New to Epilepsy and this site

[Bergoomay]

Good evening all, I wanted to take this time to introduce myself. I am Bergoomay and I found/joined this site yesterday. It has been very inspiring to me in the 24 hours I have been a member.

I am 38 and enjoy time with my family and running for exercise and stress relief. I went out for a 10 mile run one Sunday and by Tuesday was admitted to the hopsital for 3/4 days where I was diagnosed with Generalized Complex Partial Seizures. I had 12 episodes in less than 6 hours. Not really sure what that means so I am looking for some explainations if you have any.

My symptons are feeling lightheaded and then I feel like I can't open my eyes for about 30 seconds - 2 minutes. I can hear everything that goes on around me, but can't speak or open my eyes. Has anyone else experienced this type of seizure?

I have been to two different neurologist since early June. Had 2 Sleep Deprived EEG's and a 24 hour EEG test done. Both of the Sleep Deprived EEG's confirmed epilepsy but the 24 hour test did not reveal anything; even though I had 14 documented episodes while connected to the machine.

I was originally started on Topimax but now am taking Keppra which seeems to be impacting my mood. Yesterday was a rough day until I found this site. Thank you Stacy and family for building such a wonderful site for us to be able to post, share and education.

I am looking for a good software to track my daily routine, food, exercise, meds, seizure activites, etc. If you have any recommendations, I sure would appreciate them. I just want to be able to store the data on my laptop and not on a server somewhere.
Thank you!
Bergoomay

 

[epileric]

Welcome to the site Bergoomay

So glad you're getting good use from the site. It's always good to have another person who can utilize the site as well as someone that can contribute.

It's great that you're documenting your seizures & routine. Personally I just use excel but I do wish I had more room to read things in the little cells. Recently someone posted a list of sites that have software to track things so check it out http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

 

[Nakamova]

Hi Bergoomay, welcome!

I'm sorry you're having such a tough time. When you're new to epilepsy it can feel especially scary. The folks here at CWE have all been there, so take heart and comfort, and feel free to ask for help or a hug. The members also have a ton of good advice for how to cope with the meds. One recommendation -- Vitamin B6 has helped some people with the moodiness that Keppra causes. You might want to talk to your doc about adding a B Complex vitamin with B6 to see if it makes a difference.

The link below lists some different tracking software options:
http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

I don't experience complex partials (I have tonic-clonics), but plenty of other folks here have them, and will chime in I'm sure.

Best,
Nakamova

 

[Bergoomay]

Thanks Epeleric and Nakamova. I have one question that is confussing to me right now. What is Tonic - Clonics? Is that the Grand Mall Seizures? Thank you for educating me on this difficult topic. Most Dr's assume you know everything about it when in fact you know NOTHING.

 

[epileric]

Yup, Tonic-Clonic is a grand-mal.

In medicalese (medical language) Tonic refers to tension & Clonic refers to shaking.

 

[epileric]

Actually this will give you the names of all the seizures & tell you what defines each one.

http://www.webmd.com/epilepsy/guide/types-of-seizures-their-symptoms

 

[Endless]

Hi, Bergoomay,

Welcome to CWE! I'm glad you found us.

I'm so sorry things are rough right now. When I was first diagnosed about 9 months ago I was scared silly. And confused. The people here gave me tons of support, and helped me understand all the things my doctor didn't have time to tell me. You can probably tell I'm a big fan of CWE.

An EEG doesn't always pick up complex partial seizures. One reason is that the partial seizure may be coming from a place in the brain that is too deep for the electrodes to pick up. The frontal lobe and mesial temporal lobe especially. Did your doctor say where in our brain he thought your seizures were coming from?

EEGs also often show abnormal brain waves inbetween seizures. This is from changes in the brain made by the seizures. If you haven't had seizures long enough or strong enough the EEG might not show abnormalities inbetween your seizures.

I was on Keppra for awhile. When I wasn't busy being angry I was busy being depressed. People in here have said exercise and B vitamins helped them with the mood issues. Though if you run, and you are still having complex partials, keep yourself safe. Maybe run only with a partner and stay away from busy roads.

Will you let us know how you are doing?

 

[Bergoomay]

Thanks all for the insight and education.

Endless, I am sure at some point the Dr's have said where the seizures are generating from but it went right over my head with most of the other information they were saying. I normally have my husband there to help me sort through what they saying just so I have his perspective on it as well so I will have to ask him if he recalls that information. The one thing the two Neurologist have been clear about is don't run by yourself. Which I am lucky to have a running club for work day runs and on the weekends, I just make the same loop around our subdivision which everyone knows me and I usually take someone with me. Given I am just now able to start running again, I am only running about 5 miles on a long run day (Saturday) and sometimes, I just do that on the treadmill if no one is around to run.

Have a great day.