Anybody else have Epilepsy?

Options
TriFinders
TriFinders Posts: 53
in Health and Weight Loss
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
«1

Replies

  • tabbykat6802
    tabbykat6802 Posts: 233 Member
    Options
    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.
  • TriFinders
    TriFinders Posts: 53
    Options
    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?
  • milehighcritic
    milehighcritic Posts: 199
    Options
    I don't but my mother does. She has lived with it since she was 10.
  • __Di__
    __Di__ Posts: 1,630 Member
    Options
    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 xxx
  • dgoradia
    dgoradia Posts: 109 Member
    Options
    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?
  • TriFinders
    TriFinders Posts: 53
    Options
    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
  • __Di__
    __Di__ Posts: 1,630 Member
    Options
    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:
  • SurfyFriend
    SurfyFriend Posts: 362 Member
    Options
    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!
  • SurfyFriend
    SurfyFriend Posts: 362 Member
    Options
    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.
  • TriFinders
    TriFinders Posts: 53
    Options
    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 :smile:
  • trud72
    trud72 Posts: 1,912 Member
    Options
    me also, :sad:
    I started in 1987! a rather long time ago now I was 15 at the time,,,,
  • Lotte34
    Lotte34 Posts: 429 Member
    Options
    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!
  • TriFinders
    TriFinders Posts: 53
    Options
    So nice to meet you all :smile:
  • thomasmck85
    thomasmck85 Posts: 6
    Options
    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
  • jillsjourney
    jillsjourney Posts: 167 Member
    Options
    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.
  • lillith1991
    lillith1991 Posts: 70
    Options
    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.
  • ajcmoran2005
    ajcmoran2005 Posts: 173 Member
    Options
    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!
  • TriFinders
    TriFinders Posts: 53
    Options
    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 day
  • WhiteGirlWasted13
    WhiteGirlWasted13 Posts: 178 Member
    Options
    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.
  • TriFinders
    TriFinders Posts: 53
    Options
    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:

Categories