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Thread: Seizures

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    Default Seizures

    Hi! I know its been a while since I dropped in here. This year has been pretty busy. I have Systemic Lupus and this year in January and February I had Intracranial Hypertension for the first time and some mental / CNS problems. I've had some myoclonus and on Sunday I had a Grand Mal seizure. I'm kind of afraid to tell my GP because I don't want my license revoked. The myoclonus and seizures are preceded by episodes of Deja Vu so I get warnings. This much CNS involvement is unusual for me. Last year it was my skin that got the brunt of Lupus. Is there different treatments for CNS Lupus? I see my Rheumatologist on the 8th. Anyone with seizures how do you ask for preventative without losing your license? I have been on Topamax before for seizures but it was after a bypass from a thrombosis years ago and I was not aloud to drive.
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

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    Do you see a neurologist at all? You may have to give up driving no matter what. Think not only of yourself but of others. There may come a time when you have a seizure with no warning. I get no warnings any more when it comes to my neck spasms. Now they just happen where before I had warning signs.

    Be careful, seizures are not something to play around with.

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    Saysusie (07-05-2015)

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Justomegirlindallas;
    Usually, high dose steroids and/or cytoxan or cyclophosphamide are used to treat CNS Lupus. If the case is severe, high dose intravenous immunoglobulin (IVIG) are often prescribed. If you are having seizures, it is really important that you do let your doctors know as you may not always get a pre-warning before one occurs. It is best to get treatment for your seizures. Please let us know how you are and what treatment you and your doctors decide upon.

    Peace and Blessings
    Namaste
    Saysusie
    Last edited by Saysusie; 07-05-2015 at 11:22 AM.
    Look For The Good and Praise It!

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    Thank you so much I found the guts to reach out to a trusted neurologist that I'm not afraid of. He overbooked me I go in tomorrow. In the interim I'm on prednisone and keppra. I might get switched to cytoxan I'm scared Sayusie... Prednisone does AWeFUL things to my body. I'm starting to feel hopeless I can barely recognize myself sometimes. I finally have a support system and I thank my God for that blessing but shitting and passing in my own bed during a seizure? I mean what the hell kind of dignified life is that . Please tell me this won't be like the road to diagnosing Lupis where it takes them 7 effin years and a trip to ICU before figuring it out. I can't put my family through all of this again
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

    You can find me on facebook at www.facebook.com/sororenotis
    Please tell me you are from here and who you are if you add me there.

    I work full time and Leader for International Autoimmune Arthritis Movement
    http://www.iaamovement.org/

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    steve.b (07-08-2015)

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    I can hear the fear and frustration in your words and your feelings are well founded. No one wants to accept the prospect that this will be their life. I cannot tell you that it will all be OK or that the seizures will end or that your doctors will make speedy decisions and recommendations. I can only hope and pray for you that these things do occur.
    But remember this..those who love you will continue to love you and they DO NOT consider it as you putting them through anything. Their primary concern will be your health, well being, and how they can help you to achieve those things.
    My daughter also had seizures and there were many nights when I had to clean her up, change her and get her settled. Not once did I feel as though she was doing this to me, not once did I feel that I was being put upon, not once did I feel that it was too much for me. Trust me, your loved ones will never feel that way either. What will be important to them is that your doctor provide you with a treatment that will help you and that you are able to control your seizures. Please concentrate on that and trust in the love that surrounds you!
    Also know that we are here for you and there is nothing that you can go through that we do not understand! Sending you warm {{{hugs}}} and please let us know how your doctor appointment goes.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Nonna (07-13-2015)

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