Intro and looking for ways to support my brother

[BirdNerd]

Hi there; my name is Sarah and although I've had absence seizures once in a while, I sought out this group in order to better support my brother (Ben). He's 23 and has had several tonic-clonics over the past 7 years. His most recent was a month ago, while he was driving. He managed to miraculously not hit anyone (although he totalled the car) and "only" tear the ligaments in his left leg.

My brother is in denial about his seizures. He hates the side effects of the Depakote (which I can empathize with), so he skips doses. In December, he apparently started taking his meds half-strength. Soon after, he had a tonic-clonic in his sleep (his roommate found him). But Ben (brother) didn't change his meds, didn't go back to the prescribed dose.

I am at a loss as to what to do. (I really apologize for this intro being so dramatic; I bet a lot of intros start out like this, with people at their wits' ends!!)

I want to support Ben and help him, but it seems like he doesn't want to be helped. My parents nag him and really give him a hard time, so he has really distanced himself from them. Ben and I go through spurts -- although we are close, he has recently begun to pull away from ME. I strongly suspect he is very depressed and we've talked about that (I'm a mental health counselor by profession), but he is past the point where he has any motivation to do anything about it. He says he tried to talk to his neurologist about not sleeping well and the neurologist just advised him to "try to get some sleep." As a result of this flippancy, Ben doesn't want to go back to that neurologist, but hasn't called a different one. (I asked him if it would be ok to see if I could ask around for the name of a good doc and he said he'd appreciate that; I gave him the number about 10 days ago and he acted annoyed. And, of course, he still hasn't called)

Again, I apologize for this rambly and emotional introduction. I looked around on the different forums and wasn't sure exactly where to post this, then I figured I ought to introduce myself!

(Some non-dramatic things about me include that I love watching wild birds, I'm married, we have 2 cats and a snake, and I am a writer, too! This board seems like it is filled with really great people!)

[RobinN]

No need to apologize here BN. Welcome, and I wish you could get your brother to check us out. Tell him there are a lot of people on here getting their seizures under control without meds.

The two of you might have a family history of food sensitivities. That could be why you are both experiencing them. Just a thought.

It sounds like he is really frustrated with his situation. We have had some pretty awful situations with the medical community, and it is really hard to make that next call. So much energy to just be jerked around one more time. I know his frustration.

We have some good information here about sleep issues. You might tell him it is worth a browse. He just might find something he can use to "get some sleep".

Anyhow, he has great support with your care. Don't let his annoyance get to you. My daughter is also often annoyed. I remind myself it is not me she is annoyed with, it is the situation.

Hope you stick around awhile.

[Meetz1064]

Sarah, and welcome to CWE!!!

You are from one of my all-time favorite towns, Pittsburgh!!! My paternal grandparents lived there for many years, as did my father, so I have been there many a time.........of course, they have passed on now, and Daddy lives in Arizona now with Mom, where it's nice and WARMMMMMMMMM............

I wouldn't say there was anything wrong with your intro at all, I think it was just fine.

I too, am a writer, so we will get along just fine......there are a couple of others on here as well. You should check out the Creative Writing Page--it is one of the social groups here..........

As for Ben, just keep doing what you are doing......that's the best you can do. He's a big boy, and he's going to have to suffer some consequences, whether he wants to or not........

Have fun checking out all of the nooks and crannies here.......

Take care,

Meetz

[epileric]

Good to have you on board. Don't worry about being "dramatic". We even have a padded room here for all that drama.

I know I've had more bad neurologists than I have good ones so I can relate to how he feels. I'm lucky enough to be presently seeing a good one though. Maybe your brother would be more accepting of various alternative treatments for epilepsy http://www.coping-with-epilepsy.com/...ive-treatments

Hopefully these can help him.

[LivingFruity]

Hi Sarah Welcome to CWE! You sound like an amazing sister. Just being there for your brother and keeping the communication open is key, especially since he has withdrawn from other family members.

I totally understand his aversion to medication. The side effects can be difficult to live with, that's why we chose to go an alternative route when treating my son. His seizures are under control through natural methods. Your brother may not even know that he has a choice in how he approaches his treatment. Most doctors don't offer any hope beyond pills, so his reaction to his neurologist is completely understandable as well. We had to keep searching until we found a doctor who was willing to listen to us and then work with us without the meds. It's totally worth it when you find the right doctor.

As RobinN said, try not to take his annoyance to heart. He's not really frustrated with you, it's with this circumstances.

We're really glad you're here, Sarah. Welcome

[Crazy Monkey]

Hi Birdnerd

Welcome to CWE

It is brilliant that you are doing this for your brother, you have been put ino a very difficult situation which is not easy to deal with. In my experience, the more you nag at someone, the more that person rebels, maybe your parents need to try a different, more calmer approach with your brother.

If he is not happy to take Depakote because of the side effects, there are plenty more anti-epileptic drug's that he can try, but as you already know he really does need to see a neurologist and I don't think there is an answer to get him to do so, he as got to want to do it for himself.

Do you think he would be willing to read some of the threads here at CWE, just so that he knows he is not alone and that there are plenty of people in the same boat. This is a very supportive site that you have found and the people on here have helped me a great deal. While we don't have all the answers there is a great deal of info to be had.

Take Care

The Crazy Monkey

[joan]

Hello and welcome * Congrats on being such a good sister. I somehow think its worse on males, maybe its the ego thing, or their masculinity, immaturity, but it seems to me males take it worse. Hang in there and just love him. It seems everyone comes around in their own time. Maybe ask if hed like to review other drugs/options. Maybe him being more informed/knowledgable will make him feel more incontrol? I know at 19 my son wants to say what he will do and I can understand it. Also maybe his med isnt for him. There should be other options. Pass on positive info you may find for him. Get him outside for a walk, try and replace bad foods with healtier foods. My 19 yo son, has good and bad days. Days where he thinks his E is just another part of his life and days where he feels E has ruined his life. It takes time. Just love him. We are here for support and maybe one day your brother will join you here *

joan*

[Bernard]

Hi Sarah, welcome to the forum.

Hi there; my name is Sarah and although I've had absence seizures once in a while, I sought out this group in order to better support my brother (Ben).

Maybe you will help your brother and yourself.

... He hates the side effects of the Depakote (which I can empathize with), so he skips doses.

That's the way my wife was when I met her. It's a big reason we explored so many alternatives. The good news is that there are alternatives to drugs that can help with seizure control. Is Ben taking any vitamins/supplements, eating a "seizure control diet", learning neurobehavioral therapy techniques for "short circuiting" seizures or training with neurofeedback to normalize cognitive functioning? These are all non-drug options he can explore.

... He says he tried to talk to his neurologist about not sleeping well and the neurologist just advised him to "try to get some sleep."

This is huge. Sleep is vital for the production of chemicals that keep the brain in balance and functioning correctly. Without proper sleep, the seizure threshold is lowered and cycle of depression can deepen.

Has Ben ever been tested for sleep apnea? It's more prevalent in people with epilepy than the general public and (I think) largely undiagnosed.

I wish you luck in assisting Ben. If he ever wants to rant/rave/rage and let it all out, we have a Padded Room here and many sympathetic ears.

[skillefer]

Hi Sarah! Welcome to CWE. It sounds as though your brother is in denial. And that he really dislikes the diagnosis and the meds prescribed. Your phenomenal to be supporting him. If your brother is rebelling against the diagnosis, or what he may fear as a loss of control, then perhaps hearing about a proactive approach like alternative therapies (dietary changes, vitamin therapy, EEG neurofeedback...) would give him a sense of taking control over his life again. Also, remember, don't make the focus of all your conversations his seizures. He isn't his epilepsy, just like you aren't your seizures. Trust me, it used to drive me buggy when the majority of the time talking to my mom on the phone was spent talking about my seizures.....it sometimes made me feel like that was the only thing she cared about...not my job, not my friends, not my hobbies, not how I spent my weekend...but my seizures...
ANd I hate to say it...but remember..in the end, it's his decision on how he wants to live his life. You may not agree with his medical decisions. But they are his. All you can do as family is to love him, listen, and support the positive.

[BirdNerd]

HI all! Thank you so very, very much for your warm welcomes!! It feels really good to be here because I frequently feel so alone with this situation.

Robin, I had to laugh at your phrase that Ben and I might have a "family history" of food sensitivities -- Ben is adopted! But I agree; we both may have food sensitivities that contribute to seizures/health stuff.

Skillefer, yes, Ben is in total denial. My own personal theory is that he has always been uncomfortable "looking different" (he is Korean) and spends a lot of energy "trying to fit in" (I use quotes because I think he has always been accepted by his peers, but he is terrified he won't be). I think that when he was diagnosed with epilepsy, the diagnosis became another "thing" that made him feel like he was different. He acts like if he ignores it (by skipping meds, drinking heavily, etc, etc) it will go away...

I'm encouraged by the different types of alternative treatments that are out there. I think you're right in that Ben might feel a little more in control if he wasn't confined to a med schedule, but made different food choices or took vitamins, etc, etc. When he lived at home, my mom tried to make sure he took vitamins, but now that he's on his own, I think he couldn't care less.

I definitely do talk to him about things other than his health and how concerned I am about him. I know that's what makes him shut down. I also try not to call/text him if I know he's had a conversation with either of our parents that day -- because if he hears from me on the same day, he'll think I'm "part of the establishment" LOL. But it is hard to not ask him about his meds or if he's made an appointment with a new neurologist. I care so much about him and want him to be around for a really long time. And of course I dread him getting his license back and having another seizure while driving and hurting someone else.

*sigh* I will definitely be poking around here and seeing what kinds of fun information I can learn (and then creatively look for ways to share it with him when the time is appropriate!) I just went to a training for work this week about Motivational Enhancement Theory, which is about helping people (as a counselor -- or a sister!) to define the changes that they want to make and then creating an action plan to make the change a reality. My job comes in so handy in my personal life sometimes!!

Again, thank you for making me feel so welcome, and so "normal". And it really helped to hear that Ben is probably not annoyed with me, just frustrated with the situation. I probably knew this intellectually, but it helped to hear it.