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Posted 2/16/2006 2:26 AM (GMT 0)
 

 

 Hi, really new to this. my little brother (35) had his first grand mal seizure while working in Japan in Jan. After was flown home (Tasmania) was diagnosed with endocarditis which,after 2 mths hospital, was finally beaten. Grand mal put down to fever associated with endo. and he was taken off Epilim. All ok until Aug. when had series of Grand mals within 48 hrs. Put back on Epilim which didn"t agree with him at all so changed meds. All ok until he rang yesterday after having 2 more seizures. Then another 2 last night. He has been so down since August and so angry. His heart is damaged as a result of the endo. and now this! He is really struggling to accept that this is epilepsy. He is a jockey and horses are his life. He is refusing to get the help he needs, I think, because he is terrified of losing his career but he has had so many falls since starting the meds, at least one resulting in concussion and broken ribs. I'm really scared! He lives on his own and is 300 miles away. I feel so helpless. What do I do? Any advice would be really appreciated.

 

 


Post Edited By Moderator (~Jennifer~) : 2/15/2006 7:53:56 PM (GMT-7)

Posted 2/16/2006 3:27 AM (GMT 0)
Sharon,

what Jennifer said is soo right on - he's got to find the right meds.
a good neurologist, definitely.
i've had seizure disorder since i was 4, and live a very normal life. It takes a little while to adjust to being on medication and taking it faithfully, etc. I work full time, have children, husband - reg. lifestyle.
Honestly, it probably scares the people around me more than it scares me (other than not wanting to have a seizure) - so i can understand how frightened you are for him.
My seizures are grand mal also - and let me tell you, it wears you physically out. So the other thing your brother is going thru is really feeling run down, along with the psychological aspects, worrying about his job, etc. It usually takes me 2 days after having one to feel myself again. So it's probably really keeping him down right now. Try to keep his spirits up - that will help him a lot.
Also, is there anyone that can keep an eye on him, without being bothersome? It's really good to have a friend in these situations that looks out for you. His world has changed drastically -
Hopefully, you can get him to log into this site - it would help to talk to other people going thru similar situations...
Posted 2/16/2006 4:00 AM (GMT 0)
Thanks guys,

Have been given info re a really good nuero at Monash Uni. Bro's in Victoria so mum's on her way over to do her best to get him there. I think yesterday may be the catalyst for him to go. Wish he was online so he could talk to you guys.
I think my biggest fear is the fact he is so isolated supportwise where he is. Thankfully yesterday we were able to get a friend to him (she lives an hour away) before the worst seizures came. He is recognising the signs now and rang us. The first ones seem to come on when he is asleep. Then they seem to escalate during the next day. He spent last night in hospital under obs. but is back at work today!!!! He is so fatigued but I think he is coping by trying to keep everything as normal as possible. V. stubborn man that brother of mine!
I've read a bit about epilepsy and been in touch with the Association here in Tassie but I feel so ignorant! It's been a revelation finding this Forum.

Thanks, Sharon.
Posted 2/18/2006 7:26 AM (GMT 0)
Thanks madipy

Would you mind if I forwarded your post to my brother? That's a fantastic achievement, dealing with such a heavy workload as well as all the time necessary firstly to deal with the seizures and then to beat them! My brother keeps telling me he'll get onto it when things are quieter. It would be great for him to see that the faster he becomes pro-active, the closer that light at the end of the tunnel will get!

You are so right! There is no way he would treat one of his horses as harshly as he treats himself. I have seen him spend so much love, time and attention on horses who needed his help, and researched any method that would benefit their recovery, as far back as when we were children. He would never give up on a horse!

Thanks again. I'm feeling more positive every day which helps me be a much stronger support for Craig. He's a pretty determined individual so I know that when he shifts his focus, he'll have an inspiring story like yours in time!!!
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