Just getting it out...

[Bindi]

Hi everyone. I've been a member here for right about a year or a little over a year. I'm a reader more than a poster really...but it's 3am here, I can't sleep due to a few things running through my head so I thought I'd get them out here. I mean, of all people, you all should understand me. I hope.

Anyway, I'm married, have a 17 year old son, lots of animals...had tonic clonic and partial seizures since October of last year. They don't seem to be getting too much worse but they certainly aren't getting any better. It still baffles me that you can go 38 years and poof! Start having seizures out of the blue. I have tonic-clonics about monthly maybe, the partials about 3 to 6 times per week. I had my first tonic-clonic while sleeping three days ago. Didn't know that could happen until I woke up with my face in my husband's hands, that 'look' on his face. I'm on Keppra but it doesn't seem to be doing much. I've been to 2 neuros and now going in Jan, to an epileptologist. Have waited 4 months to get into see him, he is supposed to be good so here's hoping.
Anyway, I guess I'm really just wanting to get out some things plus at the same time, see if anyone feels any commonalities to what I'm feeling at all.
I'm a very positive person, very energetic. I try to look for the good in everything. I sort of taught myself how to be this way since my husband can teeter towards getting depressed easily. It runs in his family though he refuses to take medicine for it. Because of that, I've always had to amp up my positive manner to keep him on the happy side. It's been this way for over 10 years and for us, it works. For the last year that I've had seizures, I keep my anxiety about what's happening to myself. For his sake. I know he's pretty stressed about it. I even lost my driver's license (thanks ER tattle-tale doctor!) so I have to rely on him or my son to drive me places. Makes me feel guilty but what do ya do? Anyway, after a couple of embarrassing incidents out in public with a couple of seizures...I have grown more and more reclusive for fear of it happening again in front of people. I can handle the partials, they come and go so fast that they aren't a big deal. Well, besides ordering 'weasel chicken' out in a public resteraunt when I really meant to order roasted chicken. LOL Apparently that came out of my mouth more than once in a 30 second seizure session. My husband had to pull us out of there. We laugh about it now but I'm really just afraid to have a tonic-clonic out in public. I mean, how mortifying would that be? Not only to me but to my husband and/or son too. Since I've reclused to staying at home, they basically only happen at home now but I'm feeling pretty guilty lately. I feel like my husband and son got the 'short end of the stick' with me. Like I'm a burden to them or I've cheated them in the fun department. They don't say I am a downer but I see it in their eyes. The way they look at me. I don't know. I'm just feeling really bad lately. I've tried to talk to my husband about it but he just shuts me right up and changes the subject. The guilt still lingers though. It's funny, the curves life throws at you. This one is a huge curve for me. It's not something I grew up with. I guess I've been staying 'positive' this whole year to avoid the shock of it coming on so fast and strong. I find ways to make jokes about it so we can at least laugh about it but I think I've been 'faking' positivity for so long that the negative part is eating at me and well...I just needed to get it out. So here I am. This whole thing really sucks. <----that was me, getting it out. LOL

Well, I guess I'm done. Thanks for listening. You guys were a real help.

 

[Wally]

Yup. You are in the right place to talk about this stuff. I started at 44. Woke up on the floor looking up to several firemen in our bedroom and a very concerned wife. I had no idea what was going on. It all seems to be under control for now. The adjustment to Keppra was not fun though. The new doc will help. Good luck. Keep us posted.

 

[Chel]

So you've been having seizures for over a year now? Is that right? It does take a while for medication and life to settle down.

While you feel you have short-changed your hubby and son, I'd turn that around and suggest you're very lucky to have their support. Do you all work together through your "action plans" for when you start to have a seizure when you're either at home or out and about? It might all give you a feeling of involvement with this condition if you work out - as a family - what to do and say when you go into a seizure. Take the control back from the seizures, as much as you can, and educate your son that this condition shouldn't make you a pariah.

Good luck with the new doctor; I hope they have some answers for you.

 

[Bindi]

Thanks guys.
Yes Chel, since last October. I am very lucky for their support. I know this. I just feel guilty too. And action plan? No not really. We will toss that around. Good idea.

 

[Chel]

The action plan might help you all feel more in control of what to do when the seizures occur. I withdrew from my main weekend activity, because my first complex partials had happened there and a number of people had noticed me behaving strangely. None had stepped in to help. I felt unsafe there.

About a year later, a small group sat with me and asked what they should do if they see me doing it again. I told them to direct me to somewhere safe, that it doesn't matter what they say to me - I won't hear or understand them - and wait for me to come out of it. Oh, and I mustn't drive home.

Finally, a year after the first incident, I felt comfortable going out and participating in this activity again, knowing there were people watching out for me, who knew what to do if I had a complex partial sz. It made all the difference to me, it took the mystery out of it for them, and if it ever happens, I'll just have to face the ignoramuses who laugh at me as I'm led to somewhere safe.

This is our "action plan", and now I have my weekend activity back.

 

[aaron]

Hi Bindi,
This is my first post here so I may be a bit all over the place.

My girlfriend of the last 5 years was diagnosed with Epilepsy at 32. Out of no where and despite it being 3 or so years, to this day we are both still struggling with it.

I just felt I needed to reply in response to you feeling like a "burden". Believe me when I say that you are not.

Kate, my girlfriend, has said the same things and I must say I reacted like your other half. Changing the subject. For me this is in no way a dismissal of what is going on, it's just me needing some time to process things before opening my mouth and an indication that I also am having trouble dealing with it but wanting to appear to be the strong one.

I would be lying if I said I never questioned what life would be like if I never met Kate and had to deal with this but that fleeting thought is just that....a fleeting thought. I hope I'm not the only one to think that. I feel bad for thinking it but I can't help it.

Ummm I forgot where I was going with this but my main point was do not think of yourself as a burden.

Life throws whatever the bloody hell it wants to at us it seems and we just need to accept that and learn to deal with it I guess.

You husband is there and that is all that matters. He is in this as much as you are, mentally anyway.

Believe me when I say it is a scary, rocky, depressing, unknown world for him as well as yourself. I feel bad for comparing my feelings to someone actually diagnosed with Epilepsy as opposed to being with someone that has it but man we need help and support too.

Anyway, I warned you I may rant a bit lol I guess I was following the topic of the thread "Just getting it out" and got carried away.

Look after yourself and each other.

 

[valeriedl]

I had my first seizure 9 years ago when I was 27. I had to be put into a coma for 3 days before they felt that the seizure had stopped and thought it was safe to take me out of it. The dr's had a few ideas of what may have caused my epilepsy but nothing really spanned out.

At first I'd have around 3 or 4 seizures a week. Not grand mals though, I very rarely have those usually once or twice a year. My neuro has messed around with my meds through all these years and I've gotten a VNS (don't know if you know what that is or not).

Now I have around 3 seizures a month, that I know of. Usually I just pop right into the seizure and if there's no one around to see me have it then I don't know it happened. Since I've gotten the VNS and have had it adjusted to the point where it's working very well, I notice I'm having auras, which I think are the start of the seizure. When I feel this way I'll use the VNS and I think I'm catching the seizure in time and stop it. I still have the other one's that I just go right into though.

I know I do alot of stupid things in public. I have trouble remembering things and what things are called so what I say is really goofy at times. I had a seizure last week in the grocery store. My husband tried to take me out to the car, which he can usually do when I have one. But with this one I just sat down indian style at the end of the check out line and wouldn't move. I sat like that for about 5 minutes with people just walking by me staring at me. Finally when I started to come out of it he was able to get me out to the car and drive home.

We got a pretty good laugh at that, we usually get a pretty good laugh about most of the seizures that I have. It makes it alot easier on both of us if we make if funny instead of embarrassing, sad and scarry. I also look on the good side of things and my husband tries to do that too.

I met my husband 8 years ago so he knew what he was going to be getting himself into with me. Like I said for the first few years I was having alot of siezures. After messing around with alot of different meds and getting the VNS I've been having alot less seizures. It may take time to see if the meds and dosages could be the right ones for you, so that's something you just have to wait out.

Have you tried talking to your son about how your husband might be feeling. Alot of times the kid/parent is more apt to talk to the other parent about how they are feeling. I know I'm that way with my parents. Then if he tells you about something that your husband is feeling you can talk to him about it. Try to force the discussion, with out making an arguement out of it, and it might help with knowing what's going on in his mind.