Epilepsy For support and discussion about Epilepsy and Seizure Disorders.


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Old 08-31-2015, 07:57 PM #1
beforHim beforHim is offline
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Question Is this correct?

I have an epileptic friend, got him to join a facebook support group. Well... he tells me that, everyone on facebook says stuff like, "get used to never working again" and "You'll be dependent on others for the rest of your life" and "Yeah doctors will never figure it out" and stuff like that. Tis can't be true, surely there's ways to get jobs, live dependently, get money for doctors and actually get a diagnosis, etc.

Someone has seizures, whether petit or mal, sometimes a few times a day, sometimes he'll go weeks without one- does this automatically mean he'll never get a job, he'll never be able to live independently, that doctors will continue to dismiss him or not refer him or get him any kind of tests or medicine?
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Old 09-01-2015, 12:59 AM #2
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hi,

** - online groups are skewed to include more difficult cases, etc.. (I'm a parent of a child who still has seizures, don't think I'd spend the same time reading epilepsy groups if child had seizure control). Still there are some doctors who are bad fits for various patients or misinformed when it comes to E. Every patient needs to learn to advocate and figure out how to find the right doctors, which is not always clear cut. If he does not know a lot about his epilepsy, that would be important to learn. If he can swing it to be seen by an epileptologist, he's more likely to get better control and an improved quality of life. Epileptologist are neurologists who focus on seizure patients. I've met one I didn't care for but the last one I met seems like he might be a keeper. Being an informed and saavy patient doesn't fix everything but it helps. The Internet is a place a lot of people vent, others get attention by venting so not everything is how it seems.
** Epilepsy Foundation kinda merged with the therapy project at epilepsy.com **

Last edited by Chemar; 09-01-2015 at 03:41 PM. Reason: NT Guidelines re other forums
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Old 09-01-2015, 01:28 AM #3
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Wink Nice to meet you!!


Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

I myself have had epilepsy since I was 10. Through the years I have worked at different places. In the todays world there is no person in the work field without have a chance of having a handi-cape of something. He must hold on there will be a job just for him waiting.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

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Old 09-01-2015, 05:58 AM #4
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Hi beforHim,

I have had epilepsy since I was 10 yrs. old soon to be 53 and I have had 2 brain surgeries to reduce my seizures but I work full time in public school as a teacher aide in Special Ed. Your friend can work the only problem your friend may have is transportation because by law a person is to go so long without having a seizure before driving, each state is different.
As pogo mentioned if your friend can get in to see an Epileptologist this Dr. knows much more about epilepsy, the cause of it, and can put your friend on the least amount of AED's (anti epileptic drugs) to control the seizures.
In the meantime tell your friend to cut back on the carbs and starch foods and stay away from NutraSweet all of these things can trigger seizures for many people. Tell your friend to keep track of their seizures write down on a calendar what time the seizure happened and the type of seizure or description of the seizure by doing this it will help the Dr. see if there's a pattern in the seizures (what time of day/night they happen or what days of the month). Often seizures can happen do to hormones changing each month but the biggest thing that triggers seizures is stress and lack of sleep. To get more detail and help you or your friend can call the Epilepsy Foundation of America at 1-800-332-1000 or check out their ecommunties and you can sign in and post some questions there and many people can help you out that relate to the matter. Also tell your friend to start taking vitamin B12 1000 mcg. once a day adult dosage and see if it helps reduce the seizures I know it reduced mine a lot. Wishing you and your friend only the best and May God Bless the Both of You!

Sue

Last edited by Porkette; 09-01-2015 at 01:07 PM.
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Old 09-04-2015, 04:55 AM #5
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Hi beforHim

Welcome to NeuroTalk .

A friend of mine lives with epilepsy.

She, because of help from her clinical care team, is fine.

You might find the general information here about epilepsy helpful to share with your friend; http://www.ninds.nih.gov/disorders/e...y/epilepsy.htm .

All the best.
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Old 09-09-2015, 09:50 AM #6
beforHim beforHim is offline
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Thank you everyone for the welcomes and the information.
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