Maybe some advice?

Hi everyone,

So, you might want to settle in for the background information. If not, there's a tl;dr question at the very end. I'm not new to either epilepsy (my almost 8 year old brother has absence seizures that are-- fingers crossed-- now starting to be controlled by medication) or neurological disorders. I personally have intractible chronic migraine as well as pseudotumor cerebri (PTC). I mention this only because when I was diagnosed with the PTC in August 2014 and was put on Diamox at a fairly high dose to lower my intercranial pressure. In November 2014, I was taken to the hospital with a tonic-clonic seizure that they described then as non-epileptic and caused by metabolic acidosis. My doctor then switched me to Zonegran (I have a bad reaction to Topamax) and all was well. It was the only seizure I had.

Fast forward to December 2015, and my last lumbar puncture, while much improved, was still high so my new neurologist (I go to a fairly decent clinic that specialized in head pain and some neurology so I have stayed with the same clinic, though my changed) decided to double my dosage from 300mg of Zonegran a day to 600mg a day. I was titrated slowly and I didn’t seem to have many, if any problems, until yesterday.

Night before last, my fingers were a little twitchy right before I went to bed, but they can be when I’m really tired, so I didn’t think anything of it and just went to sleep. I woke up that morning to what I, as well as my family and my doctor, is pretty sure was as the fun postictal aftereffects of having a seizure in my sleep.

Now, I’ll be perfectly honest in not knowing what the protocol would be here so, that’s in my question section but, I woke up at 5:30. My neurology clinic doesn’t answer its phones until 9 (emergency calls are told to go to an ER who will then have to call a different number for the on-call doctor, I suppose) and since I wasn’t currently having a seizure, I didn’t go to the hospital. Because of this, my neurologist wants me to go get an epilepsy evaluation done by an outside neuro because they are not set up to deal with epilepsy.

So the actual advice portion, a.k.a TL;DR:

1. As my brother’s second grade class was taught (terribly), a person with epilepsy may have seizures, but a person having a seizure may not have epilepsy. I’m freaking out waiting for my appointment and google is not your friend for medical advice when anxiety is a postictal symptom for you. Where is that fine line? Is there a fine line?
2. Should I have a seizure in my sleep again, should I go to the hospital even if I’m past the ictal phase? I would just hate wasting people’s time.

Thanks everyone,

Shade