitory neurotransmitter led to a search for drugs which might suppress epilepsy through enhancing the activity of GABA. The drug Vigabatrin is a product of this approach.

Conversely, if the activity of natural excitatory neurotransmitters could be reduced, the epileptic tendency too would be lessened. Another drug, Lamotrigine, owes its anti-epileptic properties to its ability to prevent the release of the excitatory neurotransmitter glutamine from nerve endings.

Epileptic attacks should be suppressed for several reasons. Apart from prevention of injury caused by falling, biting the tongue, etc. in major attacks, frequent seizures impair memory and academic performance. The unpredictable nature of the attacks may have serious repercussions on employment and family life. Moreover, driving is not permitted until it can be shown that a person's epilepsy is under satisfactory control (more of this later).

If there is some doubt about whether a "turn" was genuinely epileptic or not, or where there were special circumstances, and the EEG and other tests are found to be normal, the treating doctor might reasonably prefer to wait without giving medication, to see what happens; in this situation, commonsense in not driving for a period, and in avoiding risky situations must be exercised. However, a second seizure would strongly indicate the need to start medication without any further delay.

The only effective means of treating epilepsy currently available are medication and, in a small proportion of patients in whom medication is not effective, surgery on the brain. Treating epilepsy by "natural" means alone (e.g. with herbal remedies) is ineffective and may be dangerous.

What is a ketogenic diet?

A ketogenic diet is very rich in lipids (fats) and oils, but low in proteins and carbohydrates. This unusually high intake of lipids and oils creates a condition in the body know as "ketosis". The metabolic shift that is created increases the seizure threshold for some. This diet is also calorie and liquid restricted. The Ketogenic diet is mainly effective in children. It requires careful preparation and strict adherence. Although it takes a significant commitment to be successful, many children have greater seizure control with this diet than with conventional (drug) therapies. Some are able to reduce or eliminate anti-seizure medications. >Careful medical supervision is essential when using this as a therapy.

For further information about the Ketogenic diet, see http://www-leland.stanford.edu/group/ketodiet/, a web site that has been created by the Pediatric Neurology Division at Stanford University School of Medicine to facilitate communication between health care providers who are using the ketogenic diet to treat epilepsy.

>Once started on anti-epileptic medication, never stop it unless advised to do so by a doctor. Stopping medication on one's own is likely to produce a series of major seizures, a dangerous condition.


Which Drug to Use

The choice of drug depends on:

The type of epilepsy. Some drugs such as Epilim are active in a wide range of seizures (tonic-clonic, absence attacks, etc.) while Zarontin, for example, is active only against absence seizures.

Possible side effects. For example, Dilantin tends to promote hair growth on the body and face, and should be avoided in women of dark complexion. Dilantin also seems more likely to produce slowing of thought processes including memory than the newer anticonvulsant such as Tegretol or Epilim, which do not usually produce these symptoms.

Anticipation of pregnancy. All anti-epileptic drugs carry a small risk to the unborn child. We will consider this question later.

Other medication. Possible interaction between the anti-epileptic drug and other medication is an important consideration. A common problem is the contraceptive pill - only Epilim appears to be free of significant interaction. Other anti-epileptic medications may make the pill less effective by speeding up its metabolism in the liver, or the pill may repay the compliment by accelerating the removal of the medication from the circulation. This does not mean that Epilim is the only anti-epileptic drug a woman may take when using the contraceptive pill but that the doctor prescribing must take this possible interaction into account.


Can More Than One Drug be Used?

It is generally preferable to take one drug only, since there is a risk of interaction between anti-epileptic drugs. Indeed, some neurologists go as far as saying that any patient taking more than one such drug is being mismanaged.

Others disagree. There are some patients who, despite excellent blood levels of their medication, continue to have frequent seizures. The addition of a second drug may bring control which any single drug has failed to achieve. On the other hand, one can't often justify the use of a third and even a fourth drug.


How Safe are Anti-epileptic Drugs in Pregnancy

There is a small but definate risk of malformations of infants of mothers treated with anti-epileptic drugs during pregnancy. On the other hand, there is an undoubted risk to the unborn child if tonic-clonic seizures are not controlled, for these may cause temporary lack of oxygen. Miscarriage in early pregnancy, premature labour in more advanced pregnancy, and injury are additional risks of uncontrolled epilepsy.

The best available information indicates that malformations are between two and three times more common in infants of mothers who have taken these drugs during pregnancy. As a group, epileptic women's children have a higher rate of abnormalities than the children of non-epileptic women, even if not treated with anti-epileptic drugs, but these drugs do appear to increase the rate at which abnormalities occur.

The main risk is that the drugs may interfere with formation of the nervous system. The brain and spinal cord develop from cells which must first arrange themselves into a tube-like structure. This process of formation of the neural tube seems to be one which may be interefered with by drugs. Defects of the neural tube range from trivial abnormalities of the vertebrae, through to major abnormalities in which there is maldevelopment of the spinal cord with weakness of the legs and loss of bladder control. Neural tube defects include the group of malformations known as spina bifida.

Of course, malformations occur in pregnancies where no drug has been taken - it's just that the anti-epileptic drugs seem to increase the risk.

All three major anticonvulsant drugs (Tegretol, Epilim and Dilantin) share this risk. It is not known which of these drugs is more likely to produce abnormalities. The risk is increased if more than one anti-epileptic drug is taken. It is possible to detect major neural tube defects in the foetus by checking the level of alpha fetoprotein in the amniotic fluid surrounding the foetus, and by ultrasound examination of the unborn child. Unfortunately, these tests do not become reliable until the pregnancy is fairly advanced, (16 weeks for amniocentesis, 18 weeks for ultrasound), so that considerable emotional trauma may be inflicted on the mother in deciding whether the pregnancy should be terminated.

There is some evidence that in instances where there is a family history of neural tube defect, Dilantin is safer than Tegretol or Epilim.

If a woman taking anti-epileptic drugs becomes pregnant, the first question to decide is whether she needs to continue her therapy, especially if the seizures are only minor, or if the last major seizure occurred years previously. If it is decided that there is a risk of major seizures requiring continuing treatment, it is preferable to use a single drug. Whereas normally drugs may be taken twice daily, it is better to avoid blood levels from peaking too high by administering drugs (especially Epilim) more frequently (3 or 4 times a day) in smaller doses. An increase in the total daily dosage is usually required as the mother's size increases. Blood levels of anti-epileptic drugs other than Epilim should be checked regularly (at least when pregnancy is diagnosed, and at monthly intervals from the 5th month onward, and a week after delivery).

There is evidence to suggest that taking folic acid supplements during pregnancy decreases the risk of neural tube defects such as spina bifida. This risk is slightly higher in women with epilepsy so there is very good reason to stress the importance of the supplement. Due to the action of some anti-epileptic drugs, women with epilepsy are recommended to take 4mg of folic acid daily, compared to the 400mcg recommended for women generally.

Finally, don't forget some seizure medications can lead to failures of oral birth control pills.


Monitoring Blood Levels

To work effectively, blood levels of anti-epileptic medications must be maintained within a certain range. If the levels rise too high toxic symptoms (drowsiness, unsteadiness on the feet) may appear: if levels fall too low, epileptic control will be inadequate. Checking blood levels is a vital part of treatment.

It is best to check both the highest and the lowest blood levels of a drug, by obtaining a blood sample just before the morning dose then sampling the blood again 2 hours after the morning dose has been taken. The frequency of blood level checking will depend on how satisfactory is the epileptic control (if the control is good, sampling at 6, or even 12 monthly intervals may suffice; if seizures are poorly controlled, blood samples may be taken daily, or many times a day, in hospital).

It is possible to measure blood levels of every anticonvulsant drug, but it should be noted that in the case of Epilim (sodium valproate), blood levels do not accurately reflect the amount of drug being delivered to the neurones of the brain. With this exception, blood sampling is extremely useful in the management of epilepsy.


The Anti-epileptic Drugs

Anti-epileptic drugs are also known as "anticonvulsant", since they prevent convulsions. We prefer to call them anti-epileptic, because, as we have seen, not all forms of epilepsy involve convulsions. Let us briefly survey the anti-epileptic drugs which are in use at the present time.


TEGRETOL Carbamazepine, Ciba-Geigy Ltd

This is a powerful anti-epileptic drug with a wide range of activity. It is available as white tablets of two strengths (100 mg and 200 mg), and is usually given twice a day (say after breakfast, and then after the evening meal, around 12 hours later). An average sized adult usually requires between one and two tablets (200 mg size, twice a day).

If the dose is too high, the patient may appear to be "drunk", with drowsiness, lack of co-ordination in walking, etc. Reduction of the dose, based on blood levels, is all that is required.

Side effects (unwanted symptoms occurring in someone whose levels are correct) are common in the first few days or week or two, especially giddiness and light headedness, mild nausea, and dryness of the mouth. These usually disappear within a few days. They are less likely to occur if Tegretol is introduced in a gradual way. A measles-like rash sometimes occurs during Tegretol treatment, and in this event, Tegretol must be replaced by another anti-epileptic drug. Serious side effects are fortunately rare. They include jaundice due to liver involvement, and lowering of the white cell count of the blood, resulting in persistent ulceration of the throat and mouth.

The manufacturers recommend that blood tests (full blood count, tests of liver and kidney function) be carried out before starting Tegretol, and that the full blood count be repeated weekly for the first month of treatment, then monthly for the first year.

In practice, Tegretol side effects are usually mild, and disappear within the first week or two. It is arguably the most powerful and useful anti-epileptic drug currently available.

[note from joseph: I note that there is an absence here of any information on the very bad side effects such as a complete change of personality that some people on tegratol (like me!)can get!]

Back to the anti-epileptic drugs menu


EPILIM Sodium valproate, Reckitt & Colman Pharmaceuticals

This is another extremely useful drug with a wide range of anti-epileptic activity. It is thought to act by increasing the brain's levels of the inhibitory neurotransmitter, GABA.

Epilim is presented as lilac colored tablets of 200 mg and 500 mg strength. These should be swallowed whole. It is also available as crushable tablets of 100 mg strength, and as syrup of 200 mg/5ml strength, and sugar free liquid of similar strength.

It is usual to give Epilim twice a day, with meals, with roughly 12 hours between doses. Since blood levels of Epilim are unreliable as a guide, adjustment of the dosage is made according to the patient's body weight, and the adequacy of seizure control. The usual dose range is 20 to 30 mg/kg body weight/24 hours.

Mild side effects, especially nausea and diarrhea in the first few days, are common. A fine tremor of the hands is often noticed in patients taking Epilim over the long term. Weight gain and loss of hair (usually reversible) can also occur.

Very rarely, Epilim may produce acute liver disease, and there have been instances of acute liver failure, some fatal. Small children and infants with serious underlying medical conditions are most at risk. The question of the safety of Epilim has received careful study by Australian health authorities, and its continued use has been endorsed, for it is in practice a widely used, effective, and well tolerated medication.

It is suggested that Epilim be avoided in patients with a history of liver disease, and that blood tests to check liver function and the level of platelets in the blood (sometimes reduced by Epilim) be carried out before starting treatment, and repeated after one month's treatment, and thereafter at intervals of not more than 6 months. Minor abnormalities of liver function are common in patients taking most anti-epileptic drugs, but evidence of increasing abnormality would require substitution of Epilim.

Symptoms of this rare complication of liver failure include severe nausea persistent abnormal pain, jaundice (yellowish discoloration of the skin), severe nausea, weakness and tiredness, and swelling of the face. Any of these symptoms should be reported to the treating doctor.

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DILANTIN Phenytoin sodium, Warner-Lambert

This is the oldest of the effective major anti-epileptic drugs. It is still one of the most potent in preventing major seizures of tonic-clonic and other types, but its troublesome side effects have meant that the other, newer drugs such as Tegretol and Epilim are usually selected instead. Dilantin has a powerful action in controlling seizures, and is very useful as an additional drug where seizures cannot be controlled by one drug alone, or when it is not intended to continue treatment over a very long period (for example, when anti-epileptic drugs are given routinely for a year or two after brain surgery).

Dilantin is presented in capsule form (100mg, orange and white capsules, 30mg, all white capsules), in liquid form (30 mg/5ml strength for children, 100 mg/5ml. "Dilantin Forte Suspension" for adults), and as chewable tablets for children (50 mg, "Infatabs")

The drug is slowly released, so that theoretically it would be possible to take the medication as a dingle daily dose; however, people's memories being what they are, it is recommended that the medication be taken twice a day (e.g. after breakfast, and after the evening meal as a routine). The usual dose for an adult of average size is 3 to 4 capsules of 100 mg strength per 24 hours.

Dilantin overdose produces symptoms similar to drunkenness, with drowsiness, unsteadiness on the feet, etc. Blood levels of Dilantin will indicate the true picture.

Short term side effects of Dilantin are not usually a problem, but side effects developing gradually over a period of years do present serious objections to its long term use, especially as other effective anti-epileptic drugs which do not have these problems are now available. These long-term side effects of Dilantin are the growth of hair on the face, arms and legs, especially in female patients of dark complexion, unhealthy overgrowth of the gums, with a tendency for them to bleed, and mental sluggishness and loss of memory.

If Dilantin is to be taken over a long period, special attention should be paid to brushing the teeth and generally maintaining good oral hygiene. An uncommon complication of Dilantin therapy is the development of an allergic measles like rash, which requires substitution of the drug with another.

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ZARONTIN Ethisyxunudem Parke Davis Pty Ltd

This drug is effective in controlling one form of epilepsy only, namely absence seizures (formerly known as "petit mal"). As this form of epilepsy begins in childhood, Zarontin is made available as a red syrup (250 mg/5 ml) and as capsules (250 mg). The dose required will vary according to blood levels and body weight, the average dose for a child aged 6 years being one capsule, 2 or 3 times a day.

Side effects are not common, but include nausea and digestive upset, drowsiness and sleep disturbance.

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Benzodiazepine Drugs

These drugs have sedative and anti-anxiety properties as well as being anti-epileptic. They are in fact only fairly week drugs against epilepsy, while their tendency to produce sedation and dependency greatly limit their usefulness. In practice, these drugs should never be used as a first choice, but rather reserved for those situations where epilepsy remains uncontrolled despite treatment with adequate doses of other anti-epileptic drugs.

The benzodiazepine drugs include:

RIVOTRIL (Clonazepam, Roche Products Pty Ltd)

FRISIUM (Clobazepam, Hoescht Australia Ltd)

VALIUM (Diazepam, Roche Products Pty Ltd)

MOGODON (Nitrazepam, Roche Products Pty Ltd) The main side effects of these drugs are sedation and drowsiness in the daytime. There is a risk of producing drug dependency. Also, patients may experience various unpleasant side effects, such as restlessness, sleep disturbances, etc. when these drugs are withdrawn after a long period of administration.

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Barbiturate Drugs

These drugs were widely used in the 1950's and 1960's, but are now considered to be obsolete. They are not very effective in suppressing seizures, but they frequently cause slowing of the intellect and depression. Withdrawing these medications can be extremely traumatic, with anxiety, restlessness, tremors, insomnia, and an increased risk of convulsions being prominent as the drug leaves the system.

An effort should be made to change every patient still taking these drugs over to one of the newer anti-epileptic medications, difficult as this might be.

Barbiturate anti-epileptic drugs still available include:

PROMINAL (Methylphenobarbitone, Winthrop Laboratories)

MYSOLINE (Primidone, I.C.I. Australia Pty Ltd)

PHENOBARBITONE (various manufacturers)

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Other Drugs

OSPOLOT (Sulthiame, Bayer Pharmaceuticals)

This drug may have a special value in controlling epilepsy in intellectually disabled, aggressive children. It is not a very effective anti-epileptic, and is not widely used.

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The Newest Anti-epileptic Drugs

These drugs are the outcome of research aimed at suppressing seizures by either increasing inhibition (through enhancing the activity of the natural inhibitory neurotransmitter GABA, or simulating its action); or, alternatively, reducing the effectiveness of natural excitatory neurotransmitters, such as glutamate.

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Drugs Acting Through Increasing Inhibition

GABAPENTIN and PROGABIDE were the first drugs of this type to be developed. They are active against a wide spectrum of seizures. VIGABATRIN was licensed in the UK in 1989 and appears to be a very useful medication in treating various forms of epilepsy that have not responded to other drugs. Early reports of degenerative changes in neurones of animals treated with Vigabatrin led to the most stringent appraisal of its safety in humans, but no similar effect has so far been reported in man.

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Drugs Which Reduce Excitation of Neurones

LAMOTRIGINE partly blocks the release of the excitatory neurotransmitter glutamate from nerve endings, and reduces the influx of sodium in the recipient neurone (this influx of sodium is vital to nervous transmission). It too appears to have a wide range of anti-epileptic activity. Allergic reactions, especially skin rashes, are relatively common. It is used as an additional treatment in patients with partial seizures with or without secondary generalization, where seizures have not been controlled by other anticonvulsant drugs.

TOPIRAMATE has been shown to significantly reduce the frequency of epileptic seizures, including refractory partial seizures. It appears to help balance electrical activity in the brain while blocking other substances that increase activity. For further information, see the Topamax Information Centre.

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Drugs that affect the availability of gamma aminobutyric acid (GABA)

GABITRIL (tiagabine hydrochloride) is one of a new class of compounds that affects the availability in the brain of gamma aminobutyric acid (GABA), a naturally occurring chemical that is thought to suppress the abnormal, repetitive pattern of central nervous system activity that can lead to seizures. Gabitril appears to work by inhibiting neuronal reuptake of GABA, thereby prolonging the amount of time it is available at receptor sites.

It is used as an additional treatment in patients with partial seizures (adults and children 12 years and older). Gabitril is licensed from Novo Nordisk A/S of Denmark and has cleared regulatory review in 15 countries, including Australia, Austria, Belgium, Denmark, Finland, France, Germany, Greece, Iceland, Ireland, Italy, Luxemburg, Portugal, Spain, and Switzerland. In the USA Gabitril became available by prescription in pharmacies in October 1997.

For further information, see the press release from Abbott Laboratories.


Surgery for Epilepsy

The idea of treating epilepsy by surgery is not new; the first operation for epilepsy was carried out in 1886.

Over the years, improvements in the safety of neurosurgery saw an expansion of the surgical approach, from simple operations to remove superficial, small localized abnormalities of the brain, to complex operations which included severing nervous connections. Some of the operations, for example, those in which the major connection between the two hemispheres of the brain was cut, had important adverse effects on the brain's normal functioning; when this was realized, surgery fell from favor, and the flood of operations that were carried out in the 1950's and 1960's was reduced to a trickle.

Interest in surgery has been revived in recent years, for it is now realized that it does have and important part to play in a small minority of patients, namely those who have a single solitary epilepsy-producing abnormality of the brain, situated in an area where removal does not leave any significant defect in the brain's function. Even in these patients, operation is contemplated only when satisfactory control cannot be achieved with medication.

To determine that a patient does indeed have only one area of the brain giving rise to epilepsy, new nuclear medical techniques (SPECT and PET scanning) are used to supplement information from special EEG techniques including EEG telemetry, sleep studies, and recording from pharyngeal or sphenoidal electrodes as appropriate. Special units at a small number of Australian teaching hospitals have been set up with facilities to evaluate patients who are candidates for surgery. Monitoring over several days may be required. It is no longer necessary to monitor the EEG through electrodes implanted in the brain, a technique which was used until recently.

Surgery is clearly inappropriate for patients who suffer from generalized epilepsy where there is no single area which can be identified as the source of the seizures. It carries increased risk when the dominant hemisphere of the brain is involved (the left hemisphere in a right-handed person).

It should be said, however, that where great care is taken in the selection process, the results of surgery can be excellent, and in a sense, it is the only way we have of "curing" epilepsy at the present time. Because the selection criteria are strict, surgical treatment would not be appropriate for more than 1% of epileptic patients.


First Aid for Seizures

The appropriate behavior for helping someone who has a seizure depends on the type of seizure. While a person experiencing a tonic-clonic seizure may require some first aid, in most cases there is little that can be done.

Tonic-Clonic (Grand Mal) This type of seizure is often the most dramatic and frightening, but it is important to realize that a person undergoing an epileptic seizure is usually unconscious and feels no pain. The seizure usually lasts only a few minutes, and the person does not need medical care. These simple procedures should be followed:

  1. Keep calm. You cannot stop a seizure once it has started. Let the seizure run its course. Do not try to revive the person.
  2. Ease the person to the floor and loosen and tight clothing.
  3. Try to remove any hard, sharp, or hot objects that might injure the person. It may be necessary to place a cushion or soft item under their head.
  4. Do NOT put anything in the person's mouth.
  5. As the person relaxes after a fit, turn him gently onto his stomach with the face to one side and the head extended so that the saliva can flow from the mouth. Its important to make sure that he can breathe freely.
  6. After resting most people carry on as before. If the person is not at home and still seems groggy, weak, or confused, it may be better to accompany him home.
  7. In the case of a child having a seizure, contact the parent or guardian.
  8. If the person undergoes a series of convulsions, with each successive one occurring before he or she has fully recovered consciousness, or a single seizure lasting longer than 10 minutes, you should immediately seek medical assistance.

Absence (Petit Mal) No first aid is required.

Complex-Partial (Psychomotor or Temporal Lobe)

  1. Do NOT restrain the person. Protect him or her by moving sharp or hot objects away.
  2. If wandering occurs, stay with the person and talk quietly.

Simple-Partial (Focal) No first aid is required.

 

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