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“And another story: "Susan's seizures usually occur while she's asleep. She makes a grunting sound, as if she's clearing her throat. Then she'll sit up in bed, open her eyes, and stare. She may clasp her hands together. If I ask her what she's doing, she doesn't answer. After a minute or so, she lies down and goes back to sleep." Source: sorry can't post an URL yet but this is from an epilepsy site, talking about complex partial seizures.
All my life I have had something wrong with my brain. I have always been cranky and moody and I even think I remember hating this world before I was born and not wanting to come here! I always blamed my problems on my parents who were disturbed alcoholics and no fun to be around. Now (age 66) and observing my entire family over several generations (including children and grandchildren) I think there is something physically/mentally wrong with all of us. Diagnoses have included bipolar, schizophrenia, ADHD and various other things. Most members of the family are intelligent and able to work (sometimes quite successfully) but we are also given to rages, paranoia, mood swings and obsessive interests in sports, politics, etc. (well beyond normal). Many of us also have severe sleep disturbances such as repetitive nightmares, walking/talking in our sleep, poor quality of sleep, etc. This is probably my biggest problem.
I first remember sleeping poorly as a small child. I was petrified of the dark and would wake up thinking "Big Foot" was coming for me. I often dreamed of being chased by monsters or falling down an endless hole in the earth. I still wake up with nightmares almost every night. As I write this, I am awake at 4 a.m. because I kept having the same dream over and over. In this one, some kind of liquid was dissolving holes in the earth. This would wake me up but start again as soon as I dropped back into sleep. Finally, it becomes obvious that the dreams are not going to stop and I wake up.
During the day, I am often anxious but I can cope by staying busy. Now that I am retired, I nerd away on the computer at least 17 hours a day. I have never been able to sit still for any length of time. I am constantly moving, fidgeting, jumping up to get something, getting computer cords tangled and having to untangle them. Anything to keep moving. Boredom makes me crazy and cranky. When I was a kid, I read constantly. Even as an adult, unless I was working 12 hour days, I read at least one (usually more) books a day. I still have a box of books by my bed which I read, switching back and forth, between a dozen books. As you can imagine, this doesn't leave much time for rest but then I really don't rest, anyway. I used to do housework by approaching it frantically (working really hard, really fast, until it was done) but now that I am older I don't seem to be able to do much housework. It is just too boring and boredom makes me nervous and uptight so I run back to my computer to calm down.
All this seems to run in a cycle which is maybe two or three weeks long. I get absolutely frantic, then some kind of fever pitch is reached, I knock myself out with antihistamines to get some sleep, and feel better for a while until it starts all over again, slowly building to another climax.
Once I read in a magazine that people with sleep disturbances like mine often had abnormal brain scans similar to epilepsy. I asked my doctor to give me Dilantin and he did. I took it for months and it was the most peaceful time of my life. Unfortunately, I also slept most of the time and my husband said I was "stupid" (I am usually too smart for my own good) so eventually I quit. I have also tried Tegretol (makes me itchy) and Lamictal (one doctor thought I might be Bipolar and another thought a mild form of Borderline Personality Disorder was possible). The Lamictal helped but I eventually went off it and symptoms didn’t reoccur immediately so I thought I could get by without it.
In all this time, no doctor has ever sent me for any brain scan. The closest was when I was quite overweight (200 lbs) and was tested at a sleep disorder clinic and diagnosed with sleep apnea. I know that I woke up constantly all night, thrashing around and calling out (this was before the home apparatus they test you with now) and the nurses looked at me like I was a giraffe with two heads the next day. Now, I have lost a lot of weight and probably don't have sleep apnea but I still wake up many, many times through the night.
Anyway, yesterday I happened to watch a documentary about Vincent Van Gogh, the painter, who probably had temporal lobe epilepsy. I immediately thought, "That's what I have!" Today, I looked up various forms of epilepsy and the one that comes closest to my problems would be partial seizures (as in the quote above).
During the day, I switch moods constantly but am usually able to keep these moods to myself (if nobody interacts with me). At night, I have much less control. Nobody (including my husband) wants to sleep in the same room with me because I am so noisy and volatile as I act out dreams about violence, burglars, wild animals, etc.. These are much worse, btw, after I listen to hypnosis tapes with an aural beat in them. Or anything that tries to use that sort of technology to put you into deeper sleep. My brain basically has a fit.
I used to, after a bad dream, lie down and go back to sleep in a few minutes. Now, I just get up. I generally sleep about 3 hours a night until I am so exhausted that I knock myself out with antihistamines and sleep for hours. The antihistamines will inhibit the dreaming if I don’t take them often. I also try to nap for a couple of hours during the day to catch up on sleep. More than that, and I start up with the bad dreams.
I would really appreciate hearing what people here think about all this. It's very unlikely I will be able to see a neurologist and even if I can that he will send me for tests. Long story, but I just annoy doctors and always have so it is almost impossible to get one to cooperate. They will, however, give me prescriptions pretty easily. I suppose I should just tell my current doctor that I used to take Dilantin and see what she will prescribe. I’m from rural Canada and there is zero chance of getting an MRI in our system. Even if, the wait would be a year or more. So, really, all I can do is experiment a bit.
Recently, changed my diet and am eating very well (almost all organic) and that seems to help. I am probably sensitive to a lot of chemicals in food. My family is full of allergies but I haven't had many of those, so far as I know.
I've pretty much eliminated Bipolar, Borderline, PTSD, just plain depressed, etc. but still in need answers. I'm essentially a happy person, living a good life, but sometimes these nightmares and daytime edginess makes me wish it was all over and I could rest. I'm ADHD, for sure, but that doesn't explain everything. Thanks in advance for any ideas.
All my life I have had something wrong with my brain. I have always been cranky and moody and I even think I remember hating this world before I was born and not wanting to come here! I always blamed my problems on my parents who were disturbed alcoholics and no fun to be around. Now (age 66) and observing my entire family over several generations (including children and grandchildren) I think there is something physically/mentally wrong with all of us. Diagnoses have included bipolar, schizophrenia, ADHD and various other things. Most members of the family are intelligent and able to work (sometimes quite successfully) but we are also given to rages, paranoia, mood swings and obsessive interests in sports, politics, etc. (well beyond normal). Many of us also have severe sleep disturbances such as repetitive nightmares, walking/talking in our sleep, poor quality of sleep, etc. This is probably my biggest problem.
I first remember sleeping poorly as a small child. I was petrified of the dark and would wake up thinking "Big Foot" was coming for me. I often dreamed of being chased by monsters or falling down an endless hole in the earth. I still wake up with nightmares almost every night. As I write this, I am awake at 4 a.m. because I kept having the same dream over and over. In this one, some kind of liquid was dissolving holes in the earth. This would wake me up but start again as soon as I dropped back into sleep. Finally, it becomes obvious that the dreams are not going to stop and I wake up.
During the day, I am often anxious but I can cope by staying busy. Now that I am retired, I nerd away on the computer at least 17 hours a day. I have never been able to sit still for any length of time. I am constantly moving, fidgeting, jumping up to get something, getting computer cords tangled and having to untangle them. Anything to keep moving. Boredom makes me crazy and cranky. When I was a kid, I read constantly. Even as an adult, unless I was working 12 hour days, I read at least one (usually more) books a day. I still have a box of books by my bed which I read, switching back and forth, between a dozen books. As you can imagine, this doesn't leave much time for rest but then I really don't rest, anyway. I used to do housework by approaching it frantically (working really hard, really fast, until it was done) but now that I am older I don't seem to be able to do much housework. It is just too boring and boredom makes me nervous and uptight so I run back to my computer to calm down.
All this seems to run in a cycle which is maybe two or three weeks long. I get absolutely frantic, then some kind of fever pitch is reached, I knock myself out with antihistamines to get some sleep, and feel better for a while until it starts all over again, slowly building to another climax.
Once I read in a magazine that people with sleep disturbances like mine often had abnormal brain scans similar to epilepsy. I asked my doctor to give me Dilantin and he did. I took it for months and it was the most peaceful time of my life. Unfortunately, I also slept most of the time and my husband said I was "stupid" (I am usually too smart for my own good) so eventually I quit. I have also tried Tegretol (makes me itchy) and Lamictal (one doctor thought I might be Bipolar and another thought a mild form of Borderline Personality Disorder was possible). The Lamictal helped but I eventually went off it and symptoms didn’t reoccur immediately so I thought I could get by without it.
In all this time, no doctor has ever sent me for any brain scan. The closest was when I was quite overweight (200 lbs) and was tested at a sleep disorder clinic and diagnosed with sleep apnea. I know that I woke up constantly all night, thrashing around and calling out (this was before the home apparatus they test you with now) and the nurses looked at me like I was a giraffe with two heads the next day. Now, I have lost a lot of weight and probably don't have sleep apnea but I still wake up many, many times through the night.
Anyway, yesterday I happened to watch a documentary about Vincent Van Gogh, the painter, who probably had temporal lobe epilepsy. I immediately thought, "That's what I have!" Today, I looked up various forms of epilepsy and the one that comes closest to my problems would be partial seizures (as in the quote above).
During the day, I switch moods constantly but am usually able to keep these moods to myself (if nobody interacts with me). At night, I have much less control. Nobody (including my husband) wants to sleep in the same room with me because I am so noisy and volatile as I act out dreams about violence, burglars, wild animals, etc.. These are much worse, btw, after I listen to hypnosis tapes with an aural beat in them. Or anything that tries to use that sort of technology to put you into deeper sleep. My brain basically has a fit.
I used to, after a bad dream, lie down and go back to sleep in a few minutes. Now, I just get up. I generally sleep about 3 hours a night until I am so exhausted that I knock myself out with antihistamines and sleep for hours. The antihistamines will inhibit the dreaming if I don’t take them often. I also try to nap for a couple of hours during the day to catch up on sleep. More than that, and I start up with the bad dreams.
I would really appreciate hearing what people here think about all this. It's very unlikely I will be able to see a neurologist and even if I can that he will send me for tests. Long story, but I just annoy doctors and always have so it is almost impossible to get one to cooperate. They will, however, give me prescriptions pretty easily. I suppose I should just tell my current doctor that I used to take Dilantin and see what she will prescribe. I’m from rural Canada and there is zero chance of getting an MRI in our system. Even if, the wait would be a year or more. So, really, all I can do is experiment a bit.
Recently, changed my diet and am eating very well (almost all organic) and that seems to help. I am probably sensitive to a lot of chemicals in food. My family is full of allergies but I haven't had many of those, so far as I know.
I've pretty much eliminated Bipolar, Borderline, PTSD, just plain depressed, etc. but still in need answers. I'm essentially a happy person, living a good life, but sometimes these nightmares and daytime edginess makes me wish it was all over and I could rest. I'm ADHD, for sure, but that doesn't explain everything. Thanks in advance for any ideas.