Hello All!! Wow, seizures really suck!!

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Status
Not open for further replies.
wowthissuxass

wowthissuxass

New
Messages
61
Reaction score
0
Points
0
Until June 4th, 2008 I had never had a diagnosed seizure, because that was the day of my first grand mal seizure. Around 1030 am I went to the restroom ( I was told this story due to complete lack of memory of it ). My wife says she heard a loud thump and upon entering the restroom she found me in full tonic clonic seizure. Of course, she freaked out and called the ambulance. They took me to the emergency room, and sent me home. A few hours later I was sitting on my couch, looked to my wife and said " I think I am having another deja vu" and went right into another tonic clonic. Out comes the ambulance, off to the hospital again. After reaching the hospital, BOOM another tonic clonic, that makes three in about 5 hours. As many of you are saying now "deja vu's are seizures". This also makes the time I woke up a month ago with a bit, black tongue make a lot more sense. They ran all the test and came back with temporal lobe epilepsy. While reading the symptoms I kept going, "check, check,check" and a lot more things in my life came into focus. I have my first nuro appt tomorrow and am anxious to get more information.
 
Hi WOW - I agree with you...

Sorry this is happening. I hope you check out our site for some interesting reading.
There are some alternative therapies rather than jumping on the "drug" train.
Research all you can, because the doctors won't always tell you the complete picture.
 
Welcome to CWE and the Club!

It happens that way for a lot of people so you will never have to feel all alone!

Glad you found us, now sit back and make yourself at home, LOTS to see and do here.

BB
 
there is a ton of info everywhere, most of it conflicting!! This is quite a major thing to come to grips with. I have always been 100% athletic and independent. While i in no way feel helpless, I certainly see a lot of thing that I can't just walk into without any thought any more.
 
Do most people in my situation typically go long periods without tonic clonics even if they continue to experience partials?
 
That's because there is no "ONE SIZE FITS ALL" in reguards to the treatment of E

You may not have to change too much but there will have to be some adjustments made.
 
Hi,

Wow, that's really rough. I'm glad you found this site. It is the best. You'll find that you are completely unique in your seizures and that can be very frustrating. Everyone here knows that and can offer terrific support and suggestions. They are a very welcoming group and no matter what your situation, you'll get support!

Welcome
 
wowthissuxass said:
Do most people in my situation typically go long periods without tonic clonics even if they continue to experience partials?
Click to expand...

My daughter rarely has had partials, but she has had many tonic clonic.

Neurofeedback has helped control hers, and she is not on any meds, only vitamins and minerals.
 
This site is awesome! I found it the day after I got home from the hospital and been lurking ever since. i am glad I took the dive and signed up.

Thanks!!
 
wowthissuxass said:
Do most people in my situation typically go long periods without tonic clonics even if they continue to experience partials?
Click to expand...

I've only had about 6 or 7 Tonic clonic seizures-not bad in 48 years but recently I have been having at least one partial seizure a night & sometimes one more in the day.

There was someone where I used to live how only had 1 tonic clonic a year with no partials at all. There is just such a wide variety of seizure patterns depending on the person. A lot of experiences are the same though, stick around & I'm sure you'll relate to a lot of what happens to the members here.
 
well so far, my total is 4 And standing. Now that I know what they are I think I am still having 5-10 partials a day, but no more tc's since I went on dilantin. Fingers and toes all crossed!!
 
Greetings.......

and welcome to CWE! You've found a wonderful place to be, with lots of new friends, and lots of information. Check out the Epilepsy 101 thread here, it's a really good start.

Personally, I've had somewhere between 2 & 3 dozen tonic clonics in my lifetime, which is more than enough for me, as mine are horribly violent. But, as far as I know, there's only been 3 occasions, possibly 4 that could have been a simple partial or complex partial. And that's not even a definite. So, yes, you can go and have partials of either kind, and no t/c's. I've not had a t/c in 5 years.

Ep is not the same for anyone. My problems with ep could be drastically different from Brain's or Buckeye's or even yours. We may share some commonalities, but it's always unique to each individual, just like DNA. The neurologists have a standard set of guidelines to use to treat you with.......meds, EEGS & MRIS & such, bloodwork, and surgery if necessary. Some of them, the specialists that are called epileptologists, are even more specialized in the epilepsy field.

Some of us ep patients can control our ep through diet, or if not totally control it, help the meds control it better through diet. I'm one of those examples. Because of the meds over the years, I'm gluten and lactose intolerant, so I use something called the GARD diet....some of us use the LGIT diet, others the ketogenic diet.....and yet others the modified Atkins diet. Whatever it takes to get and maintain control......well, you get the idea.

Again, it's nice to meet you. Feel free to send me a private message if you need anything! :bigsmile::bigsmile:
 
Last edited:
Welcome -
My granddaughter is the one with Epilepsy. I hope that you have a good appointment with your neuro. If you feel that this doctor is not for you, try other doctors until you find one that you like. Not all Neuro's are the same and not all of them specialize in Epilepsy.
 
Anyone In My Area?

I live in Kentucky now & i'm looking to make NEW friends , ones who UNDERSTAND my position & are willing to HANGOUT with me & accept me for me & not what I have. I hope others out there can understand what I mean Well thanks for listening . DAVE
 
wowthissuxass said:
. I have my first nuro appt tomorrow and am anxious to get more information.
Click to expand...

If you have time stay up & go in with a list of questions. (I realise it's late).

Also research your medication (Dilantin is also called Phenytoin). You may not have all or any of the side-effects but it's good to know what to be on the lookout for.
 
No problem Dave, people are here to listen. I think I can understand. I think we all can understand. I am an "independent" myself. Have a great time and I think you will understand that the vaaaaast majority here do take you for who you are.
 
:cheers:

Your screen name says it all. E sucks!!!

However, it is not the end of your life. Take athletics for example. Water sports are to NEVER be done alone, but can still be done with safety precautions. Most other sports are perfectly OK. I am 47 and still play full court basketball 3-5 times a week. The exercise is good for you. Just use common sense. A little extra caution until you get used to E is also a good idea.

I take a brand of Dilantin called Phenytek. It is the same med, except it is time released for fewer ups and downs of the medication in your blood. It is not a generic. Avoid generic dilantin if you can. It is one of the worst for generic inconsistency.

So have a seat, I'll get you some coffee and you can enjoy the new friends you have found.

:cheers:
 
Status
Not open for further replies.
Back
Top Bottom