Hope This Is In The Right Place/ Feeling IDK?

[msat1981]

So far I like this site I've been reading a lot of posts on here

I had a horrible reaction to generic keppra so my dr (last monday) told me
to stop. I did but I feel like that crap messed me up. I ride in a car and when we get to a stop light I feel like i'm still moving and it messes me up. I had pulsating headaches due to my glasses just being on my face and the area by my ears. As this garbage first worked its way out the jerking increased but finally this past friday i wasn't scared to go to sleep i didn't have the twitching so bad.

Anyway I'm terrified to even try another med. Tegretol (6 years ago) made me way too sleepy all the time. I stopped that med on my own and never tried anything else. Twitching started to increase lately but the event that made me see the neuro was in april i noticed the flourecent light in the cafeteria was bothering me. I was getting super anxious because of the increased twitching (mouth and hand) but anyway sometime in april while eating lunch in there i was kinda nervous as is but what happened is i blanked out for a second or two i just saw white and had the feeling like i was going to pass out. i caught myself and walked away and felt dizzy and unbalanced. um what does that sound like to any of you???

anyway i make an appointment with the neuro she listens to me and diagnoses me JME (my first neuro was um well too casual about it) okay so i'm off the generic keppra one week now and i feel like a person again and the jerks are easier to deal with than the medicine!

today at lunch i was tired because i hardly got any decent sleep (i have a hard time sleeping that is just the norm for me) and i kinda spaced out but knew what i was doing and i had a strong upper body jerk kinda thing but held on to what was in my hands. Scared the hell out of me ( i do know about being sleep deprived i learned that one on my own but ugh!)

i'm convinced the med messed me up but anyway i am extremely terrified to try a new med i mean terrified. id rather deal with my twitching but then i'm scared it will eventually progress over time?? I only had one seizure where i passed out but what made me pass out was getting my blood drawn and being a sissy then the seizure took place that was 6 years ago

need advice? can anyone help describe what is going on??? support
i think i'm still in DENIAL of all this

 

[RobinN]

Am I reading this correct? You only had ONE seizure prior to being put on medication?

My daughter tried four meds, and each one messed her up. They spiraled her life out of control. Getting the drug out of her system took about a month. It wasn't until we started making nutritional changes that her seizures began to reduce in number. We decided that a few seizures were worth stopping the drugs and all the side effects.

I am not sure why you say you think you are "in denial of all of this". What you are experiencing is quite real.

 

[msat1981]

Yes you are reading it right. I got put on a med because my eeg was abnormal and showed the activity but i wasn't diagnosed with anything till now. My neuro now said i have general spiking and i'm scared to know what that is

I never had any sign of anything before i had that seizure. My neuro at the time wasn't a help at all i told him about the mouth twitching that was new to me and he just was kinda like whatever.

I'm thinking i'm going to have to change some habits of mine as well
I guess that's where the denial is I don't want to believe i have this
but when the stupid jerks happens i'm reminded

 

[Endless]

Welcome! I"m glad you found us here in the forum.

I'm so sorry to hear about your diagnosis. The time right after diagnosis is so hard. It's tough to understand what's going on, and it can be really scary. Everything is confusing - the seizures let alone the medications.

It sounds like maybe you could have been having more than one seizure? Auras, twitching, "feeling weird," spacing out, ect. can all be seizures, too. It took me months after my diagnosis to learn all my different kinds of seizures and to be able to recognize them when they happen. Here's a link that talks about types of seizures: http://www.epilepsyfoundation.org/about/types/types/

Medications can mess with you, but often that goes away. I'm on my 4th in 6 months. The first three (Keppra, Lamictal, Topamax) had some pretty awful side effects for me including a nasty rash. I'm on my 4th now - Trileptal. It has some side effects for me too, including a rash and dizziness, but we're trying to hold out and work through it. Side effects often get better over weeks or months if you hang in there.

Many people in here had to go through several drugs until they found the right one for them. Everyone is different in how well a med works and what side effects they get. Dizziness is not an unusual side effect. It may get better over time.

In the meantime, it may help to keep a seizure journal. It will help your doctor treat you, and will help you figure out what's a seizure and what's not, and what your triggers are. Write down at a minimum:
- when you are feeling weird, twitching, etc.
- time of day and how long it lasts
- any possible triggers like light, not eating or eating, alcohol, etc.

Some people also track how much they sleep, and when and what they eat.

Quitting meds cold turkey can bring on more seizures. Your doctor will let you know how to step down the dose to get off them safely. But often if you talk to your doc he can suggest a change in dosage or schedule that can make your side effects better. Or, the side effects may get better over time on their own, with some patience.

I'll be thinking positive thoughts for you. I hope things get better for you soon.

 

[Nakamova]

Hi msat91, welcome to CWE!

Be careful going on and off anti-seizure meds. They're so powerful that going on or off too fast can cause seizures. And people tend to be affected by even tiny doses. There are several meds out there, so don't give up -- it can take some trial-and-error to find the right one and the right dose. It can also take some while to find the right neurologist. If you're happy with the one you have now, don't be shy about asking what things mean -- about your diagnosis, about all the options for meds and treatments, what your EEG indicates, if something strange you're experiencing is a seizure or a side effect. There are not stupid questions, and the more information you have the better. Feel free to ask a lot of questions here, too.

It IS important to be proactive about your health. It's important that you are eating in a healthy way, staying hydrated, getting enough sleep, avoiding emotional and environmental stressors. If you find something that seems to make your seizures worse, stay away from it. If flashing or fluorescent lights bother you, try wearing sunglasses.

Good luck and hang in there, we're here for you provide support and advice.

Best,
Nakamova

 

[msat1981]

thank you all

i'm having a hard time figuring out what is going on???
I have those myoclonic jerks but I'm trying to figure out the whole aura thing?? I've been reading what other people experience and looked up some stuff on websites but nothing really matches what I feel??? I hate having the weird feelings. I don't know if it's anxiety or if it really is a seizure type deal???

I was surprised when my nuro told me to just stop the generic keppra like that?? i feel like my brain feels like it has a free pass to do what it wants but the horrible effects i was having on it were so bad i'm glad she did just have me stop.

I will talk to my dr in detail before i start a new med i'm sensitive advil even makes me sleepy!

A journal is a good idea i will have to try that and i might need to start wearing my cop sunglasses to work i sit by where the flourecent lights group together!! So I might ask to switch where I sit

Thank you all :banana:

 

[Endless]

Msat,

I know it's really hard to put auras and seizures into words. Can you try to describe to us how you feel? Weird feelings are common in epilepsy, but everybody is an individual and feels a little different.

 

[msat1981]

Lets see here???
when i start getting nervous and paranoid (when i am where there is a lot of flourecent lighting) I can almost get a feeling like i want to pass out type thing like a wave that's why i think that could be anxiety???

the most common though is sometimes i don't feel right like if i move too fast at that moment i could pass out or something and then i get scared. and now since generic keppra from hell has been stopped i get waves of an ugly feeling going through my body but mainly the left side.
and now after the med if i try to go and lay down (at work mainly hardly at home)
and i want to close my eyes and try to doze off for a sec it feels/looks like when your tv shuts off all quick like a zig zag like my brain shorts out? but only when i close my eyes when i'm feeling odd.

at home i obviously feel more calm or outside but the office lights at work kill me gah! i turned down the contrast on my computer screen so that doesn't bother me anymore.

that's the most i can say i am experiencing now but before the G keppra i would get the overwhelming feeling to passout only because i would get myself all panicky
i still had the mouth twitching though