So about 5/6 months ago i went to the er for some symptoms i thought could be stroke related but a friend with cns lupus thought it could be a seizure...i had only ever had seizures in which i lose conciousness(grand/petit mal) and hadnt had any in 6 yrs...plus it didnt occur 2 me that oh you can have more than one type at a time lol so anyway, today loooking at my eeg order i realized my neuro wrote partial seizures on there as the clinical impression. i looked it up and it fit perfectly...anyone have a similar experience? i am def thinking my seizures have always been related to lupus now..as at 15 they came before my other symptoms which followed over a span of yrs later. any info/stories on partial seizures would be great. thanks.
Hey- I have Lupus SLE but it has hit the lining of my brain and caused me to have seizures. I do not have "epilepsy" per se, but you have to be treated for seizure disorder in the same way that you would be treated for it anyway-- with anti-seizure medications. So you MUST STAY ON THEM. Yes you can have MANY different types of seizures. And yes- I have different kinds of seizures. And yes I have experienced this.
One thing I notice is that I can have seizures at the grocery stores when there is fluorescent lights. It bothers me with the odd flicker. So I try to spend limited time in such places and wear dark glasses when I shop in markets that have false lighting.
And OF COURSE your seizures have probably been related to lupus. Which sucks - but you CAN handle it-- but you MUST find a rheumatologist and a neurologist who are willing to take care of you and keep them from happening again.
Partial seizures - weather simple or complex - can become worse if they are not treated. They can begin to mirror to the other side of the brain if they are not properly medicated. And usually this is because of lesions in the brain from the lupus - Or from other central nervous system activity.
Feel free to ask me any questions -- but know that partial seizures are easy to control but you MUST TAKE MEDICATION FOR THEM. You MUST be on an anti-seizure medication for them for THE REST OF YOUR LIFE. You do NOT want to mess around with it even if you do not get seizures very often. Electrical impulses and partial seizures often happen at night when you sleep and you might not be aware of them - but once you have them - you have them.
Take care. I'm around for any other questions and I'm sure others here can answer more. But I've been dealing with this for 3 years and my neurologist is VERY good. I'm very happy with my care ONCE I HAD IT. Please get it taken care of because if you do not - you only tempt fate. Your central nervous system runs your entire body. Please make sure you calm it down now rather than getting a little worse over time. *hugs*
Thank you Melissa. I really am glad to hear someone else agrees with me about my seizures being lupus related. I have 5-6 criteria out of the 11 for lupus & yet they still wanna call it it "UCTD w/features of SLE." I call it lupus...I think its crap. Anyhow because of that both my rheumy & neuro are hesitant to use anything beyond plaquenil or pain meds as treatment(except anti-seizure meds now). I wish I could find someone who wants to help control this disease...I live on the eastern shore...if you know of any drs I could see that are not local(they didnt even believe I was sick)or that arent at Johns Hopkins in Baltimore,MD(thats where I go now)I would greatly appreciate it. Just dont know where to turn. Thanks again. -Britt
I guess it would help me to know how long you've been seeing each doc and how old you are... I had to go to THREE rheumys before I got good care... and then I had to go to 3 neurologists too... and finally back to my "good one" who took care of me.
It sounds like I was "shopping" for a doctor.. but one rheumy said to me, "Melissa - if you took better care of yourself you wouldn't be so sick." Never took blood work - nothing. NOTHING.
Fast forward 2 years and I was having massive problems every one in the book. Now I am dealing with hashimotos of my thyroid and several other autoimmune illnesses.
I will say this and I mean it. Plaquenil IS a treatment - and it's something they can give you to stave off a flare. The doctors might be hesitant to DIAGNOSE you with Lupus-SLE b/c they are pussies - but they are at least being responsible by putting you on Plaq. They are. You can go doctor shopping if you want - if you don't think you are being believed. But If you have lupus- all you can do right now is PREVENT things, take precautions, and in general do what you can do to minimize flares and maximize your health.
Go to therapists, support groups, neuropsychologists if you are in a fog, if you have pain, seek pain specialists or tell your rheumy that your current meds aren't as effective as you need and your joints are hurting. Make sense? Getting good doctors is important. And I went to both Emory and Mayo Clinic and got some of the WORST care in that the doctors seemed to dismiss me b/c I wasn't having EVERY SINGLE PROBLEM ON THE LIST... b/c they were wanting a text book case.
And then I found VERY good specialists... (usually women - but a few very compassionate men) some young - some not-- but VERY good at their jobs... and they CARE - they CARE ABOUT THEIR JOBS AND THEIR PATIENTS -- and then I stick with them. They have to want to help. If you feel you aren't being listened to or helped - you need to go elsewhere. If you are having a bad time in an office -you need to figure out somewhere else to go. You don't have to get "stuck" with a doctor just bc they are "the best."
Meanwhile -- sometimes treatments aren't perfect. Lupus is rough. Support groups where people don't sit around moaning - but take an upbeat "this is how we handle our lives" is good. You can't "compete" for who is sicker -- instead you just have to allowed that you WANT to have the best life you can with what you've got. And find a good support group where you're able to give each other tips like that - sunblock, doctors, etc. You should be able to find that on this site -- and go there. FIND REAL PEOPLE there - and they can give you names.
Yes - it is frustrating. Yes - I K NEW I HAD LUPUS YEARS BEFORE I WAS GIVEN AN OFFICIAL DIAGNOSIS. Yes I got sicker because so many doctors were pompous arrogant assholes.
Meanwhile -- You DO have a right to go to your rheymy and ask for your blood to be retested every so often and ask them WHY they put you on plaq if they don't think you have lupus-- and why you haven't had any flares... and that you worry that they think you are malingering and such... you WANT to have a good relationship with your doctor - be a partner with them. and you cannot if you are not treated like that. *hugs*
Hey, Mommy of2,
How is the pregnancy going? Are those anti-seizure meds that you need safe for the baby?
Keep on taking the plq and keep asking questions to keep both of you safe and well.
Come back more often and keep us updated, OK?
I just read in Daniel Wallace's "The Lupus Book" about seizures being indicative of a CNS component of SLE.
I hope you're doing better.
Hey all. The baby is doing fine but I havent been to the dr since 12 weeks & go back April 12th. We are supposed to find out the gender then. As far as seizures being a component of CNS lupus,that is true. I have researched & prob know as much as the docs lol It can also be the first symptom of lupus in cases & after my first seizure is when everything started to form. I cant get the mri/mra they wanted me to though because of the pregnancy. I am getting an eeg done april 12th that morning b4 i see my ob specialist. I have had a lingering headache the past 2 days & slight swelling in my feet..dont know if its from this cold/allergies/fl are thing or if it could signal a BP/kidney prob. Im gonna go to the pharmacy to check it on the machine,as I have also been having low blood sugar issues. Well see how it turns out. Wish you all the best & Happy Easter! God Bless!
btw...i am on keppra for my seizures. it is the only category c med available during pregnancy. it usually used for breakthrough seizures in combination with other meds. i was supposed to be put on carbatrol/tegretol like i was on for 2 yrs after my first seizures & came off of in march of 06 but it is category d and would cause birth defects.
My neurologist told me that THOUGH some times my anti-seizure medication can cause birth defects it is rare and it is worth the risk to avoid the seizure causing harm... *hugs* I am SO SORRY that you're dealing with all this DURING pregnancy. I didn't see that you were pregnant AND dealing with this. I somehow missed the pregnancy part.
That makes it slightly different -- but still - can you take valium -- b/c if you can - valium is also an anti-seizure medication that they can give you for breakthroughs. ugh. HOLD ON -- and GO TO A NEUROLOGIST.... My neuro here in Atlanta is a "high risk pregnancy" neuro... I wish you were able to find one where you are. *big fat hugs*
If you are having swelling - edema can be a sign of pre-eclampsia in pregnancy. Get off of any and ALL salt. Don't salt your food, and watch out for fast and/or pre-packaged foods, as they are full of salt and other preservatives. Eat foods that are as fresh and as close to whole as possible. Also, buy some raspberry leaf tea and drink lots of it every day - it really helps to flush out the kidneys and cut down on the water retention.
Take it easy, kiddo, and let us know what the baby's gender is - Leksie had a boy, so we'll be waiting to hear what yours is!
Hugs to both of you,
Hey all. Some of my lupus got better after I got pregnant...they said they didnt think I would have probs while pregnant just after,however it seems going into summer(my enemy w/rashes/photosensitivity) I am feeling more & more. Some days I feel good...but lately most days I dont. Could be allergies triggering it...and the sun & heat. I am sensitive to all of these & have a list of allergies & im on no meds 4 them w/the pregnancy. They were talking prednisone after the birth but I wonder if it may be suitable in th enear future with the baby being born in sept & me having to go thru the whole summer pregnant. I am also chemically allergic to sunscreen. Is prednisone safe during pregnancy?