Need help coping

[carola]

Hi,
My name is Carola and I am new to this site.
I am 50 and was diagnosed 6 months ago with left temporal lobe epilepsy. I have my follow up with my neurologist next week to hopefully get my driver's license back. This has been the most difficult part of this! I have had anxiety related issues for most of my adult life, which I had no idea were auras and most recently, prior to diagnosis, had a complex partial seizure, thought I was having a stroke or something. This is so hard to deal with! I feel differently and am experiencing more tingles in my arms and legs now, although I am more focused since taking Keppra.
Can anyone relate?

[RobinN]

Hi Carola - what a nasty kick in the butt for your 50th BDay.
You might find some really good ideas in the book Epilepsy: A New Approach.
The meds did not work for my daughter and caused such horrendous side effects we took her off of them.

Welcome to CWE. I know you will find some very interesting reading here, and some others that are going through similar situations as you are.

[carola]

RobinN,
Thank you for your reply.
I will look for the book you recommended today.
Carola

[speber]

I hope things settle down for you soon!

Epilepsy is no fun...and the worst part seems to be the beginning when you're struggling to come to terms with it. As time goes by you will become stronger and more able to cope with the stress of epilepsy I'm sure!

You are an adult and I will assume here you had other stress in your life before E. I can tell you a common non-pharmaceautical treatment is reducing stress in any areas you can.

Some ideas:

• Music (my personal favorite!)
• Art (I know RobinN likes this one!)
• Walking (everybody should do this one anyway!)

Peace
Speber

[BuckeyeFan]

Welcome to our house here at CWE.

Sorry that we have met because of E, but I look forward to hearing from you in the future. I am 46 and have had E since 20. My seizure were tonic clonic seizures, though are better controlled now. I take Phenytek and Keppra. Keppra was what finally got me under control. I still have focus/memory/concentration issues, but I am functioning and trying to enjoy life.

Check out the thread Epilepsy 101. Lots of starter information there.

[RobinN]

I still have focus/memory/concentration issues, but I am functioning and trying to enjoy life.

Did you know that neurofeedback can all but eliminate this issue?

[BuckeyeFan]

I haven't written much about the neurofeedback in my posts, but I am definitely intrigued by it. Right now, I just try to keep my self moving forward. Caring for Mom has been pretty time consuming. Probably should be doing something more productive right now. I just came here for a break. Also need to replace a vehicle. My van went down for the count.

Mom has had a hard time emotionally with her cancer, plus my Sister's cancer. On top of that her brother passed away this week. Not that I mind caring for her, it just has taken a lot of my time lately.

I did get to till up my Pumpkin Patch this week. The seeds will get started this weekend. That felt positive this week. I love spring!!!!! As soon as I got done, my 2 year old grandson was in it plowing on his toy tractor. He as at the stage where he has to do whatever daddy and papa are doing.

Back to your point, the neurofeedback is on my radar. One thing I like about it is I can try it without messing around with my meds. They may not be perfect, but I am not having tonic clonic seizures.

[TeeTees]

Hi carola,

Welcome to CWE. One of the best things that you'll find on this site is that you are not alone, so don't try and sort it out by yourself.....there's plenty of knowledgeable people on here, some 'experienced' (unfortunately), so feel free to fire away with the questions.

It's bound to be a daunting time in your life right now - you've just discovered you have something that you feel you didn't have before.

One piece of advice I can give you (that I need to keep giving myself) is relax, relax, relax. Getting stressed out about things is my biggest hindrance, and my biggest cause of my seizure's.

So, go get yourself a drink, sit back, and type away your stresses on here.

[ashmstng]

Welcome to CWE!
I hope you like this forum I have met so many great people. Just like TeeTee said your not alone. We all are here if you need anything.

[brain]

and welcome to CWE!

Make yourself a home and indeed,
Epilepsy can be a struggle and a
challenge. But once you gain understand-
ing and your seizures become controlled,
you will become less fearful, and be
able to say I have Epilepsy but Epilepsy
doesn't have me. If your seizures are
controlled for a specific period of time
per the State / Providence / Country's
Laws - you may be able to drive again.

I had surrendered my own license on
my own, no Doctor had told me to give
it up. I just knew I had to do it and I
don't regret it either, I couldn't bear
the thought of putting my life or some-
one else's life at risk and live with it.
Or worse, if I had driven and killed
someone, I couldn't live with that either.
Ever since I had been driving since
being a teenager (and I was born with
this), and been in compliance with the
State's DMV Medical Board for years.
Over 40+ years of excellent driving
history - I gave it up.

Thus rings the old adage "Quit while
you're ahead" does ring true.

Easier said than done!

[Bernard]

Hi Carola, welcome to the forum.

Be sure to mention the tingling feelings to your doctor - it could be a sign of neuropathy or overmedication.

[alivenwell]

Hi! Welcome!

The stress is usually a factor for me. Once I control that, everything seems to fall into place. I walk at least 2 miles every night to fight the stress.

I also have the book RobinN mentioned here and it is excellent reading material. And, like Sperber, I love music. Art is my other passion.

The loss of a drivers license is depressing in a car-oriented society. With high gas prices, we'll probably see fewer cars on the road and more people car pooling or taking public transportation. We need fewer motor heads and more people who will find methods of revamping our decrepit transportation system. Our highways are overcrowded and abused.

I currently drive. But, frankly, it's my worst fear that some total idiot will hit me. I see people on their cell phones all the time while driving. Some put make up on. And, the best one yet that I saw was some dude who decided to stop at a green light, open a notebook sitting on the passenger seat, and pause for a minute or two until he moved. The same guy repeated this stupid action. Amazing!

I almost got hit a few weeks ago by somebody not paying attention. I had to slam on the brakes to avoid a collision. Where in the heck are the police when you need 'em?

With experiences like this, I want to take a bus...a big bus!

[skillefer]

Hi Carola! Welcome to CWE! Feel free to ask questions or just rant if you need to. It's hard when you're first diagnosed, but try to think of it this way...at least you know why you had those anxiety issues now. Now that you know what it is, you can start to try fixing it. You might try keeping a journal of what you eat, drink, how much sleep you get, as well as how stressed you are each day. That might help you figure out what's triggering your seizures. Anyway, with that said, welcome.

[alivenwell]

Carola, could you be experiencing neuropathy from diabetes? It might be a good idea to get a sugar monitor at a drug store. I know high levels of sugar can contribute to seizure activity.

[carola]

I thank you so much for your response!
I am feeling much better now!
I had my 6 month f/u with my neurologist and I should be driving very soon!
I am seizure free with the keppra and I am now on ativan for sleep/anxiety which is a lifesaver. The little tingles have disappeared. Also stopped using artificial sweetners, which I think was a problem for me.
Thanks again!!

[carola]

Thanks for your response!
It's so great to have this kind of support, people that really understand and care!
I am doing much better and hope you are doing well also.

[RobinN]

Really glad to hear that Carola -
I know Rebecca is triggered by the artificial stuff too. Nasty product.

[Bernard]

Whew! Glad to hear the tingling stopped. That's usually a pretty bad sign. Double treat on the seizure control.

[stilldancing_98]

Carola, you sound like a very positive person to me. A go getter. It is weird when you first get something like this isn't it. It's an out of control feeling? Pretty soon you will gain that feeling back and feel stronger again. Sometimes I think we get these reminders from beyond that we are not the ones in control. Somebody else is. And to live life happier and more thankful. Please , keep writing and letting us know what is going on. Blessings , Teresa

[skillefer]

with Robinn. THat artificial sweetener stuff ought to be outlawed. It triggers seizures in some people and plays tricks on the brain which can cause dieters to actually consume more calories then they would if they weren't drinking diet sodas. Nasty stuff.