new to all this, looking for help and advise.

[ChelleBell]

:brain: i do not understand the things going on inside my head. which im guessing a lot of us don't, but its scary when there is something medical going on that you know nothing about and doctors cant really explain. (at least my dr couldnt)
dec 24 2013 i woke up to my fiance grabbing my face, telling me i had just had a seizure, as they were lifting me out of my house to the ambulance, i was lost and confused. i didnt understand what was happening. they did all the tests, Blood, EEG, Cat scan... everything came back normal except for the fact i had just had a gran mal seizure. and they said maybe it just was.. just happened cuz that happens sometimes..that it could have been caused by an intense dream or by the lights on the tv that we left on.. drs werent concerned.
a year went by everything had seemed fine, but then on dec 14 2014 i had my second one. this time during the day, on our way home from church and we had just ate. this time i had gotten sick. and this time i came to and understood my surroundings a lot faster, but i was more afraid because i knew it wasnt random. "me? epileptic? no way.. ive sat in a room full of strobe lights of different colors going different paces, theres no way" is how i thought... but they said that i was.. so here i am.. full of questions.
they put me on a generic brand of keppra. and prenatal (to prevent any birth defects if i were to get pregnant) and im noticing i dont think i like the drug im on now. if i dont take it exactly 12 hours apart, like say i go two extra hours, i get a major headache. i have NEVER had headaches before unless they were cold related, and now i get them whenever i go an extra hour or 2 without my pill. that alone scares me. i am not sure if this is a "dependency" starting or not, but thats how i feel. i dont want to take these pills, or pills in general for the rest of my life,i may have to do something for the rest of my life, but i dont want to be dependent on ANY pharmacy made CHEMICAL concoction. i know there is something better. been doing a lot of my own research since my dr only seemed concerned in getting me on pills, not necessarily the best pills for me. still searching, and learning and not really getting any where. i hope when i go back in to see the doctor he listens to me...

NOW HERE'S THE WEIRD PART:
my first siezure, i remembered parts of a weird dream... but for a while i just convinced my self i imagined them while i was in the "dazed" state after my gran mal seizure. but when the second one occurred and i had the same dream.. i was concerned. i didnt tell my doctor because i couldnt even remember the dream. still cant. i just remember the girl. and the music. and if i try to remember past that, i get nauseous. i have literally thrown up trying to remember the rest of the dream. i tried to research dreams DURING seizures and didnt get a lot of info, but did see a lot of people with epilepsy have said to have out of body experiences.. im not sure if that's what i would call this.. i dont know what i would call it.

i joined this page to convince myself im not alone in these happenings, that im not the only one who feels their doctors arent trying to find the cause. that im not the only one on pills that make me feel weirder then i did in the first place, and that im not the only one with weird dreams and questions about them. if you have any answers, suggestions, incite... i would greatly appreciate.

 

[Fedup]

ChelleBell

First welcome to C.W.E. Yes it is scary what is going on in your head and you are not on your own. Epilepsy is some what of an enigma, a lesser known topic to the medical field. Its even scarier to find yourself getting put in an ambulance. Its not unusual for EEG, Cat scan or MRI to come back normal, there is several reasons for this to happen but not all the reasons are known. Epilepsy can happen from a head injury, alcohol abuse just to name two, so it remains largely unexplained to this day. Now that you know this little bit sit back, calm down and have a cup of coffey.

We all wonder and think "why me" and are full of questions, looking for answers which at times seem hard to find but you learn to carry on with your life, yes you have to make adjustments but you do carry on. Ask all the questions you want and everybody here will try to help. None of us want to take pills but it is the lesser of two evils for lack of a better way of putting it. If you have any doubts about your doctor look for a new doctor, always remember this is you and you deserve to get the best treatment even though its not always easy to get. The more you learn the better it is for you and things do not look as scary.

There is nothing weird about you having a seizure or not being able to remember, that is normal for a lot of us but not everybody. If you are looking to be convinced you are not on your own you came to the right place. YOU ARE NOT ON YOUR OWN. You need to keep a seizure diary.

Grab a cup of Tea or Coffey, sit back and look around and realise you are not alone in this.

 

[AlohaBird]

Everything Fedup said but make sure the coffee or tea you grab is decaf.
Seriously, caffeine can be a trigger for a lot of people. There are lots of potential triggers. Doctors say a person with epilepsy has a "lower seizure threshold" than a person without epilepsy. This just means that, given the same triggers, your brain is more likely to have "had it up to here" and be pushed over the edge into a seizure.
You need to work on identifying what are your individual triggers. For me it is caffeine, sugar, booze, lack of sleep, and emotional stress. Some people are photosensitive (flashing lights, computer screens, etc). Some people have dietary sensitivities. I have cut out all gluten grains, soy, corn , and cow dairy product and that is really helping me (google the G.A.R.D. protocol of Dr. John Symes)

Keeping a seizure diary like Fedup said is a great way to start to see these patterns.

About the meds. The first drug I was ever put on was Tegretol which made me feel worse than the seizures so it took me a while to trust neurologists again. If your meds are bothering you stand up and say so. Remember, your doctor works for you not the other way around. If the doc won't listen, vote with your feet and go find one who will.

Welcome and no you are not alone.

 

[Nakamova]

Hi ChelleBelle, welcome!

Good advice above. I would add that while Keppra is often the first anti-seizure drug folks are given (because you can get up to a working dose very quickly), there are many more out there to try. Keppra has a short half-life, which means you can potentially be more vulnerable when you are late with a dose. Keppra is also more likely to have mood-related side effects. Let your neuro know that you are unhappy with it, and ask about other options.

When you think about possible triggers, keep in mind that there can be more than one, they can be cumulative, and they can change over time. For instance, the first time around you might have missed a meal or two and had a few nights of lousy sleep. And then the seizure happens. Maybe the second time there's something about the December holidays that messes with your brain -- emotional stress, odd diet, fatigue. It's also possible that you may never figure out your triggers. Even so, it can't hurt to take a close look at your overall diet and behavior to see what might be improved. There are some good tips to be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Your recurring dream might be related to a sense of deja vu that some people experience as part of their seizure. (Not all seizures involve convulsions and loss of consciousness. "Simple Partial" seizures feature a wide variety of distorted sensations including deja vu).

I hope you feel free to keep asking questions -- information is a great way cope with the daunting weirdness of epilepsy, and CWE is a great place to get support.

 

[marika853]

Welcome ChelleBelle,
All of the above and may I also mention, hormones. This is what started me rolling in 2006.
Menopause, stress, lack of sleep. I was also having auras, deja vu sensations and finally awoke in the middle of the night to emts in my bedroom that my husband had called. My dr couldn't tell me what had caused this but "I know" that it was all the above. I am well controlled on the Keppra, which I have tried several times to get off of, but have come to accept that it's that or take the risk of having a seizure while driving. So, it is what it is!
Good Luck!
M

 

[Belinda5000]

hi chellebelle and welcome.

As you were told you can have test as MRI CT scans .EEG come back normal.I'm refractory and was diagnosed more 50 years ago.
I have never had a test come back normal they've all been positive that can happen to.
You can have auras to warn you of your seizures and they can go away as mysteriously as they came. It helps some if they write down what they want to ask there neuro before they go to see him/her and that way there prepared.
Sometime you have to tell your doc if you don't think there listening there not leaving the room until they hear everything you have to say.
crowds can bring on my seizures,flashing lights,stress heat&humidity to name a few.

I've been told by doctors my seizures will never be under control, and I have a better memory than my neuro but I wouldn't give him up for anything.