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[dwllama]

Hi everyone. I joined this forum hoping to get some advice with how to, well, help my friend. I have a very dear friend that has epilepsy, unfortunately he lives on the far side of the country so physically there's not really anything I can do (besides staying in touch with the people I know are nearby in case he tells me something they need to know). But he worries me sick half the time and he is often depressed too. I get so frustrated and depressed myself feeling helpless to do anything for him. His epilepsy is unfortunately getting worse and there doesn't seem to be much even his Dr can do for him besides some kind of brain surgery that involves more risk than he's willing to take yet (I don't blame him his problem is centered in the memory part of his brain).

Anyway I'm not sure what else to say I just really hope I can get some advice on helping him feel better at least even if I can't do anything about the problem itself.

Thanks

 

[arnie]

It might be helpful to tell him about this site and let him read some of the posts and threads written by those of us who have "been there, done that, got the t-shirt" if you know what I mean. Epilepsy is a tough condition to deal with, and in some ways I think it can be even harder on the friends/family/caregivers. So, do some reading here, especially in the section marked "the kitchen", and maybe you can find some good threads and info to pass along to him. There is guaranteed to be someone who has gone through what you and he are going through. Do encourage him to join the site, too, so he can ask his own questions. Keep in touch!

Onward and upward!

 

[Cint]

Hi dwllama,

How wonderful it is to have a friend like you. As Arnie said, epilepsy is a very tough condition to deal with so encourage your friend to join CWE and try discussing his E with us. Some of us on here have difficult to control E and have had brain surgery (myself included), memory loss, suffer from depression and numerous other problems.

Is your friend seeing an epileptologist (a dr. who specializes in epilepsy)? There may be other options than brain surgery. The VNS (Vagus Nerve Stimulator) could be an option for those who cannot have brain surgery.
http://us.cyberonics.com/about-epilepsy

Wishing you and your friend the best.

 

[Nakamova]

Hi dwllama, welcome to CWE!

Good for you for looking at ways to help your friend. Having a solid support system can make a huge difference for folks as they cope with epilepsy. I agree with Arnie that your friend might benefit from checking out CWE and exploring the different threads. Everyone's epilepsy history is unique, but there's a lot of good that can come from the sharing and empathy found here.

If your friend is depressed, you should urge him to let his neuro know. Depression can often be caused or made worse by anti-seizure meds. As far as treatment goes, there are some alternative approaches: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments and proactive steps to consider: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

I can understand how daunting the prospect of brain surgery can be, but it may be worth re-visiting at some point as an option. If your friend is a good candidate (and there are all sorts of tests involved to determine that), the procedure could potentially make a huge difference in his quality of life. We have a number of CWE members who have had a variety of outcomes from surgery and would be willing to share their perspectives. Being informed can help him feel more confident in his choice whatever it ends up being.

You can also help your friend by drawing his attention to the things that give him joy and meaning, the things that he CAN do despite his epilepsy. It's important not to let epilepsy take control of his life and define him. While it can be therapeutic for him to have someone to vent to, don't let that be the only topic of conversation.

Best,
Nakamova

 

[dwllama]

He is seeing some kind of neurologist, don't know if they're an epileptologist or not, he said it was one of the better neurology dept in the country. His dr knows about the depression he was on meds for that too not sure if he still is. He's had legitimate reasons to be depressed not even counting his health....

As far as vns goes I asked him about that but he said his dr told him due to the part of his brain involved that it wasn't a good option (not word for word just what I got out of it) and sounded like that was similar to what they wanted to put in his head.

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[Cint]

As far as vns goes I asked him about that but he said his dr told him due to the part of his brain involved that it wasn't a good option (not word for word just what I got out of it) and sounded like that was similar to what they wanted to put in his head.

The VNS is implanted in one's chest, similar to a heart pacemaker so it doesn't go near the brain at all. I couldn't have a 2nd brain surgery because I would end up like an end stage Alzheimer patient so I had the VNS.

 

[dwllama]

That's what I had thought from reading about it but he told me it was the same thing so I'm not quite sure what he was talking about. He said it was some kind of chip they wanted to put in.

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[Belinda5000]

Hi dwllama,
Just listening when your friend needs to talk is a big help, being supportive that's a friend and trying to learn more about E.Depression is a side effect of meds we take and not being controlled can make one depressed.

 

[valeriedl]

Hi dwllama,
Just listening when your friend needs to talk is a big help, being supportive that's a friend and trying to learn more about E.Depression is a side effect of meds we take and not being controlled can make one depressed.

I agree with this VERY much. And by talk I mean actually talking to him, not texting or e-mails. Hearing someone's voice is wonderful. I have friends that live hours to states away and it's great when they give me a phone call. If you can visit him once in awhile do that. I know it's expensive but if you save up a little money each month it can be done.

As other's said let him know about this web site. He can see he's not the only one in the world who's going through the same things that he is. You can't believe how many times people have posted about things that are happening to them on here and are surprised that it happens to other people too.

I also have a VNS because I was unable to have brain surgery. It's helped me out a ton. I still have seizures but they are nothing like they were before I got it.

You can also help your friend by drawing his attention to the things that give him joy and meaning, the things that he CAN do despite his epilepsy. It's important not to let epilepsy take control of his life and define him. While it can be therapeutic for him to have someone to vent to, don't let that be the only topic of conversation.

This is true too. Sometimes I need to rant and rave and screaming at the walls isn't the same as doing it with another person. You can give him advice about what he can do to make things better.