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Old 06-23-2013, 04:41 AM #1
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Default Feeling helpless

Hi everybody,

It's been a long time since the last time I've posted (The rash cleared up by the way). I'm going through so much I just need to vent. I've officially had seizures for 1 year now and their still uncontrolled.

I'm officially severely allergic to dilantin, topamax, and lamcital. I'm not on any kind of medication because my neurologist has basically given up. I'd probably just break out again anyways. I probably average about 2-4 seizures a week and their really bad when my menstrual cycle starts. I'm trying to get in to see another neurologist but that's not going well. The office is completely booked until September 11th and I won't be able to afford the visit or medication because I lose my insurance on September 1st due to aging out.

I just lost my job because of the seizures and can't seem to find work. I've heard its nearly impossible to get disability. What's the possibility of getting disability without a lawyer that I can't afford?

I just don't know what to do. I feel like I'm up the creek without a paddle and the boat has a leak. My state doesn't like to help people without kids. The stress of it all is not helping and is a trigger for me. My family doesn't seem to really understand what it's like to have these seizures and all the problems it brings.

Thanks for listening.
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Old 06-24-2013, 02:01 AM #2
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Default Great to Have You Back!!

Nice to see you have come back to be with us. Just come on in and vent all you need, because we have ears and shoulders here for you.

Sad to hear what you have been going through with your seizures and that the fact that you have lost your job. Hope you will eventually have a change in luck. Each of them just don't know what they are missing without having you there.

The are a great number of medicines a person is unable to take for helping them control their seizures. What may help one person will not help others. Hopefully your doctor will find the right one. What medicine are you taking at this time?

You might want to ask your family Dr. to refer you to see a Epileptologist (Dr. specializing in epilepsy.) You can usually find an Epileptologist at a big hospital or a University hospital. These Drs. know how to treat both epilepsy and other neurology disorders. These Drs. will do tests on a person and find the cause of the epilepsy, keep them on the least amount of sz. medicine, they are updated on any new treatments for epilepsy.

Like I said we are always here for each other. My thoughts and prayers are with you.

Darlene
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Old 06-24-2013, 05:42 AM #3
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Hi Amoinete,

Darlene gave you some good advice to see an Epileptologist, I found they have been of more help than any neuro I've seen over the yrs. and they know how to treat epilepsy with the least amount of medicine. Just like you I broke out with a rash from lamictal and my advice to you is to stay away from tegretol and trileptal because all 3 of these drugs are very similar and I broke out with a rash from each one. To find the correct med for your sz. as the Dr. to do a DNA test on you by doing this test they will be able to find what sz. med works the best for you with the least side effects by matching up the enzymes and chemicals in your body to the meds. I had this done to find I was drug resistant to all sz. meds out on the market.

I'm sorry about your job but legally they are not supposed to lay a person off do to epilepsy or other health concerns. I found this out through the American Disability Act that was passed a few yrs. ago. To find more info. about this check out questions and answers about epilepsy in the workplace this will give you all the info you need or you can call the Epilepsy Foundation of America at 1-800-332-1000 and they can give you legal advice for free.
I wish you the best of luck and May God Bless You!

Sue
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Old 06-24-2013, 07:07 AM #4
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Default Thanks

Thank you all for the words of support. That helps a lot.

I don't know if there is an epileptologist in my area. I'll have to check. Healthcare is not the greatest in my state.

I am aware of seizures being covered by disability act but I don't think there's much point in trying to fight it here. My state is right to work and it was a temporary position so they just listed it as contract discharge without any specific reason given but I know it was the seizures. I hate how they lied to me about the seizures not being a problem but I just don't have it in me to fight it. Call centers and temporary agencies is all that's available here. Not a very desirable work environment especially for someone like me.

I'll have to ask about the test. I'm very paranoid of any new medicines and hate playing guinea pig. I got Stevens Johnson syndrome on the Dilantin. Worst month of my life and I'm still not the same after that.

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