seizures with Lupus??

Hi Kat. Your seizure is a lupus symptom. It's actually one of the 11 criteria to diagnose lupus. Seizures are part of lupus nervous system involvement. I've never had a seizure, but I have CNS symptoms. I take Cellcept to help keep my symptoms under control. I hope your rheumy appt goes well! Love, Butterflake

Hi Kat. My rheumy also referred me to a neuro. The work-up I had was normal, but I still have Central Nervous System (CNS) involvement. Be sure to see the neuro cause the seizures you describe can be serious. 

My CNS problems include difficulty speaking- it's a kind of stutter that my rheumy says sounds like a record skipping with almost every word. He gets very worried when my speach gets bad. I frequently fall so I use a cane or walker. I can get double vision and/or trouble judging space (just yesterday I ran my truck up on a curb and got a flat tire). I often get tremmors and/or jerking movements. Like many lupies I have cognitive problems which is called Lupus Fog. We've actually had some good laughs on the forum talking about the crazy things that happen with Lupus Fog.  

Let me know how your neuro appt goes, ok? Love, Butterflake

Oh mY gosh! THANK YOU! Buterflake and Suetoo I am reading you post and saying yup thats me, I fractures 2 of my toes 6 months ago having a seizure. I have the same problems with speach and forming words basically everything you said. I was diagnosed with a seizure disorded a year ago , I have been good for a while untill recently and now my body is twiching, convulsing or spazaming whatever you want to call it and I t scares the hell out of me. I am new to this Lupus but not to the symtoms so I am still learing thanks again for all the info :) And boy do I feel dumb I did not know what CNS stood for, thank you, I sould have been able to figure that one out. I will let you both know when I see a Nuro.

Ps. about that Bunny I swerved to miss that same Bunny except it was in my house.LOL!

Big hugs to you both :)

kat10

Catlady Thanks for your replay, did the Mri show anything concerning seizure activity? Or is that why they did the lumbar puncture? How dose that show in the spine?
Are you able to work? because right now Icant and I have no income, soon to apply for dissability, but I am not very hopefull. I cant drive. What type of chemo are you on?
I am on Methotrexate and taking Neuroton for the seizures but apparently its not working. I am glad you are seizure free for now thats great!

Thanks

Kat10

Thanks catlady3 I am going to check out that book. Yes you are lucky its Lupus and not MS. I have a friend who has Ms and she is having a really hard time right now. I know we all go through our own hard times but when you see someone suffering worse than you it kinda puts things in perspective, and gives me the strenght to go on if she can. My sistuation is complicated my husband and I are seperated we live appert and he has promised to keep me on his insurance as long as I need it. but I am woundering if I might be better of without it and apply for some sort of assistance, because I am not working and its getting harder and harder to keep up on my copay and medications, I am living off the money I saved and dont have a whole lot left, pretty soon that will be gone too. I will check out those programs and appreciate the advice, thank you so much.

Kat10

Hi,
I have been diagnosed with lupus since 1994. It started with the malar rash and joint pain and then has slowly progressed to a positive spect test and a class 4 kidney infection in 2000 to now having seizures which landed me in the hospital for 4 days. I am told that I have lupus cerebritis and I am now currently taking; prednisone-40mg, plaquenil-400mg, prozac-20mg,xanax-4mg, dilaudid-4mg prn, dilantin-300mg, ambien-10mg. Since 1997 I have suffered from severe depression and anxiety and have even been through bouts of agarophopbia. I am very irritable, depressed, racing thoughts, anxious, no short term memory( and I mean totally gone,) and just a bad overall feeling of well being. I am allergic to penicillin and sulfa drugs and I was doing very well until a recent cruise that I took in which I developed an infection from a tick bite. On the cruise line I was given IV anti-biotics and I believe that I was allergic to the medication that I was given. My thoughts are racing like crazy and my family members are telling me that I am acting nuts. The doctors have tried me on seroquel and risperdal for racing thoughts but I had to stop them because of negative side effects. Can anyone please give me some advice because my panic is out of control. I have been told that is what cerebritis does to you and and will get better as the lupus does?

for my wife when the seizures started, she took topamax to help with the seizures. Methotrexate helped a lot until her liver started acting up. She did high dose prednisone for years but is now finally down to 15mgs a day which is the lowest ever.
Cellcept has been miracle drug. We use the name neuropsychiatric lupus as opposed to cns lupus. Her headaches continue to require constant medication.
The neurontin helps a lot to keep the peripheral nerve pain manageable, but it doesn't help the headache.
Additionally she has a monthly infusion of IVIG at the hospital and this has been very helpful.

Good luck

Kat--I tried to think about the Methotrexate but am just not sure. I think it was a couple of years and as I remember it her dose was just below 20 mgs but she took it as a shot as it was too hard on her system. Although we never were sure whether it was the methotrexate or the 30-40 mgs of prednisone she was on at the time that was causing her to bleed internally.

She has switched to cellcept now as an immunosuppressant instead of the methotrexate.

The cellcept has worked quite well for her to slow the progression but remission just isn't going to happen for her

It is harder to mess with her now though--(you get a pretty warped sense of humor after a few years I think)

I used to be able to say--not only is she addicted to coke--(diet coke actually) she was also a Meth head
she saw the humor although i am not sure others did

Also like you she didn't used to be able to take pills-but now she is happy to be down to around 20 a day from her old days of around 30.

IVIG infusion is not easy for most people. It can cause a couple days of brutal headache as well as 2-3 days of flulike symptoms but it also gives my wife about a week of feeling more like her old self than she can any other way. It is also gastly expensive. For us though it takes the combo of "the big 3" cellcept, prednisone, IVIG to keep her from hallucinating, crying in pain and living on narcotics for the pain, so it is worth it.

Good luck

Hi Kat. I also have temporal Lobe Epilepsy. I have been on Keppra for about 3 years now. It's about the 5th anti seizure drug I've taken. It has worked great for me, so hope you also have good luck with it. I was diagnosed with epilepsy about 15 years ago and just Lupus this year. Although I have had many symptoms for years. Did he diagnose you from your EEG or from your MRI? My Neuro has always said my MRI looked good (thank goodness) but now have to wonder if the Lupus and Epilepsy aren't related. I don't have uncontrolled body movements but so many other bizarre seizures. I have no long-term memory. Including kids births, my wedding, ect... During seizure activity I also stutter quite a bit and live in a fog. Also have a type of Hallucination. (kind of cool for all of about 2 seconds). I have been seizure free for about 1 1/2 years. I hope the Keppra works well for you. If not there are soooo many other Anti seizure drugs. Good luck~~

Ok I saw the title of this post after I signed in to the forum and I automatically had to click it and read it. I didn't even read all the posting in this forum but enough to know all you guys are generally on the same path as far as symptoms with your CNS involvement.....I wanted to share my story and get an opinion from you all because as of yet I have not been dxd with CNS involvement but have thought ive had it since the beginning.
In 2003 at 15 I had my first seizure. No warning, just happened while I was waiting for the bus outside of my house before school one morning and just fell. It was grand mal like the other 2 ive had. I was put on carbatrol for 2 yrs and as a rebellious teenager(because no one was listening to what i had to say about my symptoms being anything serious)didn't take my meds right and had another seizure a few months after. I came off carbatrol in march of 2006. I was seizure free until this past january. However, at 15 along with my seizures I also had a very severe 2 yr depression which my parents and everyone blamed on my negative attitude towards everyone and being a teenager etc etc. There were times I would wake up so pale and weak I couldn't move. I would ache(ive had a leg ache that woke me up some nights since I was 7 yrs old). My hands and feet would always turn purple and in the heat I would always get this redness across my chest,nose & cheeks and arms. People chalked that up to embarrassment and just getting flushed. In 2007 I gave birth to my son at 34 weeks(after my water broke for no reason at 27 weeks & I carried him till then)he was in the hospital 3 weeks after birth. I pumped breastmilk for him and once he came home everything seemed to dry up so I stopped and switched to formula. After that I noticed that weakness/etc i described earlier when I was younger...except it got worse. There were times i HAD to lay down and sleep or I was going to fall in the floor. My son being premature didn't sleep well and was also on a heart monitor for the first 6 months of his life and had reflux etc so it def took a toll and even then everyone said it was because things were so hard on me having a preemie. In 2008 I started noticing this burning in my thighs. I had thought it was stemming from the ache I always got in my legs but one day I just noticed the burning in the middle of the day and was like something isnt right. I went to my PCP and she did tests all of which were normal besides being anemic due to severe iron deficiency...why...we dont know. I did end up asking her what could cause this pain? And one thing she mentioned was lupus..I looked it up and low and behold, a disease that fit every little single thing in my life from birth that could explain why I felt the way(s) I felt. I was convinced. So I went to a few drs locally who dismissed me as "normal" even after my ana's and cpk's started coming back elevated. Finally went to Johns Hopkins and received a diagnosis of UCTD w/SLE features. I was put on Naproxen, then plaquenil, then Neurontin, tried Cymbalta, was on allergy meds etc etc. I was a walking zombie due to the disease itself and the meds made it worse..nothing was better. ...Here's where the CNS comes in...I had an episode at school(college)one day last year where my tongue mouth and head/neck tensed up and went tingly. I had had the tingling in my hands/arms and feet/legs before but nothing like this. I had severe fogginess and it seemed like the room was closing in or something(very hard to describe). I couldn't speak but was texting a friend at the time and that was all I could concentrate on. I started having anxiety and I couldn't move. I finally did get up and ended up getting a friend to come by and take me to the ER. They tried to say it was angioedema(allergic reaction). I had a severe malar rash(im sensitive to flourescents which are everywhere, as well as the sun and even sunscreen..makes it worse). They gave me an iv shot of benadryl and prednisone and it made things better until the next day when it wore off and I had another episode sitting in the living room watching tv. It wasn't quite as bad which I figured was due to the prednisone Id had...so I filled my prescrip for the pred for the next 2 days and took that and it went away. I was due to get an MRI/MRA w/dye & an EEG(the er never did any testing for lupus involvement of anything and never did any tests for stroke, seizure,etc even given my history.)but then this past january I found out I was pregnant after having my 3rd seizure a week before. I still have yet to get the tests done. I have to set up the appointments. But everytime I talk to my rheumy or neuro about these things they go by tests and say since theyve been normal before basically "you dont have cns involvement." I have been on Keppra since I had the seizure. My daughter is now 9 weeks old and I stopped breastfeeding her around 6 weeks. Since then my symptoms are starting to come back slowly. Raynauds, rashes, fatigue, weakness, bruising,pain,etc. I am due to get a workup but what I need to know is this, if I get all these tests done and they dont show anything significant according to my drs, what then? How can I convince them of the CNS aspect? I know I have it, Ive heard so many ppl describe it and it fits me to a t. I am also being evaluated for possible IBD which can also cause CNS symptoms if it is involved with other autoimmune diseases...I am frustrated because I feel like Im not going to get the proper treatment if people wont believe me. Ive had the problem my whole life and cant take it. Plaquenil still isn't working and the only thing that ever put me into remission was being pregnant and I have 2 kids and I cant stay pregnant forever lol Any advice/suggestions?? Help! :/...Im sorry I rambled so much but I really want ppl to know my story and relate and feel comforted they're not alone as well try and find a way to convince the people that dont get it that it's real. I have been seizure free since being put on the Keppra but I still have nystagmus/eye twitching. I hope you all are well and thanks again. -Lupie Britt

Hi again. Thanks for the reply Stacy. I had abnormal EEG's for years after my first seizure(mine are all grand mals). After I came off the meds (Carbatrol) in 06 and was seizure free for 7 yrs I had a normal EEG. Then I had the seizure this past january and never got another EEG but was put on the Keppra. Why would the brain wave patterns change and yet Id still experience the nystagmus i never had until i had my first seizure? Weird...

Hello Everyone
I'm new to the forum and the site and wanted to ask some advice. I'm a 27 year old female, diagnosed with epilepsy but have been having a lot of symptoms lately that are looking more like auto-immune. My doctor added an additional diagnosis of lupus last month. I work for the northern california epilepsy foundation and was pretty confident in my diagnosis but now my world has been turned upside down when I found out that lupus causes seizures. Have I been on the wrong medication this whole time. My seizures occur daily so now doctors want to put me on medications for both... I am having a hard time accepting the diagnosis of both being epileptic and having lupus. I have grand and petite mal seizures, migraines every morning, and more symptoms than I like writing out in between. Most friends have no idea what's going on because I'm not ready to open up to everyone until I have a final diagnosis but I'm feeling pretty alone in the meantime. Is it truly possible that I can have both of these diseases or should I have another doctor's opinion. I've been with my doctor now for two years but I feel like I'm on too many medications, my boyfriend finally confronted me last night that he feels like he's sitting by while doctors slowly kill me with medications without even knowing what they're treating me for. With the seizures, I'm no longer having a period, I have lesions on my ovaries and down my ear canals, severe vertigo, migraines in the morning along with vision loss, and then seizures to boot. I'm only 27 and don't look sick but am now permanently disabled because noone knows what else to do. I'm still in school and summing up another degree while waiting to be healthy enough to work, but am afraid that that day will never come. My boyfriend wants me to be hospitalized while they take me on and off each medication to see if they're all really necessary because he's afraid that I won't be able to have children one day if I continue on the heavy anti-seizure medicines, a lot of them have led to problems with childbirth later. I don't know what to do. If the drugs aren't controlling the seizures and the lupus flare ups are causing seizures, then isn't there a chance that it is all due to lupus? Everyone has been too scared to change my seizure meds to know. I'm willing to do anything at this point, if someone has advice please pass it on.
Sincerely,
Lonely and Confused Nor Cal Gal
p.s. How do you all handle the pain? All of the pain meds are making me sick, But are hard to live without these days....