I am new to the forum. I have a family member who has epilepsy. Was in remission for 20 months after almost 2 years getting it under control. I am interested in specific advice you may have for factors that can be controlled to help reduce the risk. For instance, I am considering changing cfl lights in bathroom (where 3/6 seizures have occurred - typically they were early morning, but the last 2 have been later in the evening, one in a grocery store and one in the Bathroom); is LED a safe option or do I need to find incandescent bulbs that will fit? Dr. said after the EEG he was not photosensitive but I am beginning to suspect it could be a factor. What about computer, monitor etc in the bedroom? Specific vitamins/supplements that have helped you? For those of you who are photosensitive, is the effect always immediate? For example, in an environment like Dave and Buster's (arcade-like), could it contribute to a seizure the next day? I am interested in your personal experiences, or if you have read a reference/book that has been helpful in you learning to manage life with epilepsy as well. If you have learned specific triggers that affect you, I would appreciate hearing what they are, so I can consider them in this situation. Thank you so much.
Advice on changes that help control your seizures.
- Thread starter PSB
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I agree about photosensitive doc told me that but strobe lighting flu recent all those things start me off and those arcade games but in the same breath if it a child don't want deprive them of all fun..Sometimes it wait and see thing as you go along.booze also start things but I tend to ignore that but please don't do that I know my body and what will or not cope with.Sleep deprivation that's a biggi I get obsessed about that.
Sound like you caring person and will do your best that's all we can do...
I found something called adult colouring it zen thing you can buy or get from net.If I think going be bad day I sit and do it..the brain is so absorbed in colour and concentration in me dative way that it aborted a fit. And I a skeptic about this sort of thing
Sound like you caring person and will do your best that's all we can do...
I found something called adult colouring it zen thing you can buy or get from net.If I think going be bad day I sit and do it..the brain is so absorbed in colour and concentration in me dative way that it aborted a fit. And I a skeptic about this sort of thing
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PSB
Welcome to C.W.E. if the doctor says it is not photosensitive why do you think it is. There is no such thing as remission with epilepsy, there are typical triggers like stress, lack of sleep, not getting enough sleep. I am sure you have picked up on some triggers for these seizures, you need to consider these. Every person has different triggers, yes some may be the same.
Changing the light bulbs may be a good idea or decreasing the brightness on the computer monitor. I do not think there is a book that can help you manage epilepsy. This is something you learn about through living with it.
Welcome to C.W.E. if the doctor says it is not photosensitive why do you think it is. There is no such thing as remission with epilepsy, there are typical triggers like stress, lack of sleep, not getting enough sleep. I am sure you have picked up on some triggers for these seizures, you need to consider these. Every person has different triggers, yes some may be the same.
Changing the light bulbs may be a good idea or decreasing the brightness on the computer monitor. I do not think there is a book that can help you manage epilepsy. This is something you learn about through living with it.
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Not everyone with epilepsy is photosensitive. If he's been around flashing lights before and it's never caused a seizure then he probably isn't, this is how we found out if I was or not.
Most of the things that trigger seizures for people are stress, lack of sleep, caffeine and alcohol. Try to avoid these as much as you can, easier said than done with some of them though.
Just because you heard that something will cause a seizure doesn't mean it will for everyone. A lot of times it's a trial and error sort of thing.
Even with asking your dr about if something that he may be going to do will cause a seizure the dr won't be able to give you a yes or no answer. I was going to an amusement park a few years ago and I was worried about riding the roller coasters. I asked my neuro how he felt about it and he said that I'd just have to try and see. Luckily I wasn't and had a great day.
Most of the things that trigger seizures for people are stress, lack of sleep, caffeine and alcohol. Try to avoid these as much as you can, easier said than done with some of them though.
Just because you heard that something will cause a seizure doesn't mean it will for everyone. A lot of times it's a trial and error sort of thing.
Even with asking your dr about if something that he may be going to do will cause a seizure the dr won't be able to give you a yes or no answer. I was going to an amusement park a few years ago and I was worried about riding the roller coasters. I asked my neuro how he felt about it and he said that I'd just have to try and see. Luckily I wasn't and had a great day.
resaebiunne
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I am doing some experimenting on the supplements front. There seems to be good evidence that coconut oil (or its more refined cousin MCT oil) can help put your body in a state of ketosis which can be helpful with seizures. Personally, I have noted the effects of ketosis but don't particularly see a reduction in my seizure activity.
Another supplement I am taking is Magnesium. There are several varieties of magnesium supplements so you should be particular about the one you choose. The one I take is magnesium taurate. My neurologist has explained to me that magnesium is used to treat female epileptics who are pregnant so they can reduce or even go off of their normal medication. Magnesium taurate has two components to it that are helpful in raising the seizure threshold: Magnesium (of course) and taurine. So far, the magnesium has not had any effect on reducing my seizures.
Other supplements I take that are not particularly effective for seizure control are moringa oleifera (multivitamin replacement), St. John's wort, and a probiotic for gut health.
Personally I have not found any of my supplementation to be particularly noticeable in its effects on my seizures or otherwise, however I have only be supplementing heavily now for about two weeks. Personally, I think gut or diet related seizure triggers are specific to your personal situation. If it works for you, great, if not, you haven't lost much for trying.
Another supplement I am taking is Magnesium. There are several varieties of magnesium supplements so you should be particular about the one you choose. The one I take is magnesium taurate. My neurologist has explained to me that magnesium is used to treat female epileptics who are pregnant so they can reduce or even go off of their normal medication. Magnesium taurate has two components to it that are helpful in raising the seizure threshold: Magnesium (of course) and taurine. So far, the magnesium has not had any effect on reducing my seizures.
Other supplements I take that are not particularly effective for seizure control are moringa oleifera (multivitamin replacement), St. John's wort, and a probiotic for gut health.
Personally I have not found any of my supplementation to be particularly noticeable in its effects on my seizures or otherwise, however I have only be supplementing heavily now for about two weeks. Personally, I think gut or diet related seizure triggers are specific to your personal situation. If it works for you, great, if not, you haven't lost much for trying.
Hey Res, I would be careful with the St John's Wort if I were you.
http://www.mayoclinic.org/drugs-supplements/st-johns-wort/safety/HRB-20060053
It can actually lower the seizure threshold .
Other wise keep on taking the supplements. You wouldn't see much one way or the other in only two weeks. You have to stick it out to know.
http://www.mayoclinic.org/drugs-supplements/st-johns-wort/safety/HRB-20060053
It can actually lower the seizure threshold .
Other wise keep on taking the supplements. You wouldn't see much one way or the other in only two weeks. You have to stick it out to know.
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My first T/C seizure happened first thing in the morning, in the bathroom. Since then, I've had them all times of day. But one thing to consider is low blood sugar. Initially the dr. said I was hypoglycemic. That was before I had diabetes. Now I really do have diabetes (brought on by a drug) and low blood sugar did cause a seizure for me.
Another thing to consider if your friend is female is hormones. Hormones can/do play a big role for some with E.
http://www.epilepsy.com/information/women/all-women/hormones-and-epilepsy
And for more info on photosensitive seizures:
http://www.epilepsy.com/learn/triggers-seizures/photosensitivity-and-seizures
Another thing to consider if your friend is female is hormones. Hormones can/do play a big role for some with E.
http://www.epilepsy.com/information/women/all-women/hormones-and-epilepsy
And for more info on photosensitive seizures:
http://www.epilepsy.com/learn/triggers-seizures/photosensitivity-and-seizures
Hi PSB and welcome to CWE!
I have no specific trigger for seizures, and that could be the case for your family member. It is also possible that it is an accumulation of various things that bring on a seizure (for example inadequate food intake plus insufficient sleep plus stress) rather than one of these factors alone. It is important to note that "stress" can be mental or physical (too hard a workout or illness) and can be bad (everyone breathing down your neck at work) or even good (too much excitement at a big party for instance, even if it is fun).
I have no specific trigger for seizures, and that could be the case for your family member. It is also possible that it is an accumulation of various things that bring on a seizure (for example inadequate food intake plus insufficient sleep plus stress) rather than one of these factors alone. It is important to note that "stress" can be mental or physical (too hard a workout or illness) and can be bad (everyone breathing down your neck at work) or even good (too much excitement at a big party for instance, even if it is fun).
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Incandescents work best for me, although I use to prefer the others for environmental and economical reasons. LEDs and CFLs both cause me problems, partly because of how they are constructed, and partly because of their intensity. I am more nocturnal because the sun itself causes me problems, particularly when driving west as the sun is setting. Shrouded lights help (lights with lampshades). Indirect is better than direct for me. An all white room with more reflective surfaces can also be a contributor. Warmer earthtones (for painted walls) help to diffuse the light better, without making rooms too dark.
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Zara-Newman
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I have had a number of EEGs, one of which showed sensitivity to light.
When I first started having my seizures most of them took place after I washed and such in the bathroom first thing in the morning.
We more or less decided that the sunlight flickered through the glass, which is patterned. If I go in when I have been up for a while rather than straight away it doesn't seem to affect me.
Although I do go to nightclubs which don't seem to effect me.
Tiredness and stress are big triggers for me, and if I am ill - like have a sinus infection or the flu or something I ALWAYS have seizures.
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When I first started having my seizures most of them took place after I washed and such in the bathroom first thing in the morning.
We more or less decided that the sunlight flickered through the glass, which is patterned. If I go in when I have been up for a while rather than straight away it doesn't seem to affect me.
Although I do go to nightclubs which don't seem to effect me.
Tiredness and stress are big triggers for me, and if I am ill - like have a sinus infection or the flu or something I ALWAYS have seizures.
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Zara-Newman
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I, personally also have a condition called postural tachycardia syndrome, which triggers seizures.
Almost anything can be a trigger for people, I was admitted to a clinic in London once where a doctor was telling me about a man he treated whose seizures were triggered by particular frank sinatra songs...
It could also be that his eyes themselves are sensitive to light, rather than it being photosensitive.
So it could cause imbalances and headaches, and then the stress that puts on the body could trigger it.
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Almost anything can be a trigger for people, I was admitted to a clinic in London once where a doctor was telling me about a man he treated whose seizures were triggered by particular frank sinatra songs...
It could also be that his eyes themselves are sensitive to light, rather than it being photosensitive.
So it could cause imbalances and headaches, and then the stress that puts on the body could trigger it.
Sent from my SM-G920F using Tapatalk
Zara-Newman
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Just because the seizure was caused by low blood sugar doesn't mean it is a non epileptic seizure.
It could just be a trigger, I have PoTS and that triggers my epilepsy.
It is still an epileptic seizure, it is just brought on by other things.
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It could just be a trigger, I have PoTS and that triggers my epilepsy.
It is still an epileptic seizure, it is just brought on by other things.
Sent from my SM-G920F using Tapatalk