About my appointment this past Wednesday

[seizures4ever]

I went to see the Epileptologist this Wednesday. He was nice enough.

Although, "silently condescending," if you know what I mean. In other words, he never said anything patronizing directly to me. But when I told him that, if I feel a seizure coming on, I do a mental check of my pulse, blood-pressure, and environment to see if I can possibly stop my seizure, he just gave me a cocky "isn't that cute" kind of half-smile.
I got the same response when I mentioned neurofeedback.

To my amazement though, he suggested natural progesterone as a possible treatment if my neurologist determined it may be helpful. He said not to use synthetic progesterone.

Of course, he gave me a run down of all the medications to try and all the brain stimulators that are on the horizon.

He seemed to be a nice-enough man, and a knowledgable doctor. I was just let down that I walked away with no real info. that I didn't already know. He wouldn't change my medication, and he didn't change the settings on my VNS because "they are already at the highest levels on both strength and frequency."

The drive to his office was over two hours. It sure was a disappointment to go so far to get nothing new accomplished. Of course, aside from waving a magic wand, I suppose there wasn't a whole lot he could do for me in a one hour visit.

I've had six c-p's and one "status" s-p seizure this week, along with my steady stream of daily s-p's...plus two migraines. Maybe I am just grasping at straws at this point.

Love you all. -Julie

[Belinda5000]

If that had been an Epileptologist I'd seen I would have told him exactly what I thought of his attitude.

Belinda

[RobinN]

Julie - I appreciate that what I know is the same as what the doctor knows. It assures me that I am on the right track. What scares me is when I offer information and they respond that they know nothing about it.

[LivingFruity]

The last neurologist I talked to concerning my son, asked me if I had medical training, since I seemed to know so much about what was happening. Then he turned around and discredited our success with diet control in my son's life. I've learned a lot more about seizures, epilepsy, and treatments on my own, than any of my son's doctors have ever been able to share with me. As Robin said, it's scary when we seem to know more than the doctors do.

[seizures4ever]

Thanks for the replies!

It's funny how well we get to know one another on these forums...when he (intentionally or unintentionally?) made me feel "cute" for trying my ideas (self-awareness-type biofeedback), I immediately thought of you all and knew I was not alone.

I knew that neurofeedback was a good idea, not only do you all support it, but my "regular" neurologist is very pleased with the idea.

He shocked me when he mentioned the Natural progesterone treatment. Robin, I thought of you, right there in his office! Because of our PM's, and your posts, I've been doing the research on what I'm learning from you all. So, when he mentioned it, I was able to say, "yes sir, I've heard of that...I will definitely bring it up with my neurologist!"

I'm still learning...looking at my diet. Most of my research, until I found this site last year, was on the "medical prospective" (aka: tradional "accepted" treatment).

My seizures are totally out of control...if nobody can help me, I'm going to have to find the answers to this on my own.

Love you all,
Julie

[LuvMyTwins]

Good for you, Julie. Isn't it empowering when you go into a doctor's office and can hold your own? Soooo much better than just taking orders. You have my thoughts as you go through this time!---LMT

[Bernard]

I went to see the Epileptologist this Wednesday. ... Although, "silently condescending," if you know what I mean. ... he suggested natural progesterone as a possible treatment if my neurologist determined it may be helpful. ...

Many doctors are petty, small individuals when they aren't the king of the castle. They don't like to be second guessed or second fiddle. I'm guessing the epileptologist you saw, being a specialist, is not pleased having to defer to your neurologist, much less to you the patient.