Epilepsy
Side effects of epilepsy medication
Most people are concerned with the potential side effects of drug treatments, particularly because they can affect the quality of life. Many anti-epileptic drugs can cause a wide range of possible side effects but this does not mean that everybody taking a particular drug will experience them. All medicines have potential side effects as well as benefits, and the effects of anti-epileptic drugs on people can vary greatly.
A few people reported no or minimal side effects. Several recalled how tiredness occurred at the start of treatment but later subsided when their bodies had adjusted to the drugs. Sleepiness, drowsiness or a lack of energy were also mentioned by many other people we interviewed.
Recalls his feelings of tiredness when first using anti-epileptic drugs.
Recalls his feelings of tiredness when first using anti-epileptic drugs.
...Now it doesn't have any effect at all. In fact taking the Epilim, other than control, other than adding on to the Tegretol and helping to control me, I've never really felt any side effects from that. In fact throughout the whole period of this like 17 years, the only side effect I can remember is that very drowsy state in the early days.
Side effects sometimes occur when the dose of the drug being taken is too high for an individual. Some people said that high dosages of drugs left them feeling 'zombified', and so the dosage of the drug was reduced. One woman told us how her drug dosage was gradually changed because she was feeling tired and looking pale.
Explains how her drug dosage was altered because she felt tired and looked pale.
Explains how her drug dosage was altered because she felt tired and looked pale.
No you see, not the same dosage. I've been on the same tablet, you know type of tablets but not the dose. I was on the combination of Epilim and lamotrigine and I was on a few more Epilim than that I was and only a little lamotrigine. That was after the operation and that's when I was well and we thought well just a little of the lamotrigine is fine. But then they increased the dosage of the lamotrigine and lowered the dosage slightly of the Epilim, and I was still OK for a while. And then of course last year, early last year I think it was, when he changed the medication again, he took me off Epilim altogether, just kept me on lamotrigine. And then that was also when I was told I was looking terrible, I was really pale, I looked tired and ill, just not you know, not myself at all. As soon as I went back on to the Epilim again I'm looking brighter, even though like I'm tired and I don't feel too great, I'm told that my eyes are so much brighter and I'm more sort of you know with it.
The effects of anti-epileptic drugs on speech - such as being unable to find the right words or slurred speech - were reported by some people. One person recalled having muscle jerks. Another discussed the hand tremors she'd had with one drug and poor concentration with another. One man discussed the effect of drugs on his gums.
Discusses the muscle jerks and speech problems she had with anti-epileptic drugs.
Discusses the muscle jerks and speech problems she had with anti-epileptic drugs.
But something else for example, you're trying to think of words, you're having a conversation with somebody, you're trying to think of a word to express a point that you are trying to put across, and you can't think of the word. And you're sitting there trying to process this word and you've got the image of the word in your head and you can't actually say it. And you're trying and trying to process this word in your head but you just can't get it out.
Recalls the hand tremors she had with one drug and poor concentration with another.
Recalls the hand tremors she had with one drug and poor concentration with another.
And that was all right. But just before I was about to see the neurologist, about two weeks after coming out of hospital to see how I was getting on, I noticed I had a tremor. My hands were going (shakes her hands). And I thought OK it wasn't that bad, I can cope with that. But as soon as the neurologist saw, I thought I might have imagined it, so when I showed him straight away he said 'Oh no, you can't take Epilim'. So he stopped that and then he put me on lamotrigine. And that's what I take now.
So you started taking the Tegretol straight away? Did you feel any side-effects?
No, not initially but after about eighteen months I was working as a trainee solicitor and I felt that I couldn't concentrate very well, and that my memory wasn't very good. And I found it quite frustrating. And I thought that was to do with the Tegretol and I raised that with the neurologist. And in the end he did say that it could possibly be connected but he still wanted me to take it.
Weight gain was mentioned by several people we interviewed. One person felt it was acceptable as the drug controlled her seizures, but others found it problematic or unsatisfactory.
Explains how weight gain and other side-effects affected her.
Explains how weight gain and other side-effects affected her.
Then they changed it to Lamictal and when I came off the Epilim I lost a stone and half in about six months. So it was definitely the Epilim. I was having terrible, terrible period problems, which they now say that was the Epilim as well.
When I was on the Epilim I was sleeping all the time. I could go to sleep at six o'clock in the evening and wake up at ten o'clock in the morning and still need a nap in the afternoon. It was terrible. And mum was speaking to the doctor about the side-effects and everything and they said 'Well we could try you on Lamictal.' And the difference to me was brilliant. I had so much more energy and I lost a lot of weight, you know it was good.
Coping with side effects was difficult for some people because of the impact on their feelings, on work and on relationships. One woman described the impact of different drugs over the years. Another said that her feelings of depression and numbness led her to being weaned off medication. The severe side effects experienced by one woman led her to stop taking all her drugs for a time.
Discusses the impacts of different anti-epileptic drugs.
Discusses the impacts of different anti-epileptic drugs.
Yes. And you've been on those ever since?
Well I was on those for oh, I should really have made a note of the drug dates for you. I was on those for most of my teenage life, my early years. Mid-20s I was tried on Epilim and that was found to be reasonably successful in controlling the seizures but it made me a bitch, it really got to my emotions more than anything else had done and I said 'I just can't carry on taking this, or my friends can't bear me taking it.'
Carbamazepine was added some time before that, that has been fairly successful as well in controlling the major seizures. When the 'Gaba' drugs came out several times the doctor I was seeing at the time, the consultant I was seeing then, tried to withdraw the Phenobarbitone and found they could only get it down to a certain limit after which I started going into worse seizures than I had been having, or could cope with. That went on for some time and I understood the reason for stopping phenobarbitone then was simply that it was an old drug with numerous minor side-effects and the only one that you became tolerant of, the only one that was really dangerous in the addictive sense.
Explains why she came off all anti-epileptic drugs.
Explains why she came off all anti-epileptic drugs.
Describes the severe side effects she had with various anti-epileptic drugs.
Describes the severe side effects she had with various anti-epileptic drugs.
What were they?
I'd have to look that up. The next lot made me suicidal, I just wanted to end it all, life was so awful. So I gave them up. Er after this time I was, you know, anxious, worried, I'd had, I'd had a cure if you like, I wanted to get back there. I still want to get back there.''.
Er so after three failures I was not depressed but disappointed, you know. I've since tried two more, one, I remember the consultant saying to me "This one might take your skin off," and I thought he meant like sunburn
Silly me, what it actually does is separate, is separate the skin from the tissue, it is actually quite painful, so I gave up that one. I've been prescribed a sixth drug for months but because of the after effects of the last one I haven't got round to taking it yet.
Blurred vision, often at the start of taking some anti-epileptic drugs, was reported by some people. One woman described being weaned off lamotrigine because of its long-term effects on her vision. Several people reported being sensitive to a drug and having allergies such as skin rashes. The effects of anti-epileptic drugs on memory were also a common concern amongst people we spoke to.
Explains that she would like to come off a drug because of its effects on her vision.
Explains that she would like to come off a drug because of its effects on her vision.
And yeah I had, just going back to the doctor experiences, the registrar reacted in the same way as the GP when I said 'I'm taking vigabatrin.' She said 'Oh that is not a good drug.' I have to go home and take this you know, I have to go home and keep on taking something which is making specialists and doctors go 'Oh'. So you know that reinforced the fact that I wanted to not take that drug any more. But again you know when I
think about it.
Are you taking it now?
Yeah I'm in the stage at the moment that I'm in is, I'm reducing that cautiously. I've increased the lamotrigine and I'm reducing the Sabril cautiously at the moment. But they're also, where we got to with my current drugs is they, the specialist wanted to reduce the Sabril and get me off that completely, increase the lamotrigine to make sure that I was OK.
Discusses the skin rash she had with an anti-epileptic drug.
Discusses the skin rash she had with an anti-epileptic drug.
So you lowered the dosage and came off quite slowly?
Yes, very slowly.
Because anti-epileptic drugs affect different people in different ways, some people have no side effects while others may have several. However, anti-epileptic drugs should never be stopped without medical advice as seizures can occur without them (see 'Taking and stopping medication for epilepsy').
Last reviewed May 2016.
Last updated March 2014.
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