New Here Hoping for some Information

[LynB]

Dont know where to start, I tried another support site but when it became apparent the things they were talking about were to me rather offensive I unsubscribed.

I have had a seizure disorder for a long time which started with a nocturnal seizure, after brain surgery etc (long story) I ended up on Dilantin and Pheno for over 30 years, then it happened some sort of episode and a car crash, no driving for 6 months and compliant on meds and over a year later it happened again. Now I am on dilantin and keppra. I cant drive and I feel like a prisioner. Meds changed to keppra and now I have an appt. with a Dr tomorrow that specializes in seizures and Epilepsy. I am hoping he can come up with something that my neurologist didnt but since I am better off than most I get the feeling I am not that big of a concern to the Drs. I guess I dont have alot of hope.

I am miserable now and so very angry. I know alot of you probably know how I feel but most really dont. I am lucky to have a husband that has been driving me around and I do work fulltime but still I feel like a burden.

Thanks for having a list for folks like me.

[Nakamova]

Hi LynB, welcome to CWE.

Keppra has a reputation for causing moodiness and "Kepprage", so some of the misery and anger you're feeling might be blamed on that. Taking a B6 supplement seems to help with those side effects, so you might want to give that a shot. Regardless, if the Keppra isn't giving you seizure control and is making you miserable, then definitely ask your neurologist about other medication options. In addition you might consider making dietary changes -- folks on this site have found that switching to special diets such as a gluten-free one has helped cut down on seizures. Another possibility is neurofeedback (if you can find an affordable practitioner near you).

Best,
Nakamova

[RobinN]

I can only imagine how you are feeling.
I take care of a teen that began having seizures at the age of 14, and have to work very hard not to have her feel that way. It is difficult.

Great to hear that you have a job and can feel productive. Prisoner is not so great. My daughter can not drive either, never got the chance to even try. We keep our fingers crossed though.

I have felt the same way you do that it doesn't seem like the doctors really put much energy into finding out causes or figuring out ways to help us out. That is why I became a student of The University of Google ;o]
I have researched a lot and have become knowledgeable so that I can ask questions and challenge some of the doctors approaches. For us nutrition kept coming up time and time again. That is our focus now and my daughters seizure threshold has improved quite a bit. It was deteriorating while on meds so we stopped.

I hope you find the support that you are looking for here at CWE.
WELCOME

[PhylisFeinerJohnson]

Welcome. I've been on sites where I've been bullied, so you're not alone. I think you'll find this a friendly, comfy place. Look around and see what "rooms" you'd like to visit. I check out a few every day. As for dilantin and pheno...you must have felt like a zombie! Just 10 years of dilantin made me numb. But in those days, they didn't have many alternatives.

Speaking of alternatives, if you're looking for a new doc, go to this thread... Comprehensive list of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric D It's organized by state and it's a comprensive list put together from people's personal experiences. I think you'll find it helpful.

[Cint]

HI Lyn and welcome,

I'm sorry to hear your seizures have returned. I also had brain surgery years ago and my seizures were worse after the surgery, so I haven't been able to work since, nor was I able to drive for years. I also take Keppra, and as Nakamova has said, it can cause anxiety, depression. It's also good to know you will be seeing an Epilepsy specialist, since they know much more about the disorder than the regular neurologists.

[dfwtexas]

Hi, welcome to our group! When I got diagnosed two years ago, I turned to internet for information to deal with it. I visited several sites and this was the only site where I found supportive, understanding people. I must have been to the same site, where I was treated rudely!
There is so much to deal with with seizures, having this wonderful group here makes it all so much better.
I have been on Keppra the whole time, although my levels have been adjusted. My initial problems were with being sleepy and I do get that when they up my levels. After I was on it for about 3 months, I went thru several weeks of Keppage, but that went away too.
I have simple and complex simples. Before my meds, I could have several in a day or go weeks between them. Keppra has helped a lot with seizure control, but I tend to have one out of the blue every 4-6 months....that is why they are still dealing with getting the level correct.
jenn

[Bernard]

Hi Lyn, welcome to the forum.

We try to keep the tone here at CWE like a dinner party. No one should be rude here though disagreements are healthy and natural in any large group.

What kind of information are you looking for?

[LynB]

To all that replied thank you. I saw the Specialist and was disappointed a bit, Im not bad enough and they dont figure they can know why I have these seizures. I went so long with none and now here they are. MRI and scans are ordered but he didnt seem to hopeful that they would show anything new. So I guess I am stuck inthis spot, no driving maybe never, trying to work so I can have heath ins. I sure need to keep this. Getting to and from work will be a challenge, thank goodnes my husband is retired and able to help me out. I just feel sort of trapped I guess.

The keppra is giving me headaches and I am still weaning off dilantin for now. No siezures but with me I guess that doesnt seem to mean much who knows.

I wasnt treated rude on the other list just the comments got a bit off color for my taste I guess. Wont go into that. Thanks to all of you who wrote and maybe I can learn what I need to so that I can deal with this.

[LynB]

Thanks for your reply, My MRI is tomorrow but after seeing the specialist I didnt get the feeling he was going to figure out why Ihave had these seizures after so long. The keppra is giving me headaches and I am down very down but I dont know that its the meds I am down because of the limits on me because of the seizures that may last the rest of my lifetime. I feel like I am not bad enought for them to really worry about it.
So it goes I guess. Could be worse I hear but sure could be better too.

[LynB]

Thanks for the list. One day at a time for me. MRI tomorrow with not much hope to find any causes for this so it goes. Thanks again.

[RobinN]

Many don't know the cause. I was wondering if anyone ever suggested neurofeedback to you? It has been quite useful for people with brain injuries, as it helps to train the brain to stabilize itself. I do suggest that you might want to at least read a bit about it. At the top of the page there is a group of tags you will find by clicking on the words it will take you to more info.

[Bernard]

... I just feel sort of trapped I guess. ...

You have some options. HTH:

Proactive Prescription for Epilepsy