I have a question for everyone.... I had, what appears to be, a seizure and ended up in the hospital. My MRI was completely normal and the neurologist stated that if it had been caused by my lupus, it would have shown plaque in the brain. It didn't. I also started plaquenil in January. Does anyone know if you can have seizures from plaquenil or lupus without it showing up on the MRI?
First sorry that you experienced that.....I too had what appeared to be a seizure but it was in my sleep. This happened twice. I went to the neurologist and basically had an EEG with no definitive results. I was put on Topomax for migraine headaches but it is also an anti-seizure medication as well. Weird part of this is I had the same episode happen to me last night but this time I was awake. I have what I call warning signs because I get this weird ache in my joints and then within ten minutes the uncontrollable muscle twitching became worse and worse lasted about 3 minutes or so but it was scary. I was afraid to go to sleep after and was sitting here wondering am I the only one going through this. Wish I could offer you an answer but I haven't found any myself.
Ladies:
You are NOT alone. I have CNS lupus. My MRI is normal but I have “episodes” that I think are called a TIA (transient ischemic attack). I’m completely aware of my surroundings, but I start twitching, get a terrible headache and then drift off congnatively until I can’t communicate at all. My breathing gets labored and I have trouble swallowing. I had them VERY frequently while in the hospital, even during an EEG. They’re not electrical so they aren’t seizures, but I’m still not allowed to drive. It seemed the higher my dose of steroids, the more frequently I’d get them. I’m not sure if they’re from the steroids or the lupus. Either way, I HATE them. Google TIA and see if it fits your symptoms.
Sorry you have to deal with them. This can really suck!
Wow I looked up TIA and I am beginning to understand what it is/was that happened to me. I was hospitalized in January and August 2011 for what was stroke like symptoms but all test were negative. Now I'm having the symptoms of seizures or what appears to be seizures so this gives me something to mention to my doctors when I go. Thank you for the information it was extremely helpful.
worshipgirl said:
Ladies:
You are NOT alone. I have CNS lupus. My MRI is normal but I have "episodes" that I think are called a TIA (transient ischemic attack). I'm completely aware of my surroundings, but I start twitching, get a terrible headache and then drift off congnatively until I can't communicate at all. My breathing gets labored and I have trouble swallowing. I had them VERY frequently while in the hospital, even during an EEG. They're not electrical so they aren't seizures, but I'm still not allowed to drive. It seemed the higher my dose of steroids, the more frequently I'd get them. I'm not sure if they're from the steroids or the lupus. Either way, I HATE them. Google TIA and see if it fits your symptoms.
Sorry you have to deal with them. This can really suck!
Thanks so much everyone! Apparently this is what happened according to my daughter, as I have absolutely no recollection... I was in my bedroom and I "fell". When my daughter found me, I was laying in the corner of my bedroom, my eyes were open, but crossed and I was drooling. My eyes were never closed. She called 911 and during the call I was physically fighting her to get up but still not really responding. I tried to stand up but collapsed again. The EMTs were there in about 5 minutes and I came to after they had started a line in me and drawn a blood sugar, so I was 'out of it' for about 10-15 minutes. When I started to come to I remember feeling very nauseous (I threw up in the ambulance), and very dizzy/funny feeling. When the EMTs asked me questions, I didn't know how old I was, what year it was, what month it was etc.... but I knew I should. In time, things came back to me when I was admitted to the hospital. I still have no recollection of anything from about 5 minutes before I fell to when I 'awoke' to the EMTs by my bedside. My daughter states that the look on my face during this episode was one she had never seen before. In her words I looked "mentally retarded", my mouth was slack and drooling, my eyes were blank, during the entire episode. Any ideas? Also, I have been having muscle jerking in my hands, feet, even stomach muscles for the past couple of months and was going to mention it to my doctor. I am wondering if this is related somehow?
Hi, am not for sure , but i've also had a seizure . But my physch doctor said that it was caused from stress and anxity. So the only thing that she did was placed me in the hospital for a couple of days and i got some rest . But am not for sure if it was caused from haveing LUPUS . I guess that would be a good question to ask your primariy doctor when you visit . talk with you later... Beverly L.
beverly, I to had the seizures my psych Dr sent me for testing & the Dr tried to say it was blacking out into a conversion disorder -LOL my neurologist & psych Dr had an amusing moment over THAT- Conversion Disorder is a multiple personality disorder where no other medical condition can be present. lupus cognitive fog episodes are not multiple personalities. needless to say my Dr referred me to my rheumatologist & I found out about the lupus fog. since I was placed on lupus meds those episodes have gone away. there’s so much I don’t know about this disease. I felt like I was the only one and going crazy but I feel so much better since I found this website and read of so many others who are experiencing the same things with their lupus -it is good to no longer be alone in this.
I am soo sorry to hear about your seizure. Try this link pasted below to check for drug interactions. It might not have been only the planquenil that caused the seizure, but, maybe a drug interaction with your other medications. Every time, I am given a new prescription I go to this website and check out the interactions before taking it.
http://www.drugs.com/drug_interactions.php
Be Well.
LOL, Hi Heather, yeaH THE DOCTORS ALWAYS HAVE FUN TALKING WITH US , AND NOW WHEN I SEE THE DOCTORS (PSYCH) , i ask them can i sit in the chair toi talk to them !!! They think it's part of the fog moments .... LOL Well good to know that you are doing better , talk with you later and hang in there .... Beverly L.
Heather said:
beverly, I to had the seizures my psych Dr sent me for testing & the Dr tried to say it was blacking out into a conversion disorder -LOL my neurologist & psych Dr had an amusing moment over THAT- Conversion Disorder is a multiple personality disorder where no other medical condition can be present. lupus cognitive fog episodes are not multiple personalities. needless to say my Dr referred me to my rheumatologist & I found out about the lupus fog. since I was placed on lupus meds those episodes have gone away. there's so much I don't know about this disease. I felt like I was the only one and going crazy but I feel so much better since I found this website and read of so many others who are experiencing the same things with their lupus -it is good to no longer be alone in this.