My last visit to my neurologist. *sigh*

[Ori]

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.

[RobinN]

In my 4 year experience (which isn't long I realize), it is my belief that the only directions conventional medicine offers for E is meds and surgery, the other direction it offers psychotherapy. They do not even consider they might be coming from the same cause.

We have been on the rollercoaster of guesswork by the medical community, but the problem that I have run into, is that one specialty does not discuss or take into account ideas from other specialties. It has been up to me to put the ideas together from each specialty and test results, to come up with a plan that has actually been beneficial in my daughters situation.

I think that you should consider some alternative ideas. Life changes that will move you toward overall health. Not as easy as taking a pill, but at best it will support brain health, and the worse case, you will just feel better over all. Kind of a win win approach.
It isn't a quick fix though. It takes time, perseverence, and determination. There are just far too many anecdotal recovery stories to ignore this approach.

That's my two cents.