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Bakedtater08
10-21-2012, 07:42 PM
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 :)

magistramarla
10-21-2012, 09:44 PM
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.
Hugs,
Marla

jmail
10-22-2012, 07:11 AM
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.

tgal
10-22-2012, 08:02 AM
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.

Bakedtater08
10-26-2012, 12:56 AM
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!

Bakedtater08
10-26-2012, 01:02 AM
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.

Bakedtater08
10-26-2012, 01:35 AM
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

jmail
10-26-2012, 02:00 PM
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.

tgal
10-26-2012, 03:04 PM
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.

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

Bakedtater08
10-27-2012, 09:22 PM
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!

jmail
10-28-2012, 06:48 AM
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

Bakedtater08
10-28-2012, 02:51 PM
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? :unsure:
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

jmail
10-30-2012, 04:36 AM
"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.

Bakedtater08
11-01-2012, 10:59 PM
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!!!

jmail
11-02-2012, 02:40 PM
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...

Bakedtater08
11-18-2012, 08:13 AM
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?

tgal
11-18-2012, 09:08 AM
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.

jmail
11-19-2012, 05:07 PM
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.

The Survivor
11-21-2012, 04:34 PM
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.

tgal
11-21-2012, 07:41 PM
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!

Bakedtater08
11-21-2012, 10:27 PM
Thank you, at first we too were worried about medication induced seizures, because it started two days after the er had given me a mega dose of toradol & found out that toradol could cause seizures. But at the same time, this had started back when I was 16 and there after- before I had a slew of medicines I was on. After my neurologist apt today (the same office I'd seen ten yrs ago) they went over quite a bit with me-my history, my EEG, some of my family's accounts over the years (things they'd never brought up to me until today) etc. He told me my diagnosis is now a form of epilepsy- a type of "Uncontrolled Seizure Disorder". That of as of today I need to "protect my brain" at all costs, and instructed some of my family that came with that if my seizures last longer than 3-5 mins they are to promptly call 911 that its very possible for me to slip into a coma state or worse complications that result in death (yeah kinda got scary at that point). He wasnt seriously intense besides that, thankfully. So as of right now I'm started on a drug called "lamictal" and "neuronton". I have to come back in a month and in the meantime get an MRI and some bw done. He said sometimes it takes awhile to get just the right med and dosage to make seizures livable, and after talking the neurton over-I hate taking more pills than I need-he agreed I could start with one, but he'd like to see me make my way up to 3xs per day.

I know I should be happy to have answers, possibly something to regain control...but at the same time it feels as if its another mark against me. Namely because isn't allowing me to drive for at least 6 months and isn't sure if the state of IL will allow me to renew my drivers license now he's made this diagnosis...which for me is the biggest blow of all. I guess I'm just fed up of being told what I can't do, or losing what I could.

steve.b
11-22-2012, 04:32 AM
......I guess I'm just fed up of being told what I can't do, or losing what I could.

i totally understand the frustration.
it is almost that they are trying to seperate you from what you used to be.

sometimes it is hard to see the good side of our life changing decissions.

tgal
11-22-2012, 06:39 AM
I know how scared you are. I have been there. I won't tell you it completely goes away but as the seizures become more controlled so does the fear. It does take awhile to get the right doses of meds. It DOES get better. Life does return to a more normal place. I promise

jolynnhughes
11-23-2012, 04:00 PM
The jerking you describe is called myclonic jerk. It can be a neurological symptom or a seizure in itself. I know the "building pressure" feeling you descibe all too well. I get that same signal before I have a seizure -- that and a very confused feeling and a difficulty speaking. When that happens, I know a seizure is imminent and that I better sit down quickly.

You got out easy on the video EEG. Mine was a four day event at the hospital. I was only allowed to sleep one hour per day for four days, and I was constantly monitored via video camera and heart and brain electrodes. During that time, I had the light stimulation, exercise stimulation, and hyperventilation. While I did not have a true seizure during that time period, I did show what the neurologist called "build ups" often seen in epilepsy. He diagnosed me with left temporal lobe epilepsy, wrote me a prescription, and sent me home. I was home about two hours before I started seizing again. I had to return to the hospital four days later for another video EEG. This time, I had a seizure while I was there, and the doctor changed his diagnosis. I did not have epilepsy. That began a two year nightmare of me hopping from doctor to doctor trying desperately to get answers. I had to stop teaching -- went on disability for four months until summer came. By August, I was somewhat better and able to work, but I still did not know why I was having an average of four seizures per month. I saw two neurologists, a psychiatrist, two endocrinologists, a homeopathic doctor, and an internal medicine doctor. No one had answers. Finally, a gynocologist looking for signs of menopause discovered I had an autoimmune thyroid disease called Hashimoto's disease. It took another three doctors before I found one who believed my seizures were related to that disease, and one who practiced according to the latest research for treating Hashimoto's. Once I began my thyroid regime, my seizures all but disappeared. I have only had three since last February when I began treatment. I have numerous other problems still, and I am now trying to find a rheumatologist who will treat my autoimmune issues without bloodwork to back a diagnosis. I have only a positive ANA and high thyroid antibodies. Even with my many, many symptoms, I can't find anyone willing to prescribe Plaquenil. They don't use that for autoimmune thyroid disease, and I have no other positive blood tests to show any other autoimmune diseases. So for now, I take Synthroid and Cytomel for my thyroid disease, Neurontin for the burning and pain in my feet and hands, Lodine for my severe joint pain, and Bystolic for my high blood pressure. I have a new numbness in half of my right hand, along with various other strange symptoms that come and go. On a positive note, I rarely have a seizure any more.

My children are all grown, but they and my husband were extremely fearful when I first began having seizures. Now, they plop me in a chair and wait it out. No one panics anymore, and there is no big to-do. It is just a thing we deal with. I think your son will get used to it, and he won't be so upset by them. Of course, I hope you find medication that controls them so he won't have to.

I do want you to understand, seizures are different for everyone. While there are commonalities, you can't really compare another's symptoms or signs to your own. There are many type of seizures, and they manifest themselves according to the type. They also manifest themselves according to what part of the brain is affected. Also, be careful of misinformation. There are many, many myths related to seizures, and there is some very outdated information still floating around. Talk to your neurologist. While it is helpful to talk to others with similar problems, use your neurologist as your source for accurate information.

Don't give up on finding a doctor who will work to find answers. Keep educating yourself, and be an advocate for yourself. If you know, yourself, what you DO NOT have, you'll save yourself a lot of time and money. It took me awhile and a lot of research to get to that point, but once I did, I knew as soon as a doctor started talking if he was going to be a help or a hinderance. Hang in there! Someday, someone will listen, and you'll get on the right road to help. I hope it happens quickly for you!

jmail
11-26-2012, 04:04 PM
Wow, jolynnhughes... and I thought *my* Hashimoto's had progressed much too far when my new doctor found it. Also of note with Hashimoto's a lot of time is very low vitamin D and possibly vitamin B12, which you should probably be tested for. There are RA patients using plaq, so if you're RA positive, it might help... but be sure and have them check you for low D & B12. The B12 affects your nerves like you wouldn't believe (believe me), and can lead to de-mya-whatever that is where the nerve sheathing gets deteriorated...

Bakedtater08, most states (I *think* Illinois is included), will re-new licenses just fine, so long as the epilepsy is "controlled" by medication. There would most likely be restrictions. Of concern will be insurance. It can get expensive...

tgal
11-26-2012, 07:19 PM
Most AI diseases have low Vit. D issues so they should always look for that. You would be amazed at what problems that can cause. As for driving, in Texas the law is 6 months seizure free. All states are different but as jmail stated, it comes down to them being controlled by the meds

jolynnhughes
11-30-2012, 06:14 PM
Jmail, I have not been diagnosed with RA. I had a positive ANA, but nothing else was positive, so the rheumy told me it was likely from the Hashi. She said lots of people have a positive ANA but don't have autoimmune issues. Brick wall! Same brick wall I've been hitting with doctor after doctor. I was checked for D and B12. I was low D and took high doses but no change. It's fine now, and I continue to take maintenance doses. My B vitamins are fine. I'm much better in so far as day to day management. I did finally find a rheumy that would prescribe the Neurontin for the burning and pain in my feet and hands and also the Lodine for the joint pain. Once I got started on those, I could get through the night and then the day. That sounds weird written out, but the day and night problems were/are very different. Today, I have faith I'm going to find someone who will go the distance and get me on something that will prevent the progression (if there is progression -- who knows). I may feel differently tomorrow, but that's the way it goes. I stay positive until I can't and then, well, I find a way again. I'm sure that is many of our stories.

jmail
12-01-2012, 01:45 PM
Definitely, on the "many of our stories". Keep plugging away at it with the docs, and don't let up on the "search" for answers...