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  1. #1
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    Default your thoughts will be appreciated... :)

    hi everyone! i do hope this note finds you and yours well? it's anoher picture perfecct day here in lil ole hercules. the kind where you understand why people pay $625,000 for a 2bd/1ba 1000sf fixer in a questionalbe area!!! and i should know, im in the real estate/mortgage/financial business!

    anyway.....dear hubby and i are seriously thinking of stopping my siezure meds. i was at the max for neurontin and it's not working,( so im currently tappering), so my rheumie and neuro switched me to lyrica (which is a dirivative of neurontin!) which im afraid to take and hubby doesn't want me to because of the side effects. now, the neurontin does help with the nerve pain (neuropothy) though. my other meds are prednisone 20mg/day (tappering too); plaquenil 400mg/day; cellcept 500mg/day; mobic 15mg/day; reglan, ativan, zofran as needed (nausea); kadian 120mg/day (long acting pain med); norco, oxycodone, and morphine IR every 4-6hrs as needed for pain (not all together!! :!: ). i do the cytoxan/rituxan as needed.

    i have about 3-5 siezures a day, and am hoping that there is another med out there that will help without the side effects. im silly to think this(wish this), huh? or is this amount just 'normal' for a cns lupie with siezures ??? because if it is, then i think i will stop. im sic and tired of takng pills and am beginging to feel that it's the medications, not the lupus causing all these problems, which is my motivation really for this question. also, i feel (maybe falsely) that if i can get sezures under control,then i may be able to get some sort of life back. i really want to get back to work and im trying to figure out what that's going to look like now....

    so what do you think? im sure some of you are going to say something profound and sensible (marycain!?!) that's going to be so obvious and make me feel silly for sure, but i'd rather hear it from you guys.

    thanks everyone!

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    Angela, my first question would be which doctor prescribed the Reglan? Because it is STRONGLY contraindicated for anyone with a history of seizures or epilepsy. You might want to ask your neurologist to review your meds to see if any others are contraindicated for anyone with seizures, but the Reglan I'm sure of, because it's one of the meds I had to stop taking because it lowers the seizure threshold. So you might be able to discontinue it first, and see if that makes any difference in your seizures.

    What should I discuss with my healthcare provider before taking Reglan?
    Do not take Reglan if you have
    bleeding, an injury, or an obstruction in your stomach; pheochromocytoma; or epilepsy or another seizure disorder.
    These conditions make it dangerous to use Reglan.

    http://www.drugs.com/reglan.html

    I'm experiencing similar problems with neurontin not working as well anymore, but my seizures are still fairly well controlled. If you do want to lower some of your dosages, please discuss it with your doctor and wean off slowly - if you've been taking seizure meds and stop taking them abruptly, it could trigger rebound seizures worse than your usual ones.

    Keep us posted on how you are doing!

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    wow, thanks marycain. my rheumie had presc it, along with the ativan for my neausea, way before i started having siezures. i dont take it too often because the ativan (.05 mg) and zofran works much better for me. yikes! :shock: no more reglan for me......

    oh yes, i always talk to my docs before i do anything. im still warming up to my neuro. she's a friend of my moms, pure coincidence, they're in rotary together.

    so how many siezures so you have a day? and what are they like? how long have you been dealing with this? can you drive? :P so the nurontin works ok for you? what's your dose? i really just dont know. am i expecting to much by thinking/hoping that 'under control' means 'no more siezures'? do you know of other drgus out there? nurontin for me seems to be the lessor of two evils. i already put a call in to the docs (rheumie and neuro) should hear back tomorrow, and after talking with hubby, i think my plan will be to tapper down on neurontin to about half and see how that works.

    thanks so much marycain

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    I started having seizures a couple of years into the lupus. It started with severe headaches, and losing coordination. Then I started having trouble remembering names, and "blanking" out, where I couldn't remember what I had been doing. The docs initially put it down to TIAs, but once I started having full-scale tonic-clonic (grand mal) seizures, they started checking my EEG and doing all the neuro tests , and determined the weird spells were "absence" seizures. Since I also had a problem with neuropathy pain, they tried me on neurontin, and it helped the pain, but didn't completely control the seizures, so my docs experiemented with different combinations of anti-seizure meds. Right now I'm on 400 mgs. of Neurontin four times per day, and also Topamax 150 mgs. twice a day (I was on Tegretol before). Plus all the lupus meds, cytoxan, etc. The Topamax caused some nasty upset tummy/ flu-type symptoms for the first couple of weeks but it doesn't bother me now. But the neuropathy pain has been getting a lot worse, so the neurontin doesn't seem to be helping it anymore, but I'm reluctant to change meds because my seizures are fairly well-controlled. I don't have daily seizures at all - I still have small absence seizures, maybe two or three a week, but I haven't had a generalized seizure since I started on the Topamax. I don't drive anymore - I could get my license back after being seizure free for three months, but it's not that big a deal amymore since I don't have to travel for my job all the time now. Back in the days when I drove over a thousand miles a week, it could have been a big problem. I have a handicapped accessible van with hand controls, but it's just easier to let someone else drive, or take the para-bus. I have a cousin who lives just down the road whose kids are in the same school, so my guys ride home with her and I give her gas money. Luckily both the grocery store and the pharmacy deliver, so that cuts down on trips to town. I might start driving again, once I'm sure it would be safe, but I'm still too nervous about the possibilty of having an uncontrolled seizure and wrecking.

    There are so many meds out there - but sometimes it takes a lot of trial and error to find a combination of meds that works for you. Please don't give up on the idea that your seizures can be controlled - it may just be that you haven't tried the right meds yet. About four years ago, I couldn't have written a five word sentence without being in tears of frustration - now I can write a fifty page brief. It takes me a lot longer, but it still gets done. So it is possible - keep believing that!

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    Hi Marycain,

    How long do the 'absence seizures' last for you? How did they get diagnosed as seizures? My mom goes through so much confusion and forgetfulness....I'm just wondering if this might be part of her problem. She does have problems with names often...and sometimes, I'll give her something and the next day, she won't remember that I gave it to her. I've been so frustrated trying to figure out what's going on with her.

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    I'm not really aware of time passing, but I've been told they generally last under a minute. But after one, I'm often slightly disoriented and have trouble focusing, more so than the usual lupus fog. The "absence" seizures were diagnosed during a neurological workup for generalized seizures (tonic-clonic) - because the EEGs showed two distinct seizure patterns.

    Lupus can cause a more generalized "cognitive dysfunction" that can include disorientation, memory lapse, impaired concentration, and confusional states - that could be part of what's happening with your mom. There are no really effective treatments for this type of neurolupus - normally doctors hope that the symptoms will improve when the underlying disease is treated.

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    thx again for the info marycain! im going to research these meds and bring them up to my docs. with the para-van, im really feeling empowered and independent. not missing being able to get out on my own so much, but still missing my T5 :cry:

    my siezures last abut a min or so, and im aware, but there's no 'there' there, ya know? im not really there. and i tremor and shake a bit more than my usual tremor, not like full convulsions, then im out of it for about 10-20 min or so afterwards, and like you, am really disoriented and it's viery hard for me to talk and move around. the really mild ones you can barely tell that anything has happend, unless you try to talk to me.

    well, thanks again marycain, i really aprreciate your help and knowledge!

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    Thanks Marycain, for the info. My mom has a neuro appointment next week to try and figure out why her hands have tremors and why they are "clubbing" up. Thanks for the info, and sorry to sort of get off track of the post.

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