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  • Lupus & Seizures

    About 30 years ago, I started to have simple partial seizures, went to the Dr. and found out that I have epilepsy. It is that I have feelings and no wound would know that I was having a seizure. Well about 10 years ago I found out that I have Lupus! Ok, so now I have to deal with something else. Been going on till about 5 days ago, and started to feel like I was going to have seizures, and even had some at night when I was sleeping, (that's never happened!).
    What I would like to know is there anyone out there that has this kinda problem?
    I'm tiring to find out if it's the Lupus or Epilepsy or both.
    I'm not going to be around to much longer as I have a heart condition that needs to have open hart surgery and that's not going to happen till they cure Lupus. Can't take this depression and pain much longer!
    marffin

  • #2
    Hi and welcome to the site. I am sory to hear that you are suffering so much. We do have a few members who have seizures as well as lupus. My understanding is that if lupus causes the seizures, then you would need seizure meds and to get the lupus under control.

    Here is more info from the main site on seizures

    http://www.thelupussite.com/seiz.html

    Here is more info on neurological presentations during lupus

    http://www.thelupussite.com/forum/sh...n-Rheumatology

    Does the consultant want to get the lupus under control before the operation? Have a look at the site and feel free to ask any questions that you may have.

    Take care

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    • #3
      Hi marffin and :welcome: to the site

      Deb has given you some useful links and advice. Has your consultant said that he won't operate on you?

      Take care,

      Comment


      • #4
        I had a seizure when Lupus first went out of control (prior to being fully diagnosed). I was on meds for that for a while but now I'm off them. However it was just that one time and it is not a common issue for me.

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        • #5
          hi marffin,

          i have seizures and lupus. having a good neurologist and rheumatologist that are willing to communicate and work together seems to be a key part of figuring out whether seizures are from lupus or not (as unrelated epilepsy can also occur). if you had seizures for approximately 20 years prior to developing lupus, my personal hunch would be that they are unrelated...but that's not to say that the disease could not be responsible for the current set of seizures (if it is unusual for you to be getting them now). that's where those doctors will come in handy, as will getting tests like an updated brain MRI, EEG, and possibly a lumbar puncture. some tests can sometimes show evidence of lupus disease activity, which could help them figure out where the seizures are coming from and how they can best treat them.

          why is it that you cannot have open heart surgery?

          best of luck,
          kit

          Comment


          • #6
            I have seizures all the time. I used to have them every night before falling asleep. Now, it happens when I've been on my feet too long and it's mostly at home. It happens when I get home from work, am doing all kinds of things, getting dinner together, etc. and then I feel this bone pain on the front of my legs. As soon as that starts, on comes the seizure. I am fully conscious during this time and can talk during it, but my body starts to convulse - sometimes lightly and sometimes violently - and then it stops. Normally, it lasts no more than a few seconds to about a minute. In fact, my Rheumy just referred me to a Neurologist yesterday and I will be making an appointment very soon.

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            • #7
              I know that my "S"s have shown up in MRI’s when I first started to have them. The reason I talking about them is that this last week I was having them in my sleep (I never had before) and they were coming on every day. I been on the only med. Dilantin that has keeped me in check. I have tried all the other meds. and came back to the D.
              I did ask my nero. about the Lupus and he said that anything is possible and there is no way to know.
              Now as for my heart problem, the reason that I do not want the open heart surgery is the Lupus. For the past 5 or so years I have been on a roller coaster ride on depression, I am taking meds for depression but they only work for so long. So I look to see what I have to go on for and there is nothing. I have been on long term disability for 20 or so years, and add the "S"s and Lupus, it just aint worth it to go on and have that surgery and come out after 2 weeks in the hospital and still be in the same shape.
              I have been around a lot and see that it's just not worth it and it never has been for me.
              So that's it and now I have a cold to add on to it!

              marffin
              Last edited by keebler; 02-25-2012, 05:11 AM. Reason: no need to keep balloon quote....

              Comment


              • #8
                Hi Marffin

                I am so sorry you are feeling so low but it's not surprising considering what you've been dealing with for so long.

                Fortunately I haven't has seizures so I can't offer any advice, however I am concerned about your depression and what level of help you are receiving. I know it's not every bodies cup of tea but have you tried counselling to talk through how you feel day to day. I reluctantly had counselling some years ago for a lifetime issue not connected to lupus and it positioned everything for me in my mind, whereby I could cope better with my emotions and even recognise the onset of a problem and deal with it in a way that stopped the anger and hurt.

                I really feel that you need emotional support and there are lots of friendly members here that maybe feeling the same way and can offer a shoulder to lean on or a friendly ear. Perhaps you feel isolated with your illness but you have made a good choice by joining the site and this shows that you have not completely given up just yet.

                I don't know if you have had professional help for your depression but perhaps you need to revisit your doctor and make them listen.

                In the mean time take good care and come on here for some virtual therapy.

                Comment


                • #9
                  I have been seeing a psy for the last few years, she also gives me meds to help, but as she knows I'm going downhill, and the meds only work so much. You got to understand I'm not able to do anything anymore. My back that has been out for the last 20 or so years doesn't let me work anymore, that is why I'm LTD.
                  But the thing is for the last few years I have not been able to or want to do anything, with my RA and other pain that comes with the Lupus. Also because I'm taking so many drugs I am not able to stay going for long, I have to take a 2 to 3 hour nap during the day. It's not that the I have given up, but there is no more for me. The doctors have said that there is nothing more that can be done. I have tried the meds for Lupus and can't use them because I get diarrhea and the pain meds I can only take so much before I get "S".
                  I'm not really looking for help, because I know that there is known. I just am tiring to get some of this off as it's hard on my wife and she is going to have a hard enough time when I'm gone.
                  That's life and for me it's a joke.
                  marffin
                  Last edited by ElephantEyes; 02-25-2012, 04:21 PM. Reason: Removed balloon quote, taking up too much space

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