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  • Temporal Lobe Frustrations!..any advice?

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    Old 09-05-2003, 08:22 AM   #1
    ShawnJC1's Avatar
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    Post Temporal Lobe Frustrations!..any advice?


    Let me give you a brief run-down of what's been going on: was a normal 25-year-old male who didn't smoke, drink, do drugs or have any history of ADD or epilepsy. Woke up one day in 2000 with symptoms:

    -short-term memory problems

    -tingling feeling in my head and fingers (went away)

    -poor focus in my left eye (as though I was seeing things but my brain couldn't process what I saw); didn't like bright lights.

    -feeling of unfamiliarity in places I should feel comfortable (house, work, etc.)

    -often had to ask people to repeat things; leaking feeling in my left ear.

    -pretty much emotionless (not that I was very emotional b4 these symptoms started)

    -started mis-spelling words and couldn't concentrate enough to even read.

    -no motivation

    During this time I was never really depressed or had any headaches. I was just frustrated and ****** off about my symptoms and not knowing what they were. I was a normal person then one day just woke up and wham! Tests were as follows:

    3-2000: Blood Tests (B-12, toxins, etc.) - normal
    4-2000: MRI Brain - normal
    5-2000: EEG - Mild slowing temporal lobe regions
    5-2000: Sleep Deprived EEG - Mild slowing, bi-temporally (felt like more on my left side, though)
    10-2000: Vestibular Testing - Normal
    12-2000: Lyme Test - Normal
    3-2001: Neuropsych testing - Normal
    4-2001: Spinal Tap - Normal

    So basically, the only thing that was abnormal in the testing was the 2 EEG's, which showed mild slowing in the temporal lobe areas. It was NOT indicative of epilepsy, though (and I never had a seizure before), but the neuro still tried me on Dilantin, which seemed to slow everything down even more. I was on it for a month before getting off of it. They also tried me on Neurontin which had the same "slowing" effect as the Dilantin. During this time, my head felt like it just needed to be "jump-started" to get the neurons going again in the temporal lobe region.

    Finally, in May 2001, my Neuro. thought this could all be psychological so I went to a psych. and he prescribed me zoloft which helped within 2 weeks. It lifted the fog and really helped with the memory and concentration. I still didn't feel 100% like my old-self and tried prozac for about 4-5 months. The prozac helped, too, but stupid me thought I could feel even more normal so tried Effexor. Effexor worked pretty good for 8-9 months even though I was only probably like 80% of my old-self.

    Then in March of this year I started getting all my symptoms back:

    anxiety, feeling of being disassociated with my surroundings (scary feeling), panic attacks, bad eyesight from my left eye and staring from that eye, leaking feeling in left ear, and something new, a wave of feeling down and depressed...

    The Psych. said to up the dosage of Effexor from 150 mg. to 300mg. and add a little Risperdal but that made me feel even more weirded out (another Doc. said Risperdal can make the dissociated feelings even worse). Finally as I was getting off the Effexor, I started feeling better. I tried Lexapro, Paxil, Zoloft (again) and Provigal (stimulant), but they didn't help. I would get anxious or down only because of my symptoms. It really sucked.

    I tried Wellbutrin once and added it to my Lexapro and it had a sedating result for me. I got off of it, though, because none of these drugs made me feel too great.

    Finally in early August, my Psych. referred me to a pharmacologist who I was very impressed with. He listened to me and took notes and actually seemed concerned. He said that it sounded like I had a temporal lobe "syndrome" or adult ADD or something like that (never had problems in school, though). He said the symptoms of it are very annoying. He said he wanted to arrange a repeat MRI and EEG. The next week, he said he wanted to try me on Lamictal. After taking 25mg. the first few days, I felt better but then it just started slowing me down again, and made the "dissociated" feeling much worse!

    I had the repeat MRI of the brain and it was normal. The only finding was slight assymetry with the right temporal horn slightly larger than the left one. The radiologist said it was nothing to be concerned about. I have a sleep-deprived EEG on this coming Monday. I have stopped the Lamictal, due to the up-coming EEG.

    Right now the symptoms are:

    Left side of my head near the ear (temporal lobe area) feels like it needs to be jump-started. It just feels "empty", as opposed to the right side of my head. Unfocused eyesight from left eye and STARING/GAZING out of the left memory and concentration aren't too troubling but it's the dissociation which is scary and leads to anxiety (sweating, unable to eat, etc.).

    I personally think it's a matter of time before I find the right meds. or combination. It's just so frustrating waiting. Besides this, I have a great life. I just want to enjoy it again, you know.

    It seemed like the SSRI drugs initially worked
    but just stopped for some reason. The mood stabilizers like dilantin, Lamictal, etc. don't seem to work either. They just slow my head down and make me feel weird. My gut feeling is that the EEG on Monday will come back showing slowing in the temporal lobe region again.

    Any suggestions? I'm a worrier by nature and read things online and see the symptoms and think I could have a serious disease but I truly doubt it since there's been really no progression in over 3 years and the MRI is normal.

    Any suggestions with meds, advice, people with similar experiences would be much appreciated. Thanks!

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