New to the Group

[ohighocutie]

I guess I am not sure exactly where to begin. I am new to this kind of life and have experienced many things I never thought even possible. In August 2010 I had what I was led to believe was a "common" brain surgery and was never told that developing epilepsy was a possibility. It wasn't until around March of this year I was in a room with friends and feel out in my first seizure. Since then I have had dozens and my life has completely turned for the worst. I am on medicines now and I am working hard at maintaining as "normal" of a life as possible but I am finding it to be very difficult. With a medical driving suspension, 2 brain surgeries down and 2 more in the near future, SSi denied 3 times and now waiting on a court date to see a judge I kinda think I would have rather went blind then deal with everything I am subjected to now. I am here in hopes of finding people with similar stories that understand what I am going thru and what may lay ahead of me...

-Michelle

 

[Nakamova]

Hi Michelle, welcome to CWE!

It sounds like you've had a very rough year, to say the least. Unfortunately, many folks are just as frustrated by the "side effects" of epilepsy -- struggles with doctors or health insurance, social and financial burdens -- as by the epilepsy itself. It's unbelievable that you've been turned down for SSI. I hope you can get the judge to see the light.

Are your seizures controlled now by the meds?

Best,
Nakamova

 

[ohighocutie]

...

Well... we are working at getting my seizures under control at the moment. I am doing better since the raise in Keppra, but I had a seizure the other day. I had a really bad seizure a couple weeks back in my EEG video test they did. I mean honestly... the needles that were put thru my jaw were beyond painful I can't even begin to describe... but I think that watching the video of my seizure and thinking about what my family and friends are subjected to... let alone what I go thru in that moment and the hours to follow is an even worse feeling. I only had my first seizure sometime around March. But honestly that is the first time I was with someone that was able to tell me what happened. I don't always know when I have one while I am alone. But since March... there have been atleast a dozen known seizures. It's horrible.. completely life changing...

 

[Nakamova]

I have had quite a few tonic-clonic seizures -- some by myself, some with friends. For some reason it doesn't faze me, and I've been lucky enough that it hasn't fazed them. I know they look very scary, but maybe since I'm unconscious during them they don't register as scary to me. I haven't ever seen what I look like seizing -- if I were to, then I might feel differently about them. It probably helps that it's been 12 years since my first seizure, and over 3 years since my last one. And I know it helps that I've been able to control them with meds (Lamictal in my case).

This may or may not be relevant for you, but... Keppra can potentially cause moodiness, fear, depression, rage, and heightened emotions overall. You definitely have plenty to be emotional about, but if you do sense that the med may be making things worse, let your doctor know. Some people have found that taking a B-complex vitamin with B6 helps with this particular side effect.

 

[Cint]

we are working at getting my seizures under control at the moment........ thinking about what my family and friends are subjected to.... let alone what I go thru in that moment and the hours to follow is an even worse feeling..... I don't always know when I have one while I am alone.... there have been at least a dozen known seizures. It's horrible.. completely life changing...

Hi Michelle,

I've had epilepsy for over 30 years now. My seizures started when I was 22, out of the blue. I've many different meds to no avail and then the doc sent me to a neurosurgeon. I had a left temporal lobectomy and was seizure free for 14 months. After the surgery, I started having more TC seizures as well as CP's. So the dr. had me try the newest drugs, and some that were in the trial stage, nothing worked to control my seizures. In 1998 I had the Vagus Nerve Stimulator installed, and although it has reduced my seizures, especially the TC's, it hasn't completely eliminated all of them. Plus I still have to take medication for the rest of my life along with it. I have two children (grown now) who have witnessed many seizures while growing up. They now know what to do when/if they witness someone else in public having a seizure, so I view it as a good learning experience for them.

So yes, it was/is a horrible, life changing experience, but with time things will improve and settle down.