Anybody else have Epilepsy?

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  • Rmazula
    Rmazula Posts: 58 Member
    Hi! Happy to see this thread for support. I was disgnosed when I was 16 with absence seizures. I have had 4 grand mals in my life. I also have a tic disorder which is basically like myoclonic jerks without seizure activity. Weight loss has been a challenge. When I got off depakote (after 10 yrs of it) my metabolism improved so I lost a few pounds and its not as difficult. I can get exhausted though and feel weak which counteracts things. My husband & I want a little one soon so I've gone through several medication changes recently. Now am on lamictal 600mg day plus 4mg folic a day. The folic makes me feel yucky but the benefits outweigh the risks. Feel free to friend me :D
  • lynnemurray589
    lynnemurray589 Posts: 2
    I am too. I was diagnosed 12 years ago following a head injury. Prior to the injury I was a normal weight for my height but since all the fun of medication changes to find the right med combo for me i've had very little control over my weight as i've had some metabolism problems like some other people. Its nice to know there are others in the MFP community going through the same.

    Feel free to add me :smile:
  • Wendeee718
    Wendeee718 Posts: 4
    I was diagnosed at age 15 with epilepsy, I get tonic clonic grand mal seizures. I am now 31. I have been on many types of meds. I have gained soooooooooo much weight on depakote :( I absolutely HATED Kepra, it made me hostile and suicidal.

    I have been able to have 3 beautiful healthy children, thank God. With my 2 oldest pregnancies I was medicine free for the first trimester, then started meds again. I had 1 or 2 seizures while pregnant which was not that bad and thankfully I was safe and did not get hurt. With my little one I was on depakote all through my pregnancy but thank God he was fine.

    I have started my weight loss journey on November 17, 2013 which was at the Walk to End Epilepsy event. I walked the 5k and thats when I realized I was out of shape. I was exhausted just from walking!!!!!!!! I was the last person on my team to finish and looking athe pictures I cant recognize myself. This is the heavist Ive been.

    I am extremely unhealthy and on a very high dosage of meds at the moment which is why I want to lose weight. My triggers for seizures are lack of sleep, stress, alcohol use and low blood sugar.

    I am determined to get better. Im glad there is this forum topic, makes me raelize I am not alone.
  • Maleficent0241
    Maleficent0241 Posts: 386 Member



    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 :)

    YES, definitely. Some worse than others. I could barely get off the couch with gabapentin. I was super tired and super dizzy all the time, and had no energy to do anything. Topamax was tons better energy-wise, but I was nauseous all the time on it and that made it hard to work out. It's a never ending battle between benefits and side effects, isn't it?
  • HealthyBrandi
    HealthyBrandi Posts: 46 Member
    I had seizures for the first time when I was 12, due to a virus. I was then seizure free until 16, when I was diagnosed with epilepsy. They said that I have epilepsy due to the brain trauma I received from the virus. I was seizure free after being put on meds until 19. I then began having simple partial seizures along with grand mal seizures. Although my grand mal seizures are under control, my partial seizures happen weekly. I've tried various meds, but can't get the right combo. I'm scared to quit some meds, because I don't want the grand mal to start over again.
    Fortunately, I have had minimum side effects to meds. I just HATE not being able to drive anymore, and rely on others to take me around. I miss simple things like grocery shopping on my own, going to the gym, or visit friends at my own schedule.
    I have a neuro appointment in a few weeks, and I'm thinking of asking him to make some changes. Wish me luck.
  • Melwillbehealthy
    Melwillbehealthy Posts: 894 Member
    My son has 'myoclonic juvenile' epilepsy (early morning seizures), and was diagnosed at 19 years old. He's in his 30's now and doing well. He was told he'd have to take drugs for the rest of his life. He's never told anyone at work. He has stopped taking drugs and is trying to control it with a healthy lifestyle. It's tough for him as he has early morning seizures and has had grand mal and lots of petite mal episodes (I know they don't use those names anymore...sorry). I've read a lot on the subject and have been reading about 'Ketogenic' diets for epileptics...basically, cut out the sugar and carbs...I've never heard that he should cut calories. He's not overweight.
    Just curious why the low calorie recommendation.

    For those of you dealing with this, the good news is, my son has graduated from University with two different degrees and is married with two healthy, lovely children. I know that for anyone growing up with this condition, the future can be daunting.
  • dianegreennet
    dianegreennet Posts: 17 Member
    Hi!

    I'm finding all the threads I can now about this. I finally found you people! I have Temporal Lobe Epilepsy too. I have Complex Partial Seizures primarily. But other kinds have occurred. I started this Ketogenic/Modified Atkins Diet at the end of January. I've lost 5 pounds! That was easy too. I hardly ever exercise. I need to lose 20 pounds though.

    Since I started this diet I haven't had any seizures. I had one after I had just started. It had been a bad week already though, which led me to start this diet. A friend of mine recommended it, and when I called my Neuro about the seizures, he recommended it too. They must have been on the same wavelength!

    Diane

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