Can't deal with my condition

[florecita]

Hi everybody! I really need to share this because I have no idea what to do now. If someone has the patience to read all that and reply, I'll really appreciate that.

I've always had things happen to me before - like I could sit and stare for quite a while, couldn't concentrate on work. I had some weird attacks when I would lose control over myself and just say really bad things to my family who I love with all my heart, or even hit my brother who is a total sweetheart and has never even risen his voice on me or done anything bad to me. I am a total freak and can't stand my boyfriend being away from me, or even out for too long - I know he drinks a lot and then drives home on a motorbike, and I'm scared to death that he can be drugged (as it already happened) or just hit by a car because you just can't drive around as fast as he does being that drunk! When I wake up in the middle of the night and he's not there I can't sleep any more. I just stay awake, and then start calling him and asking to take a taxi and come home, as I know - the longer he stays out, the worse it becomes, and he says I'm just too neurotic and a pain to deal with.

Now, the real problem. In the past couple of moths I started having some gaps in my memory which surprised me - it never happened before, I was okay, and I'm only 25. My boyfriend told me I behaved strange - I would have some twitching in my arms and legs, or get up and walk up to the mirror and start brushing my hair, "time travel", not recognize him, get scared and run away and lock up in the bathroom, get upset and try to jump off the balcony or cut my veins open with his razor, or just get hysterical and never stop until he would give me a xanax and hold me down and talk to me gently until I fall asleep. I've been really stressed out at that period of time, and that's when we went to the hospital to have me checked out. It was epilepsy, and I got some drugs for it, to which I had a really bad reaction. After a third drug my boyfriend looked everything up online and found an exact diagnosis - frontal lobe epilepsy. All this time he was really nice and patient with me, even though some days I would only remember a couple of hours. That was really strange, especially after he made a few videos of me doing weird stuff during seizures and made me watch them. He thought I didn't take it seriously enough, but I was just losing it. He wouldn't let me go anywhere because the seizures could happen anytime, anywhere, I could have a new reaction to those new and new medications, I could still have seizures on those medications and God only knows what else.

Last night he gave me more drugs and sneaked out to the bar to get drunk. I woke up and freaked out, though the new medication seemed to be working so well all that day (and still does). That night he told me why he left me alone there, though he knew I could freak out if I woke up alone. He said he just can't stand it anymore, it's just too much for one person to handle. He can't watch me 24/7, and I very well understand him - I saw those videos, and I'm not even be sure I would be able to deal with someone acting like that even for a few days, and he's been doing it for a couple of months. He feels responsible for me - my family is very far away from here, and we're the only ones we both have as a family. I'm well aware that these medications have depressive moods as a side effect, but after this outbreak I just can't handle it anymore. Thankfully, I now have no memory gaps which hopefully means no seizures, but.. He can't sleep at night anymore because he's afraid I'd wake up and start doing things, so he drugs me up with sedatives, goes out and gets drunk to be able to sleep. I just want all this to stop. I'm hurting him, and I have been all the time I've had this problem. He's been holding up okay, but he's just a human being, he's not made of iron. I'm afraid to lose him and stay alone. And I just don't want anything anymore, I just feel upset all the time and have to run to the bathroom to cry. I don't even want to live anymore - what's the point? Maybe I'm just really too neurotic and I need to try and calm down, it's the medication speaking those horrible things into my brain, and everything's going to be okay.

 

[occb]

Welcome to the forum florecita!

The first thing you need to know is that you're not hurting your boyfriend -- he's hurting himself. Trust me -- I'm the wife of a man suffering from uncontrolled seizures, which we are certain are frontal lobe in origin. You are not the cause of his drinking and inability to cope, he is. What I suggest is that if he chooses to stay with you, that the two of you seek counselling in order to learn newer and more effective coping skills. See if there's an Epilepsy Association near where you are -- they can help with counselling and support groups.

Secondly -- you need to start looking at ways you can help yourself (waaay easier said than done, I know. My partner experiences the same issues you do, and change comes very, very slowly to him). Educate yourself about things you can do -- dietary changes, vitamin and mineral supplements, relaxation and breathing techniques. If your boyfriend does leave, you need to know that you can help yourself to the best of your abilities. Again, the Epilepsy Association can help you help yourself in this regard.

If you want to talk to me about how my husband and I cope, feel free to PM any time, or ask me questions here.

*Big Hug* Chin up -- you are most definitely not alone.

 

[Rae1889]

Welcome

Sounds like you have gone through alot.

First I'd like to show you this thread. It may help you answer a few questions.

Secondly, I wanted to welcome you to our "dinner party" The House Style is simple really - we regard this place as an open house where we host an open door party. Anyone can come in and be a welcome guest here. We have hosts (moderators) who try to help you settle in, feel comfortable, etc. We have different rooms for different regular acivities and talks. Similar to a real house. a kitchen, a library etc.
The good, respectful community here is because we have a good respectful comunity here, and one we are very proud of, and eager to have you join and enjoy too.

 

[Endless]

Florecita,

I am so sorry this is so hard and that you are going through all of this.

Everything IS going to be okay. You are going to be okay.

During the ramp up on some of the meds I've tried so far, I've hit bottom, too. The medication can cause depression as a side effect, and when you add that to an already sad sorry situation, well, it's tough. Always remember it is the meds, and don't let them get the best of you.

I'm still adjusting to my diagnosis. I wish it away, get pissed off at it, wonder what the point is and cry all day, and then eventually wake up with renewed determination. The point is eventually. You've got to stick it through until then, because when you get the right meds in place you'll feel better and have renewed determination, too. It might take a week, a month, or more, but the time will come.

Please be sure to tell your doctor what you are going through, so he/she can adjust your medication if needed.

And as for your boyfriend, he sounds basically very supportive. And it sounds like he loves you very much. You aren't hurting him. It's just a little tiring being a caregiver sometimes, so he went off to blow off some steam. He will be fine. And so will you.

Know we are all with you here. This is a great place to hang out, vent, learn, and support each other.

 

[Nakamova]

Hi Florecita, welcome to CWE!

I agree with what folks have said above. It's possible that the epilepsy itself is causing some feelings of anxiety and paranoia, not just the meds, so once you get your meds figured out you may feel more stable.

You should be careful about which sedatives you combine with any antiepileptic drugs (I wasn't sure from your post if you were taking both). Ideally if you can take your meds in a stable consistent fashion that will help you get a handle on what's working or what isn't.

 

[dfwtexas]

Hi Florecita,
Welcome to our group. I got diagnosed two years ago at age 47. I know that feeling of helplessness....most everyone here does! I found this forum and it has been a Godsend of supportive, informative people. It takes time to adjust to all it and then you can say, ok, I am ready to take this on.
I am on Keppra. I started at 500mg twice a day. I am now up to 1250mg twice a day. It is not unusally to have to have your med level adjusted or even changed to a new one. My neuro says any seizure I have to call him ASAP. Also, he has advised me not to add any other medication (even over the counter or supplements) without getting his approval.
I agree with all the others. Also invite your boyfriend to join us. Not everyone here has E...some are parents, caretakers, etc....they need to vent too.
I wish I could just hug you...but this is a vitual hug to let you know you are not alone in this
jenn