Hi all

[Eli]

I had my first grand mal nearly 6 years ago as an adult and have a consistent history of partials since, with several grand mals scattered in between.

Prior to getting insurance the ambulance would take me to the emergency room, run some tests and send me on my way with some meds. Since these happened at various locations my medical records were scattered. Since getting insurance I finally had an MRI, EEG and contacted the other ER's and have all my records. The neurologist/tests determined I have right sided MTLE with sclerosis on the hippocampus, photosensitive epilepsy and my epilepsy is refractory.

I've been on Dilantin, Tegretol, Vimpat and Keppra. The only one I can tolerate is Keppra at what the drs consider a low level. 750mg 2x daily. I still average about 5+ seizures a week.

I am finally seeing an Epitologist as my neurologist said he's done all he can. He said...have surgery, I.. :dontknow:

Anyways, I like my epitologist and am scheduling my several day -> week long inpatient eeg.

I have been dead set against surgery. I've had so many misdiagnosis', been guinea pigged on too many meds and was simply tired of dealing with it.

Anyways, I thought it would be a good idea to join and become active in some of the epilepsy forums and get some feedback from others that are living with it. I've spent a ton of time researching my conditions, new technology etc, but I still don't personally know anyone else.

So, thank you for providing the outlet.
:hello:

 

[epileric]

Welcome Eli

So glad you could join us. The people here are very supportive. It is great that it's the one place where I see people with issues similar to mine with regards to epilepsy.

I've been offered operations as well & feel the same way you do. The more persistent the doctors get without giving me details of what they'll do the more suspicious I become.

There are members here that have had operations that might be able to give opinions from what they experienced.

Meanwhile get comfy, check the site out & feel free to join in with your :twocents:

 

[Eli]

Thank you. I am reading, responding and feel very comfortable here.

 

[Nakamova]

Hi Eli, welcome!

If you haven't taken a look at neurofeedback, you might want to consider it -- it has helped some folks with refractory seizures. I don't know where you are in California, but you might want to contact these folks too: http://www.andrewsreiter.com/

Best,
Nakamova

 

[Eli]

Thank you for the info and link, I saved it! We're in So Ca. I'm still farting around with my settings and updating my profile but haven't figured out everything or how to do a signature.