SLE and seizures
Hello again to everyone, haven't posted since April (so much has been going on medically I haven't mustered the energy or emotional endurance to stop back by until today).
My question is: has anyone personally dealt with seizures/epilepsy in addition to having sle? Also what is there to expect in the long run, what has worked for you in managing them?
Personally I had my second Grand Mal last night (first happened when I was about 17) although I've dealt with issues involving it for quite some time now. I really have no real knowledge as how it pertains to sle but it seems that the doctors think its related. Any info would be great :)
Hi and welcome back.
I haven't experienced this, but I'm sure that Tgal will talk to you soon.
Just wanted to say Hi.
Hey there Bakedtater08, can you elaborate a bit more? Have they done any EEG testing on you? Any other seizures, other than the two grand mals? Oftentimes, there's smaller seizures going on, and sometimes the patient isn't even aware of them. Are you on any meds for seizures? Are they talking about starting you on any? I've not had to deal with any myself, but my brother does, and it can be very frustrating, where you'll go along fine for the longest time, then have a series of seizures, then they'll quit again.
I am so sorry that you are having to go through this. Lupus and seizures are a difficult thing to deal with. As was mentioned above often times there are other mild seizures that you don't even realize are happening. For me, I was smelling burning rubber which I thought was coming from our office electrical equipment, for about 6 months before my first tonic clonic (what used to be called Grand Mal) seizure. The most common seizure for me after diagnosis was a partial seizure although it appears I was having night seizures for about a year prior to diagnosis but I didn't know what was happening. Night seizures and absence seizures can be so brief they are not noticed.
Epileptic seizures and Lupus seizures can be very different. If the seizures are truly brought on by Lupus then they are very hard to diagnose because there is not always a problem with the electrical activity in the brain but simply decreased blood flow. While I do have seizures I do not have Epilepsy. My seizures are caused by a lack of blood flow to the brain during periods of inflammation. I am on seizure meds, just to be on the safe side, although it is believed that if they can get my Lupus under control the seizures will get under control as well.
Please feel free to PM me if you want to talk about this privately or ask any questions you have in this thread. I will be happy to help in any way that I can.
Magistramarla: hello & thank you :)
Jmail: they have not done a complete EEG (not sure what its called) but are working on getting a "sleep deprivation EEG" setup. I live in a pretty rural area and I guess there is only one place that does it here, they warned me at my follow up on Monday, that it could be two weeks to a month to get in. However, once that test he may want to order another MRI and send me to Rush (in Chicago) for a 5 day inpatient study. For now I've been pretty much told to watch & wait. And to keep a journal of any unusual happenings, including another obvious seizure, and to record any events leading up to the event, the location, time of day, duration, etc. He also advised me to stop driving until after all the testing is completed, which is a bit disheartening, although two days prior to having the last the thought had already randomly crossed my mind while driving home with my son.
As far as the past, like I stated above I had my first known major episode at around 16 yrs old in school. Following that (the school transported me to the nurses room until my husband (bf at the time) could pick me up to take me home-no direct hospital consultation) I started to see a neurologist, because suddenly I started having episodes of memory loss, jerking, the feeling I best can describe as "water tricking down" my limbs, facial numbness and odd vision accompanied by a strange sensation of "wearing goggles". To be honest he didn't do much-left with that now familiar feeling of having more questions than answers. They suspected ms and I was put on a home bound program so I could finish the remainder of my last year. Finally it began to ease off. Although I still had brief episodes of temporarily forgetting where I was or who I was with for a few minutes, still persisted (and has to this day). The only forerunner of warning is an odd "smell" that I get. It isn't unpleasant necessarily-I can remember randomly getting it as a child-but I'm unable to describe it. Almost a "feel-smell" if that makes sense?
This continued until after I had my son in 2008 (when my illness really reared its ugly head) and I began to have the jerking episodes again. Differently than before-the loss of memory lasted longer. Driving home I would get lost, one morning my husband came to find me wandering aimlessly in a field behind our home, in nothing but my pajamas after I'd gotten up to use the restroom. He began taking me to the er demanding help, but they said there was nothing they could do. This was then followed by random fits of syncope. My neighbors would find me passed out in my yard, friends that stopped by had found me in my hallway or other areas, etc.
My pcp finally ordered an MRI which they said had shown a brain lesion somewhere in my left lobe. And Inflammation in the lining of my brain. Soon after this, I had traveled to mayo clinic for kidney issues and a fractured vertebrae. During a brief consultation with a neurologist there (my Internist at mayo insisted I needed to see one after he received all my films and I had developed a "dark spot" in my vision after a car accident) They dismissed everything as normal, and the MRI was fine. So I stopped pursuing answers, if the "big wigs" say it, it must be true, right?
It's just something I've grown use to as being "normal", as most of my family & friends. I realize my description of "grand mal" is a bit old school after reading-I honestly can't remember what my pcp had called it properly, but had said it was commonly known as "grand mal" when id given him the deer in headlights look! he had drug out all these diagrams and began rambling on about how some things were partial something or others, and something about tonic and clonic, and a bunch of other things that he may has well been speaking in tongues lol
I realize that's a ton of rambling to read & I apologize. But I sorta hope that maybe going into detail may help someone with a clue as to how it all plays together.
Tgal: thank you also for your response, if had use of a computer (instead of my mobile) I may know how to pm, but sadly it's a bit difficult navigating on a tiny screen!
The important relation to sle I forgot to add, was that these issues tend to increase or come back when I begin to flare-also worsening as my flares worsen. It's what has left me curious, if this indeed is or could be related.
Blah! Me & my gold fish memory! Another relation to sle I was also going to include: when I first began seeing my rheumy & was already on plaquinil for about 4 months, shed noticed the jerking and mentioned that plaquenil Would help to ease it. Ironically at that point it had just began easing it, but I'm not sure if its from the medicine or the fact my flares were starting to ease off. Obviously it hasn't ended it completely, but I don't randomly fling coffee mugs as often lol
You need to find a neurologist. Don't mess with it. A sleep study can reveal things, but you need a good, old-fashioned EEG (http://en.wikipedia.org/wiki/Electroencephalography) as soon you can. My wife does EEG studies (and other related tests), and she sees it all the time (that's how I met her, btw). Each time you seize, your brain gets damaged, which can contribute to more seizures. You also run the risk of serious bodily injury from falls, etc.
Jmail is right. You do need to see a neuro. Not only for the reasons he mentioned but it took too long for them to figure out what was happening with me and it caused short term memory loss as well as a loss to my IQ. If you are suffering from seizures you should never take baths alone, drive or a whole host of other things that a neuro will fill you in on.
Originally Posted by jmail
I too do most of my posting from my phone. I will send you a PM. You will see a blue notification at the top right corner of your screen when you lso in. Click on it and it will take you to your inbox. Simply click on the email and after you read it you can respond and ask any questions you may have.
please make a neuro appointment as soon as possible though
Jmail: ty again for responding. My pcp had mentioned referring me to a neuro, but he wanted to wait to get results. He had said it was an EEG, and then when I checked out the receptionist asked me if I was aware that this was a "sleep deprivation EEG" I told her no, and asked her what it meant. She proceeded to tell me that I will have to be up 6hrs prior to the test, with only 4hrs of sleep-no more prior to that. I'm not sure if that's also a sleep study? ( I've been suppose to get a normal sleep study for about 8months now, but haven't so I have no idea if they're the same)
Tgal: thank you as well :) I will look for the box!