I know that many here have reported having seizures caused by Lyme. But has anyone had them caught on an EEG?
If so, what kind of seizures are they --focal seizures in a particular area of the brain, or are they grand mal (generalized)?
So you take anti-seizure meds for this? If so, what meds?
Pooch
Posted by hiker53 (Member # 6046) on :
I have an abnormal EEG, but it didn't match the seizures. My seizures are termed myoclonic and come from the brainstem. I take Keppra and clonazepam(Klonopin) and most of the time am seizure free. Stress and fatigue increase them, though.
Posted by lou (Member # 81) on :
I had a couple of petit mal seizures, not lately with treatment though. My EEG at the time was abnormal "due to intermittent sharp and slow activity seen from the left posterior temporal region suggestive of an underlying convulsive disorder."
I agree that it would be difficult to catch one of these in the act, unless they were very frequent and you had those gizmos attached for quite a while!
Posted by orion (Member # 3858) on :
We caught one of our daughter's partial seizures on videotape. Prior to seeing that the duck we see didn't *really* believe us when we reported them. It sobered him up. orion
Posted by SunRa (Member # 3559) on :
My first EEG showed frontal lobe seizures (or temporal lobe..whoops, cant remember right now) suggestive of a seizure disorder.
I dont have grand mal ones and no loss of muscle control or spasms. No one really notices them but me as i'm conscious and aware of my surroundings. But I certainly feel them in my brain and theyre terrifying.
I recently had a 48 hour ambulatory EEG...was hooked up and sent home to go about usual day. That came back "essentially" normal, however, the equipment malfunctioned so they did not get an accurate reading and suggested re-doing the test which I havent done.
I'm currently on Trileptal, but being slowly weaned off because it caused my sodium levels to drop.
Posted by ArtistDi (Member # 2297) on :
I had an EEG in July, which suggested seizure activity. After speaking with my neurologist, he didn't feel that they were "true seizures," although he admits that lyme or something is irritating the brain.
This is the temporal lobe type, I believe, and I am on Clonzepam (Klonopin). I have developed myoclonic activity, which is worse when I lie down or try to fall asleep.
Posted by lymelady (Member # 6207) on :
Hi, During 15-doctor route I took before diagnosis, my EEG was abnormal (spikes in left temporal lobe he said, epilepsy, he said. Put me on Depakote, which made me sick as a dog and dizzier than ever.
I called to report bad result and he put me on phenobarbitol, which almost put me in a coma. Called to report bad result, he was annoyed. The old song and dance doctors do when you don't respond to their diagnosis.
We parted ways at that point. It boggles the brain how little docs know or care to know about lyme disease.
Regards, Frances
Posted by Poochini (Member # 3534) on :
Thanks for all the replies. I think it is interesting that people do have abnormal EEGs with Lyme. It may be a clinical sign and evidence that needs more attention.
Perhaps if it were better documented that Lyme causes focal damage and hence focal seizures then others would take it more seriously. "Lyme weirdness" is not an adequate descriptor.
I await my ambulatory EEG results. They're in but I am away from home and will have to meet with the neurologist later.
Posted by lil' angel (Member # 6208) on :
quote:Originally posted by Poochini: Thanks for all the replies. I think it is interesting that people do have abnormal EEGs with Lyme. It may be a clinical sign and evidence that needs more attention.
Perhaps if it were better documented that Lyme causes focal damage and hence focal seizures then others would take it more seriously. "Lyme weirdness" is not an adequate descriptor.
I await my ambulatory EEG results. They're in but I am away from home and will have to meet with the neurologist later.
Hello, it has been a long time since i have been on here but, i thought you should know that they finally caught my daughters seizures on video and she has strokes, grand males,petite males, complex partials, the list goes on.. I know this is a old topic, but I have not had acess to any computers.. other than my cell phone. With that I could not get to the site..My daughter is 14 yrs. old this night mare of LYME started when she was 9. Infact we were back east for duck appt, and now since then it's odd no one talks to me?? Anyway I went threw hell with the hospital and now she is getting the right treatment. They have her on KEPPRA 500mg =2 pills 3X@day, and added other meds to her and she is starting to come out of it, other than having strokes still now & again and heart attacks.. and Heart Palps. Other than that she is finally getting the right care. So just keep fighting the good fight, and even if people give up on you and turn their back push on, it is worth it.. IT REALLY IS< BECAUSE YOU ARE THE ONLY ONE WHO CAN MAKE YOUR HEALTH BETTER. I AM STILL FIGHTING AND I THOUGHT I HAD FRIENDS, WELL I DIDN'T IT WAS ONLY A MOMENT OF SOME KIND OF KINDNESS, AFTER THAT..... NOTHING. SO DON'T THINK IT IS ALL IN YOUR HEAD, IT ISN'T IT IS REALLY HAPPENING, TO ALOT MORE PEOPLE THAN WE KNOW OF GOD BLESS AND HOPE THE BEST FOR YOU AND YOUR FAMILY!
Posted by paulscha (Member # 6334) on :
Like another commenter, I have seizures and an abnormal EEG, but they don't match.
I'm taking Gabatril for seizures now, have just increased dosage, and will report back when I have a sense if it's helping.
My EEG showed 'remarkable diffused slowing, consistent with patient's reported symptoms and performance under neurocognitive testing'.
My neurologist had a very hard time beleiving the EEG technician, who insisted that I was extremely alert before, during and after the test.
I had frequent petit mals for the first year I was sick. Myoclonic seizures, where I remain conscious but am unable to control limbs, are now more prevalent, and really are taking off on antibiotics.