Two neurologists, conflicting opinions, what to do?

Apologies for the long post. Within the past two years things started to get really weird for me. I started having frequent episodes of déjà vu. They would not last very long, and I would have a hard time remembering what happened during them except an extreme and very visceral sensation in my stomach. I also started having problems with depth perception (I’d drop things, or walk straight into the door I was trying to avoid), memory retention, and periods of general cognitive fuzziness (I’m a graduate student in a demanding program who’s always been a compulsive reader so the problem was very noticeable. For the first time in my life I was struggling to comprehend basic sentences and was spending hours on paragraphs that previously would have taken me moments). I was also losing blocks of time and would notice that at times my pupils seemed dilated. Since I’m a grad student, I just chalked these things up to stress and sleep deprivation. The episodes of déjà vu, however, were becoming increasingly more frequent and were starting to scare me so last summer I finally decided to tell someone about them. I was beginning to think I was going crazy.  When I finally got up the courage to tell a doctor about them, I was referred to a neurologist. I also went to a doctor for a complete physical and they told me I was perfectly healthy.

Before the appt., I started doing some research on déjà vu and came across the description for simple partial seizures and when I did I started sobbing. Since I was a little girl I’ve occasionally seen flashes of light (like a flash of lightening but in my peripheral vision), flashes of colors or moments when the room would start to cloud up, have occasionally heard what sounds like a musical tone in my ear, unexplained bad smells, and to me the most scary—moments where I heard this awful buzzing sound and felt as if my head were in a microwave.  These episodes never really affected anything and I just assumed everyone has those moments. I tried to tell my mom about them several times and once tried to tell a doctor but they brushed me off. These don't last very long and I don't have migraines.

The first neurologist I saw was uninterested in the other symptoms but very concerned about the déjà vu. He immediately scheduled a brief EEG and an MRI for the next week but told me he did not expect to find anything because I had been placed on Topamax (a very low dosage to begin with) and did not want to do a medication deprived study since he thought it was too dangerous.

Independently, I decided to schedule a consultation with an epilepsy specialist at the University I attend to get a second opinion.  I told him about the same symptoms and again he was uninterested in the other things but concerned about the déjà vu. I was having problems on the topamax as the dosage was being decreased (dehydration, several blood tests with a low potassium levels, and an emergency room visit after almost passing out). The epilepsy specialist recommended I switch to another medication and placed me on the highest dosage of Keppra. He then scheduled an ambulatory EEG (while on medication) and told me that he did not expect to find anything but wanted to be sure. During the ambulatory EEG, I had two separate occasions of tones in my ear and pressed the event button. The doctor never called me back with the results. Finally, when I called a month later, his nurse asked me if when I pressed the button, I had had a déjà vu. I said no and she said that those events were not seizures. I was comfortable with that, relieved even.

Yesterday, I finally had my follow up appt. with the specialist. He started the appt. by saying that he did find some abnormalities in the EEG independent of my pressing the event button and then immediately said that he did not think those were epilepsy. He asked me if the Keppra seemed to be helping. I said yes but that it was expensive and I was paying for it out of pocket (about $500 a month, on a graduate student stipend this is a hardship. I’ve had to take a second job). Immediately, thereafter, he said I had to make a decision about going off the Keppra. He said if I felt it was helping I could go down to 1000 mg in the morning but did not give me a schedule do so. He also said that if I wanted to he would write me a note for the insurance company saying that I did not have epilepsy but that they would no longer cover the Keppra. We didn’t talk about any of this extensively since he was in a rush (he told me he had to meet his wife for dinner.) I was a little frustrated and offended but at the end of the day I can understand that a specialist has many patients suffering more acutely than I am and my case probably seems less critical.

At this point, I do not know what to do. I don’t particularly want to have epilepsy nor am I happy about the cost of the medication and the tests. Nor has anything shown up on the EEGS or MRI. Doctor number one told me that to be sure they would have to take me off the medicine and do video monitoring which I am unwilling to do either in terms of time or cost. My brother has it so I am acutely aware of the long-term implications of the diagnosis (especially in regards to insurance, driving, etc….) I’ve had to take out student loans to cover part of the cost. What I do know is that the Keppra has helped enormously and I have been feeling much better. The ringing tones in my ears have virtually stopped, I haven’t had any of the smells, or flashing lights, and most importantly, I have not had any more episodes of déjà vu. Moreover, both my friends and my professors have told me that they have noticed a substantial difference in my ability to function. In essence, one doctor says yes, one doctor says no without any definitive proof one way or another. Either course (going off the medication or continuing) has long term implications and I can’t afford the tests that would provide definitive proof. Nor can I afford taking further risks with my career if I did go off the medication and started to have problems again (however ill-defined). THAT is the most important factor for me, regardless of what I may or may not have. I’m at a total loss as to what to do and beginning to regret even telling the doctors about the other symptoms besides the deja vu because I think they are assuming I am hysterical or a hypochondriac.   I'm also regretting seeking a second opinion and feeling like the doctors don't care about what is going on with me as long as I am not passing out while driving.

Any advice would be enormously appreciated.