2 seizures after 5 years of being seizure free..boo!

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Ivana

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Hello there!

My name is ivana and ive had epilepsy since i was 16. About a month ago i had 2 grand mals after 5 years of having no seizures..it was really devastating and i have had a really hard time coping with it since it happened..i dont usually feel like this after a seizure but these 2 really got me on a psychological level..

My memory was totally messed up for quite some time and i dont remember much of what went on for at least 2 weeks after the seizures..does this happen to anyone else? It really scared me this time..luckily my friends were there when it happened..they said that the second seizure lasted for a long time and that since i wasnt breathing, i was turning blue...

Im still terrified and paranoid..anyone have any advice on how i can get over this? Or am i just crazy??? Lol
 
I can understand how it feels having a seizure when u somehow start thinking that u have outgrown the prob! So sorry for u dear! Take complete rest! It does happen after the grandmals that u have a foggy hazy brain and do not understand anything. things are just in the floating mode. take care of urself! Did u go to the doctor? Ask him if u need blood profiling for the medicine u are having. Why u had this seizure? Was there any trigger? If yes....................be aware in the future. Have some nervine tonics. Well the best thing is to do what the doctor suggests! Wishing u a speedy recovery!
Shagun
 
Hi Ivana, welcome to CWE!

I'm sorry to hear about the seizure relapse, I know how that can feel. It's "normal" to fbe terrified and paranoid. After being seizure-free for so long, having a seizure is a bit like suddenly running into a nasty thug you had moved away from years ago. It will take time to recover your equilibrium. Be patient with yourself, and ask your friends to be extra gentle and supportive with you.

Were you on anti-seizure meds at the time of the breakthrough seizures? If not, have you gone back on them since? If you went to the ER you were probably given a big loading dose of an anti-seizure med, and that combined with the disorientation caused by the ER itself can make it harder to remember things. Some of the anti-seizure meds can affect mood, too, so that may be contributing to how you feel.

My worst seizure was one that occurred when I happened to be dehydrated and hungry. Post-seizure I was really out of it -- too out of it to eat and drink, which made the recovery process slower than usual for me. I felt foggy for at least a month, but I'm fine now. That will happen for you too.

Best,
Nakamova
 
I had a couple glasses of wine the night before the seizures and didnt get much sleep...i was having auras all day the next day..i should have known but i kept telling myself that im just tired..ugh..its really hard cuz i dont know anyone who has epilepsy so its hard to vent and be u.derstood..i mean, my family and friends are totally supportive but its not the same..
I took a month off work and spent most of it hiding out at home..my fam doctor gave me anti-depressants! I didnt take them cuz thats just silly.i went to my neuro and she was optimistic but im just miserable regardlezs :-(

Sorry to be a downer guys
 
Ivana,

I've just very recently joined the group, and I want to tell you that you'll find some wonderful and supportive folks here. I already have, and it helps a bunch with that isolated and depressing feeling. People on the forum are perhaps thinking that "This newcomer just can't stop blabbering. I'm already getting tired of him."

The fact is, I've been suffering with this lousy thing for well over twenty years, pretty much without any contact with other victims, so I guess I'm kind of letting it all pour out at once. I don't feel like I'm in any position to give wise advice like some of the others here, at least not yet, but I wanted to let you know that your seizure experiences seem a whole lot like mine and I know it's very depressing/frightening. Hang in there, Ivana, you'll feel better about yourself simply by being here in the arms of these great caring individuals who are soldiering on and trying for as normal a life as they can possibly live. It takes bravery and strength, and it sounds to me like you've got it, kid.
 
:agree:Its happened to me too. I went 8 years seizure free and then they returned seemingly out of the blue. I was on a bunch of different meds, tried the Keto diet, the VNS for a few years, and finally Depakote worked. When I was ready to start trying to have a family my dr wanted to switch me to Keppra since it is safer in terms of the risk of birth defects. Fortunately the switch worked, and for 2 years on Keppra no seizures. However, the seizures started again in January and we suspect it is because my body built up a tolerance to the Keppra. I tried Keppra with a small dose of Depakote since then, but it still didn't work, so now my dr has me off of Keppra and back on Depakote at pretty much the same dose I had been on a couple of years ago. Unfortunately it isn't working 100%. I am doing better than in the Winter and Spring in terms of the frequency and intensity of seizures and auras, but the emotional aspect is rough all around.

I was so thrilled when the Keppra had worked, because it had been so tough for years to find a treatment that would work. However, after 2 years I am still not pregnant and now the seizures have returned. Pile on the fact that I now have my driver's license suspended and we don't know why the dose of Depakote isn't working as well as we'd like, and its tough coping with my health. I'll never know what would have happened with my brain if I had never switched to Keppra 2 years ago, but I don't regret it since it was for the good of my potential offspring. Now it seems like the process is going slower than I'd like to get back in control of my health. I've been on the Modified Atkins diet for almost 3 months and haven't seen it helping me yet, but I plan to stick it out for another few months. If it doesn't work, I'll get my carbs back but I'll be back to square one with my seizure treatment. If the diet + Depakote combination doesn't work, I have a feeling my dr is going to want to add a second medication, possibly a low dose of Lamictal. I'm resistant to going on it because I was on an adult dose of it when I was a teen, and had to come off because I developed a rash (and it only helped my seizures for 2 weeks before building up a tolerance). Ideally, I'd like to only be on one medication.
Overall, some days are tough, and I end up crying. The more positive days I have the attitude of "I'm going to kick epilepsy's butt!"
 
Feel your pain/sorrow/meh

I was 10 years free and 8 years of meds. Was at an area team meetings and by all accounts when I came round I howled like a banshee.

The only crumb of comfort is ...

You have LIVED this and you have SURVIVED it.

You will do it again.

Q
 
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