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  1. #1
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    Default Partial Seizures

    So about 5/6 months ago i went to the er for some symptoms i thought could be stroke related but a friend with cns lupus thought it could be a seizure...i had only ever had seizures in which i lose conciousness(grand/petit mal) and hadnt had any in 6 yrs...plus it didnt occur 2 me that oh you can have more than one type at a time lol so anyway, today loooking at my eeg order i realized my neuro wrote partial seizures on there as the clinical impression. i looked it up and it fit perfectly...anyone have a similar experience? i am def thinking my seizures have always been related to lupus now..as at 15 they came before my other symptoms which followed over a span of yrs later. any info/stories on partial seizures would be great. thanks.
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

  2. #2
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    Hey- I have Lupus SLE but it has hit the lining of my brain and caused me to have seizures. I do not have "epilepsy" per se, but you have to be treated for seizure disorder in the same way that you would be treated for it anyway-- with anti-seizure medications. So you MUST STAY ON THEM. Yes you can have MANY different types of seizures. And yes- I have different kinds of seizures. And yes I have experienced this.

    One thing I notice is that I can have seizures at the grocery stores when there is fluorescent lights. It bothers me with the odd flicker. So I try to spend limited time in such places and wear dark glasses when I shop in markets that have false lighting.

    And OF COURSE your seizures have probably been related to lupus. Which sucks - but you CAN handle it-- but you MUST find a rheumatologist and a neurologist who are willing to take care of you and keep them from happening again.

    Partial seizures - weather simple or complex - can become worse if they are not treated. They can begin to mirror to the other side of the brain if they are not properly medicated. And usually this is because of lesions in the brain from the lupus - Or from other central nervous system activity.

    Feel free to ask me any questions -- but know that partial seizures are easy to control but you MUST TAKE MEDICATION FOR THEM. You MUST be on an anti-seizure medication for them for THE REST OF YOUR LIFE. You do NOT want to mess around with it even if you do not get seizures very often. Electrical impulses and partial seizures often happen at night when you sleep and you might not be aware of them - but once you have them - you have them.

    Hugs.

    Take care. I'm around for any other questions and I'm sure others here can answer more. But I've been dealing with this for 3 years and my neurologist is VERY good. I'm very happy with my care ONCE I HAD IT. Please get it taken care of because if you do not - you only tempt fate. Your central nervous system runs your entire body. Please make sure you calm it down now rather than getting a little worse over time. *hugs*

    -Melissa

  3. #3
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    Thank you Melissa. I really am glad to hear someone else agrees with me about my seizures being lupus related. I have 5-6 criteria out of the 11 for lupus & yet they still wanna call it it "UCTD w/features of SLE." I call it lupus...I think its crap. Anyhow because of that both my rheumy & neuro are hesitant to use anything beyond plaquenil or pain meds as treatment(except anti-seizure meds now). I wish I could find someone who wants to help control this disease...I live on the eastern shore...if you know of any drs I could see that are not local(they didnt even believe I was sick)or that arent at Johns Hopkins in Baltimore,MD(thats where I go now)I would greatly appreciate it. Just dont know where to turn. Thanks again. -Britt
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

  4. #4
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    I guess it would help me to know how long you've been seeing each doc and how old you are... I had to go to THREE rheumys before I got good care... and then I had to go to 3 neurologists too... and finally back to my "good one" who took care of me.

    It sounds like I was "shopping" for a doctor.. but one rheumy said to me, "Melissa - if you took better care of yourself you wouldn't be so sick." Never took blood work - nothing. NOTHING.

    Fast forward 2 years and I was having massive problems every one in the book. Now I am dealing with hashimotos of my thyroid and several other autoimmune illnesses.

    I will say this and I mean it. Plaquenil IS a treatment - and it's something they can give you to stave off a flare. The doctors might be hesitant to DIAGNOSE you with Lupus-SLE b/c they are pussies - but they are at least being responsible by putting you on Plaq. They are. You can go doctor shopping if you want - if you don't think you are being believed. But If you have lupus- all you can do right now is PREVENT things, take precautions, and in general do what you can do to minimize flares and maximize your health.

    Go to therapists, support groups, neuropsychologists if you are in a fog, if you have pain, seek pain specialists or tell your rheumy that your current meds aren't as effective as you need and your joints are hurting. Make sense? Getting good doctors is important. And I went to both Emory and Mayo Clinic and got some of the WORST care in that the doctors seemed to dismiss me b/c I wasn't having EVERY SINGLE PROBLEM ON THE LIST... b/c they were wanting a text book case.

    And then I found VERY good specialists... (usually women - but a few very compassionate men) some young - some not-- but VERY good at their jobs... and they CARE - they CARE ABOUT THEIR JOBS AND THEIR PATIENTS -- and then I stick with them. They have to want to help. If you feel you aren't being listened to or helped - you need to go elsewhere. If you are having a bad time in an office -you need to figure out somewhere else to go. You don't have to get "stuck" with a doctor just bc they are "the best."

    Meanwhile -- sometimes treatments aren't perfect. Lupus is rough. Support groups where people don't sit around moaning - but take an upbeat "this is how we handle our lives" is good. You can't "compete" for who is sicker -- instead you just have to allowed that you WANT to have the best life you can with what you've got. And find a good support group where you're able to give each other tips like that - sunblock, doctors, etc. You should be able to find that on this site -- and go there. FIND REAL PEOPLE there - and they can give you names.

    Yes - it is frustrating. Yes - I K NEW I HAD LUPUS YEARS BEFORE I WAS GIVEN AN OFFICIAL DIAGNOSIS. Yes I got sicker because so many doctors were pompous arrogant assholes.

    Meanwhile -- You DO have a right to go to your rheymy and ask for your blood to be retested every so often and ask them WHY they put you on plaq if they don't think you have lupus-- and why you haven't had any flares... and that you worry that they think you are malingering and such... you WANT to have a good relationship with your doctor - be a partner with them. and you cannot if you are not treated like that. *hugs*

  5. #5
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    Hey, Mommy of2,
    How is the pregnancy going? Are those anti-seizure meds that you need safe for the baby?
    Keep on taking the plq and keep asking questions to keep both of you safe and well.
    Come back more often and keep us updated, OK?
    Hugs,
    Marla

  6. #6
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    I just read in Daniel Wallace's "The Lupus Book" about seizures being indicative of a CNS component of SLE.

    I hope you're doing better.

  7. #7
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    I was diagnosed with Lupus 17years ago. In the last few years I have developed severe headaches, confusion, speech issues, and some numbness and tingling. I am seeing a neurologist and so far he can not figure it out. My mother says that she wil be talking to me and I will "zone out" and it will take her awhile to get my attention. I dont know what to do anymore. I have had CT Scans, EEGs, MRIs, LPs. It is just so frustrating. I also have gained weight in the last several years. Everytime I go on prednisone my weight increases a little more. I have felt for a while that my Rheumotologist was being dismissive. My last visit he told me I was way overweight and I didnt feel well because I was overweight. I told him I was losing. I had lost 15 pounds since december. He told me it was probably muscle weight. He also said I was making a "career" out of going to the Dr. I felt so hopeless. Any suggestions?

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