A little background:
I've been having seizures since last November. I was in hospital twice for tests, mainly to rule out heart or brain issues such as heart attack, brain tumor and such. The tests found nothing wrong.
Now if I had been thinking, I would have requested not just the few isolated EEGs the hospital did, but longer term monitoring of brain waves. Unfortunately I was not as informed as I am now.
I was released on Dilantin, which I took faithfully. The seizures got worse, not better. In April I had one every two days or so. To this point, I was not seeing a neurologist, only my regular doctor.
Which brings me to my new neurologist. I've been seeing her since May. I described my symptoms and she initially told me I have a seizure disorder. She put me on a new broad spectrum anti-seizure medication called Vimpat. This, like the Dilantin, has not made any difference. On the contrary, I am beginning to have seizures more frequently and closer together.
After two particularly bad episodes that scared my brother severely (I am unconscious so never aware of what happens), I went to see her again yesterday. At this latest visit, she told me, "I am not sure you are having seizures."
When I asked why and what these might be if not seizures, she didn't answer. I repeated the question and again, no answer - silence! - not even "I'm not sure."
She has ordered some type of home monitoring equipment to try and catch the seizure activity. This is fine with me. I am not sure why we didn't go this route in the first place.
I am very concerned, not to mention annoyed, that she refused to answer any questions about her remark that I may not be having seizures.
If she believes that since the seizures haven't shown up on the isolated EEGs and don't respond to medication there is some other problem, I do have a right to know what she thinks.
My family thinks I should change doctors.
Side-note: I have bi-polar disorder, so it may be the neurologist thinks the seizures are a psychiatric issue. If so, she ought to say this. If so, it's as important to me as learning these are "genuine" classic seizures. It could mean at the very least I need a change of medication. Mental illness is not something we choose to have, any more than seizures are an illness we choose. In either case, there is a bio-chemical condition that needs addressing. *sigh* I would hope that a neurologist, of all people, is not back in the dark ages concerning bi-polar disorder who sees this as some weakness of character rather than a medical problem.
I've been having seizures since last November. I was in hospital twice for tests, mainly to rule out heart or brain issues such as heart attack, brain tumor and such. The tests found nothing wrong.
Now if I had been thinking, I would have requested not just the few isolated EEGs the hospital did, but longer term monitoring of brain waves. Unfortunately I was not as informed as I am now.
I was released on Dilantin, which I took faithfully. The seizures got worse, not better. In April I had one every two days or so. To this point, I was not seeing a neurologist, only my regular doctor.
Which brings me to my new neurologist. I've been seeing her since May. I described my symptoms and she initially told me I have a seizure disorder. She put me on a new broad spectrum anti-seizure medication called Vimpat. This, like the Dilantin, has not made any difference. On the contrary, I am beginning to have seizures more frequently and closer together.
After two particularly bad episodes that scared my brother severely (I am unconscious so never aware of what happens), I went to see her again yesterday. At this latest visit, she told me, "I am not sure you are having seizures."
When I asked why and what these might be if not seizures, she didn't answer. I repeated the question and again, no answer - silence! - not even "I'm not sure."
She has ordered some type of home monitoring equipment to try and catch the seizure activity. This is fine with me. I am not sure why we didn't go this route in the first place.
I am very concerned, not to mention annoyed, that she refused to answer any questions about her remark that I may not be having seizures.
If she believes that since the seizures haven't shown up on the isolated EEGs and don't respond to medication there is some other problem, I do have a right to know what she thinks.
My family thinks I should change doctors.
Side-note: I have bi-polar disorder, so it may be the neurologist thinks the seizures are a psychiatric issue. If so, she ought to say this. If so, it's as important to me as learning these are "genuine" classic seizures. It could mean at the very least I need a change of medication. Mental illness is not something we choose to have, any more than seizures are an illness we choose. In either case, there is a bio-chemical condition that needs addressing. *sigh* I would hope that a neurologist, of all people, is not back in the dark ages concerning bi-polar disorder who sees this as some weakness of character rather than a medical problem.
Last edited:
