New and very confused

[GodBlessTexas]

Hi I'm evan, 20 years old. I had my first seizure last sunday while I was working (at a small resturant as a waiter/server) and it was a terrifying experience for me. I've never had anything like this happen to me and so far the only people who have talked to me have been no help. My neurologist has explained nothing to me at all, I had to research onine to figure out exactly what happens during a seizure. It wasn't until my own reading online that I found out I had a tonic clonic seizure. I haven't been diagnosed with epilepsy but I haven't had my MRI or EET yet which are currently scheduled and i've been told I may have a better idea after that. The most terrifying part of this is how completel unaware I was, I've heard about 4 or 5 different versions of what actually happened and its such a discomforting feeling not knowing what was happening to me for however long it lasted. I take dilantin currently(havent gotten used to this medicine yet, hope i eventually feel better)


So I guess to sum it all up I'm completely afraid right now, I have no idea why this happened to me and nobody has given me any help on what caused this, I guess I was just wondering if anybody is or has been in a situation similar to mine. And what are the chances of this happening again, I know I'm most likely just being paranoid but I am so terrified of having another one and ever sensation I get in my body scares me because I do remember feeling really weird that day but I can't describe or really remember how I felt so everytime I feel anything weird i get really scared that something is going to happen again.


sry for the long first post I just needed to get all this off my chest

[RobinN]

I can understand where you are coming from Evan.

Welcome to CWE. You have found a safe place to learn and make a few friends that are in the same boat with you. We completely understand your fear, frustration and overwhelming feelings about what has occurred to you.

My daughter had her first tonic clonic seizure at the age of 14. The tests were somewhat helpful, but then again we have had conflicting results from two teaching hospitals. Hard to get a grip on the situation when the doctors don't know what is going on. Don't be surprised if that happens to you to along the way. It is common. They just don't know.

What I am curious about your situation after reading your post, is why the doctor put you on a med after just one seizure. That isn't normally done. It sounds like you need to work on relaxation techniques, because getting nervous and scared isn't going to help you.

What I learned is that we are all <----------------> this close to having a seizure. There are many things that can trigger one. Sometimes people have a high threshold, so even though they experience a lot of abuses to their body, they do not have seizures. Other people have situations where their threshold has been lowered due to toxins, stress, nutrition, etc and so the have one too many trigger affect them and BAM... a seizure.

We are currently controlling my daughters seizures with nutritional changes, vitamin and minerals that support brain health, and neurofeedback. She is med free at the time being and her control has been great.

I hope you find a lot of information here at CWE.
You might want to read this first:
Epilepsy 101 - Part FAQ, Part tips and advice

[tinasmom]

Welcome Texas -

I am so glad that you found this forum, everyone here is so helpful and understanding. My granddaughter is the one that has seizures, although I have been connected with Epilepsy for 20 years. My daughter, Tina (my granddaughters mother) had Epilepsy. If you are interested, you can read my profile which explains my daughters life with Epilepsy. Try not to get stressed out, because stress can trigger a seizure. If you are not happy with your Neurologist after testing, I strongly suggest you shop around for one that you like.

[Kate]

You have no idea how badly I wish I could just hug you. I know EXACTLY how you feel, because sadly, I have been in your exact shoes.

Last July I, at the age of 19, had my first seizure. It was very scary, and I, like you, was VERY afraid that I would have one again.

I want you to know that the people here are VERY helpful and they have helped me SO months in my last year. They helped me through my first Video EEG, my first injuries from my seizures, and everything. They're like one big family I know I can count on.

Anyway, I'd go on so much more.. but it's late here and I must get to bed! Also, I'm in the process of moving, and yuch, it's a mess. hehe. I can't wait to get to know you more, and feel free to send me a message if you have ANY questions. I know that it's weird to talk about with friends and stuff around our age.. kinda hard/awkward to explain. So really, if you need anything at all, I'm here for you.

Much love!!!

[Bernard]

Hi GBT, welcome to the forum.

It's pretty devastating for a young man to learn that he is not bullet proof / invincible. Having a tonic clonic is a pretty rude way to learn that lesson.

Robin gave you a great link to follow to begin exploring/learning about epilepsy. There are many possible reasons for a seizure to occur, but basically, *everyone* has a seizure threshold. In some people the threshold is much lower than normal (epilepsy). But, for most people, the threshold is so high that it can only be breached by extreme circumstances - drug use, blood sugar disorder, severe electrolyte imbalance, cardiac/oxygen issue, etc.

Assuming you are a healthy 19 yo (without the issues mentioned above) and not abusing recreational drugs, it's possible (not guaranteed) that the EEG testing will confirm epileptiform activity occurring in the brain (ie. evidence of epilepsy).

Feel free to vent here any time (in the Padded Room) or ask questions about epilepsy (in the Kitchen) or explore the other rooms we have here for information or entertainment.

[Nancy]

Hi Evan - God Bless You!
Just like Robin said - I wonder why you were put on the meds after just one seizure and none of the "big" tests yet .... and, of course, I wish your docs would hurry up with those tests. From what I've heard the meds aren't USUALLY started until after two seizures, but I'm no doctor ~sigh~.
I'm wishing you well and will be waiting to hear the results of your tests. You've found a wonderful place to talk.... a place full of people who understand what you're going through and how you feel. (((hugs)))

[Meetz1064]

and welcome to CWE! You have found an AWESOME place to be! Mr B (Bernard), whom you've already met, has made us a wonderful home here. Buckeye should be around soon with the coffee. Robin is the nutritional queen....and we love her for it!

In regards to you being put on Dilantin after only one seizure....I agree it's odd. However, it IS done on occasion. In particular, if your seizure lasts longer than 5 minutes, I believe, for a first-timer, it is considered status or life-threatening. To prevent another like it from happening until tests can be run, even though you've only had ONE, you're put on meds. If you had an EEG run that day, and there was ANY type of epileptiform activity showing AT ALL, they will automatically put you on meds. PERIOD. Especially after a t/c.

And yes, you will get conflicting reports from people because they were flustered and upset about what happened. They didn't know what to do, how to act, what to think. That's normal.

Learn seizure first aid. Teach it to co-workers, friends and family. Ask questions. We'll help. If we don't know, we'll direct you to the answers. Stick around. You've found a whole bunch of new friends to help you out in this wild journey...that are a lot like you. Myself included. Feel free to PM me any time.

Take care,

Meetz

[BuckeyeFan]

Welcome Evan. Well you came looking for someone who was in your shoes and you found one. I had my first tonic-clonic seizure at your same age of 20. I actually had mine while in the bath and almost drowned. That may be why your neurologist put you on meds right away, to avoid any injury while they test you.

I also started out on dilantin. My EEGs showed 'spikes' and I was kept on medications long term. Though I can not put myself in your exact situation, I can be close enough to understand some of the emotions you are having and may have in the future. Like Bernard said, it is weird to be hit out of the blue when you are a young man in the prime of your life.

NOW, the GOOD news. I am now 47. Yes, I have dealt with Epilepsy for 27 years. Next month, I plan to celebrate my fifth anniversary of NO tonic-clonics. My control has came through the use of Phenytek (a form of dilantin you should ask about) and Keppra. However, be aware that everyone reacts differently to treatments and yours may be totally different or may not even need meds.

Many people have one seizure and then never have another. Hopefully you are one of them. I personally know two men who had just a single seizure. If you are diagnosed with Epilepsy, please understand that your life still holds a great future. Since the start of my E, I have raised three daughters (28,23,21) and now have two grandchildren. I have also earned two college degrees and have a pretty successful career. I am able to travel when I can afford it and can still play basketball. E has definitely impacted my life, but it has not DEFINED my life. You still have a wide open future ahead of you.

Welcome to CWE. You may contact me anytime. Pull up a seat and join in the discussions or simply read what others have to say.



Even though I am from OHIO, I agree GOD Bless Texas. We have many great members from that great state. You will also meet members from Canada, Australia, United Kingdom and several other scattered spots.

[RobinN]

I would just like to add... you have been seizure free for 20 yrs. What is different now that puts you over your threshold? IMO it is your job to find your way back to health, and being seizure free. The only solution for the convention doctors is to put you on meds. They have no other choices at this point, because they do not know why you are having seizures. I believe it is the job of the patient to help the doctor figure this out.

[haird18]

Many years ago this had happened to a friend of mine! He had some kind of episode and he didn't remember it and it was described by many different people! So they put him on Dilantin before any tests. We all felt like thedoctor had jumped conclusions. And wouldn,t you know he did and they shoud've done an MRI and they would of found a tumor alot sooner. Which he would've got help sooner!
David

[GodBlessTexas]

Wow, first I would like to thank every single one of yall for nothing but positive feedback. I've never seen such a friendly community.

Thank you Robin for the link, it was very useful and provided me with a bunch of info I didn't have before.


In response to Meetz, yes my seizure did last longer than 5 minutes, from what I understand is it was a pretty long event, people 'couldnt find me' for abaout half an hour and I do remember getting a really weird new sensation in my body and I went into the bathroom and just sat down on a stall because I felt really weird. But my entire perception of time is messed up, I know after I was done convulsing a nurse who happened to be eating at my resturant (thank God) was assisting me and asking me various questions that I was apparently responding to but I still didn't "wake up" untill I was half way to the hospital so I don't know exactly how long it lasted for but I was unaware for quite some time.



I did have my MRI and my EEG today, but once again have to play the waiting game untill my neurologist analyzes the results and calls me for an appointment.


Even though I can't drive for 6 months because of this, today is my first day of school (sophomore year at community college) if this had happened to me last year I would have most likely just given up on school (its a 20 minute drive away on a 70mph highway), but thanks to the support from my friends though I am overwhelmed with people offering me rides and it just makes me so happy knowing that I have alot of people who truely do care about me




OH and to buckeyes fan; although I do live in Texas, Ohio holds a special place in my heart. Every single member of my extended family lives in the same dairy farming town I visit them atleast twice a year. My father makes it a point to go to atleast ONE osu game a year so Ohio has almost become a home away from home for me


once again thank you to every single one of yall. I was not expecting to find such a positive support forum

[RobinN]

Wow, first I would like to thank every single one of yall for nothing but positive feedback. I've never seen such a friendly community.

Yes I too found it to be an awesome place when I felt lost. CWE provided me with so many more answers, or allowed me to explore them, than any other place I looked into.

Thank you Robin for the link, it was very useful and provided me with a bunch of info I didn't have before.

My pleasure, glad it is helpful.
Lots more where that came from.

In response to Meetz, yes my seizure did last longer than 5 minutes, from what I understand is it was a pretty long event, people 'couldnt find me' for abaout half an hour and I do remember getting a really weird new sensation in my body and I went into the bathroom and just sat down on a stall because I felt really weird. But my entire perception of time is messed up, I know after I was done convulsing a nurse who happened to be eating at my resturant (thank God) was assisting me and asking me various questions that I was apparently responding to but I still didn't "wake up" untill I was half way to the hospital so I don't know exactly how long it lasted for but I was unaware for quite some time.

My daughter typically does not remember much of her seizures either. In fact that period where you did not "wake up" is called the post-ictal state. Not considered to be part of the "seizure" but certainly part of the episode. This is where you are still in what we call a "brain fog" and memory is impaired. You could also have experienced an aura, prior to any convulsion, where once again memory and behaviors are impaired. So unless someone witnessed it, you don't really know how long the "seizure" part of your episode was, from what I have understood from the above description.

I did have my MRI and my EEG today, but once again have to play the waiting game until my neurologist analyzes the results and calls me for an appointment.

I do hope your neurologist is forward thinking in his approach.

Even though I can't drive for 6 months because of this, today is my first day of school (sophomore year at community college) if this had happened to me last year I would have most likely just given up on school (its a 20 minute drive away on a 70mph highway), but thanks to the support from my friends though I am overwhelmed with people offering me rides and it just makes me so happy knowing that I have alot of people who truely do care about me

You are lucky to have such great people in your life.

once again thank you to every single one of yall. I was not expecting to find such a positive support forum

Your welcome

[skillefer]

Hi Evan! Welcome to CWE. As you can see, a very nice group of people. Like you, I have tonic clonics. I was diagnosed a long time ago. And I've been taking meds since I was 13. As for the sleepy feeling from the meds....well, your body gets adjusted to them eventually. Of course, I used to drink 9 cups of coffee a day too....so it was my body getting used to the meds or just way too much caffeine?? LOL...Anyway, my suggestion is to keep a journal. Write down everything you eat and drink, when, and how much. Also, write down how much sleep you get every night, as well as how much or any stress that your under. Write down how your feeling physically. Take this info with you to the doctor's office. It can give the doc more information as to what might have triggered the seizure. I had one once after I had let my blood sugar drop too low. The important thing is, many different things can trigger a seizure....smells, flickering lights, too little sleep, too much stress, etc....the important thing is to get as much info as you can so that you can hopefully find out what your triggers are. Also, if your like a lot of people and a caffeine junky, you might want to cut back on the coffee. Don't go cold turkey....just wean yourself off of it. Same with any energy drinks. Also...make sure you get at least 7 hours of sleep a night, and get yourself on a set sleep schedule. Hope the info helps. And again, welcome.

[Meetz1064]

Wow, first I would like to thank every single one of yall for nothing but positive feedback. I've never seen such a friendly community.

We try. We really do.

In response to Meetz, yes my seizure did last longer than 5 minutes

I wondered if that was the case. Most of the time, it is preferred to NOT put patients on meds unless it is an extreme circumstance...

from what I understand is it was a pretty long event, people 'couldnt find me' for abaout half an hour and I do remember getting a really weird new sensation in my body and I went into the bathroom and just sat down on a stall because I felt really weird.

The "weird new sensation" you talk about may or may not have been an aura, like RobinN spoke of, OR it may very well have been part of the seizure.

But my entire perception of time is messed up, I know after I was done convulsing a nurse who happened to be eating at my resturant (thank God) was assisting me and asking me various questions that I was apparently responding to but I still didn't "wake up" untill I was half way to the hospital so I don't know exactly how long it lasted for but I was unaware for quite some time.

The perception of time WILL be messed up. That's normal. After MY t/c's, I sleep for 18 to 24 hours. And I can't carry on a conversation to save my life. I always chew THRU my tongue.

I did have my MRI and my EEG today, but once again have to play the waiting game untill my neurologist analyzes the results and calls me for an appointment.

I am a big proponent of being proactive in one's own care. Being on this site is a big step in that direction. Remember YOU pay the DOCTOR's salary. If you feel like you're not get satisfactory answers, feel free to get on the med/doctor merry go round. Expect to have bloodwork done at least every 6 months or so, too. You may have to remind them... Also consider later on that possible changes to diet may help you, too. The link in Bernard's signature will lead to those....

Even though I can't drive for 6 months because of this, today is my first day of school (sophomore year at community college) if this had happened to me last year I would have most likely just given up on school (its a 20 minute drive away on a 70mph highway), but thanks to the support from my friends though I am overwhelmed with people offering me rides and it just makes me so happy knowing that I have alot of people who truely do care about me

Like Robin, I think you have a bunch of great people in your life. That IS really cool!!

Ohio holds a special place in my heart.

Mine, too. Not only because our buddy Buckeye is there , but I was born there, and raised there for a number of years. Then I moved.....to Michigan, and Indiana..........It IS a great place, isn't it?

once again thank you to every single one of yall. I was not expecting to find such a positive support forum

You're very welcome. Mr B has made such a wonderful home here for all the house guests. Please kick up your feet and stay!!!

Meetz

[salright2baredneck]

Hi Evan, welcome to a wonderful forum with a wonderful group of people. I am new here too, and have found everryone to be very knowledgable, helpful, and friendly.

[Bernard]

Glad you are finding support all around (both here and with rides/friends).