Needing to not feel alone!

My name is Nikki and I have read many posts on here this morning and I want to say thank you to anyone that is posting.  I feel better already knowing that there are others like me.  Sometimes I get feeling so alone.  I have had seizures since I had just turned four years old.  I'm now 30.  I know that epilepsy cannot stop me from whatever I want to do, but why does it have to be so much harder? 

Does anyone else feel like you wish you could just shut it off like everyone else thinks we can.  Sometimes I wish I could for my husband's sake.  He does not like to be woken in the first place.  Most of the time he is supportive if I wake up and have a seizure, but not always.  Like this morning, he just wanted me to go back to sleep.  My mind was not letting me back to sleep let alone my body.  I just sat and cried, like I do alot.  I don't know what to do!  I can't seem to get a grip on this is my reality and it will never stop and I have known this for 26 years.  What do I do?  Any help is greatly appreciated.

Also, what do you do after you have stared someone down with a look that you didn't know you were giving?  Or after you tell something crazy to someone and don't realize you did?  Or you agree to do something and don't remember about it later and get into an arguement?  I'm just so tired!!!!!!!!!!  And I don't mean sleepy. 

I AM TIRED OF FEELING CRAZY!!! AM I?

I myself have had epilepsy since I was 3, and I am now turning 40. The doctors have switched my medication so much that I am having a hard time trying to control myself. Even the medication is making me do things I don't want to do. My children love and respect me, but my husband has such a temper and we fight all the time because I am so depressed from the medications and snap at him instead of just shut up. I will go somewhere and hide only to cry and get away from everyone when they didn't do anything and neither did I. There are days when I am just irritable and need someone to talk to, but have noone to talk to.

As for my marriage, I found a picture of my husband and I when we were so much in love, now we are practily wanting to kill each other. Either it is because my seizures are getting worse with age or because my medication has be changed so much and the doctors still haven't been able to control me because they took me off the stuff that was controlling me.

The doctors did that when they told me they could cure me. I took advantage of it, and let them cut peices of my skull out so they could do a more effective eeg and attach wires to my brain. So, after all that hope they told me they couldn't cure me and I have been worse since then because they can't control what they made a mess of. They even implanted a Vagus Nerve Stimulator inside my chest and felt it was going to help. But it isn't much help. I feel I was used as a guinea pig because everything they tried was new, and it didn't help. After having seizures for over 30 years who wouldn't want to take advantage of being cured. But they didn't cure me, only made me worse.

I used to drive, but have my drivers license taken away because I had a seizure while driving and luckily noone was hurt. But, I hate having to depend on everyone to take me everywhere. They have a life too.

All I want is someone who knows what I am going through and make me feel more comfortable or see if I am not the only one who feels the same way I do. I take a lot of my depression on other people and distance myself from people, so I don't have any friends. That is mainly why I am here.

I have had epilepsy for 24 years. One things you need to know is that you are not alone.

Let me sum it up this way. The brain is the most complex organ in the body. Everything is wired through it, from moods to body functions to abilities to how long your toenails grow. And it looks like a big grey blob. Doctors think they know what area does what and how it does it, but there is no road map. One of my previous doctors was the head of neurology at a major university in California and he was really upfront with me.He told me they can't cure epilepsy, they can stop seizures by meds or surgery, but they don't fix the cause, just the result we see. He also said that you take the most complicated organ which we barely understand and add in medications which we are not always sure how they work and the possible effects and results are countless.

My seizures have changed over the years, probably because of the meds i was on at the time. Sometimes things might be a result of medication, but it also might be something that happened to your brain because of the seizure. I think the emtional rollercoaster i was on for a few years was because of the medication, but i know that i had to relearn how to add and subtract again because a series of seizures messed up that area of my brain. But doctors can't map these things out or predict them. they are only humans, trying to understand how a grey blob of jello can run the human body.

I wish i could tell you it will be okay. Maybe it will be. and maybe it won't be. I am going to have to give up teaching, because my meds are failing, again, and i am out of options. Stress of teaching makes it so much worse. But i love teaching. Compromise. I want more years with my husband, so i will find something less stressful to make this medication combination last longer. You ay find they find the right meds and everything will work out.

But it does suck. and it is not fair. But i think that fair really just means not getting what you want. is it fair i have to give up teaching when i love it and i am good at it? But if i do i have a better chance of having a longer life with my husband. My seizures are that bad sometimes. sometimes they won't stop. and i lose more and more memories each time.

It could be worse...but i don't want to think about that. But i am not crazy. It is tiring, to fight yourself and your emotions, to be strong against all the negative stuff that comes in too. And blaming yourself, for hard it is on others, how hard it is on yourself, for embarrassing people, whatever. We are good at the blame.

But i look at people who get drunk out there and act like fools. And then they use the fact they were drunk as an excuse to why it is not their fault. We don't ask for it. We don't do things to ourselves to cause it then blame others. If we are spaced out, or say or do things that don't make sense, we are not making a choice, it is a biological function. Epilepsy doesn't come because we eat too much or drink too much. So next time someone dumps on you for something you did during a seizure or even the mood swings, point to some drunk person and ask why it is okay to act that way BY CHOICE.

"My seizures are that bad sometimes. sometimes they won't stop. and i lose more and more memories each time."
----swimkitty, have you been able to find a way out to work on the memory loss that you mentioned above.I also face same issue, but when I mention it to my family, friends they try to avoid it.Probably to make me feel better.But as you mentioned of it, I am quite assured that it was the seizures that are causing memory loss to me.

NovemberIvory--I am also an IT consultant and completed my engineering.It was during my engineering course that I was diagnosed with JME.I have been working well since, but definitely JME limited my choices and also, ceased my ambitions.But as mentioned by Swimkitty, it is equally important to spend quality time with husband, have a family.So, gradually I am learning to not to regret over what limitations I have.I sincerely feel that with the kind of efforts you are putting in to secure a job, your efforts won't go in vain.Having a supportive family is a blessing and I wish you all the best for your job and career.

I also get seizures in sleep, and I think it is somehow better and safe.