horsehead
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Aww money I wish we all had that.
[Research] Oh no -- here comes the sun
- Thread starter occb
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Welcome to the Coping With Epilepsy Forums
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Aww money I wish we all had that.
occb
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Tuesday, April 6, 2010
lamotrigine 300
effexor 150
taken ??
I woke to his body jerking rhytmically for a few seconds, which repeated after about 5 minutes. I don't know how long that was going on for. Just before I got out of bed, he had shudders which traveled from his shoulder through his abdomen into his leg (a little later he laughed a joyless laugh). I asked him when he woke up if he noticed them, and he said they woke him up earlier in the night, but didn't notice them first thing in the morning like I did. I just told him it was really powerful, like a jackhammer, and he just stared at me for moment and said that word brought up a lot of memories -- his ex used to describe his sleep the same way. This was long before AEDs, or back injury.
He was in the bathroom for about 5 minutes and came out and asked how long he was in there. He had spaced out and he thought he'd been in there for an hour and was wondering why he was in there *time warp*
Anyway, he was in a good mood again this morning. Chatty and complaining that I was online again. That's my sweetpea!
lamotrigine 300
effexor 150
taken ??
I woke to his body jerking rhytmically for a few seconds, which repeated after about 5 minutes. I don't know how long that was going on for. Just before I got out of bed, he had shudders which traveled from his shoulder through his abdomen into his leg (a little later he laughed a joyless laugh). I asked him when he woke up if he noticed them, and he said they woke him up earlier in the night, but didn't notice them first thing in the morning like I did. I just told him it was really powerful, like a jackhammer, and he just stared at me for moment and said that word brought up a lot of memories -- his ex used to describe his sleep the same way. This was long before AEDs, or back injury.
He was in the bathroom for about 5 minutes and came out and asked how long he was in there. He had spaced out and he thought he'd been in there for an hour and was wondering why he was in there *time warp*
Anyway, he was in a good mood again this morning. Chatty and complaining that I was online again. That's my sweetpea!
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occb
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Partner didn't want to talk about his day last night, so I don't know what happened yesterday. I know he had very bad abdominal pain all day. Maybe the persistent pain is due to his back? Like what's going on with his right leg... it's been tingly and feeling cold for two days (but it's no colder to the touch than his other foot is, so it's not a lack of blood flow). We're thinking the night-time jerking may be exacerbating his injury and causing more nerve pain down his leg.
Hopefully he'll come onto CWE again today and add info. I'll keep my fingers crossed for that.
Hopefully he'll come onto CWE again today and add info. I'll keep my fingers crossed for that.
occb
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Leftovers from yesterday:
Took meds at 9am
Abdominal pain all day -- was in his midsection, then moved ot the right.
I know he jerked a little when he was asleep, but I can't recall what or how much. It wasn't the jackhammering though.
Wednesday, April 7, 2010
lamotrigine 300
effexor 150
taken 11:30
Bad day today. Woke up with depression which lasted most of the day. A lot of staring spells all monring. Had his eyes cross on him at the end of a staring spell, which lasted a few seconds.
Mild headache and the neck/shiver and neck pain all day. So far that's it.
He was chatty and happy when I came home, and still is now.
Thursday, April 8, 2010
lamotrigine 300
effexor 150
taken --
He twitched a little when he fell asleep, but the real stuff started about 4 am. I woke up to him punching the wall twice(I guess it was both punches and kicks. When I had asked him if he had pucnhed the wall, he answered in that sleepy voice which means he was confused when I spoke to him) -- he was having shoulder and abdominal jerks, both synchronous and rhythmic and arhythmic. His left arm would jerk and sometimes shoot straight out. His legs would jerk and bicycle and straighten. And then sometimes he would just writhe. It's like his brain went haywire last night. There was not pattern last night, everything was mish-mashed together. He was very tired but awake during it.
We talked about it, and he remembers at one point that his legs came together, as if magnetized, and he did the bicycle peddaling motin with both of them together. He also said the jerking woke him up three times, and each time he woke up very confused. He said this was the first time he's had the bike pedalling when he's been awake. He sees his GP on Monday -- hopefully we can get the meds adjusted properly? That may be hoping too much.
Just before wake-up, he had more patterened sleep, rubbing his feet together, scratching and then shoulder jerks.
He slept all day today. Missed his meds.
Took meds at 9am
Abdominal pain all day -- was in his midsection, then moved ot the right.
I know he jerked a little when he was asleep, but I can't recall what or how much. It wasn't the jackhammering though.
Wednesday, April 7, 2010
lamotrigine 300
effexor 150
taken 11:30
Bad day today. Woke up with depression which lasted most of the day. A lot of staring spells all monring. Had his eyes cross on him at the end of a staring spell, which lasted a few seconds.
Mild headache and the neck/shiver and neck pain all day. So far that's it.
He was chatty and happy when I came home, and still is now.
Thursday, April 8, 2010
lamotrigine 300
effexor 150
taken --
He twitched a little when he fell asleep, but the real stuff started about 4 am. I woke up to him punching the wall twice(I guess it was both punches and kicks. When I had asked him if he had pucnhed the wall, he answered in that sleepy voice which means he was confused when I spoke to him) -- he was having shoulder and abdominal jerks, both synchronous and rhythmic and arhythmic. His left arm would jerk and sometimes shoot straight out. His legs would jerk and bicycle and straighten. And then sometimes he would just writhe. It's like his brain went haywire last night. There was not pattern last night, everything was mish-mashed together. He was very tired but awake during it.
We talked about it, and he remembers at one point that his legs came together, as if magnetized, and he did the bicycle peddaling motin with both of them together. He also said the jerking woke him up three times, and each time he woke up very confused. He said this was the first time he's had the bike pedalling when he's been awake. He sees his GP on Monday -- hopefully we can get the meds adjusted properly? That may be hoping too much.
Just before wake-up, he had more patterened sleep, rubbing his feet together, scratching and then shoulder jerks.
He slept all day today. Missed his meds.
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occb
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Friday, April 9, 2010
lamotrigine 300
effexor 150
taken ??
He was up until 4am, because he slept all day yeasterday. I woke up just before six to his shoulder, abdomen and legs jerking -- they weren't big jerks like the other night, and they weren't rhythmic or patternistic, so far as I can remember. I was really sleepy.
He also did the gropy hand thing in his sleep. He lies on his side and has his hand slightly behind him underneath, and when he gets the twitches, he gets them in his fingers and they make groping or scratching movements. I dreamt that some strange man was groping me through a window, and I woke up to him groping me in his sleep :lol:
lamotrigine 300
effexor 150
taken ??
He was up until 4am, because he slept all day yeasterday. I woke up just before six to his shoulder, abdomen and legs jerking -- they weren't big jerks like the other night, and they weren't rhythmic or patternistic, so far as I can remember. I was really sleepy.
He also did the gropy hand thing in his sleep. He lies on his side and has his hand slightly behind him underneath, and when he gets the twitches, he gets them in his fingers and they make groping or scratching movements. I dreamt that some strange man was groping me through a window, and I woke up to him groping me in his sleep :lol:
occb
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Friday, April 9, 2010
lamotrigine 300
effexor 150
taken 9 am
He was up until 4am, because he slept all day yeasterday. I woke up just before six to his shoulder, abdomen and legs jerking -- they weren't big jerks like the other night, and they weren't rhythmic or patternistic, so far as I can remember. I was really sleepy.
He also did the gropy hand thing in his sleep. He lies on his side and has his hand slightly behind him underneath, and when he gets the twitches, he gets them in his fingers and they make groping or scratching movements. I dreamt that some strange man was groping me through a window, and I woke up to him groping me in his sleep :lol:
During the day had some space outs and some abdominal pain. No nausea lately, yay. Every time he tried to nap, his feet would clamp together followed by bicycling together.
Evening an hour of right eye blurred vision.
When he went to sleep at night, his body went batty again. His legs would clamp and jump and bicycle and straighten and his shoulder would spasm. Sometimes his legs would jump, and the his abdomen would jerk, and his shoulder, and at the same time as the shoulder, his face and fingers would twitch forcefully. For some of it he was awake and aware, and for some of it, the stuff that made his face and fingers twitch, he was totally unconscious, from one moment to the next.
Side note -- when partner's twitchy before sleep he often tells me to "get ready for Hammer time!" Last night he exclaimed delightedly "I krump in my sleep!"
lamotrigine 300
effexor 150
taken 9 am
He was up until 4am, because he slept all day yeasterday. I woke up just before six to his shoulder, abdomen and legs jerking -- they weren't big jerks like the other night, and they weren't rhythmic or patternistic, so far as I can remember. I was really sleepy.
He also did the gropy hand thing in his sleep. He lies on his side and has his hand slightly behind him underneath, and when he gets the twitches, he gets them in his fingers and they make groping or scratching movements. I dreamt that some strange man was groping me through a window, and I woke up to him groping me in his sleep :lol:
During the day had some space outs and some abdominal pain. No nausea lately, yay. Every time he tried to nap, his feet would clamp together followed by bicycling together.
Evening an hour of right eye blurred vision.
When he went to sleep at night, his body went batty again. His legs would clamp and jump and bicycle and straighten and his shoulder would spasm. Sometimes his legs would jump, and the his abdomen would jerk, and his shoulder, and at the same time as the shoulder, his face and fingers would twitch forcefully. For some of it he was awake and aware, and for some of it, the stuff that made his face and fingers twitch, he was totally unconscious, from one moment to the next.
Side note -- when partner's twitchy before sleep he often tells me to "get ready for Hammer time!" Last night he exclaimed delightedly "I krump in my sleep!"
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Inaara
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I had the blurry eye thing for three years after my firstaccident. Only in one eye though. Topiramate didn't do jack for it but since I've been on the tegretol it's pretty mcuh cleared up. Now I only get it on the really, REALLY bad days. definitely worth bringing up with the docs, though if they're anything like mine they probably won't think much of it. :/
occb
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Tegretol, eh? We may have to head that route. I've read it's particularly effective for certain kinds of seizures. As for docs not taking it seriously -- that wouldn't surprise me one bit.
Do you mind me asking where your TBI is located? Is some of it frontal lobe?
Do you mind me asking where your TBI is located? Is some of it frontal lobe?
occb
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Saturday, April 10, 2010
lamotrigine 300
effexor 150
taken 10:45 am
Twitchies first thing (on the previous day's entry)
Some space-outs and abdominla pain and nausea, but all-in-all a good day.
Some twitching going to sleep, but we didn't notice anything big.
Sunday, April 11, 2010
lamotrigine 300
effexor 150
taken 11:40 am
Morning was okay, but starting later in the afternoon (3-4) sudden rage and swearing at the same time as dizziness and nausea, followed by kaleidascopic colours in his right eye (lasting 30s) followed by crippling abdominal pain. These kept coming back and disappearing over the course of an hour and a half.
Three major episodes of toppling over during the day. He'll be standing still, with good balance, and just start stumbling backwards for about 9 feet to recapture his sudden loss of uprightness.
This evening 8-9 sudden rage and swearing with sudden burning garbage smell (5 bouts of this within 10 minutes) followed by nausea and extreme dizziness. Followed by 30 minutes waves of residual smell and rage.
lamotrigine 300
effexor 150
taken 10:45 am
Twitchies first thing (on the previous day's entry)
Some space-outs and abdominla pain and nausea, but all-in-all a good day.
Some twitching going to sleep, but we didn't notice anything big.
Sunday, April 11, 2010
lamotrigine 300
effexor 150
taken 11:40 am
Morning was okay, but starting later in the afternoon (3-4) sudden rage and swearing at the same time as dizziness and nausea, followed by kaleidascopic colours in his right eye (lasting 30s) followed by crippling abdominal pain. These kept coming back and disappearing over the course of an hour and a half.
Three major episodes of toppling over during the day. He'll be standing still, with good balance, and just start stumbling backwards for about 9 feet to recapture his sudden loss of uprightness.
This evening 8-9 sudden rage and swearing with sudden burning garbage smell (5 bouts of this within 10 minutes) followed by nausea and extreme dizziness. Followed by 30 minutes waves of residual smell and rage.
occb
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For those who don't know, my partner is nightfighter, so I may refer to NF/nightfighter instead of partner.
NF sees lazydoc today as a follow-up to the psych assessment to see that he refers him to the chronic pain clinic and the epilepsy clinic. I told him to tell lazydoc that his wife insists on the E clinic because she doesn't like the other neuro, because he didn't listen. I also told him to tell lazydoc that wifey is nagging about med changes too. Let's hope lazydoc sympathizes with NF's issues with naggy wife, and does exactly what I want.
NF sees lazydoc today as a follow-up to the psych assessment to see that he refers him to the chronic pain clinic and the epilepsy clinic. I told him to tell lazydoc that his wife insists on the E clinic because she doesn't like the other neuro, because he didn't listen. I also told him to tell lazydoc that wifey is nagging about med changes too. Let's hope lazydoc sympathizes with NF's issues with naggy wife, and does exactly what I want.
occb
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Monday, April 12, 2010
lamotrigine 300
effexor 150
taken 10 am
Twitchy falling alseep and in the morning. At one point his legs lifted right off the bed and slammed down. Bicycling with both legs.
Space outs first thing, nothing too bad.
From 11-1 (approximately) perception problems -- several bouts of objects seeming far away and small. Sometimes objects were too close and too big. He says he gets this on-and-off and has since childhood *sigh* and yet the doctor still doesn't want to believe he's having seizures.
Sudden exhaustion and right hand abdominal pain starting (all mild today) happening around 3pm. Nothing so far since I've been home (5:30)
lamotrigine 300
effexor 150
taken 10 am
Twitchy falling alseep and in the morning. At one point his legs lifted right off the bed and slammed down. Bicycling with both legs.
Space outs first thing, nothing too bad.
From 11-1 (approximately) perception problems -- several bouts of objects seeming far away and small. Sometimes objects were too close and too big. He says he gets this on-and-off and has since childhood *sigh* and yet the doctor still doesn't want to believe he's having seizures.
Sudden exhaustion and right hand abdominal pain starting (all mild today) happening around 3pm. Nothing so far since I've been home (5:30)
occb
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Update on the lazydoc visit -- despite him having a copy of nightfighter's seizure diary, despite a team of p-docs saying he's experiencing seizures, lazydoc still refuses to believe nightfighter is experiencing seizures. Huh? How does that work?
At least he's agreed to lower the Effexor, but waaaaaayyyyyyy faster than recommended, like it's nothing to stop it after a decade on it *shakes head* We're going to take it at our own pace.
Next step -- give the neurologist a copy of the seizure diary and request a follow-up with more tests. We'll see how that goes.
At least he's agreed to lower the Effexor, but waaaaaayyyyyyy faster than recommended, like it's nothing to stop it after a decade on it *shakes head* We're going to take it at our own pace.
Next step -- give the neurologist a copy of the seizure diary and request a follow-up with more tests. We'll see how that goes.