Hi Everyone
Just wanted to ask a quick question and hope people won't find it annoying as I know that my situation is very good compared to what many people have to cope with in their lives!
I am 33 and had one TC seizure when I had just turned 17. It happened when I was out walking the dog and was walking through a forest and looking for the dog's ball. It was spring and the ground was thickly carpeted in a type of small plant. It made a very vivid pattern on the ground. As I was concentrating hard on the ground and the strange leaves while looking form the ball, the pattern caused by the leaves made my eyes feel funny. I remember saying to my mum that the leaves made me eyes go weird and she told me not to look at them, which I duly ignored. Apparently a few minutes later I had a full on seizure and effectively spent 5 minutes break dancing in ther undergrowth before coming round.
Went to see a neuro who to be honest didn't seem hugely concerned and said I had had a photosensitive seizure and it was likely a one off caused by any number of factors that would be hard to pinpoint. I had been on antibiotics for acne for a few weeks as well which may have contributed I guess. I had an eeg which was apparently normal although I have a weird memory that there might have been one minor abnormality but obviously wasn't anything to concern the doc.
I went off happy. 6 months later I was watching tv and a freaky scene came on tv. It freaked me out a bit and looking back it might well have started a panic attack as I thought I was going to have another seizure. My mum who was there again freaked out at my reaction which made it worse! I didn't actually have a seizure but went back to see the neuro. As a precaution he put me on 500g of Epilim once a day. I stayed on this for around 5 years and had no seizures.
I then came off Epilim, the neuro saying he doubted I ever had epilepsy, and have now gone a further 12 years with no seizures.
However I do still, however irrational, get anxiety worrying about having another seizure. Whenever I have an odd feeling it triggers anxiety. I get feelings of drealization and anxiety that then make me feel I will have another attack and it doesn't help that these kind of vague symptoms can attach themselves to so many possible causes, including simple seizures. I freak out whenever patterns or lights make my eyes go funny, such as venetian blinds and those same plants from before, even though friends will say the same things make them feel funny but they will just look away.
Several GPs have said it is very unlikely I will have another but the fact the last one happened out of the blue still scares me. Over the years I have been in many situations of extreme stress and lack of sleep and never had anything but I still worry! I guess it's just never having known what caused the first one.
Anyway, all I wanted to know was whether it is a fairly common thing for people who have a first seizure to never have another? I appreciate that posting symptoms of derealization and dizziness on an epilepsy forum will provoke suggestions of seizures and I am not asking people to categorically state I will never have another anymore than I can go to my doctor and ask him to guarantee I won't get run over by a bus tomorrow. I was just interested to know how common one off seizures actually are and whether going 17 years without a 2nd seizure should reassure me my chances of having another are slim. I guess most people who don't have a second dont hang around on epilepsy forums but if people do have any opinions I'd be interested to hear them.
Thanks so much!
Ed
Just wanted to ask a quick question and hope people won't find it annoying as I know that my situation is very good compared to what many people have to cope with in their lives!
I am 33 and had one TC seizure when I had just turned 17. It happened when I was out walking the dog and was walking through a forest and looking for the dog's ball. It was spring and the ground was thickly carpeted in a type of small plant. It made a very vivid pattern on the ground. As I was concentrating hard on the ground and the strange leaves while looking form the ball, the pattern caused by the leaves made my eyes feel funny. I remember saying to my mum that the leaves made me eyes go weird and she told me not to look at them, which I duly ignored. Apparently a few minutes later I had a full on seizure and effectively spent 5 minutes break dancing in ther undergrowth before coming round.
Went to see a neuro who to be honest didn't seem hugely concerned and said I had had a photosensitive seizure and it was likely a one off caused by any number of factors that would be hard to pinpoint. I had been on antibiotics for acne for a few weeks as well which may have contributed I guess. I had an eeg which was apparently normal although I have a weird memory that there might have been one minor abnormality but obviously wasn't anything to concern the doc.
I went off happy. 6 months later I was watching tv and a freaky scene came on tv. It freaked me out a bit and looking back it might well have started a panic attack as I thought I was going to have another seizure. My mum who was there again freaked out at my reaction which made it worse! I didn't actually have a seizure but went back to see the neuro. As a precaution he put me on 500g of Epilim once a day. I stayed on this for around 5 years and had no seizures.
I then came off Epilim, the neuro saying he doubted I ever had epilepsy, and have now gone a further 12 years with no seizures.
However I do still, however irrational, get anxiety worrying about having another seizure. Whenever I have an odd feeling it triggers anxiety. I get feelings of drealization and anxiety that then make me feel I will have another attack and it doesn't help that these kind of vague symptoms can attach themselves to so many possible causes, including simple seizures. I freak out whenever patterns or lights make my eyes go funny, such as venetian blinds and those same plants from before, even though friends will say the same things make them feel funny but they will just look away.
Several GPs have said it is very unlikely I will have another but the fact the last one happened out of the blue still scares me. Over the years I have been in many situations of extreme stress and lack of sleep and never had anything but I still worry! I guess it's just never having known what caused the first one.
Anyway, all I wanted to know was whether it is a fairly common thing for people who have a first seizure to never have another? I appreciate that posting symptoms of derealization and dizziness on an epilepsy forum will provoke suggestions of seizures and I am not asking people to categorically state I will never have another anymore than I can go to my doctor and ask him to guarantee I won't get run over by a bus tomorrow. I was just interested to know how common one off seizures actually are and whether going 17 years without a 2nd seizure should reassure me my chances of having another are slim. I guess most people who don't have a second dont hang around on epilepsy forums but if people do have any opinions I'd be interested to hear them.
Thanks so much!
Ed
Last edited: