Hello, I am new to having seizures and need some advice

[davida7]

Hello my name is David. I am 26, just got married, work as a graphic artist, like playing basketball and enjoy life here in Southern California. I am new to this whole having seizures thing. I am trying to get some information about the whole thing and find out from some people what to expect and share my experience. Below is what has been happening with me which is the same as my profile intro but I didn't want to retype the same story...also I am really curious what to expect and need some advice which is why I have a few questions listed below if anyone didn't mind helping me out which would be awesome of you!

I was given a starter pack of Lamictal XR but haven't got the MRI or EEG yet; should I start taking the small doses like my neurologist said before these tests?

What should I expect from this drug?

Do seizures get worse without taking medication?

Is it possible to have a few seizures and then for them to just go away forever?

Can I drink and take this drug?

Anything else that you can think of; I am a little scared about the whole thing and if you can think of anything reassuring it would be soooo appreciated!


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I just a few weeks ago had my first bad seizure. Within a few months prior I had woke up a couple times with a badly bitten tongue (which I thought was cold sores at first). Also woke up with muscle aches that left me so weak that I could barely lift my arms or legs. I also had a sleep walking episode where my roommate said that I walked down the street jumped a fence and came back home where I just went back to bed. I also tried walking straight through a coffee table and tried peeing in a suitcase (glad I kept my clothes on though). My roommate said that I "freaked out" in my bed before the sleepwalking (I thought it was just a bad nightmare) but now I realize that it was probably a seizure.

I just got married about 7 weeks ago. My last seizure was violent and really scared my wife. It left me with the worst tongue bite ever! I also sleep walked again where my wife said that I walked around like I was drunk or like when that guy first became an alien in the Avatar movie just trying to figure out how to walk. I am pretty tall so that's probably why she thought that. She called 911 and I was still unconscious when they arrived so I was carted off to the hospital where I eventually became aware and went through all the hospital stuff.

I had my first consultation with a neurologist and she said that it is unusual to have three seizures within a few months without serious head trauma but she did give me a sample pack of Lamictal XR and said that I should start taking the starter dose so that I wouldn't have as violent seizure and also to prevent a driving incident. I am a healthy person that works out, plays basketball and I don't really over do the alcohol or much else. I don't know what to think about this all and its such an unexpected life event that I am trying to figure out everything that I can about epilepsy and seizures.

Thank you, David

 

[Soniag]

i started on small doses to start off with. seizures shouldn't get worse without medication but they are likely to continue. i take tegretol and have been told to keep drink to a minimum. you will also feel the effects of it more, even if you have only had a small amount to drink. you may have some seizures and then not have any for a couple of years but i don't think they will stop forever

 

[davida7]

i started on small doses to start off with. seizures shouldn't get worse without medication but they are likely to continue. i take tegretol and have been told to keep drink to a minimum. you will also feel the effects of it more, even if you have only had a small amount to drink. you may have some seizures and then not have any for a couple of years but i don't think they will stop forever

Thanks! Stopping drinking probably is a good idea anyway...bummer though. It sounds like most people decide that taking medication is the best choice. I really am uncomfortable about having to take meds since I have never taken any prescriptions ever but when it comes to being safe for driving and not hurting myself or wife in case of convulsions it seems the only choice.

 

[Fedup]

David this is a whole new chapter in your life and there will be changes which you may need to make, but not to worry things are not that bad, it would be a good idea if you cut out the drink, it does not go well with your meds, as for driving I do not know the law in your area but you should think about giving it up for a while until you get things under control, the reason I say this is because somebody could be hurt - can you imagin a car accident and what can happen, sorry but its important and we have all been there, some cannot drive and some can ( I am one of the lucky ones who can), Y ou need to start a diary keeping time,lenght of your seizure, anything about it,you need proper sleep and to keep a record of things you eat and notice no matter how small you think they are, you will get the hang of it, do not be afarid to ask quiestions, and everybody here will try and help you, you need to read up about epilepsy, its not the end of the world but you do need to make some changes, talking to your wife about whats happening to you might be a good idea as well, and do not forget she is going through this as well. I hope things work out ok, everybody here will try and help you.

 

[jyearta]

Hi Davida7,

Welcome to CWE.

Each person reacts diff. to each medic.

I have always had to have 2 medic.

I didn't know anything about triggers UNTIL I joined this forum.

Drinking can be a trigger, be careful, not getting enough sleep, stress, caffeine, some are affects with some foods, there are many more.

Like Fedup, said keep you a record on EVERYTHING.

 

[jackier]

Welcome Davida,
This a good site to learn from.

Good luck!

 

[valeriedl]

Hi davida7, nice to meet you!

You've come to a good place for info. I've learned so much from this website. It's nice to know that there are other people out there that are going through the same problems and how they deal with things, it lets you know your're not alone.

I've had epilepsy for 9 years now and it took about 5 years of different combinations and strengths of meds for me to really get them under control. At first I was having around 5 bad seizures a week, now I have about 5 a month and they aren't that bad compared to what they were like. So don't get too upset if the first med you are put on doesn't work out for you.

If your dr said to start taking the med before you have the MRI then do it.

I did have a time that my neuro increased the dosage of one of my meds, keppra, and I did start having more seizures. I called him and let him know that this was going on and he told me to stop taking the extra dosage. Things got back to normal after that. So if you notice that you are having more seizures, or anything else out of normal, call and let the dr know.

My first seizure came out of no where, the drs still have no idea what was the cause of my epilepsy. I've also ended up in the ER a good many times after a seizure, usually by ambulance ride. Most of the time with mine I'll be unconscious during them and it will take me awhile before I really know what's going on around me again.

Usually people are ok drinking a little while taking meds but I'd hold off of drinking for right now until you can figure out what's going on. The alchol/medicine combo could cause things to happen and it might be harder to get the right treatment. I'd stop driving too, better safe than sorry.

Good luck and ask lots of questions.

 

[AxelsMemories]

I can understand where you're coming from, i had to ask the same questions and was scared when i first started having them, and the worse part is i started having them at 15 and i'm only 18 now. just keep yourself calm at all times and try to have someone at your side at all times as well especially if your new and scared of it. Also, ALWAYS listen to your neurologist no matter what and deffinitly try to cut down on the drinking.