Anybody else have Epilepsy?

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..

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

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!

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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

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.

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.

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