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Thread: SLE and seizures

  1. #11
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    Sleep dep test is different from a sleep study, and it is a "full" EEG. I mis-read what you "said" above. They want you tired for the sleep dep test, which will help you to be "on the brink" of wanting to sleep when they test. That helps with the results. It should take a bit over an hour to do, dependant upon what all they test. They'll do audio & visual "stimulation" (among other things) and record your brain's reaction. The tech that does the test can't tell you anything about the results, but most places have them "read" by a neuro within 24 hours usually, tho some places are lax, and it can take days to get a test "read". When did they schedule you for? Are you going to a neuro's office, or out-patient at a hospital? When I did my first test (back in the days of graph paper needle and ink machines), I did an 8am test, and had done an MRI at 6am at the same hospital. I wasn't sleeping too good anyway, so the "deprivation" part of it was easy... tic
    "There but for the grace of God, go I."
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    oh okay. Yeah i have no idea the duration of the test or what it include besides that. What are examples of "stimulation"? Nothing like an EMG right?
    I have no idea where its taking place or who is preforming it. Im not scheduled yet, they said they would work on scheduling it, but it could take 2-4wks to get me in. (my pcp office is scheduling it) I can agreee with the deprivation being the easy part! lol i get less than the 4hrs max she told me about normally, so that wont be a big deal lol

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    "One hour" is the usual test, dependant upon how your brain reacts. They'll have you do several episodes of relaxing and closing your eyes, maybe even have you try to go to sleep. The "main" stimulant (if they do any) is visual, with a tv screen they put in front of you that flashes around that "magical" 60Hz or so frequency, and will have different test patterns displayed. They might also do an audio stimulation, which isn't anything loud or rude, but similar in function to the visual. Some places might do a reflex test on your feet. They just watch your brain waves and record the result as your brain "interprets" the input. No needles, no electric shocks, like an EMG would have. You might be asked questions concerning your symptoms as they set-up, and they'd include your comments with the test results. You might also be asked questions afterwards. Those can help the doctor reading the test for diagnosis. They do make a mess of your hair with the electrodes, unless they use a cap with electrodes (like that guy in the V8 commercial on TV), but the caps don't work nearly as well as putting the electrodes directly on your scalp. The longest part of most EEG tests is the set-up and tear-down/clean-up. They usually measure your head for the proper placement of the electrodes, but some techs can go by the 'feel' of your skull. That part is a little strange, the "feely-touchy"... lol - If you have access to "big city" stuff, they can generally get you in pretty quick, like in a matter of days, but since you're more rural, they're probably trying to schedule through the closest place to your home, and that might take a couple weeks or so (most of the modern equipment is rather transportable)... My wife works with a girl who does tests at an outlying facility near here, and they only do tests on Wednesdays at that place. Something like that might be influencing the scheduling. Good luck with it.
    "There but for the grace of God, go I."
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    Jmail: thank you again for your response, I was able to read it before having my test done on Wednesday. I also wanted to say thank you for easing my nerves by your information about the test : )

    My update: As I said, I had my EEG on Wednesday-Monday I had another tonic clonic seizure home alone with my 12yo brother and (sleeping-thank goodness) 4yo son. I really had no warnings this time, besides a nose bleed a little while before (oddly they've come back since the last seizure pretty bad). Another difference this time around was mins prior as I was talking to my brother I was suddenly struck by " a drug blur" and extreme nausea. "Drug blur" being the best way I can describe it-a feeling similar to a strong pain medicine such as morphine, kicking in the "high" or swimming feeling in my head and no other thoughts besides the overwhelming feeling to become sick. The strange part is, I can't remember coming into the house, making my way to the restroom, apparently actually getting sick or taking off my jacket beforehand. I do however, remember distinctly what happened in detail seconds before having the wave hit me. Almost like a "shining memory" it's oddly very detailed. I did fall unto ceramic tile and whacked the back of my head a good one-busting it open and leaving a concussion. Sadly my brother doesn't know what to do nor how to use my cell phone and left me to lay unconscious for approximately and hr-hr and a half until my husband was there. Not sure if this could explain the memory lapse, I'm sure it's possible.

    Tuesday morning we called my pcp and to his and our frustration the receptionist hadn't even begun to try and schedule my EEG she had been suppose to a week ago. Thankfully, my pcp took it upon himself to call the hospital personally and got me in the very next day!

    The procedure was pert near as jmail had described. The only differences were: after the 20min "rest period" came the flashing light-it was actually a small light placed in front of my face while the room was dark and I remained laying down. I had to keep my eyes closed as it flashed many bursts of different light patterns. And before the rest period, I had to lay again in the dark as they had me hyperventilate on purpose-you have to breathe rapidly & deep as though you are blowing up a balloon for 3-5mins depending on how well you do it. I was also hooked up to a separate heart monitor the entire time. (I'm adding this incase anyone else is needing an idea for themselves).

    Overall it wasn't bad at all. I did get the funny smell and odd feeling in my head during the light session, but no obvious to me-seizure. They said when I left I'm definitely not allowed to drive until they can figure out a medicine to control the seizures. And to pay close attention to any warning signs, stressing the importance of those in the long run. My pcp had also changed my dx from possible seizures to seizure disorder.

    Calling tomorrow to get the full scope of things, hopefully we find some answers! Thanks again to everyone!!!
    Last edited by Bakedtater08; 11-02-2012 at 02:59 AM.

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    The doc's office (neuro guy) will usually call and want to set-up an appointment to discuss it, but some let the pcp handle it. Get in as soon as you can. I'd forgotten about the "huff-and-puff" routine... I couldn't help but laugh when i did mine (they had needles that "wrote" on paper when I did mine, and the noise was weird). The tech (my future wife) couldn't help but laugh when i kept laughing, so we hit it off pretty good... anyway, there is an "aura" usually associated with seizures, sometimes smell, sometimes "whoozy" feeling, almost always nausea, and most times, an almost "panic" feeling, even though you try and try to convince yourself that you need to get to a "safe" position, but that dad-blamed short-circuit in the brain tries to confuse, and usually does... short-term memory loss, and "spotty" memory is the general rule afterwards. Definitely don't drive, and if you feel that "feeling" again, try and recognize it early, warn someone near you (it's also a good idea to call 911), and lay on the floor, away from any stairs, or other hazards...
    "There but for the grace of God, go I."
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    Update: Well we haven't gotten any answers yet, after I called my pcp they put me on hold while the dr read the report. They wouldn't tell me anything, but that they were setting me up with an apt with the neurologist (next Wednesday). I thought I was doing good after the 2nd recent tonic clonic-I only continued getting odd jerks and "spacing out" moments which seems the new norm since, until 3 days ago when I had yet another tonic clonic early in the morning. This time however I felt a little more prepared-I've began recognising a "building pressure" feeling that begins before it. The weird part is, it feels almost as If i "need" to seizure (bizarre I know) and afterwards it's almost a feeling of internal "relief". As if someone releases a pressure valve somewhere inside my body.

    A big regret is that my 4yo witnessed this one, afterwards he was inconsolable. He's had a hard time dealing with all my recent kidney surgeries (3 in 2 months), accompanying me to weeks at infusion Centere, the injections, nosebleeds etc. There's many days he asks me or his father if I will die and leave him. At only 4 he shouldn't even be thinking of such things, but my assurance this time felt unaccepted. When we've tried explaining the seizure to him afterwards, he becomes irate screaming over whomever may be talking-insisting as tears stream down his poor confused face that I am going to leave him, that he had tried telling me to stop but that I wouldn't. I know logically it's the fact that his mother was "unreachable" that terrified him, but at the same time I can't help feeling like the monster I'm suppose to be protecting him from. No matter how hard I try to shield him from the illness, there's always moments when it's impossible. I guess the reason I'm babbling all of this, is that I'm looking for advice. How, if even remotely possible do you ease a child's worry or help them to understand something like this (lupus or any of it)? How do you protect the innocence of Naivety while maintaining factual assurance?

  10. #17
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    I wish i had time to really respond to this but I promise to do so later. I did want to say I am sorry about the young one but I promise there are ways to help him come to understand

    The other thing is that I wanted you to know, if you don't already, that there are different types of seizures. "spacing out moments" can sometimes be what are called "absence seizures" so make sure you talk to your Dr. About all of the things going on.
    Mari

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    Unfortunately, you can't shield the children from it. About the best my wife and I could do was to educate and involve them for potential emergency response. I'm sure it will be more difficult to involve your four year old, but perhaps your doctor's office may have some advice. I'm sure Mari will have more.
    "There but for the grace of God, go I."
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    Those Grand Mal seizures may very well be the result of some of the medicine you're taking. You need to talk to your doctor(s) about the side-effects in your prescription drugs. And you should look them up yourself too. This is just a possibility that your meds are causing the seizures.
    Living with Lupus Nephritis is not difficult but just a challenge.

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    Survivor is right. Although some of us do get seizures with Lupus it is not one of the more common symptoms. I began havin seizures before I started meds but if you are already on meds that is the first thing you should look into. It would be awesome if a change of meds could stop them!
    Mari

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