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Epilepsy Seizur
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concernedmama2 posted:
Hi everyone! So I am on here trying to still understand a few things about epilepsy. My boyfriend and I have been together for almost 4 months but known each other for about 7 years. He has epilepsy and about 6 days ago he had 12 seizers in a row the last one being 30 minutes long I call 911 and he was rushed in. When he woke he had no clue where he was and I had to tell him all about the seizers and what happened he remembered nothing!! It was the scarcest thing I have ever seen, I never seen anything like that before I've seen him have a few but never that many or that long and didn't know what to do! Well since this has happened he has been different as far as looks depressed, headache that won't go away short of breath and chest pains since... He has an appointment with his neurologist next week but I feel something is not right... any advise from anyone to try to help him feel a little better about not remembering, he is very grateful for what I did to help him but I feel I need to do more for him?? We are both looking for answers on all of this he's never had this bad of a seizer since his very 1st when he was 11. He is worrying me about his health and not getting any better....
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WillowDancing responded:
I've had epilepsy all my life, and have learned the hard way that not even neurologists nec know much about it. First look for an "epileptologist" which is a neurologist specifically specializing in epilepsy. Also, a very good and nationally known epileptologist is Robert Fisher out of Stanford and he's produced a number of YouTube infos. Several are found at http://www.youtube.com/watch?v=WWm_h1Jj2Bc Also take a look at the site (he also works with) www.epilepsy.com And a good book to check out is "A Clinical Guide to Epileptic Syndromes and their Treatment" at
http://books.google.com/books?id=yJQQzPTcbYIC&printsec=frontcover&source=gbs_ge_summary_r&cad=0#v=onepage&q&f=false
A good starting point - hope it helps
 
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dancer86442 responded:
Good Morning,

Still experiencing Chest pains/shortness of breath? Take him to see his Primary Physician ASAP!


You did Good calling the ER, I am assuming you know proper Seizure First Aide??? If so, then you Should know there really isn't much more you can do for him during a seizure. But, there is More you can do! Educate yourself & him so you can become Good Advocates for his Disorder. Know what to watch for, know what you are talking about when seeing a DR. Willow is Rite. He needs to see a Seizure Specialist. Visit epilepsytalk.com & you will note in the Menu Drs/neuros/specialists that are recommended by others w/ Epilepsy. Or use WebMD's Physician Directory located at the bottom of this page in Blue Print. Also, take time to read some of their articles on Depression &/or Epilepsy.

Chek Helpful Hints for Journal Info. clik See All, 3rd page??? By Meetz. This includes More than just timing/noting seizures.

Feel better about not remembering? If he has had these 'episodes' since 11, he should be used to the fact he doesn't recall. The Majority of us Don't recall our 'episodes'. Just comes w/ the 'territory'. So, he isn't Alone, there. In fact, he isn't Alone w/ Epilepsy. Over 65 million ppl world-wide have Epilepsy. Plus, there are a Lot of Famous PPL, Past & Present noted w/ Epilepsy. Artists, Inventor's, etc. Very smart &/or Creative PPL. Now, we even have Football 'heroes' who are 'Shouting Out' about their own Epilepsy Diagnosis/Journey.

Suggestions: Depression: Either have him sit outside 15 min a day in the sunshine, exposing face & arms to sun OR try taking VitD3. Start Low, 1000IU & weekly Increase, up to 5000IU, if needed. Headaches: Look for Juicies that help relieve Migraines. May help his headaches. juicing-for-health.com has the recipe. BTW: Headaches/Migraines are 'kissing cousins' of Epilepsy. In some PPL. Let me know if you want to read some articles.

When everything calms down a bit: Visit the Epilepsy Foundation efa.org & see if there is a Live Epilepsy Support Group near you. If so, contact them as to Meetings. If so or Not, continue to visit us & we will Help all we can. Please keep us Posted. Know we care. Hugs!
 
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dancer86442 replied to WillowDancing's response:
Hello WillowDancing,

Thank You for joining us. And Thank You Very Much for your assistance/info. Please stick around. Tell us a bit more about your Epilepsy Journey.

BTW: I hope your post doesn't get noted/deleted. One of WebMD's policies is 'no Physician names' . Which is why I recommended the Directory or Phylis site. I believe epilepsy.com has the same info as Phylis, too.

Hugs!

Love Candi
 
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saxofone1 responded:
Hi,

Welcome to the family. Thank you for searcing for answers and being there for your boyfriend.

My thoughts have already been expressed by Willow, and Dancer. The sites they have mentioned are very helpful.

I have had ep since '75. The confusion/temp amnesia I too exprerienced following a seizure. The brain is simply "rebooting" itself. It might take longer for some than others. Thanks for being patient with him.

If you can, go to the doc with him. First-hand knowledge is always helpful.

We are here for both of you. Does your boyfriend have any questions for us? Please keep in touch whenever you can.

Hugs to both of you,
angie


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