Seizures- Your story
Since there seem to be several in here now that have seizures I thought that it would be good to hear your stories, how they were diagnosed and how they are/were treated. Too often those that have seizures and have Lupus seem to have difficulty getting the doctors to confirm that the seizures are Lupus related (not all are).
If you have seizures along with your AI disease please tell us your story
Thank you for starting this thread! I'm too tired to tell my story tonight, but I'll be on as soon as I'm up to it. I've already written two long posts tonight, and I just don't have anything left. Going to bed for now. Thanks again! Can't wait to read everyone else's story (not that I'm glad there are others who suffer, mind you).
I'm glad you asked this because I was just about to ask you the same things after I read your other post! I was diagnosed with epilepsy after I had one tonic clonic seizure that was witnessed by a doctor and my eeg showed epileptiform brainwaves. It was thought to be a secondarily generalised seizure because other episodes had been like partial seizures. I was not at all happy with this diagnosis, argued with the dr about it, had to accept it and take meds because otherwise I wasn't going to be allowed to drive for ages. At the time, the drs in the hospital thought it might have been lupus related so I had MRI and CT scan of brain (they were normal), and i got out of there as soon as I could! Then my neurologist said he thought it could be cerebral vasculitis. My rheumatologist said it could be due to lupus or it was probably because I'm on the autism spectrum and that is common (I have doubts about this diagnosis too!) So yeah, no one has confirmed that it is or isn't lupus related but its treated as epilepsy.
I came to terms with the diagnosis and taking meds after doing some research - I found out that because of my test results there was something like a greater than 99% chance I had epilepsy, if it was due to autism treating the epileptiform brainwaves can help you to be less autistic even if you don't have seizures, I thought (correct me if I'm wrong) that even it was due to lupus I'd still need to take antiepileptics (although you'd need other meds as well) and the antiepileptic I'm taking is good for depression and I was depressed. I haven't had any side effects and the seizures (if that's right!) have stopped.
So yeah that's my story. I was wondering how yours got linked to lupus and whether your eeg was abnormal too. Of course I still wonder whether mine might be related especially when i get weird migraines.
You definitely have to take meds to prevent seizures (doctor's guidance, of course). Each seizure damages brain tissue, causing scarring, which can lead to more seizures... Same thing with most tissue that gets attacked by lupus or any other "invader", but it's just a bit more important that the brain keep functioning properly... I don't have seizures, but my brother does, and my wife is an eeg tech, so I get "educated" all the time around them...
i have "lack of brain activity", not really seizures.
my brain goes into a pause.
i have had specialists try to offer a reason for this.......
but as you might guess.... they can not.
they have run tests, and tests, and tests.
all they can say is ........
i have a brain... and it works.
these pauses are hard to catch.
if nothing goes wrong, i do not even know i have them.
when something does go wrong......
my brain stops responding for a while, (time can vary from micro second to ?)
i have driven for over 1 hour, in the wrong direction, and not known how i got to where i was.
i have came to my sences with a chain saw ripping the jeans on my leg.... but not me.
i have driven off of the road, and came to my sences in the gravel.
i have came to my sences with a lawn mover on top of my foot.
so i now am careful what i do / do not challenge.
i only operate machinery with supervision.
(i am 50, and i need to use power tools with my 12 year old watching me)
i drive only in emergencies
and i refuse to make important descissions on my own....
i take company to all my medical appointments.
but i do enjoy life.
i rent a farm house......
and have a view to die for.
i now get a government pension as i cannot work.
Looking back I had been having seizures for a very long time (well over a year) before I had a clonic tonic seizure at my office on April 7 and was carried out by an ambulance. I had already been going to doctors, had been diagnosed with SCLE Lupus (everything Lupus gives you but a promise that it wouldn't affect my organs) and sent to a neurologist for some strange muscle issues going on (I called them my robotic shocks) ,along with several other things that were happening and the fact that I kept smelling burning rubber all the time! I would go and check every machine in our office thinking there was an electrical fire or pull over to check my tires thinking they were burning. My PCP said "probably a sinus infection but since you are having the other issues I will send you to a neuro". I always wonder if I had sought treatment earlier and not just assumed so many things if I would have kept myself from getting so bad. I will never know the answer to that but it is the reason I urge people to get to the doctors sooner than later when any CNS issues arise.
I had been having night seizures the longest. I didn't know that until I was diagnosed with seizures and the doctor said "Well, that explains the loss of bladder control some nights" (that he had missed the first few visits because, in his words, "You had so many things going on it was hard to put it all together". Ya think? I was told that my seizures had nothing to do with my lupus for almost 2 years. Even though the seizures started AFTER I got sick and I had documented short term memory loss and a very significant loss of IQ when I was tested, it had NOTHING to do with the Lupus or AI issues. OK. If ya'll say so. I went for the Medusa tests (For those that have had it you understand that reference... real name EEG) and they were all fine. I did however have a small seizures while they were hooking me up but nothing for the 3 days I was on it. When my MRI showed white matter there was a comment by the radiologist that there seemed to be a lack of blood flow at the entrance to the brain on my left side (Interesting since my seizures are all right sided except for the absence seizures of course). Still, no answer as to why I have seizures but I kept being told that there was NO WAY it was Lupus related since I had SCLE Lupus.
I was put on my first seizure med and it did help some. I was put on another, Tegretol, after my first Trigmenial Neuralgia attack and it reduced the seizures even more but they did stop. They added a 3rd that I thought helped but they added it at the same time they upped my steroids to 60mg a day. I had been unable to work since the day the day the ambulance carried me out and while fighting for my disability I had to go to the hospital every time I had a seizure to prove that I was taking my meds correctly. Thankfully, on my 3rd trip, I ended up getting an ER doctor that had Lupus. As I told him my story of not having SLE but having SCLE and seizures that had nothing to do with each other and told him they couldn't see them on the EEG he started to laugh. He said the words I will never forget. "Of course they don't see them on the EEG! Most Lupus seizures are caused by inflammation and lack of blood flow not electrical issues that they are testing for. The only way anyone would see yours would be if you happened to be under an MRI machine when it happened. You dear have had some uninformed doctors and you don't have SCLE you have SLE with CNS issues". I thought back to the MRI comments about the lack of bloodflow and I started to cry. I had searched and searched for answers and by accident I ran into someone who was able to give them to me.
I talked to him about the meds, if I still needed them and he assured me I did. If for no other reason than making sure that the problems I was having and the damage being caused to my brain didn't bring on epileptic type of seizures. He was blunt but I appreciated the answers so much that I was actually thankful for what he said. He said I was one of the unlucky ones. Most Lupus patients don't end up with "brain issues" or CNS Lupus but I have it and it meant that I couldn't play around with mine. I couldn't refuse the 60 mg of steroids taken for long periods because if I am flaring I can be doing damage to my brain not just my joints or other things that I think I can push through on my own. He told me I had to find a good Rhuemy and Neuro who understood what was going on with me so they could get my Lupus under control.
That was 2 years ago and I have not been able to do that. I have been without insurance for over 2 and a half years and my disability doesn't even cover all the meds I take much less doctors. I have been going to my PCP to give me what I need until I can get my medicare which, thank goodness, begins Oct. 1st! Hopefully, I can finally find the doctors that can stop the progress of this disease instead of just helping me not to cope with the symptoms that an almost constant flare causes.
So there you go. There is my seizure story.
My son, who is now 8, has had seizures for two years and had to take meds to prevent them. He doesn't have lupus, but I thought I'd share his story too.
He was sick with what I thought was a cold for about a week in March, when he was just six years old, when his started. They came out of the blue, and were tonic-clonic in nature. He spent almost two months in the hospital/pediatric ward as we tried to find out the reason why, and find meds that would control him. Epilepsy meds, if you aren't on the right ones, are evil... imo. A few of the meds they tried on him made it so he couldn't function, or walk without falling down. He also started hallucinating on some of them.
Since finally finding the magic meds (a mix of trileptal and keppra) he has since returned to himself, and I would say he is at 100%. No seizures for the past year. He gets A+s in school. And loves sports (and despite some bull-in-a-china-closet tendencies, he has his coordination back. I thank God all the time for his miracle recovery, but still knock on wood when I think about how lucky we have been. My heart goes out to anybody who is dealing with epilepsy...
Doctors never did determine a reason for his seizures. He had a sinus infection - that is all that showed on the CT scans and every other test they ran.