Hello to all!

[Bobby]

Hello Everyone!

I was born with hydrocephalus and immediately had a shunt put in. I had to have a shunt replacement when I was 7 but my shunt has been okay ever since! (knock on wood!)
I had a gran mal when I was 12 and was then diagnosed with epilepsy. I was stable with taking Neurontin after the first gran mal so in high school the dr told me to get off of meds because I was completely stable and hadn't had a gran mal in so long. This was a mistake that I live with everyday! After getting off the neurontin I started having partial/complex seizures and even a few gran mals.
With the help of Keppra the gran mals were under control, but the partial/complex seizures have never stopped completely. I have a couple a day if I'm having a bad day or a couple a week if its a good week. I have learned to live with these seizures, and with the help of gabbapentin and keppra have lived somewhat of a normal life.

Recently, I started having myoclonic jerks!! This last spring the dr. put me on generic Keppra and I started having slight arm jerks. I went back to the dr. and he said my arm jerks might be related to the generic keppra....so I switched back to the brand name keppra. The arm jerks were less with the brand name keppra but recently I started having full upper body jerks. The full upper body jerks happened so frequently and wouldnt stop I had to go to the ER. I've had to miss tons of school classes and I dont know why this is happening!
Has anyone ever heard of breakthrough myoclonic jerks??? My Mom said it might be related to a bad batch of keppra but I dont know anymore???? If someone has any information it would help a lot! Thanks so much
I am happy to find this site!!!!! Hello to all!

 

[epileric]

Hey Bobby, Welcome

Good to have you here.

I've never had problems with myoclonic jerks (or at least not enough to remember) but I do know that as we get older our seizures have a tendency to change. They might just be a new part of having seizures or they could be a new reaction that you didn't have before to your meds.

Sometimes these things are hard to figure out since our bodies are constantly changing. Give it some time & I'm sure more people with more experiences & views will add their two cents as well.

 

[Nakamova]

Hi Bobby --

Welcome to CWE!

Unfortunately, there can be a lot of explanations for a change in seizures -- including switching from brand to generic AED, or getting a batch, or as Eric says, part of the aging process. One good way to help pinpoint a cause is by keeping a seizure diary/journal, where you can track the frequency and kind of seizures, along with details relating to medications, diet & nutrition, metabolism, fatigue, exercise, activities, stress -- anything that might potentially be a seizure trigger.

Best,
Nakamova

 

[Bobby]

Thanks!

Thanks for the warm welcome!

Thanks for your advice! I am starting to monitor more of my eating habits and when my seizures occur, so I'll keep doing that and hopefully that will help! I hope these myoclonic jerks stop soon, but we'll see....

 

[RobinN]

Welcome Bobby -
I hope you find CWE a home away from home. We all have different stories, but share a common bond.

The information shared here has been invaluable in helping my daughters quality of life. I hope you find ways to improve your situation as well.

 

[Meetz1064]

Hi, hello

and how do you do, Bobby!!

Welcome to CWE!!

As you get older, hormones do funny things, and it may very well be that your hormones are part of the problem right now. Have you asked your doctor to check your hormone levels lately?? There are a variety of hormones in everyone's body that can cause problems, so I'd ask. Quite often women are tied to hormones for catamenial epilepsy, but men also have hormone issues too--and it can tie into E.

Feel free to check out all the nooks and crannies here, there are plenty of them, and I'm sure you're going to find plenty of friends, too. The Library and the Kitchen are great for information, and the Padded Room is greaat for venting when you need to.

You may also want to consider nutritional changes, too, as well as neurofeedback......

Take care!

Meetz
:rock: