Primidone

A person can have epilepsy and not have seizures; and a person can have seizures and not have epilepsy.  I read a little about POTS and understand it has to do with improper blood flow.  I imagine this could cause the seizures.  Epilepsy is a neurological condition which leaves a person more prone to having seizures.  Maybe doctor is incorrect and your daughter has epilepsy.  It would be nice if you could ask the neurologist if her symptoms are the result of more than one condition.  But it sounds like the neuro has left you afraid to ask any more questions.  That's too bad.Sounds like your daughter has a very complicated condition.  I'd say the first thing you should do is ask for a referral to another neurologist.  Your relationship is not good with current doctor.  I know it is a pain to start over with new doctor and possibly retry some treatments.  But doctors can often disagree and be very different.  

I am afraid that is where we are at as well. He diagnosed her off of an EEG 2 years ago. I had forgotten that I had promised myself to type up all my concerns so that he would be forced to read seeing as he is just awful at actually listening. My frustration is around here there is Cox or Mercy hospital systems. You are in one or the other. Absurd. So, it took her almost 2 yrs to even get into this neuro. Her PCP said he would have to sign off that it was o.k. for her to see someone else within the practice before we left. If that doesn't work we would have to drive to Columbia - 3 hrs away. Bloody mess!!! Trying to figure out how to pay for any of this is a nightmare. Sigh....I will type up all of this in a very concise manner using bullets and whatnot in order to not overwhelm this dr's focus. GGRRR.....Make it worth his while to slow down and read. I really need for a medication hold seeing as I feel he will be mad that I am questioning him about the Primidone. Hold her current scripts while we transfer to a new physician hopefully in town. So livid.....I could have hugged my other daughter's orthopedic surgeon when a second opinion was mentioned to him. By certain circumstances her getting a second opinion  was easier. "No room for ego in medicine as a doctor and your own health." THANK YOU!!!

Sorry to hear about your experience mom but like Michael I think you should try to find another neurologist. A great source for seeking out hospitals with good neurological ratings is US News and World Report. They were my source prior to surgery.Their neurology/neurosurgery ratings are in two forms; Adult and Pediatric. I say that because I don't know your daughter's age. For neurology and neurosurgery in "Pediatric Specialties" the link is:https://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgeryIf she has surpassed that phase and she is an adult, or almost there, then the link is:https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryBesides the listings in their order of ratings, you can also type in your state/city on the top left side when the hospitals pop up to see which hospital might be closest to you and how their ratings in neurology and neurosurgery ranks. But I prefer to just scroll down in the best hospitals section once I pull up hospitals under neurology and neurosurgery. That way you can seek out your state or a nearby state. Sometimes a nearby state is easier depending on your location. For example, if someone is in New Jersey and they aren't far away from the George Washington Bridge, well, Columbia is not far away even though it's across the Hudson River here in New York City. So sift through all of your options. Neurology has advanced significantly. The trick comes down to finding a hospital with good ratings.Also, when you are looking up neurologists at any hospital, make sure you also see the term "Epilepsy" attached their medical specialties. Epilepsy comes down to the more you know. As a result it would be good to know that your neurologist is one who has had exposure to this area besides just hearing the term. :)Best Regards