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Heatherb

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Hi All,

I was just diagnosed after having a grand mal upon waking in the middle of the night. I've had random seizures on and off since I was a child. I'm a little scared, especially after doing some research and reading about sudep. My seizures although infrequent happen during the night, I wake up, feel really yucky run to the bathroom to throw up and that's when it starts. I'm always aware afterward but feel I'll for a few days. Any advice out there for someone feeling scared?
 
Hi Heatherb, welcome!

First off, <<hugs>> to you. Having an epilepsy diagnosis can definitely feel scary, and it's easy to fear the worst. S.U.D.E.P. is important to take seriously, but keep in mind that it's a relatively rare outcome. (Among all patients with epilepsy, S.U.D.E.P. accounts for less than 2% of deaths). Risk factors for S.U.D.E.P. are ones associated severe and long-term epilepsy -- i.e. an extensive history of convulsive seizures, and treatment with multiple medications at high doses.

The most important thing to focus on is getting the seizures under control. This means treatment of course, but it also means prevention -- preventing your seizures by identifying and avoiding things might be playing a secondary role in triggering them. This link http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ is a great place to start.

There's a ton of good information here at CWE, and the members have a lot to share by way of advice and support. Feel free to ask questions, post, vent, etc.

Best,
Nakamova
 
Thanks so much! Your words brought a few tears and made me feel not so alone in this:) I'm having a hard time balancing my emotions about all this along with my kids, career, etc.. I am hoping the scare of reading about S.U.D.E.P. will pass quickly.
 
You're definitely not alone! It's normal to feel anxious and scared, but talking to folks and getting information can really help. Quick question -- are you on medication at this point? Some of the anti-seizure meds can mess with moods.
 
welcome heather :)
you've come to the best place for support, information, chit chat, calming fears, and venting through the roof if you want. we all understand the range of emotions that come with epilepsy, anything from fresh diagnosis to making the most of our lives.
HUGS and glad you're here.
 
No, not yet. The doctor wants me to start on keppra which makes me a little nervous in itself. I've had only 3 events (that I'm aware of), one 12 years ago, one about 15 months ago, and the grand mal last weekend. I'm under abnormal stress which may have contributed. My mom is terminally ill and I have moved her in with us to care for her. So, with all that considered I told the doctor I wasn't too keen on meds since maybe it was something that wouldn't recur if I could just chill out. Then I started reading about all the scary stuff and thought maybe meds aren't such a bad idea.
 
Have you had an EEG? It might help you in deciding whether or not to medicate. (A normal EEG doesn't rule out epilepsy, but an abnormal one would tend to rule it in). Some folks do decide to wait-and-see, but if you'll be driving then it may be safer to try the meds.

I'm sorry to hear about your mother. Best to you and your family in managing this tough time.
 
My EEG a year ago was normal, going for another one as well as MRI next week. Perhaps I will wait on the meds until we see what those reveal. I would at least like to know I'm taking the best med for me. Thank you for your kind support, it means more than you know!
 
It takes time and this forum really helps. I started getting "confirmed" seizures about 2.5 years ago, it took a tonic clonic for them to see my "fainting" and "blackouts" weren't mental and opened the door to look into epilepsy, and even after the TC it took a year and a half and a drop seizure for them to finally run an EEG that confirmed the epilepsy. I was diagnosed in April and it was hard. I had the worst anxiety of my life from it, I woke up all hours of the night shaking uncontrollably from the fear. I went to therapy it was so bad. My therapist wanted to commit me and would have had I not been a single mother at the time. I developed severe agorophobia from it, afraid of every thing about life. To top it off I knew it could have been worse and felt like a baby for letting it control me so much which set the depression in.
What really helped me was getting closer to my faith. I realized everything I was afraid of, that the rooted fear was that this diagnosis would kill me. I was afraid to drive, afraid to shower, afraid to walk on concrete, afraid of sleeping, afraid of being awake, afraid of having the seizure, afraid of not coming out of a seizure, afraid to cook, to be in public, to be alone... You get the point.
My real fear was that it would kill me and the SUDEP didn't help that fear. It is a real risk but its not a common risk if you can manage your epilepsy. It took until two months ago before I would finally take the meds, the fear of being on them for life was very real as well. But going on them I'm more optimistic. My faith though has cured me of my debilitating anxiety.
I understand faith is not for everyone but it was/is my miracle drug to combat the anxiety. Other tricks I used along the way before my faith became strong... I know it sounds silly but any time you feel afraid, any time you lay awake in fight of flight mode from the anxiety unable to sleep, tell yourself over and over "I will be ok. I will not die. I am having anxiety and that is all. My life is not over, I am healthy and alive and I will be ok." These positive affirmations can do wonders for your mind set.
Hang in there, with time the diagnosis gets easier to take.
 
Thank you :) I am drawing on my faith right now, but need to spend more time focusing on that for sure. I try to think logically about it all , but then that fear creeps in and throws me back. Keep me in your prayers please, and you'll be in mine :)

Heather
 
Hello and welcome, Heather! First off, I second what the previous posters have said. They have "been there, done that" and know what they are talking about. As for me, I've been around the epilepsy block a time or two myself, and, more than anything, would like to encourage you not to be afraid of this thing. I was diagnosed about 33 years ago (I am 55 now) and probably had had small or unwitnessed seizures for years before that. I hadn't heard of SUDEP until recently, but I did some reading on it and it doesn't really seem like anything that most of us need to worry about. It's pretty rare, and seems to happen in conjunction with other and longer-term problems, from what I understand.
I wish I could make your fear instantly go away, but since that probably isn't possible I'd like to let you know that I've been living quite well with epilepsy for over 3 decades now and I plan to be around for at least another 3! Certainly epilepsy is something we have to pay attention to, and it can be a really big part of our lives, but it doesn't have to be at the center of things, especially as you learn to get adjusted to it and deal with it on a day-to-day basis. There will be ups and downs, for sure, and a lot of the people in your life who don't understand epilepsy may get all freaked out, but keep in touch with us here, because we're the ones who really know what it's all about and can help you along the road. Learn as much about epilepsy as you can so you can feel comfortable with it and educate your friends, keep in touch with your neurologist, take your meds, keep a seizure diary, and, most of all, enjoy the good things that there are in your life!
Onward! :)
 
:agree:

yep arnie's pretty damn good, great friend as i've learned myself.

:hugs: to you both!
 
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