Candi, they have already started to transition him onto another medication and off the old one when he went to the neurologist. He a
Has had one already but it was mild. They said that this other med would hopefully help make him less aggressive. He was on tegretol and it had made him very aggressive.
The neurologist did talk about the driving and showering and such with us. So he is a lot more willing to keep the door open. Why did you say to hang up a shower curtain?
I'm used to the sleep walking. My question is, is the sleep walking part of the seizure? Everyone asks how long the seizure lasts. The seizure is usually a minute or two but then he sleep walks right after it and that can last at least 5 minutes. Do I count the sleep walking as part of the seizure or is it separate?
Thanks for the link for the journal. It helped. I had no idea what to do so it was very helpful.
The doctor was talking about sleep deprivation as the trigger when doing the sleep study but I'm not sure if they will do another method.
First and foremost all of you are awesome. You've been a great support system and I am so grateful to each of you for taking the time to read and reply to my rants, fears, questions, and emotional posts. I also want to thank each of you for the congratulations on my marriage.
Now to my questions and concerns. So we went to see the neurologist Tuesday. She answered some questions but also caused me to have more. They are working on changing his meds over to something else. They didn't take him off his others yet. They want to transition him to the new stuff and gradually take him off the old stuff.
Next month they are going to try and do a week long inpatient sleep study and induce a seizure. What exactly will they do? Is there a possibility of him having a really bad seizure? What do I need to be prepared for?
All of you have said to do a seizure journal but I have a few questions regarding that. What do I write in it? I know to write he has a seizure but do I write the length, what he does before and after, and when. Could someone please explain this to me?
Also, do any of you have any idea why he might be sleep walking right after he has a seizure? While he sleep walks he pees on stuff. He does it even when he hasn't drink anything and he has gone before bed.
Last but not least, I'm a little worried about something the neurologist said. She said there was a chance he could pass it on to our children. She said she wouldn't know more until after the sleep study. Is there reason for me to worry? Is it different in children than adults?View Thread
I'm back lol. I got married August 4th and to be honest his seizures come and go. He went almost all week without one but this morning he had one, actually 2. When I tell him he has one he denies it. Why is he denying it? He admits something is wrong and that he has epilepsy and seizures but when when I tell him he had one he denies it. He acts like I am over reacting. He acts as if I'm seeing things or being overly sensitive. Maybe I am but when he has one his body shakes, he moans, grinds his teeth, and has his hands in fists. Why is he denying it? Am I overreacting? Any advice? I was told to video tape it but I don't know it's a good idea, I don't want to upset him. Please help.View Thread
Please know that I mean no disrespect to any one or to offend anyone. I'm learning a lot about seizures/epilepsy and how to cope with it. These last few weeks have been very stressful for me and I've had some big questions. I'm not sure where to even start. My mind is going non stop. It goes while I'm sleeping, eating, watching TV. Very rarely does my mind just shut up these days. The main thing/person stressing me out is his mom. I can't imagine having a child whom I had to worry about them having seizures. I understand her concern but I don't know how much is concern and how much is her controlling. Like I said, I can't even imagine her life these last few years, his seizures and her having to worry about him but at the same time I think she should back off of him a bit and cut the apron strings. She is using the seizures and sleep walking against him and as a way to keep him under her control. For instance, she told him and I that he should move out and into an apartment because of his seizures and epilepsy. She said that he would be alone for a week and she didn't want him sleep walking out of the apartment and hurting himself or anything. I understand that but at some point she has to let him live his life. I just think she needs to let him go. No, I'm not saying cut ties, what I am saying is to loosen her grip on him. She tries to use the seizures to tell him when to sleep, be home, eat, breath, blink. She says the sleep walking his him having a seizure. I'm not sure. I know plenty of people who sleep walk but yet don't have seizures. But it may go hand in hand with him. I'm not sure. As much as I understand her concern I also think he should be able to have a life. Isn't he capable of having a life?View Thread
Thank you. It does help having people to talk to so thanks. It mainly scared me because number one I wasn't prepared for it as we were having conversation. And 2 he was sitting up and awake. I wasn't prepared at all. When we sleep I'm prepared. My body and mind are prepared to not sleep to hard and get out of his way but watch him but when it happened during the day I kind of freaked. It scared me.
To be honest I'm not sure about his meds. I know he is taking tegrotal(sp?) and he takes it 4 to 5 times a day but I'm not sure on other details. I told him the next time he went to the doctor I wanted to go with him.
He keeps talking about having surgery for it. This I know very little about. Surgery scares me because the way I understand it the surgery would be on the brain. Maybe I miss read or misunderstood, I don't know. But that scares me.
My fiance had a seizure the first time while he was awake. Scared me. I knew he had seizures but I thought they only happened at night while he slept. Now I'm worried and scared they are getting worse. I feel so helpless. I don't know how to help him. I'm scared that they are getting worse. Now he has them almost every night. At first they weren't happening every night. According to his mom he didn't have them every night before I came along. Now I'm worried that maybe I'm making it worse. I've never seen him have a seizure during the day while being awake and he says it the first time he's had one while being aweke, which seems to worry me more then him. In my mind its him getting worse or the meds he's on aren't working like they should be. In his mind its a part of life and he has just come to terms with. I know that I"m going to have to get used to it to some degree but I'm worried about him. I can't help it. I can't help but worry that he had his first one while awake. I can't help but worry that he is having them more. I can't help but worry they are happening almost every night. I can't help but worry. Yes, I'm a worry wort but I'm scared for him, for his health, his safety, for me. I'm scared. And his family are in the dream world that if they don't talk about it and pretend the seizures don't happen then they won't happen. They talk about him eventually growing out of it. Eventually it just going away. I understand their hopes and their dreams. I'd love for it to be something that goes away or that he grows out of. But what if those things never happen. What if he never grows out of them? What if they never just go away? Are we/they just going to ignore it forever? Its something I feel needs to be addressed/talked about but as I said no one wants to address it. Will it ever go away? Will he ever just out grow it? Does it work that way?View Thread
Thank you for the kind words. Yes, I'm trying to stick to my guns so to speak but that is hard sometimes. We have talked about it. He reassures me that he is okay, that we are ok and that it's not me, which helps.
I have gotten to the point where I don't answer the phone or text messages. My biggest concern with not answering now is that I'm worried it may be an emergency regarding my fiancé. But I try not to answer usually.
I have read a lot on ep and am learning a lot. I don't know if it is a control thing or if it's embarrassment or both but she very rarely talks about it and if she does she is overly dramatic.
Thanks! Well according to her no one has ever been a true friend or a good girlfriend and it seems as if she has ran most of them off. Granted one or two may have left on their own but I think for the most part she ran the others off. Also the way I take it she is used to running things. I have been told by several she isn't used to letting go of anything.
I do really good at ignoring her until she texts or calls me directly and that is usually when she does her bullying stuff.
I'm trying very hard not to let her get to me but it is so much easier said than done.
Thanks for the advice and input. It is very much appreciated.
I do have to admit I did feel better after I posted this. Lol.View Thread