Newly diagnosed

[wonderdogs]

So yesterday I found out I had epilepsy. I am 28 and I have no family history and my symptoms began in May of this year with no known cause. I have syncopal episodes, short-term memory loss, fatigue, episodes of tunnel vision, tremmors, and tingling in my arms and legs. I have been tested for MS, brain tumor, hypothyroid, all negative. Finally I saw a Neurologist who ordered an EEG and she called me yesterday to tell me that it was very abnormal. She started me on a low dose of Keppra and I am to increase it as I tolerate it. I am interested to learn more about my condition from others who share the same symtoms.

[Bernard]

Hi wonderdogs, welcome to the forum.

Here's a good place to start: epilepsy 101

[speber]

You've come to the right place. This is a very friendly place Bernard and Stacy have setup for everyone! Look around and ask all the questions you need!

Peace

[Shutterbabe]

Welcome.....I remember feeling so vulnerable when my EEG came back abnormal after the sudden onset of seizures. Your world shifts quickly and there are so many emotions involved and decisions to make.

I know you will find friends, valuable information and a sense of peace at CWE. I was diagnosed with Epilepsy 4 years ago and have finally found a safe haven on this site. Everyone has been beyond amazing and full of genuine care.

I am now on the path to trying alternative therapies thanks to Bernard's suggestions and have received excellent advice from so many others here.

[RobinN]

HI Wonderdogs.... Welcome!

I remember when my daughters EEG came back abnormal too. I was so sad. Yet I was also told that an EEG can look like that following an episode. When other symptoms started happening (which I now know to be med induced) she had another test which was negative. Then another which was negative 5 months later and a video EEG that was negative two weeks after that. I know that EEG's do not pick up all abnormal activity.

I guess sometimes the brainwaves can go into a tizzy though after a couple of seizures, then regulate themselves. At least that is what I was told. We are currently using a healthy nutritional plan, supplements, and bio-identical hormones with a very low dose of anti-epileptic drug's. She is showing fewer Tonic Clonic seizures since starting this alternative approach.

[Bee91]

Hi!
At least they figured out whats wrong and are being proactive about it. My EEGs have only been slightly abnormal so neurologists kinda thought I was faking seizures...It was a long process to get a final diagnosis in my case.
So at least that wasn't the case for you

Hopefully all goes well for you!

[Nancy]

Hi wonderdogs ~ Welcome to a wonderful board that will offer so many things to help and so much to learn.

[Megan]

Hi!
At least they figured out whats wrong and are being proactive about it. My EEGs have only been slightly abnormal so neurologists kinda thought I was faking seizures...It was a long process to get a final diagnosis in my case.
So at least that wasn't the case for you

Hopefully all goes well for you!

My Neurologist thought I was faking for 3 years before I finally switched to another. She thought that because my EEG's came back abnormal and she couldn't "physically" see me having a seizure that I must be depressed therefore, faking them.

I remember being so angry and fed up that I just quite seeing her altogether and switched to another physician.

[brain]

Ummm ---

One more time ... my post keeps
disappearing ...


WD!

Glad to have you here at CWE! I've always
had tons of abnormal EEG's and it's rare I've
ever had a normal EEG, but has your neurologist
considered any Scans - like MRI, CT, PET,
etc? I hope all works well with you! Stick
around - we're a crazy, I mean, a lovely
bunch of folks!

[wonderdogs]

Ummm ---

One more time ... my post keeps
disappearing ...


WD!

Glad to have you here at CWE! I've always
had tons of abnormal EEG's and it's rare I've
ever had a normal EEG, but has your neurologist
considered any Scans - like MRI, CT, PET,
etc? I hope all works well with you! Stick
around - we're a crazy, I mean, a lovely
bunch of folks!

I had a brain MRI to rule out MS and it was normal.

[brain]

Wonderdogs - that's not unusual.

But I love your unique User ID!
We ought to get you a Cape and
Outfit!



Never Fear - Wonder Dog is here!

[Meetz1064]

Wecome, WD!!!

KNOWLEDGE IS POWER when it comes to ep............but right now, I'm doing good to type this..............I will try to post tomorrow, and maybe post a couple sites that mite be useful to u.........................

g'nite...........

meetz

[Birdbomb]

Welcome Wonderdogs

Keeping your disorder in it's proper prespective will be the best way in dealing with it. Some people never get past the "pity-poor-me-I-have-epilepsy" stage. Don't get me wrong, you WILL feel like that from time to time. The trick is take the time to grieve over it and then move forward. Your life has changed in ways you never planned or wanted. You will learn to cope in different ways.

6 years ago, I was in the same position you are in today. Getting your support system set up is the beginning. Find a local support group. Keep a dairy of your seizure activity. date, time, place, type of seizure, those kind of things. And you will see if you can find triggers like stress, lack of sleep, flashing lights, cold weather, etc.

Welcome to the rest of the 2.5 million Americans with seizure disorders. You are NOT alone!

[Shutterbabe]

Birdbomb.....is cold weather actually a known trigger? Never heard that before.

Any thoughts about living or visiting higher altitude's possibly causing seizures?????

[Birdbomb]

Hmmmm...maybe not cold weather but GETTING cold. If I start shivering from the cold, it will bring on a seizure. My recent surgery had me very nervous about that. It was FREEZING in the hospital and all I had was 2 blankets, by the time I was wheeled into the OR I had begun to shiver.

Change in local didn't seem to make a difference. My family lives in Florida (sea level) and I'm in Las Vegas (3500 ft) It may make a difference to someone else.

[brain]

Birdbomb.....is cold weather actually a known trigger? Never heard that before.

Any thoughts about living or visiting higher altitude's possibly causing seizures?????

YES - that can trigger seizures too!
I have a problem with BOTH - cold
and high alts (altitudes).

---------------------------------

Wonder Dogs --- Stick around, and
you'll learn a lot from everyone!

[Shutterbabe]

I travel often between the Arizona desert and the mountains of Central Mexico (6000+ feet). My seizures are always more active when I am at a higher altitude. I once asked my neurologist that question and she said it would have no effect on my epilepsy. I always felt she was wrong. Maybe she needs to log in here and get the scoops from the real experts?

[Roncentaur]

So yesterday I found out I had epilepsy. I am 28 and I have no family history and my symptoms began in May of this year with no known cause. I have syncopal episodes, short-term memory loss, fatigue, episodes of tunnel vision, tremmors, and tingling in my arms and legs. I have been tested for MS, brain tumor, hypothyroid, all negative. Finally I saw a Neurologist who ordered an EEG and she called me yesterday to tell me that it was very abnormal. She started me on a low dose of Keppra and I am to increase it as I tolerate it. I am interested to learn more about my condition from others who share the same symtoms.

Hi Wonderdogs,

Welcome... I strongly recommend a wonderful little book called "The Challange of Epilepsy" by Sally Fletcher. You will find it extremely informative and valuable and you will learn about important complementary and alternative treatments (most neurologist fail to mention them) that may lesson or even eliminate the need for anti-epileptic drugs (Anti-Epileptic Drugs). Good Luck...

Ron

[wonderdogs]

Thank you all for your warm welcome! I have already obtained some great info from this forum as well as a list of references I will come back to from time to time.

I have yet to identify when I am having a seizure. Now that I have a diagnosis and have seen my EEG I am suspicious of every nervous twitch and "odd" feeling that I have.

The only time I have lost consiousness (which may or may not have been a seizure since I did not have any history of epilepsy before then) was in the ER about 45 minutes AFTER my auto accident. I was in a wheelchair, with the triage nurse who was taking my vitals. I said "I feel dizzy" or something like that and I remember someone telling me to put my head in my lap and the next thing I knew I came to on the floor of the ER because I guess I straightend my whole body and slid out of the wheelchair. The triage nurse was calling for help and someone said "did she just have a seizure" but there was no reply and they lifted me onto a gurney. I remained consious the remainder of the time in the ER and have not lost consiousness every since. The ER doctor documented it as a "near syncopal episode."

Does anyone else have an opinion on what this episode may be?

[Birdbomb]

What happens when I faint?

The thing about fainting, the body does not become rigid, it looses ALL tone. If you stiffened up it may have been a seizure, BUT fainting can INDUCE a seizure.

Loss of consiousness is not a necessity of seizure. I had a grand mal and was aware during most of it. I am consious and aware during all my simple particals even though I may not be able to communicate.

People who have complex partical seizures LOOK like they are aware and awake but this is really a true case of the lights being on and no one home.