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BIGMAN131307 BIGMAN131307 is offline

Venerable Voice of CWE

About Me

  • About BIGMAN131307
    Seizure Background
    ** Background Info. **

    I've been living with Epilepsy since grammar school. Over the years I have been on various meds & med combos. At one point I was taken off meds. My neurologist at the time said I just had migraines. After a few years of dealing with seizure spells, I had two grand-mals seizures. I was quickly put back on meds. My neurologist then tried various meds. But none really worked for me. Unfortunately he moved away. I then got another neurologist. Soon I was faced with more meds. My med. trail is large. Some meds ended up causing me internal problems. That resulted in me having surgery to remove my gall bladder. My current and only AED I'm taking Trileptal is causing me only one major side effect. It is very unappealing.


    Here is a general idea:

    As a Child:

    Phenobarbital
    Tegretol

    As an Adult:

    Tegretol
    Tegretol & Dilantin
    Tegretol & Neurontin
    Tegretol & Lamictal

    Taken off meds, because my then neurologist said I just had migraines. :(
    A few years dealing with seizure spells (CPS), I had two grand-mals seizures. My new *neurologist started me back on meds. Unfortunately that neurologist left, and I had to see another. :(

    Dilantin
    Trileptal & Dilantin
    Trileptal & Depakote (severe stomach/groin pain)
    Trileptal & Topamax (severe stomach/groin pain)
    Trileptal & Zarontin (severe stomach/groin pain)
    Trileptal & Zonegran (severe stomach/groin pain)

    *my fav. neurologist left. :( Neurologist #7

    Trileptal & Keppra (severe stomach/groin pain)
    Trileptal & Lyrica (severe night seizures / bloating / weight gain)
    Trileptal & Vimpat (bad rash on arms, legs, and stomach)
    Trileptal & Onfi (severe tiredness, stress)
    Trileptal

    *Some of my know triggers*

    Generic AED (When I was on generic Trileptal I was having at least 4-8 CPS a month. Since my Neurologist DAW my Trileptal, that's dropped to around 4-6, so far. I believe if I can get my other triggers under control it will drop even more.)

    Hot temperatures (When I was young I had heat stroke and passed out in a department store. Soon after that I started having
    seizures. I prefer 40-60 degrees year round.)

    Stress (This is the most problematic lately. There has been so much things happening these past two years. I have had nothing but stress. They say money doesn't buy happiness, but it would sure help in my case. )
    ************************************************************************

    After trying various meds & med combos, my then neurologist suggested surgery. I've had several of the phase I tests. But I wasn't
    sure if I want to go under the knife. I kept thinking of the 1% that have complications during surgery. My was luck is non-existent!

    I'm still alive and ticking. Just a bit overwhelmed with many things. Family & neighbors stressing me out. I'm trying to get my health under control. My digestion issues seem to be more stable now. I've added "Plum Smart" to my daily diet. It has helped
    me a lot. I've also stopped drinking soda. It's been at least four years since I last had any. That has helped me loose 10+ lbs. I'd like to get my seizures more under control soon. But that doesn't look to promising yet. I'm still unsure about having any surgery. I want to look into trying Neurofeedback, but my insurance probably wont pay for it.


    On 10/21/13 I went in for another VEEG session. To verify that my seizure activity focal point hasn't gotten any bigger. Also to make sure there isn't other points of activity. If everything goes as planned, surgery will be scheduled within the next couple months.

    Due to an overzealous Neurology team member, my stay was longer that it should have been. :( The main thing is I had both a gran mal & a complex partial seizure there. My seizures start from the same spot like they did when I had my previous VEEG session in my RTL. All my vital functions are located on the other side. Which makes me a good candidate for surgery.

    I reviewed the test results with my primary neurologist. My previous video EEG monitoring session back in '03 and recent one match up. The seizure focal point is the same, and hasn't gotten any bigger. I only have the one localized lesion in my Right Temporal Lobe. All my vital functions are located on the other side.

    The other day I met with the neurosurgeon. He was very pleasant and informed on my status. He answered all my questions. He believes I have a very good chance of being seizure free after surgery. No promises but the odds are in my favor. With this information I feel a little more confident in surgery. I'm still worried about having someone mess with my head. But a seizure free outcome, is calming my
    nerves some.

    Surgery was May 13th, Home from Surgery May 19th. Surgeon Feels Surgery Went Great! :) No problems before, during or after surgery.
    :) June 13th one month after surgery and no CPS in sight. :) But during the first few days of June I was very active. I was probably a little too active. Because after those busy days I possibly experienced 10-15 second "auras". No seizure like activity before, during, or after those auras. I was fully aware of what was happening. So I will check with my surgeon at my next appointment. 6/25 Follow up
    went good. As I was hoping those "auras" were a result of too much activity, too soon for a healing brain. Any problems I go back. I've got the go ahead for a regular routine. On 2/13/15 it will be nine months post surgery :) Where has the time gone?

    I'm still on my same AED Trileptal @ 900MG AM / 1200MG PM. I'll be sticking with it for at least two years.
    While I continue on my path to a "seizure free" future, I'm looking forward. I am looking at possible future careers. One of which is becoming a neurology nurse.

    July 13th, 26+ months seizure free. :) So far so good. I'm hoping to get a chance at a possible future without seizures and AEDs. I decided to wait until I feel ready to start weening off meds. :)
    Treatments
    Trileptal @ 900MG/1200MG Surgery was May 13th Home from Surgery May 19th. Surgeon Feels Surgery Went Great! :)
    Location
    NYS (Capital District Area)
    Interests
    Fishing, LEGO, Computers, Music, etc.
  • Signature
    Member of the Epilepsy Foundation.
    Undiagnosed sufferer of Dysgraphia.
    LEGO County, NY Fire Service
    RTLS went well 5 years down, life to go!, *Trileptal 900MG AM / 1200MG PM* (until I feel ready to reduce dosage once other issues are under control)

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  • Join Date: 07-09-2007
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