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Thread: Does anyone else get tired of talking about epilepsy?

  1. #11
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    I hardly ever talk about it. I am not the least bit ashamed, but it is about just me, and I am so much more than a medical condition. Those other parts of myself I can share with others as they too may also share them. However, not all share this commonality we here do. With you, we are a small family who shares this illness and all that goes with it. Not all will belong to this family as in a typical one, not all belong or can relate. When I do talk about epilepsy, I can get rather passionate. Also, in my profession until I have the degrees I want which will allow me to make a difference, I can't afford to talk about it due to the stigma that is still very much alive as some of you may recall from my ordeal a while back. I know a nurse with her PhD who just now is willing to admit it. However, this forum is one place those of us who share epilepsy in our lives in some way can come together to share our experience strength and hope with others who visit.
    Sue I wish you the best in your talk and thank you for doing that. We need others like you willing to step up and enlighten the world. You will be great! Tattoo

  2. #12
    Distinguished Community Member lor's Avatar
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    Great Sue, Everyone should know what to do if they see a seisure. My son learned in boyscouts. Three months ago I had 3 seisures and my heart stopped. He was able to save my life.
    Lorraine (lor)

  3. #13
    Distinguished Community Member lor's Avatar
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    Great Sue. Everone should learn what to do if they see someone having a seisure. My son learned in boyscouts. Last Nov. when I had 3 seisures and my heart stopped, he gave me CPR and saved my life. (I have had epilepsy since childhood).
    Lorraine (lor)

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  5. #14
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    Hi Folks,

    Things went great at work today (Friday) teaching the 7th grade students about the brain and epilepsy. I was very surprised how interested all of the students were. I gave them a short term memory test, taught
    them about epilepsy and what is really happening when a person has a sz. then I taught them what to do if a person has a sz. of any kind. After that I had the students volunteer to walk heel to toe on a straight line as well
    as tell me what finger I was moving while looking straight forward. The teacher had opptical illusions for the students to look at and the students were amazed at how the mind can play tricks on you and what you can sometimes
    see or not see. It was a fun day for everyone and I hope that the school will continue to let me teacher other students over the yrs. about epilepsy and the brain.
    Here's wishing all of you well and May God Bless You!

    Sue

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    I realize this is an old thread, but I myself do not find much information about Epilepsy and other reasons for having seizures. It is 7-20-2015 and I don't know much more about seizures now than I did in 2010, when I had my first seizure.

    I am not ashamed of having them, but would like to know more about them. I would like to hear more from others about seizures, what causes them, etc. I will be back later to see if I can find something's in other places.

    take care all, Julia
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

  8. #16
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    Hi Julia,
    Over the 43 yrs. I've had epilepsy I found out that that the following things can cause epilepsy genetics, lack of oxygen, drug or alcohol abuse, a bad blow to the head, alzheimier's, sometimes ADD or ADHD a bad scare, or using to much nutra sweet (aspartame) along with certain sounds and light like when a person plays video games for hours each day all of this can cause epilepsy for some people. I recently found out that sometimes a person can be cell phone sensitive and that means when you are around a lot of people using their cell phone at the same time it can trigger a sz. that's all do to the frequency the cell phone uses I found this out after having many sz. around people who were using their cell phones at the same time. My Dr. did an e.e.g. on me and in the other room he had Drs. use their cell phones on purpose and when they did it triggered sz. for me.
    Wishing you only the best of luck and May God Bless You!

    Sue
    Last edited by Porkette; 07-20-2015 at 11:02 AM.

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  10. #17
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    Sue, thank you so much for the information. These are the kind of things many of us would like to know. To me this is the reason we have all the different forums. I'm 72 yrs. old and started having seizures nearly 5 yrs. ago. Yes, I am old, but I want to know what I can find out about all the diseases that have taken a life of it's own. Who knows, I may be able to help some of my grandchildren with things.

    I don't do FaceBook. I suppose it has it's place, but it doesn't take the place of BrainTalk for me. I would love to see many of our old members back at BT, sharing the latest things. Those that does go to FB could still go there, but still share the knowledge that we all shared many years ago.

    Sue, I appreciate all the things you do here at BT and NO, I do not get tired of discussing different forums. Just keep up the good work, Sue. We need more like you.

    My love to all, Julia
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

  11. #18
    Distinguished Community Member jingle's Avatar
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    Hi Jo ........ I had my first seizure in 1991 - when I was 46 years old. After 15 difficult years I learned I had a brain tumor. Surgery in 2005 and another in 2006 -- I haven't had a seizure since.

  12. #19
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    ((((((Julia)))))) ~

    So good to see you here, dear friend! I've missed you! How are you feeling these days?

    In addition to the causes listed by our sweet Sue, there are a variety of neurological conditions, which can promote seizures, such as an aneurysm, stroke, or embolism, or MS, ALS, Parkinson's, etc. Then, there are idiopathic seizures, for which no cause can be determined. Hormonal imbalance can cause seizures. Seizures can be the side effect of many medications, which are not used to treat seizures, but other ailments. Not too long ago, a new member posted here about a seizure, which occurred after consuming too many "energy drinks." And recently, a new member posted about a seizure following a Kundalini experience.

    Epilepsy is a complex condition, sometimes difficult to pinpoint as to its core cause, and often difficult to treat. Although I've been dealing with epilepsy since Jon's first seizure at age 2 (43 years ago) and Michael's intractable seizures every day for 22 years, and I've read and studied and researched epilepsy and treatments for it, I still have so many questions about it.

    Michael seized more during the full moon phases and when the barometer changed. I could never convince a neurologist that this was fact, despite the copious charts I provided as evidence.

    I'm not on Facebook, either, Julia! We "old ladies" like to stick with what we know! And as you know, on the Child Neurology forum, we talk about everything, not just our kids and their neuro issues. No restrictions at BT on conversation.

    I too wish that our former members would return, and some have, and some stay and some just drop in and remark at how sluggish the forums are, because no one is here posting. I find that somewhat ironic. People leave, then come back and wonder where everyone has gone, while they were gone!

    But we're still here. And we're still talking!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  14. #20
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    I know I don't post much, but this is the only place to get any useful info about epilepsy. It has helped me. I do go to Facebook, ( I don't post every detail like walking the dog or having a headache... I do have a life), but I would never think about mentioning anything about my epilepsy there. Most folks just would not understand. This is a great little family in this forum :-)
    Gene

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