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Fed Up!
Wed, 12/22/2004 - 14:14I have reached the end of my rope. These seizures are wrecking my life. Doctors have no answers. I am afraid to leave my home on my own. I have been informed by the Dean at my college that the only way I may return for Spring semester is if I have an aide with me at all times. This stinks. At 37 I am too old for a baby sitter. Anyone else facing similar issues?
Jessica
Comments
RE: RE: Fed Up!
Submitted by jbo0402 on Sun, 2004-12-12 - 21:22
I have been told that I have both epileptic and non-epileptic seizures which are related to my MS. The seizures seem to be exacerbated by fatigue. Unfortunately once the seizures start they continue for sometime, leaving me exhausted. Somehow the seizures affect the MS and the MS affects the seizures. I have been taking neurontin and trileptal for several years now. I have seen several neurologists over the years. I have been hospitalized because of the seizures and undergone numerous tests.
As for the situation with school, I have had to finish the semester from home. Because Gainesville College is not set up for students unable to attend classes it has not been the easiest situation for myself or the professors. Tonight I am wading through one of two final exams. The requirement for an aide has been made because the school does not have medical personnel trained to handle the situation. Vocational Rehabilitation Services is now trying to sort that out, as they will have to provide this accomodation.
I know that the situation could be much worse. Sometimes I become angry when I see how much the seizures and their potential for disruption have taken from me. I don't mind the driving... I never cared much for driving anyway. My last car was a good one. I have fond memories. It is irritating to not be able to cook when I choose, since setting the apartment on fire is a real possibility if I were to seize while cooking.
Somehow I find myself hesitant to leave the apartment on my own, even to check the mail. I guess I am afraid that I may have a seizure and end up in the emergency room again. They cannot do anything about the seizures there but thye have to check everything again and again and tell me the same things over and over.
Jessica
I have been told that I have both epileptic and non-epileptic seizures which are related to my MS. The seizures seem to be exacerbated by fatigue. Unfortunately once the seizures start they continue for sometime, leaving me exhausted. Somehow the seizures affect the MS and the MS affects the seizures. I have been taking neurontin and trileptal for several years now. I have seen several neurologists over the years. I have been hospitalized because of the seizures and undergone numerous tests.
As for the situation with school, I have had to finish the semester from home. Because Gainesville College is not set up for students unable to attend classes it has not been the easiest situation for myself or the professors. Tonight I am wading through one of two final exams. The requirement for an aide has been made because the school does not have medical personnel trained to handle the situation. Vocational Rehabilitation Services is now trying to sort that out, as they will have to provide this accomodation.
I know that the situation could be much worse. Sometimes I become angry when I see how much the seizures and their potential for disruption have taken from me. I don't mind the driving... I never cared much for driving anyway. My last car was a good one. I have fond memories. It is irritating to not be able to cook when I choose, since setting the apartment on fire is a real possibility if I were to seize while cooking.
Somehow I find myself hesitant to leave the apartment on my own, even to check the mail. I guess I am afraid that I may have a seizure and end up in the emergency room again. They cannot do anything about the seizures there but thye have to check everything again and again and tell me the same things over and over.
Jessica
RE: Fed Up!
Submitted by rfskye on Sun, 2004-12-12 - 18:02
Jessica,
I am 53 years old, and was diagnosed with epilepsy at your age. That was 17 years ago. I know first-hand how painful and frustrating this condition can be. With my years of experience, I am sure I can help you with these things. One of the first things we have to do is take a step back and realize that we are not the crazy ones--they are! And we have to stand up for our rights. I have done a good deal of advocacy work over the years, and abhor the injustices committed against us. I would like to know more about this Dean thing. We have our legal rights. Also, if you let me know more about your seizures--their frequency and type, how long you've been having them, etc., I may be able to be more help. I will provide an e-mail address at your request if you prefer confidentiality.
For more of my own story, visit my post on the "Help--seizure disorder or not?" thread.
Best of luck,
Bob
Jessica,
I am 53 years old, and was diagnosed with epilepsy at your age. That was 17 years ago. I know first-hand how painful and frustrating this condition can be. With my years of experience, I am sure I can help you with these things. One of the first things we have to do is take a step back and realize that we are not the crazy ones--they are! And we have to stand up for our rights. I have done a good deal of advocacy work over the years, and abhor the injustices committed against us. I would like to know more about this Dean thing. We have our legal rights. Also, if you let me know more about your seizures--their frequency and type, how long you've been having them, etc., I may be able to be more help. I will provide an e-mail address at your request if you prefer confidentiality.
For more of my own story, visit my post on the "Help--seizure disorder or not?" thread.
Best of luck,
Bob