First it is, then it isn't....

Hi there. I'm having a problem with my neurologist and doctors in general. Here it is.

I'm 23 and female. All my life, I've had spells where I stare into space and grind my teeth. I'll often come back to it having forgotten what I was talking about, and not fully realizing it has happened. About four or five months ago, I started having episodes where I felt like I had lost time- only a few seconds, but customers at work would say that I would stand there and stare at them with wide eyes. I would be unsteady on my feet when I came back to it. I have also always had these spells where my body will jerk uncontrollably for less than 5 seconds, before going back to normal.

I saw a neurologist pretty quickly. They did an EEG, MRI, and bloodwork. The MRI and bloodwork came back normal, but on the EEG, they said they found "seizure-like activity." They didn't elaborate. The next neurologist I saw called it a "seizure disorder" and put me on Lamictal, to taper up to a higher dose after a few weeks, and see him again a few months later.

Well, I took the Lamictal, and there was no improvement. In fact, as recently as 3 weeks ago, I've started having a different kind of spell, where it feels like someone has hit the pause button on everything, and my entire body feels like it's been electrocuted. Sometimes, it just feels like certain parts have been shocked, but it really does feel like being tazed, and afterwards, I have extremely strong feelings of paranoia, fear, and jamais vu. The feeling can last for up to about 30 seconds, before it fades and I can go back to normal. 

I have seen four doctors in the last week- my neurologist, my sleep neurologist, my PCP, and my psychiatrist- and none of them seem concerned by this at all. In fact, my neurologist said that these episodes don't meet the diagnostic criteria for seizures now, so they're just calling them "episodes." He also said that because I didn't respond to the Lamictal, what's causing this is probably not epilepsy, and that it's probably just sleep deprivation.

My problem with that diagnosis is that I have always had sleep problems- why would I very suddenly now start having these episodes? My sleep hasn't changed. My mother has a history of epilepsy. I don't know, it makes sense to me that it could be epilepsy of some sort, and discounting that diagnosis based on trying a single medication that doesn't work 100% of the time bothers me. From what I've read, a lot of people go through several medications before finding an effective one, and many people don't even find any medication helpful at all. 

I'm not necessarily looking to find out whether this is or is not epilepsy right now. I'm just not sure what to do to get my doctors to take me seriously. I'm a zebra, with rare diseases and a lot of health problems, so I worry that doctors are discounting me based on the "obviously this very sick person is a hypochondriac."