I am having trouble getting an accurate diagnosis and would appreciate any thoughts you might have to share. I know this post is long, but I wanted to include whatever info might be helpful. Please feel free to skim or skip it.
My seizures (for lack of a better term) last 30-75 min, but subside within about 20 min when I take Ativan . Sx include slurred/stuttering speech and eventually the inability to form words even thpugh i know what i want to say. I have never lost consciousness, but it becomes hard to focus or concentrate. My right hand/forearm shakes, sort of like it would if one were trying to shake down an old mercury thermometer. Sometimes my other hand starts in after a few minutes. At first, i can control the shaking with a lot of effort, but not for long. I may have visual or auditory Sx, too, but not the past few times.
Does anyone else have the experience of having some control over the muscle stuff for awhile, then losing that control? Seizures that last that long?
I will have periods of time (a few hours) when I feel like the seizures may happen, sort of like a migraine aura. I'm more likely to experience brief jamais vu and or unilateral high pitched noise in one ear for a few seconds during these times and may or may not have a migraine. The seizures don't always occur when i feel that way, but they never occur when im not feeling that way. Have others had similar experiences?
My seizures happen off and on for weeks, then remit for YEARS, thank goodness! The first batch happened a few months postpartum with my first child and continued off an on for seceral months that summer. I also had one a few hours after delivering my second child. This time, they started shortly after i started taking homrone replacement therapy w estradiol and a progestin. The seizures tend to happen correlate with hormonal shifts (eg these started up shortly after I started HRT for perimenopause), and I think they are much more likely to happen in the summer.
I have had migraines off and on throuhough adulthood. They seem to vary with my menstrual cycle, becoming more likely mid-cycle, premenstrually, and during the first couple days of my period. We have a strong family history of migraines and one of my cousins has benign rolandic epilepsy, all on my Dad's side. My mom had Huntington's disease and my Dad's father had Parkinson's disease and strokes.
I have seen 3 or 4 neurologists during the past decade to try to figure out what is happening. MRI's reveal a pineal cyst and periventricular t2 hyperintensity consistent with decreased white matter. My current neurologist did an inpt eeg 5 yrs ago, but I didn't have any episodes, and they didn't see any abnormalities. Not much useful info there.
At that time, the doc said he wanted to see me annually, and also if the seizures (for want of a better term) started happening again. I have followed that. When I came in this time after calling BC the seizures had started again, the doc's attitude had shifted subtlety. He said he doesn't know what is happening, but listed depression and psychogenic confusion on the diagnostic sheet. I'm not depressed: I have been clinically depressed in the past, and am quite familiar with what it is like. I'm so fortunate that I'm NOT depressed right now. I was depressed before starting hormone replacement therapy for perimenopausal night sweats and depression a few months ago, but now, emotionally, am fine. And the only confusion I experience, which i shared with him, is brief episodes of jamais vu (seconds, I would guess). He did not think it was important to check my lamictal level and didn't really think it would help to change the klonopin. He offered to get a blood level on the lamictal, but when the lab lost the sample, he didnt think it was important to redraw it. He suggested I might try graduated exposure to the kinds of stimuli (repetitive electronic noises like fire or car alarms or children's electronic musical toys). Tis would NOT be helpful. During those times when I'm prone to the seizures, the more I'm exposed to triggers (e.g. Flickering fluorescent light or the kinds of noises I described) the less exposure it takes to prompt a seizure. I do exposure and response prevention with my patients to help with anxiety disorders, so I'm quite familiar with the conxept and it's uses. I just don't think this is one! He also offered to do another inpatient video EEG in a couple of months. At this point I do not want to do that, partly BC I feel like he has made up his mind that these are psychogenic, and partly BC there's no point taking time off from my work and away from my children/husband when the seizures will (hopefully) have remitted by then. I would be more willing to do it with a different team of doctors if I felt like they were genuinely curious about really digging to find out what might be happening neurologically.
Eifht years ago, when these first started, a wonderful neurologist did an ambulatory outpt 24 hr EEG and i had episodes during that time, but the EEG didnt show seizure activity (read by a computer program, I think). My neurologist and I were both stunned. That neurologist has since left to do research, which is sad for me, because he was respectful and curious and nonjudgmental.
If you have had normal EEG's, but later learneg your episodes had a distinct physical cause (e.g. epilepsy, atypical migraine, ms) it would be so helpful to learn about your experience. From reading a bit, it sounds like others have had similar experiences with normal EEG's, but continued symptoms. I have heard mention of seizures which originate deep enough in the brain that scalp electrodes do not capture them. Also, a couple of people here have mentioned FLE. Is it possible that that would not show up on an output EEG?
If anyone knows of a neurologist in the md/dc area who might be willing to take a "curious" approach (rather than the I dont know so it's psychogenic . . .), that would be so helpful. I'm scared and feel like I have to figure out what is happening. I'm not set on a diagnosis of seizures/epilepsy by any means. Maybe this is atypical migraines, as one soc speculated, or something else. I do see a psychiatrist for mood problems. He has seen the seizures, and he and I are both sure something is happening neurologically. The episodes are not something I'm imagining or making up. I'm scheduled w a new neurologist next week, but, given a couple of unhelpful experiences with top academic neurologist's, I'm very, very cautious and not too hopeful.
Thank you for reading this and for any thoughts you may have to share-
My seizures (for lack of a better term) last 30-75 min, but subside within about 20 min when I take Ativan . Sx include slurred/stuttering speech and eventually the inability to form words even thpugh i know what i want to say. I have never lost consciousness, but it becomes hard to focus or concentrate. My right hand/forearm shakes, sort of like it would if one were trying to shake down an old mercury thermometer. Sometimes my other hand starts in after a few minutes. At first, i can control the shaking with a lot of effort, but not for long. I may have visual or auditory Sx, too, but not the past few times.
Does anyone else have the experience of having some control over the muscle stuff for awhile, then losing that control? Seizures that last that long?
I will have periods of time (a few hours) when I feel like the seizures may happen, sort of like a migraine aura. I'm more likely to experience brief jamais vu and or unilateral high pitched noise in one ear for a few seconds during these times and may or may not have a migraine. The seizures don't always occur when i feel that way, but they never occur when im not feeling that way. Have others had similar experiences?
My seizures happen off and on for weeks, then remit for YEARS, thank goodness! The first batch happened a few months postpartum with my first child and continued off an on for seceral months that summer. I also had one a few hours after delivering my second child. This time, they started shortly after i started taking homrone replacement therapy w estradiol and a progestin. The seizures tend to happen correlate with hormonal shifts (eg these started up shortly after I started HRT for perimenopause), and I think they are much more likely to happen in the summer.
I have had migraines off and on throuhough adulthood. They seem to vary with my menstrual cycle, becoming more likely mid-cycle, premenstrually, and during the first couple days of my period. We have a strong family history of migraines and one of my cousins has benign rolandic epilepsy, all on my Dad's side. My mom had Huntington's disease and my Dad's father had Parkinson's disease and strokes.
I have seen 3 or 4 neurologists during the past decade to try to figure out what is happening. MRI's reveal a pineal cyst and periventricular t2 hyperintensity consistent with decreased white matter. My current neurologist did an inpt eeg 5 yrs ago, but I didn't have any episodes, and they didn't see any abnormalities. Not much useful info there.
At that time, the doc said he wanted to see me annually, and also if the seizures (for want of a better term) started happening again. I have followed that. When I came in this time after calling BC the seizures had started again, the doc's attitude had shifted subtlety. He said he doesn't know what is happening, but listed depression and psychogenic confusion on the diagnostic sheet. I'm not depressed: I have been clinically depressed in the past, and am quite familiar with what it is like. I'm so fortunate that I'm NOT depressed right now. I was depressed before starting hormone replacement therapy for perimenopausal night sweats and depression a few months ago, but now, emotionally, am fine. And the only confusion I experience, which i shared with him, is brief episodes of jamais vu (seconds, I would guess). He did not think it was important to check my lamictal level and didn't really think it would help to change the klonopin. He offered to get a blood level on the lamictal, but when the lab lost the sample, he didnt think it was important to redraw it. He suggested I might try graduated exposure to the kinds of stimuli (repetitive electronic noises like fire or car alarms or children's electronic musical toys). Tis would NOT be helpful. During those times when I'm prone to the seizures, the more I'm exposed to triggers (e.g. Flickering fluorescent light or the kinds of noises I described) the less exposure it takes to prompt a seizure. I do exposure and response prevention with my patients to help with anxiety disorders, so I'm quite familiar with the conxept and it's uses. I just don't think this is one! He also offered to do another inpatient video EEG in a couple of months. At this point I do not want to do that, partly BC I feel like he has made up his mind that these are psychogenic, and partly BC there's no point taking time off from my work and away from my children/husband when the seizures will (hopefully) have remitted by then. I would be more willing to do it with a different team of doctors if I felt like they were genuinely curious about really digging to find out what might be happening neurologically.
Eifht years ago, when these first started, a wonderful neurologist did an ambulatory outpt 24 hr EEG and i had episodes during that time, but the EEG didnt show seizure activity (read by a computer program, I think). My neurologist and I were both stunned. That neurologist has since left to do research, which is sad for me, because he was respectful and curious and nonjudgmental.
If you have had normal EEG's, but later learneg your episodes had a distinct physical cause (e.g. epilepsy, atypical migraine, ms) it would be so helpful to learn about your experience. From reading a bit, it sounds like others have had similar experiences with normal EEG's, but continued symptoms. I have heard mention of seizures which originate deep enough in the brain that scalp electrodes do not capture them. Also, a couple of people here have mentioned FLE. Is it possible that that would not show up on an output EEG?
If anyone knows of a neurologist in the md/dc area who might be willing to take a "curious" approach (rather than the I dont know so it's psychogenic . . .), that would be so helpful. I'm scared and feel like I have to figure out what is happening. I'm not set on a diagnosis of seizures/epilepsy by any means. Maybe this is atypical migraines, as one soc speculated, or something else. I do see a psychiatrist for mood problems. He has seen the seizures, and he and I are both sure something is happening neurologically. The episodes are not something I'm imagining or making up. I'm scheduled w a new neurologist next week, but, given a couple of unhelpful experiences with top academic neurologist's, I'm very, very cautious and not too hopeful.
Thank you for reading this and for any thoughts you may have to share-
