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Perception is Half the Battle
Sun, 01/16/2005 - 12:34Hello Everyone,
While antiepileptic drugs may be useful in treating epilepsy they are only part of the treatment equation. What is missing in the treatment plans of most patients with epilepsy is acknowledgement of their emotional life and close examination of their perceptions of their seizure disorders and how their seizures impact their quality of life. Below is a link to an article addressing these issues:
Comments
RE: RE: Perception is Half the Battle
Submitted by batman on Tue, 2005-01-11 - 16:18
Uh, Belinda,
I don't know how "very educated about epilepsy" you're trying to describe and I'm not going to test or compare what you supposedly know with what I've learned. But I will say this. I just attended one of the S.E.E. Programs back in November 2004, along with about 90 other people interested and concerned about seizures and epilepsy, and learned so much more. The speaker, Dr. Robert Mittan, is very knowledgeable, and can explain what he knows easily and very understandable, speaking as a student, not a disciple. He knows more about epilepsy than some neurologist and I will plan to attend future S.E.E. Programs when they are held again in the state where I live. You may know about the VNS, but do you know anything about the RNS? This is something still in clinical trial. Something my own neurologist & epileptologist, knew nothing about.
Dr. Mittan presented a program in New Zealand. The President of the New Zealand Epilepsy Society, Michael Hills, had epilepsy himself, diagnosed of having absence seizures for 27 years. With what Dr. Mittan presented, Michael and his wife realized that not only had he been misdiagnosed but also taking the wrong AED. Mr. Hills wasn't having absence seizures; he was having complex partial seizures. Things necessary were changed and he became seizure free.
I have no idea if there is any special difference between taking medication as prescribed by a physician and taking meds religiously, but with you still seizing, then there's a strong possible chance that you may have also been misdiagnosed and/or are taking the wrong AED.
If you happen to see this reply then I'd like for you to reply back again and explain more about what type of seizures you're having, or the most you can describe for what happens before, during and after your seizures take place. Yes, I believe that some AED's have side effects that give feelings of a patient wanting to commit suicide, but it's the patient who needs the strength and courage of wanting not to give up on life. You are only one, and I am another one of the over 40 million people in the world with epilepsy. Over 2.5 million just in the United States.
Something I definitely don't understand is why you've been turned down for studies. Just because you have to many types of seizures, if by the way is really true, doesn't mean to be any type of reason to be turned down for further studies.
Just last week I went over some information online about “abdominal epilepsy' and with what it described, compared to what I've felt for 18 years alone, I believe it might strongly be what is actually happening to me.
Belinda, I strongly want to encourage you not to give up on yourself. Fear is the number one problem about epilepsy. For those who have it and those who do not, mainly because they don't know much of anything about epilepsy. I was a member of a local church for almost 6 years. My complex partials increased so greatly in frequency that I finally had one in the church. Reason why they increased was because of one AED knocking down the potency of the other. One of the AED's was switched over to another and around 18 months later the CPS stopped completely. Five [5] months later after having a cps in church, I was forced out. Of their 3 reasons why, in this order of the 3, were unfair/unequal, a down right lie, and a ‘made up to cover their butts' excuse. I have explained what happened and showed everything I kept. Enough to prove that disability discrimination is a part of the entire church denomination. But the only thing, which is keeping me from fighting it, has to do with the American rules of separation with ‘church and state'. The ADA covers enough for anyone with a disability to be able to get to the doors of all churches, but doesn't include the equal right for the church to open up their doors and allow everyone to be welcomed inside. I will always be a christian and will always believe in God, but with how I've been treated and having a feeling of being used in several churches, I've made my own personal decision to stop attending them, so I can learn about religion on my own at my own pace. There's more I'd like to discuss on religion but will end my discussion about it right here and right now.
Please share with us here, more about your life with epilepsy. Maybe someone here can be helpful.
Bruce J
Uh, Belinda,
I don't know how "very educated about epilepsy" you're trying to describe and I'm not going to test or compare what you supposedly know with what I've learned. But I will say this. I just attended one of the S.E.E. Programs back in November 2004, along with about 90 other people interested and concerned about seizures and epilepsy, and learned so much more. The speaker, Dr. Robert Mittan, is very knowledgeable, and can explain what he knows easily and very understandable, speaking as a student, not a disciple. He knows more about epilepsy than some neurologist and I will plan to attend future S.E.E. Programs when they are held again in the state where I live. You may know about the VNS, but do you know anything about the RNS? This is something still in clinical trial. Something my own neurologist & epileptologist, knew nothing about.
Dr. Mittan presented a program in New Zealand. The President of the New Zealand Epilepsy Society, Michael Hills, had epilepsy himself, diagnosed of having absence seizures for 27 years. With what Dr. Mittan presented, Michael and his wife realized that not only had he been misdiagnosed but also taking the wrong AED. Mr. Hills wasn't having absence seizures; he was having complex partial seizures. Things necessary were changed and he became seizure free.
I have no idea if there is any special difference between taking medication as prescribed by a physician and taking meds religiously, but with you still seizing, then there's a strong possible chance that you may have also been misdiagnosed and/or are taking the wrong AED.
If you happen to see this reply then I'd like for you to reply back again and explain more about what type of seizures you're having, or the most you can describe for what happens before, during and after your seizures take place. Yes, I believe that some AED's have side effects that give feelings of a patient wanting to commit suicide, but it's the patient who needs the strength and courage of wanting not to give up on life. You are only one, and I am another one of the over 40 million people in the world with epilepsy. Over 2.5 million just in the United States.
Something I definitely don't understand is why you've been turned down for studies. Just because you have to many types of seizures, if by the way is really true, doesn't mean to be any type of reason to be turned down for further studies.
Just last week I went over some information online about “abdominal epilepsy' and with what it described, compared to what I've felt for 18 years alone, I believe it might strongly be what is actually happening to me.
Belinda, I strongly want to encourage you not to give up on yourself. Fear is the number one problem about epilepsy. For those who have it and those who do not, mainly because they don't know much of anything about epilepsy. I was a member of a local church for almost 6 years. My complex partials increased so greatly in frequency that I finally had one in the church. Reason why they increased was because of one AED knocking down the potency of the other. One of the AED's was switched over to another and around 18 months later the CPS stopped completely. Five [5] months later after having a cps in church, I was forced out. Of their 3 reasons why, in this order of the 3, were unfair/unequal, a down right lie, and a ‘made up to cover their butts' excuse. I have explained what happened and showed everything I kept. Enough to prove that disability discrimination is a part of the entire church denomination. But the only thing, which is keeping me from fighting it, has to do with the American rules of separation with ‘church and state'. The ADA covers enough for anyone with a disability to be able to get to the doors of all churches, but doesn't include the equal right for the church to open up their doors and allow everyone to be welcomed inside. I will always be a christian and will always believe in God, but with how I've been treated and having a feeling of being used in several churches, I've made my own personal decision to stop attending them, so I can learn about religion on my own at my own pace. There's more I'd like to discuss on religion but will end my discussion about it right here and right now.
Please share with us here, more about your life with epilepsy. Maybe someone here can be helpful.
Bruce J
RE: Perception is Half the Battle
Submitted by Belinda on Tue, 2005-01-11 - 11:52
I read it and I don't think so.I'm very educated about epilepsy.Emotions haven't brought on my seizures since I was a teenager.I take my meds religiously and still seize.I have intractable seizures.Never been controllable.I'm turned down for studies because I have to many types of seizures.I was turned down for one because of a med I was on.And I refused to try another one because it in the family of a med that made em suicidal.It's been 41 years for me. Belinda