Hello People,

I am looking for some insight from other people's experiences to possibly help me start looking for solutions in new directions.

7 Years ago I came down with Viral Encephalitis, and Pseudo Tumor Cerebri. I was 30 at the time, and other than not svelt in pretty good health. Loss of muscle skills, memory, speech impairment, petit mal seizures, vision artifacts, etc etc

It took 9 months for me to recover and able to function again. The residual results from the infection was chronic headaches, memory recall, short term memory loss (things from after the infection), stutterred speech, occassional muslce tremors.

I had / have multiple neurologists, and neuro-opthamologists. I finally found a neurologist that was easy to work with, and responsive to my needs.

Topamax was the meds that got me turned around, however, I was one of the special people to which Topamax started a regularly recurring condition of Kidney stones.

Over the past 7 years I have tried an assortment of medications to try to alleviate the headaches, seizures and memory issues. I tried headache specialists, Dr. Kudrow, and California Clinical Trials. They were able to confirm that the headaches were occurring. After months of running through standard migraine procedures, they recommended I goto an institute that specialized in brain injury.

I then went through testing at UCLA for Cognitive rehabilitation. The extensive testing, resulted in prooving that I was not as smart as I used to be (was Mensa - Now scratching my head at Smarter Than a Fifth Grader).

Next up was Cedars Sinai Pain Management Clinic. They did more tests to proove that the pain was real, as well as test pain threshold levels. After 9 months, they were happy to give me all the pain pills I wanted and recommended that I goto the Brain Injury Institute in Michigan.

Travelling to Michigan to be poked and prodded for 6-8 weeks on a fishing expedition was not my plan for increasing my comfortability.

That was about 5 years ago. For the past 5 years I have stayed with my neurologist, and we have kept trying different medications to try to help with the headaches, pain and congnitive issues.

The only consistent medication has been Adderral in increasing dosages to be able to think for work. Pain meds are Percodan and Oxycontin. I try to avoid these using Percodan may 3-6 times a month and Oxy 1-2 times.
For the last year or so I have been taking Lunesta to be able to get to sleep.

So things were status quo for quite some time.

In November I started to have a signifcant increase in 'episodes'. Episodes included tremors, loss of muscle control in the hands, and visual, auditory and olfactory hallucinations.

The hallucinations were my brain/memory replaying something it had seen out of order. So a door once open, and now closed appears open. Phones ring, when they don't ring, my dog is barking while it lays sleeping next to me, etc etc.

These episodes increased in frequency till there were more than 50 a day.

In January I did a long term EEG study. The study showed episodes but did not show them as seizures. My neurologist says that makes them part of the mysterious brain damage situation.

In March I started Trileptal, once ramping up the dosage the episodes dropped off. However, this also killed all my imaginative skills. I was unable to problem solve, be creative, imagine anything.

So my neurologist tapered off the trileptal and started a ramp up of Namenda and Depakote. They are now up to the dosage levels she wanted. 500mg Depakote ER 2x a day and 10mg Namenda 2x a day.

The episodes have decrease some, maybe down to 30 a day. But I am so exhausted from fighting with myself all day long as to what is real and what is not that I am just wiped out. In additon, my motorskills are very tempermental, some times I can neither type or use the phone. The fingers, eyes and thoughts are just not lining up.

My next appointment with the Neuro is next week. Rather than just experiment with another drug, I am wondering if anyone who has been through similar situations, has any thoughts or ideas for new directions, tests, therapies, or places to go.

I am fortunate that I have complete insurance coverage, and can afford to try just about any treatment.

I would prefer something local, I am in Los Angeles. Vital stats 38, Male, Caucasian, not-skinny, single, no offspring, low blood pressure, low cholesterol...

And pearls of wisdom ?