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Epilepsy

Taking and stopping medication for epilepsy

It is important to take anti-epileptic medication regularly and as prescribed by the doctor. Many people discussed taking their tablets as prescribed and ways of remembering to take medication. A few people reported feeling light-headed or dizzy if they forgot medication on the odd occasion. Although missing a single dose very occasionally is unlikely to be dangerous and result in seizures, one person recalled how missing a single dose of medication led to an episode of status epilepticus, which is a medical emergency.

 

Reports that he feels slightly dizzy if he forgets to take his medication.

Reports that he feels slightly dizzy if he forgets to take his medication.

Age at interview: 43
Sex: Male
Age at diagnosis: 27
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I mean it's got to the stage now where I don't really think about it, other than the fact that every morning I have to remember to take my tablets. And that would be the only thing that I know now is that if I forget to take my tablets in the morning, I start to realise that I've forgot to take my tablets by mid afternoon because I start to get quite light headed. Or you know if I forget the night ones when I get up in the morning straight away I start to feel a bit light headed. But other than that I you know don't consider myself to be a sufferer as such. I have the condition but I don't necessarily suffer any more. 

 

Explains how missing one tablet led to a status epilepticus episode.

Explains how missing one tablet led to a status epilepticus episode.

Age at interview: 45
Sex: Male
Age at diagnosis: 26
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I'd taken my early morning tablets extremely early that morning, at five. Forgot the midday medication so by the time I was driving home at six o'clock that night, I'd gone thirteen hours without drugs. And I was in the car and I gradually started to lose consciousness while I was behind the wheel. 

The aura that I had, because you're not thinking logically, lasted I would say for the equivalent of driving about eight miles. And I was just getting tireder and more tired behind the wheel, and I realised after swerving the car several times - fortunately not hitting anybody or anything - I knew I had to stop the car. Fortunately a lay-by was close so I managed to get into the lay-by, and it was like your defences go down as soon as the hand brake's put on. The last thing I remember is somebody opening the car door and saying 'Have you been drinking mate?' And the next thing I knew I woke up in hospital late that night, sort of one in the morning, and I'd gone into something they call status epilepticus which lasted forty-five minutes.  Which in my case lasted that long and its basically something where you have to have medical attention. 

In hospital they kept me in for three days under observation and the good thing was, from my point of view is that I knew the reason why I had the seizure.  

It was purely missing the medication and its something that is, its something that angers me a little bit when people just say you mustn't forget your tablets. They don't tell you why, they should tell you why. 

A drug wallet helped some people remember to take medication. Others discussed methods that helped them. One woman said that while she usually found it easy to take medication regularly, problems can occur when her routine changes.

 

Discusses how he remembers to take his medications.

Discusses how he remembers to take his medications.

Age at interview: 52
Sex: Male
Age at diagnosis: 15
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And did you have a way of remembering to take them or were there times when you forgot?

No, I don't think I ever forgot, I very, very rarely forgot. I actually had a sort of almost an inbuilt clock, it was um, with tea in the morning, so eight o'clock at the weekends and six on work days. It was eleven o'clock, whenever lunchtime was, twelve or one o'clock and six o'clock in the evening and that was, and if I didn't then I sort of felt um, this is over a number of years, but I didn't felt quite right. But I always carried the tablets measured out in a little pot. And I've actually ran out of these wonderful little plastic boxes, so I've had to go onto pill boxes now. But as long as I'd got the amount there and sometimes I would think well have I taken them, I could just check. And it has become a way of life and it's not a problem.

 

Comments that taking medication regularly can be a problem when her routine changes.

Comments that taking medication regularly can be a problem when her routine changes.

Age at interview: 30
Sex: Female
Age at diagnosis: 17
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And when it comes to taking your medications have there been times when you've forgotten or do you have a pattern?

Yes. I do now, I do have a pattern its very, its fine when you're at home. And when I go to bed I put in a little like you know a plastic medicine pill pot, like you see in hospital, I put my morning ones in there and I take those as soon as I go in the bathroom in the morning. The problems arise when your routine changes and you go on holiday or you go away for the night, or all of those things. And yes I have had fits when I've not taken pills. But normally a few days later. 

Failure to take the drug as instructed - either not taking the drug at all or taking it irregularly - can also cause problems. Occasionally patients decide to stop their drugs suddenly, often because of depression or frustration. This can be dangerous because it can lead to prolonged and frequent seizures. One woman explained how temporarily stopping medication caused her problems.

 

Discusses the problems that arose from stopping her anti-epileptic drugs.

Discusses the problems that arose from stopping her anti-epileptic drugs.

Age at interview: 21
Sex: Female
Age at diagnosis: 11
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With me, I stopped taking the medication from about, it must have been about two, two and a half years, and because of this I wasn't on any sort of medication at all. I basically believed that I was, I was having, my idea of it all was I was having seizures when I was on the medication anyway. The medication wasn't stopping the seizures entirely so what really was the point of me being on the medication. That was my entire idea of it. So I just thought the best thing for me to do is to just not take any 

medication. I've had enough of taking pills, I'm sick of putting pills down my throat, I've been doing it long enough, that was my entire idea. Because I just got, I got sick of, I just got sick of taking these pills because I, my whole past was just swallowing tablets. The whole, the whole way I saw it was if you picked me up and shook me up and down I would rattle like a pillbox. That was the way I saw it because I was just filled with these tablets. ...Obviously you've got to worry about where you are at the time when you have a seizure, there's risks about, if you're in dangerous situations, dangerous areas of deaths and so on and also SUDEP is very risky. 

But obviously going back on to these drugs again it was very hard as well because when I went back on to these drugs obviously my condition had worsened. And this is proven because still at the moment I am still trying to find the correct combination of drugs for me. 

There can be risks in stopping treatment suddenly, even if the medication was not successfully controlling the seizures. While one man with epilepsy and cancer discussed stopping medication suddenly, he also advised against it. A few people described coming off medication gradually and under the doctor's supervision, but they were not seizure free.

 

Explains why he stopped taking anti-epileptic drugs suddenly and advises against it.

Explains why he stopped taking anti-epileptic drugs suddenly and advises against it.

Age at interview: 28
Sex: Male
Age at diagnosis: 15
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I mean with the cancer you just don't feel you want to take your pills anymore and there was times where I would stop my pills completely without even asking my doctor if I can, which is an absolute no-no. You should not ever do that. You should find out, basically get advice from your consultant or doctor who you're under. Which was a bad thing I did but, as I said, I got it sorted out and with me, with my fits today me now but  I don't actually take my pills any more due to the fact that it seemed to make me feel more worse in a way. I mean I seemed to have got even more fits. I think it was because the tumours in the first place were causing the fits and now that the tumours are gone I was not having the seizures [a malignant brain tumour was causing the seizures and was treated with radiotherapy and chemotherapy]. 

And when was the last time you took any of your medication? 

With me due to, due to the fact that I don't just take my tablets any more. I mean I'm not speaking here to say that you should ever stop the tablets, always go to your doctor - consultant in this case - and ask what basically is the best thing for you to do, don't just stop your tablets like I did. I did the wrong thing; I should never have done it in the first place. And I always find it makes it worse if you do stop them straight away, so always ask your consultant first before you'd go forward on stopping your tablets. 

 

Explains why she slowly came off all medication.

Explains why she slowly came off all medication.

Age at interview: 48
Sex: Female
Age at diagnosis: 10
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One of the drugs did help with the photosensitivity but I think that was Lamotrigine but the side effects were so dreadful, I was just, I became a non-person. I couldn't converse, I couldn't do anything, except cry. So after three years, I gave them a good try, and after three years I'm off now, the Keppra, that was the last drug I tried and it's a year exactly 

since I last took my last pill, anti-convulsant drug. And I do feel so much better. It's taken a year really to recover completely and to regain my confidence.

If someone has not had a seizure for two or more years they may consider slowly coming off their medication under medical supervision. Several people reported that, while they had been seizure free for a number of years, they were wary of stopping medication. One woman described being both seizure free and drug free after having neurosurgery for epilepsy.

 

Explains why he is wary of coming off medication.

Explains why he is wary of coming off medication.

Age at interview: 45
Sex: Male
Age at diagnosis: 26
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Would you, if you've been seizure free for a long time would you ever consider stopping your medication or would you feel much more confident continuing to take your medication? 

I don't think I would take, I don't think I would take the risk. I do know some people who, and I know the statistics that some people do after a certain number of years decide to reduce their medication. I can understand why, but from the point of view of driving I, because I'm fortunate enough to be on a mild dosage of both drugs and because my quality of life isn't really that affected, I wouldn't take the risk at all because a) of driving and b) of bringing it back again. I'm very fortunate in that respect. 

 

Discusses coming off anti-epileptic drugs after having neurosurgery for epilepsy.

Discusses coming off anti-epileptic drugs after having neurosurgery for epilepsy.

Age at interview: 39
Sex: Female
Age at diagnosis: 25
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Have you had any, are you taking any medication?

No and I actually, I have to say I stopped probably two or three months after the op. I just took myself off it, I thought that's it I'm not going to have any more. 

What were you taking?

At the time I was taking Lamictal, Lamotrigine and Tegretol I think. I'd already stopped taking the Tegretol.

Because you'd had side-effects with the Tegretol before.

Oh God yeah, blurred vision, yeah it was horrible.

But you were on those. 

Yes, yeah, and I just gradually, well I don't know if I gradually stopped taking it or just stopped because when I went down to London for the follow up consultation and he said 'Are you still taking the drugs?' Because by law you're supposed to keep taking them and I said 'No I haven't taken them since about two months after the op,' and he couldn't believe it and he said 'You haven't had any fits?' 'No'. I just kind of knew, I just felt when I woke up I thought 'God I'm not gonna, its gone.  

So you stopped the medication after about three months and you've been seizure free and medication free.

Yes, completely, yeah.

For? 

Well that was September 2000, so two years this, this September.

Most anti-epileptic drugs have at least two names, a chemical (generic) name and a trade (brand) name given by the manufacturer of the drug. It is advisable for people with epilepsy to take the same manufactured preparation all the time, either generic or branded, as preparations can vary slightly, for example in the speed with which they are absorbed from the intestine.

Some medicines can interact with anti-epileptic drugs. Some anti-epileptic drugs can also interact with alcohol.

Last reviewed May 2016.
Last updated March 2014.

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