Newbie here

[Boann]

Hey all,

I'm new to these forums. I've had epilepsy for about 4 1/2 years and the longer I have it the more frustrated I get with my condition. My condition is fairly manageable with only a few seizures a year and that's usually because I mess up and forget, which happens semi-frequently and luckily my mom or fiance always ask me if I've taken it. If I can't remember I take it again.

It's not the seizures I'm most frustrated with, it's the constant side effects of living with it. The memory loss, the frustration, the higher suicide rate, the mental and physical fatigue despite not doing anything. The fact that I feel like I've been through a dryer on spin cycle when I go on long car trips for no foreseeable reason that I can think of besides having this disorder. I love to travel too. What would it be like on an airplane? Obviously I haven't traveled extensively in awhile.

Most days I feel like throwing myself off a cliff, but I know that's the epilepsy talking. I know it's not really me. I know that I just get so overwhelmed with myself that I want to escape myself but I'm unable to do so. I'm afraid one day I won't remember. Every conflict with someone is harder and harder to deal with. My depression immediately goes to "Everyone really would be better off if I disappeared instead of having to baby me" Like, walk into some woods or something and let nature take its course. Nature has deemed me unfit anyway, but man has not.

See, even though I wanted to be treated normal, I know I'm not. For all my demands to be treated normal I hate it when I am. When its ignored. I hate it when its seen as an excuse to not do something like hold a long term job. The only time I can ever lose myself and feel normal is when I play video games. I know they can give people seizures but they've never been a trigger for me. Mine has almost always been from sleeping, mistakes or fatigue.

Sleeping is a huge problem for me. I can rarely sleep through the time. It's common for me to only have three hours of sleep or less of full sleep time. It seems like anything can wake me. Even my fiance turning over or snoring. It's no one's fault. I can catch up during the day but it's never enough.

Anyway, the reason why its taken me so long to find a support group is because I didn't feel like my epilepsy was as severe as the people who had seizures that were harder to control. Like I'd be making a bigger deal out of it than it was.

:e::e::e::e:

 

[cawhitern]

Hi Boann,
Sounds like you're going through a tough time. I can relate! I wish there were some easy answers to all you're going through and for a couple of things, there are. Years ago I used to forget if I had taken my meds. I started using a pill planner and that was an easy fix. I now have a different system and it works abou the same way.
Sleeping is also a problem we both have and I've tried different things with varying degrees of success. Under the suggestion of my neurologist I started taking melatonin right before going to bed. I also have a nightly routine and go to bed at a regular time. Keeping the room cool helps. So does "unplugging"- getting off the internet, computer and turning off the TV and bright lights.
Right now I'm changing meds, going from Dilantin to KeppraXR and am currently taking a full dose of both so I pretty much have that fatigued feeling all the time. I sit here and think about all the stuff I should be doing but I'm so worn out from working I just can't find the energy.
So what the heck is the answer? Why did we get this illness? Is it all worth it? The answer is yes. It is worth it. We get on this wonderful forum and we reach outside ourselves, either to rant or vent or console someone else. We do this together. You are not alone.
Hang in there. You have folks who care about you.
Sending you a hug!
Cindy

 

[Fedup]

Boann

Not going to good right now for you which is understandable. You need to set up a system so you do not forget to take you medication, set alarm on you watch or phone for example, but just because you cannot remember and it has happened to me as well does not mean you take a second dose of medication that is not a good idea despite what other people might think, your not on your own though in any of this, I have forgotten whether or not I took mine as well. Taking a second dose can lead to seizures or even worse.

The side effects can be hard to live with and if you think there are too many or they are interfering with you in some way tell your doctor or neurologist and talk to them. We all deal with memory loss in our own way as best we can, there is no point in thinking about suicide rates or anything like that it is only going to depress you. Its not easy dealing with depression but at some stage we all deal with it. You are no baby and it would not be better if you disappeared we have all had these ideas.

You want to be treated normal but you are normal, you think that just because you have epilepsy you are not normal, having epilepsy means you only have one more problem to deal with, its a big problem but non the lest one you can deal with. People will ignore you the same as they ignore me or others with epilepsy, why, because they do not know any better and they are afraid. But just because you have epilepsy does not mean you are not normal. Epilepsy is not an excuse to be used and I do not believe anybody, even you use it as an excuse. I have been like this since childhood, I have worked my whole life, I drive and I am married, and I am not any different than anybody else here. You have to realise none of this is easy.

 

[Boann]

Thank you for your support guys. I really appreciate it and I was told some things that I really needed to hear. I just wish I wasn't so tired all the time. Mentally. Do you guys have any methods for coping with that? Or is it more of just a cross you have to bear?

 

[valeriedl]

I have a weekly pill box and an alarm on my cell phone to make sure I take my meds on time. I'll see if I'd forgotten to take my meds, which is rarely because of the alarm, and as long as it's not with in about 2 hours of when I normally take them then I will. If it's longer than that then I just skip that dose. It's probably be better to miss a dose than it is to take a double dose.

I have a regular routine that I have before I go to bed. I normally get in bed around 11 read for a half hour then that just puts me right asleep. If I go to bed earlier than that I just can't fall asleep and will be up until 11:30 unless I'm very tired.

My meds make me tired in general though. I almost always have to take an hour or two nap in the afternoon.

I do crossword puzzles and other word games, crochet and read. This helps a good bit with me using my mind. Find something that you like doing that involves some thinking that you like doing. It's better than just sitting there in front of the tv.