Anybody else have Epilepsy?
TriFinders
Posts: 53
Morning all
I was wondering if anybody else had Epilepsy in the Community?
I really do need to shift a few stone, but because of my condition i can't go below 1600 cals a day. This means that my loss is VERY slow and most weeks i don't lose at all. I exercise alot, cycling & swimming and racing so i know i'm fit, but also because of this i need to ensure my blood sugar levels don't drop too much.
I am interested to know if anybody else has this situation, as i find it very frustrating.
I
I was wondering if anybody else had Epilepsy in the Community?
I really do need to shift a few stone, but because of my condition i can't go below 1600 cals a day. This means that my loss is VERY slow and most weeks i don't lose at all. I exercise alot, cycling & swimming and racing so i know i'm fit, but also because of this i need to ensure my blood sugar levels don't drop too much.
I am interested to know if anybody else has this situation, as i find it very frustrating.
I
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Replies
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I have epilepsy. I was diagnosed almost 5 years ago. Still unsure why the seizures started or when they will occur. It happens between REM sleep and waking up out of the blue.
I am happy to find someone that can understand the crudiness of this neurological anomaly.0 -
Oh hi!
I was diagnosed in 2004 and like you, it started for no reason. I have full tonic clonic seizures in my sleep then focal seizures whilst awake.
How are you finding dieting? Do you also have to watch blood sugar levels?0 -
I don't but my mother does. She has lived with it since she was 10.0
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Morning all
I was wondering if anybody else had Epilepsy in the Community?
I really do need to shift a few stone, but because of my condition i can't go below 1600 cals a day. This means that my loss is VERY slow and most weeks i don't lose at all. I exercise alot, cycling & swimming and racing so i know i'm fit, but also because of this i need to ensure my blood sugar levels don't drop too much.
I am interested to know if anybody else has this situation, as i find it very frustrating.
I
No, I don't have Epilepsy OP, but genuinely wanted to ask, what happens if you went below 1600 per day? I am asking this in order to understand your condition xxx0 -
Morning all
I was wondering if anybody else had Epilepsy in the Community?
I really do need to shift a few stone, but because of my condition i can't go below 1600 cals a day. This means that my loss is VERY slow and most weeks i don't lose at all. I exercise alot, cycling & swimming and racing so i know i'm fit, but also because of this i need to ensure my blood sugar levels don't drop too much.
I am interested to know if anybody else has this situation, as i find it very frustrating.
I
Had it in the past . Haven't had a seizure in some time (about 1 year) but I'm also curious about not being able to eat less than 1600 kcals a day.
When you do, goes it trigger a seizure/episode?
Do you have an extreme cases where blood sugar drops trigger seizures?0 -
Hi ya
I've tried dieting below this level and experienced 'auras' on several occassions. These are cues to seizures and non generalised but can lead to generalised seizures that affect all areas of the brain.
Due to my medication, my metabolism works differently, so it's quite impossible to regulate blood sugar levels on a low cal diet and quite simply just not worth it.
My main aim in life is to be seizure free, not skinny, but if i keep to 1600 cals a day i can hopefully lose 1lb a week.
My cues for seizure are low blood sugar, tiredness and extreme cold conditions! I've worked this out over 9 years and if i can control these aspects of my life, then i can control seizures. I am a triathlete and so i use alot of cals in training, and i need to ensure i fuel properly before/during and after racing to avoid a slump in blood sugars, because sadly there is no going back once i've reached it10 -
Hi ya
I've tried dieting below this level and experienced 'auras' on several occassions. These are cues to seizures and non generalised but can lead to generalised seizures that affect all areas of the brain.
Due to my medication, my metabolism works differently, so it's quite impossible to regulate blood sugar levels on a low cal diet and quite simply just not worth it.
My main aim in life is to be seizure free, not skinny, but if i keep to 1600 cals a day i can hopefully lose 1lb a week.
My cues for seizure are low blood sugar, tiredness and extreme cold conditions! I've worked this out over 9 years and if i can control these aspects of my life, then i can control seizures. I am a triathlete and so i use alot of cals in training, and i need to ensure i fuel properly before/during and after racing to avoid a slump in blood sugars, because sadly there is no going back once i've reached it1
ahhh thanks OP, I see now! :flowerforyou:0 -
I had seizures as a side effect of an antipsychotic medication several years ago.
It would happen late at night and was actually very scary because sometimes I was home alone. I didn't tell anyone about them because I was so embarrassed.
Until one day I was at my boyfriend-at-the-time's house and I just had a seizure right in front of him. A bit traumatic for a 16-year-old boy to witness
After that I ditched all the medications even though my previous symptoms returned.
I decided to put ONLY good things in my body. So I ate organic fruits and vegetables, no salt, no preservatives, no meat, less dairy, less gluten. And gradually I became symptom free, no tremors, no seizures, (and I'm completely sane I might add).
Thanks to healthy eating, sleep, sunshine, exercise!0 -
Additionally, the worst part about it was driving at night, because the lights overhead flashing past me would cause me to seizure, except I was fully consious and could just manage to pull over. Very dangerous.0
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I had seizures as a side effect of an antipsychotic medication several years ago.
It would happen late at night and was actually very scary because sometimes I was home alone. I didn't tell anyone about them because I was so embarrassed.
Until one day I was at my boyfriend-at-the-time's house and I just had a seizure right in front of him. A bit traumatic for a 16-year-old boy to witness
After that I ditched all the medications even though my previous symptoms returned.
I decided to put ONLY good things in my body. So I ate organic fruits and vegetables, no salt, no preservatives, no meat, less dairy, less gluten. And gradually I became symptom free, no tremors, no seizures, (and I'm completely sane I might add).
Thanks to healthy eating, sleep, sunshine, exercise!
Just wonderful! Clean living is my saviour too
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me also, :sad:
I started in 1987! a rather long time ago now I was 15 at the time,,,,0 -
Hello! I was epileptic for 21 years of my 26 year life. I still have 1 grand mal (or so) every year! Nice to meet you!0
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So nice to meet you all 0
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Hiya ... I've had epilepsy since I was a kid buy wasn't diagnosed until 14yrs ago , My seizures have never really been under control always around anything from 3-10 small a month, but good few years back I would have at least one Grandmal a year . I moved 2years ago to Hull ...on which has had a massive impacted on my seizures :0 about a year in they cammed right down maybe 1-3 per month Strange thing that's started tho is Im started having fits in my sleep ..! x 0
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I have nocturnal epilepsy and only have seizures while I sleep. I was diagnosed in 2001 and they are still unregulated. My neuro has never been able to pinpoint the reason why they started, nor the proper medications to alleviate them completely.
I was on topamax at one point and it helped me lose some weight. I was taken off of that and put on Keppra and I gained a ton of weight.
This thread is the first time I have ever heard of anyone else with nocturnal seizures and it makes me feel like someone finally understands.0 -
I have it. Its a pain in the behind, and is something I had all 22 years of my life. Kcals don't bother me as much as it does others. I have really mild photosensitivity and moderate heat sensitivity. High temps make me have petit mal , grand mal, or auras. My grand mals only occure like 4 times a year thankfully.0
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I have epilepsy as well but I don't have caloric instructions. The one thing I can't do is push myself too hard while exercising. The last seizure I had was after I ran very hard for about 6 miles. I also need to get enough sleep, which can be hard with three kids. Hopefully we can all help each other on this weight loss journey! 0
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I have nocturnal epilepsy and only have seizures while I sleep. I was diagnosed in 2001 and they are still unregulated. My neuro has never been able to pinpoint the reason why they started, nor the proper medications to alleviate them completely.
I was on topamax at one point and it helped me lose some weight. I was taken off of that and put on Keppra and I gained a ton of weight.
This thread is the first time I have ever heard of anyone else with nocturnal seizures and it makes me feel like someone finally understands.
I totally understand. Epilepsy controlled my life for a long time, but i do feel as though im strong enough to break out on top!
Nocturnal seizures are hell, especially if you don't gain consciousness in full before going back to sleep and i suffer with dreadful sickness & mental confusion.
I take Tegretol morning and night and with the change in my lifetsyle, this controls them, but has involved weight gain. Still...i'd prefer to be seizure free than skinny any day0 -
So sorry you're all experiencing this. It's not fun to watch either. My husband has seizures in his sleep, too. They're complex partial with a grand mal thrown in about once or twice a year when he doesn't refill his Lamictal on time.
He's been losing weight with me, simply by lowering his portion sizes and cutting out excess sugar and artificial ingredients. He's lost about 25 pounds since late February/early March.
I'm really proud of him (guess I should tell him!) because he was a huge Mountain Dew and sweet tea addict. Now, he's said that he can't even drink them anymore without getting sick. We went for a walk last night and at the point where we'd start heading home, he kept going forward.
I've never thought that maybe his seizures could be diet-related. They started when he was just a little kid. He'd be climbing trees and he'd all the sudden fall out of them. Or he'd be in the middle of something, and just start seizing. His doctor diagnosed him with a malignant brain tumor. He had successful surgery at 9 years old, followed by radiation, and so far, the tumor hasn't come back (he's 37). But, the scar tissue has caused this condition.
I'm just glad it's not during the day when he has seizures. He has a master's degree, a full time job, can drive, etc. So it's only when he's under a lot of stress, etc., that the seizures start up at night again. Otherwise, they're well controlled by his medication.0 -
So sorry you're all experiencing this. It's not fun to watch either. My husband has seizures in his sleep, too. They're complex partial with a grand mal thrown in about once or twice a year when he doesn't refill his Lamictal on time.
He's been losing weight with me, simply by lowering his portion sizes and cutting out excess sugar and artificial ingredients. He's lost about 25 pounds since late February/early March.
I'm really proud of him (guess I should tell him!) because he was a huge Mountain Dew and sweet tea addict. Now, he's said that he can't even drink them anymore without getting sick. We went for a walk last night and at the point where we'd start heading home, he kept going forward.
I've never thought that maybe his seizures could be diet-related. They started when he was just a little kid. He'd be climbing trees and he'd all the sudden fall out of them. Or he'd be in the middle of something, and just start seizing. His doctor diagnosed him with a malignant brain tumor. He had successful surgery at 9 years old, followed by radiation, and so far, the tumor hasn't come back (he's 37). But, the scar tissue has caused this condition.
I'm just glad it's not during the day when he has seizures. He has a master's degree, a full time job, can drive, etc. So it's only when he's under a lot of stress, etc., that the seizures start up at night again. Otherwise, they're well controlled by his medication.
That's fantastic - he sounds really motivated!
I have my own thoughts as to what caused my seizures. i was attacked at the age of 21 and beaten to a pulp, left for dead. I blame that. I suffered with anorexia for 3 years following this attack and used alcohol to deaden the emotional pain. Seizures started about 3 years later, shortly after having my 2nd baby.
I can drive now too and live a full life, but for a very long time i didn't.
I work for The epilepsy Society now - which is VERY rewarding and it's helped me deal with my condition.
My swimming & cycling keeps me sane.:happy:0 -
Your condition sounds very similar to mine (tabbykat), I generally have seizures upon drifting off to sleep or upon waking up from sleep,, secondary generalized I've been diagnosed with, every single seizure I've ever had, I've had warning through ringing in the ears, which gives me time to get into a safe position, I've studied and studied and studied why this occurs I ask questions keep tabs on what my neurologists say and if they go against anything that I've previously been told by them, (I ask them why!) Most of the time I don't get a response just a stupid look as if I shouldn't of asked, medication hasn't been as kind to me as it has been for many others, what has helped me is dieting right and keeping healthy along with traditional Chinese medicine, blood flow can be a major factor for some, what happens to a car when it runs out of petrol?? it coughs and splutters kind like when we all have seizures and start having convolutions, they've tried over 10diff meds on me, multiple MRI's EEG's the lot, but why try me on random meds putting my liver kidney's etc all at risk?? You can't fix a pc if you don't know what's wrong with it right, it's only commonsence..0
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I do also. I started having seizures when I was 9. I am 37 now. There was no real reason for the onset of my seizures other than hormones. I have been very lucky that I have been able to stay controlled by medication. I haven't had a problem with my diet. My main problem is stress and not getting enough sleep. Those are my triggers. I am only 4'11 and 139lbs though so my cal range is between 1350-1500 daily anyway.
Feel free to send a fr. req.. always open to new friends.. especially those in similar situations 0 -
Your condition sounds very similar to mine (tabbykat), I generally have seizures upon drifting off to sleep or upon waking up from sleep,, secondary generalized I've been diagnosed with, every single seizure I've ever had, I've had warning through ringing in the ears, which gives me time to get into a safe position, I've studied and studied and studied why this occurs I ask questions keep tabs on what my neurologists say and if they go against anything that I've previously been told by them, (I ask them why!) Most of the time I don't get a response just a stupid look as if I shouldn't of asked, medication hasn't been as kind to me as it has been for many others, what has helped me is dieting right and keeping healthy along with traditional Chinese medicine, blood flow can be a major factor for some, what happens to a car when it runs out of petrol?? it coughs and splutters kind like when we all have seizures and start having convolutions, they've tried over 10diff meds on me, multiple MRI's EEG's the lot, but why try me on random meds putting my liver kidney's etc all at risk?? You can't fix a pc if you don't know what's wrong with it right, it's only commonsence..
I understand your frustration. I still get angry that i have this condition and that there is still so much ignorance surrounding it. I'm in London tomorrow at the Neuroscience Hospital, this is where i do my training for The Epilepsy Society and it's helping a little in understanding the limitations that neurologists have in relation to understanding and treating this condition.
I am an Information giver but not an advisor and so any opinions i have on here are not necessarily a reflection on The Epilepsy Society, but if i can be any help with anything then i have the means to help as much as possible, if anybody needs me!
Sometimes i really let this get me down, usually if i find it controlling my life, such as insurance policies on my mortgage or coming up against people's discriminative views.0 -
hi there i have photo sensitive epilepsy and i also find it hard to loss weigh. i am on medication and those side effects are weight gain so i have to work harder i have lost weight since starting my weight loss journey but seem to have come to a stand still. does any1 out there have any suggestions as to how i can kick start my weight loss again0
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Hi everyone,
I'm glad I stumbled across this thread. Reading everyone's stories has been very interesting, and it's amazing how common epilepsy is.
I started having seizures (complex-partial and simple-partial) when I was 15, but I didn't know what they were. I just thought they wered odd episodes everyone must have from time to time. I was diagnosed with epilepsy at age 19 after having three tonic clonic seizures in one night. I had a mild case of encephalitis when I was 15, so the doctors thought that may have been the cause.
My tonic clonic seizures are controlled by my meds, but my simple partials and complex partials are still poorly controlled (I'm in my mid 20s now). I'm currently taking Tegretol, Lamictal, and Onfi (clobazam). I had a four day video EEG in February, and half my seizures are in my sleep (which I'd suspected, because sometimes I'd wake up in the morning and be confused for hours). They were hoping to ascertain the focal point of my seizures so I could have surgery, but unluckily, they couldn't. In June I had a vagus nerve stimulator implanted in my chest Since then I'm still getting seizures, but I've noticed that my recovery time is remarkably faster, and I'm not as disorientated, etc., afterwards. Each month or so my neurologist increases the 'emission' of the stimulator, so hopefully we'll continue to see an improvement, and maybe I can go off some of my meds. I'm on really high doses of all three meds, and sometimes I find the side effects of these meds more debilitating than the seizures!
I've only gained about 10 pounds since starting these meds, so I guess I'm lucky. Does any one else find it hard to exercise for more than an hour or two at a time because of the side effects of the meds? The vagus nerve stimulator also gives me a sensation of shortness of breath when it's activated. Does anyone else have a VNS device?
Have a good day 0 -
Hey I'm an epileptic or as I call it "mental twerker" :drinker:
I have tonic clonic and reflex anoxic seizures.
I am on an LGIT diet for my seizures and *kitten* tons of kepra.
My main triggers for seizures are high blood sugar, fevers, and high heart rate. (related to my underlying disease of Dysautonomia)
Been seizure free for a couple months so far with my diet and also have lost a bit of weight.
[/url] 0 -
I just stumbled on this thread because I was hoping to find some people that could relate. I have Juvenile Myoclonic Epilepsy (so tonic clonic, Myoclonic and a few other types mixed in). I take Keppra and Topamax and I have been having the joy of side effects of both. Who knows if it is the change of seasons but some days I really don't want to get out of bed. I have even been taking naps during lunch instead of exercising. I swear I feel myself swelling and gaining weight while at the same time feeling upset like there is nothing I can do about it. I am trying to weight the good with the bad... like OK you haven't had a seizure in a while and can drive so why are you so sad that you are cold and have no energy. Suck it up, right? Can anyone else relate? Does anyone have ideas to get out of lack of energy slump. I am already drinking 2 cups of coffee a day and an energy drink... that won't help!!
I would suggest to myself change medicines but I have done that sooooo many times I am actually at a point where I think the side effects are better than not having seizures. I will accept friend requests too!0 -
I just stumbled on this thread because I was hoping to find some people that could relate. I have Juvenile Myoclonic Epilepsy (so tonic clonic, Myoclonic and a few other types mixed in). I take Keppra and Topamax and I have been having the joy of side effects of both. Who knows if it is the change of seasons but some days I really don't want to get out of bed. I have even been taking naps during lunch instead of exercising. I swear I feel myself swelling and gaining weight while at the same time feeling upset like there is nothing I can do about it. I am trying to weight the good with the bad... like OK you haven't had a seizure in a while and can drive so why are you so sad that you are cold and have no energy. Suck it up, right? Can anyone else relate? Does anyone have ideas to get out of lack of energy slump. I am already drinking 2 cups of coffee a day and an energy drink... that won't help!!
I would suggest to myself change medicines but I have done that sooooo many times I am actually at a point where I think the side effects are better than not having seizures. I will accept friend requests too!
I can absolutely relate. I suffer from SAD on top of my regular depression and seizures. And I live in WA no less.. the most bipolar state EVER! I have to force myself to exercise most of the time... I am also on Topamax btw.0 -
SENDING Friend request NOW 0
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Hi! I have had seizures since I was 16, so about 13 years. I have taken Tegretol XR during that whole time but still suffer from focal seizures especially when tired. Taking Tegretol makes it super hard to find the energy to exercise as one of the side affects is being tired. I can't say I really know what it is to feel totally rested and energized. But I am really trying to get my act together to lose the 100 pounds and hopefully will learn to eat better thus assisting with the control of my seizures. Mine are caused by a piece of my brain not growing out with my skull (a total fluke thing, by the way) which has caused a large amount of scar tissue in my right frontal lobe. So I will always have to be on medication, unfortunately. Anyway, good luck to you on this journey!0
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