epileric
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Sounds like my mom, except my brother recognized the situation. I wonder if that's connected to the seizures or the AED side-effects somehow.
onder:
[Research] Oh no -- here comes the sun
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Sounds like my mom, except my brother recognized the situation. I wonder if that's connected to the seizures or the AED side-effects somehow.
onder:
epileric
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Right now I'm only on Tegretol but a dose higher than the recommended amount since it's the only thing that works on me, even partially.
As a kid I was on Mysoline, Dilantin and Valproic Acid all at the same time. Eventually a neurologist switched the Dilantin to Tegretol & in my late 20's another neurologist took me off everything but doubled the tegretol dose.
As a kid I was on Mysoline, Dilantin and Valproic Acid all at the same time. Eventually a neurologist switched the Dilantin to Tegretol & in my late 20's another neurologist took me off everything but doubled the tegretol dose.
occb
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Monday, March 29, 2010
Lamotrigine 300 mg
Effexor XR 150 mg
Xanax --
taken 8:30
He was hard to wake up this morning and moody -- swinging from anger to calm. Almost forgot -- I saw his stare off twice in the morning. Seemed to lose awareness for one, but heard me but unable to respond with the other.
He doesn't recall having any specific seizures while at the assessment (which, apparently had 5 people in on it -- 2 docs in the room and 3 behind the mirror... meanwhile severe schizophrenics are still waiting for an assessment and help...wasted taxpayers dollars because the GP thinks partner's crazy), or after the assement, but this evening he's been moody. Nothing severe, just the usual, but it's nice to be able to say he's got a clean psychiatric bill of health.
He doesn't see it as a win right now, because he still doesn't believe he'll get the help he needs, but we'll get there together. I haven't had the ream of disappointments with the medical profession as he has, so I can still see hope where he doesn't. I keepr eminding him the difference between then and now is me. I'm there, I will help him get where he needs to be.
At night he had what we're calling a midsection clench -- he says it feel like someone pushing him in the back, and, frankly, he looks like someone's pushing him in the back. His bum and abdomen clench, and he half stragihtens out during it. His hand were between his knees, facinh palm to plam... so maybe it's better to say it looked almost like if someone was bent at the knee trying to lift a heavy weight (only lying on his side in bed). It was preceded by him rubbing his feet together. Each episode lasted around 5s and repeated every 10-20s for just over an hour.
Had a crushing headache for last half of day -- so did I. Caffeine withdrawal.
Lamotrigine 300 mg
Effexor XR 150 mg
Xanax --
taken 8:30
He was hard to wake up this morning and moody -- swinging from anger to calm. Almost forgot -- I saw his stare off twice in the morning. Seemed to lose awareness for one, but heard me but unable to respond with the other.
He doesn't recall having any specific seizures while at the assessment (which, apparently had 5 people in on it -- 2 docs in the room and 3 behind the mirror... meanwhile severe schizophrenics are still waiting for an assessment and help...wasted taxpayers dollars because the GP thinks partner's crazy), or after the assement, but this evening he's been moody. Nothing severe, just the usual, but it's nice to be able to say he's got a clean psychiatric bill of health.
He doesn't see it as a win right now, because he still doesn't believe he'll get the help he needs, but we'll get there together. I haven't had the ream of disappointments with the medical profession as he has, so I can still see hope where he doesn't. I keepr eminding him the difference between then and now is me. I'm there, I will help him get where he needs to be.
At night he had what we're calling a midsection clench -- he says it feel like someone pushing him in the back, and, frankly, he looks like someone's pushing him in the back. His bum and abdomen clench, and he half stragihtens out during it. His hand were between his knees, facinh palm to plam... so maybe it's better to say it looked almost like if someone was bent at the knee trying to lift a heavy weight (only lying on his side in bed). It was preceded by him rubbing his feet together. Each episode lasted around 5s and repeated every 10-20s for just over an hour.
Had a crushing headache for last half of day -- so did I. Caffeine withdrawal.
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occb
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Tuesday, March 30, 2010
Lamotrigine 300 mg
Effexor XR 150 mg
Xanax --
taken 9 am
Woke up feeling exhausted, worst ever leg pain (barely tolerable all day). But he's focused, happy and chatty this morning.
Crushing headache all morning finally faded at night. Felt depressed today -- it's been sunny.
He took a nap this afternoon
Late afternoon early evening had two epigastric rising sensations which ended up in him vomiting.
8:30 - 9:30 Abdominal pains on and off on the right side (the usual side) and extending to the centre. He moaned just a moment ago and said, "is this pain ever going to go away?" and then it did. Just like that. He's had these abdominal pains since he was a teen. He's been to docs about them many, many times, because he was worried that maybe his appendix burst, or his liver was shot, and the tests showed... nothing. He's also familiar wth gastric pain, and it's not that either -- it's more like a runner's cramp.
Lamotrigine 300 mg
Effexor XR 150 mg
Xanax --
taken 9 am
Woke up feeling exhausted, worst ever leg pain (barely tolerable all day). But he's focused, happy and chatty this morning.
Crushing headache all morning finally faded at night. Felt depressed today -- it's been sunny.
He took a nap this afternoon
Late afternoon early evening had two epigastric rising sensations which ended up in him vomiting.
8:30 - 9:30 Abdominal pains on and off on the right side (the usual side) and extending to the centre. He moaned just a moment ago and said, "is this pain ever going to go away?" and then it did. Just like that. He's had these abdominal pains since he was a teen. He's been to docs about them many, many times, because he was worried that maybe his appendix burst, or his liver was shot, and the tests showed... nothing. He's also familiar wth gastric pain, and it's not that either -- it's more like a runner's cramp.
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occb
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So, partner tells me he recorded the second half of the assessment, and I'll listen to it when I get home today. Yay! I can hear what they said for myself. In Canada it's legal to record a conversation, so long as one person participating in the conversation is aware it's being recorded.
He says going to the doc alone without a witness or a recording is the equivalent of him not going to the doc at all -- he's got record of being lied to, of being lied to about being lied to. There's no better sense of empowerment than knowing you have it on tape. If it's legal for you to do it -- he says do it.
He says going to the doc alone without a witness or a recording is the equivalent of him not going to the doc at all -- he's got record of being lied to, of being lied to about being lied to. There's no better sense of empowerment than knowing you have it on tape. If it's legal for you to do it -- he says do it.
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It's great to have proof! And a record to refer to.
I would love to have recordings of appointments with my neurologist, if only to show her how negative and closed-minded she is. Despite meds/seizures, my memory is better than hers about what was said and when (especially since I take detailed notes after every meeting). At this point it's not worth the hassle of challenging her though.
Given what you and your partner have had to go through, recording his appointments makes terrific sense.
I would love to have recordings of appointments with my neurologist, if only to show her how negative and closed-minded she is. Despite meds/seizures, my memory is better than hers about what was said and when (especially since I take detailed notes after every meeting). At this point it's not worth the hassle of challenging her though.
Given what you and your partner have had to go through, recording his appointments makes terrific sense.
occb
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Definitely! Also, because after appointments like this last one, his memory gets spottier the longer he waits to tell me the details, this way I can have an accurate account of what the docs said, which I'll use in my letter to lazydoc when I request a referral to the E clinic (I don't want to go back to the other neuro unless absolutely necessary). A recording is useful on so many fronts.
I can't believe he didn't tell me aboutt he recording until this morning! I think yesterday was so stressful for him that he didn't want to think about it anymore.
I can't believe he didn't tell me aboutt he recording until this morning! I think yesterday was so stressful for him that he didn't want to think about it anymore.
occb
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Wednesday, March 31, 2010
Lamotrigine 300 mg
Effexor XR 150 mg
Xanax --
taken 9:30
We didn't notice any activity in his sleep last night, but I was asleep waaaaaaayyyyy before he was this time. Wake up was fine -- the pain in his legs was much less than yesterday. Tolerable even. He was chatty today, no space-outs this morning, and the little technophobe actually email conversed with me at work this morning -- he must be doing a-okay. It appears the increase in lamotrigine may be doing him some good.
Also -- he told me that yesterday when he woke up, he had apparently bitten his cheek badly in his sleep. I need to remember to add that to his tuesday diary entry for the docs.
So the day was busier than he initially led me to believe. He had confusion from 9:30-11 -- described as forgetfulness... for example, he wanted his coffee but it wasn't on the coffee table, it was in the microwave for heating, but then he remembers going to the microwave to get the coffee, and he's staring into the open microwave, and the coffee is on the table. It was most intense at 9:30, then lessened over the course of the next hour and a half.
Throught out both the morning and afternoon he experienced pain in his right shoulder, and he would tilt and turn his head to his right shoulder, slowly at first then it ended with a little shiver, despite not being cold (tam bam -- I know you're familiar with this one).
From 3-5 his moods dipped with exhaustion, pain, and mild depression.
Forgetfulness ALL evening. I would tell him something, then have to tell him again five minutes later, then again five minutes later.
No headache though. yay! And leg pain was much, much less, which may also have contributed to his good mood.
Side note -- the last week or so, he's been dropping things alot. Several times a day every day. At the moment it's usually from his right hand. Also, he has bruising on his shin, scratches on his feet and legs, and a cut on his hand, and he has no idea what from. He says of all things, he'd remember the hand cut, because it's pretty deep, but can't seem to recall how he got it.
!0-15 minutes into sleep, he rubbed his nose with his right hand, and raised his left arm straight up into the air. I gently put it back down, but he didn't fully wake up when I did. About two minutes later, He raised his left arm and placed his hand, palm down onto his forhead, and rubbed his nose again with his right hand. I put his arm back down by his side. About two minutes later again, he placed his arm back on his forehead and rubbed his cheek with his right hand. I just left his arm there, because I figured if it suddenly falls, it's not going hurt in the way it would if it suddenly fell from being straight up (he's punched himself in the face before from that). It was still there when I fell asleep. I was just demonstrating to partner what he did in his sleep last night -- it was total "shoulda had a V8" move lol
Lamotrigine 300 mg
Effexor XR 150 mg
Xanax --
taken 9:30
We didn't notice any activity in his sleep last night, but I was asleep waaaaaaayyyyy before he was this time. Wake up was fine -- the pain in his legs was much less than yesterday. Tolerable even. He was chatty today, no space-outs this morning, and the little technophobe actually email conversed with me at work this morning -- he must be doing a-okay. It appears the increase in lamotrigine may be doing him some good.
Also -- he told me that yesterday when he woke up, he had apparently bitten his cheek badly in his sleep. I need to remember to add that to his tuesday diary entry for the docs.
So the day was busier than he initially led me to believe. He had confusion from 9:30-11 -- described as forgetfulness... for example, he wanted his coffee but it wasn't on the coffee table, it was in the microwave for heating, but then he remembers going to the microwave to get the coffee, and he's staring into the open microwave, and the coffee is on the table. It was most intense at 9:30, then lessened over the course of the next hour and a half.
Throught out both the morning and afternoon he experienced pain in his right shoulder, and he would tilt and turn his head to his right shoulder, slowly at first then it ended with a little shiver, despite not being cold (tam bam -- I know you're familiar with this one).
From 3-5 his moods dipped with exhaustion, pain, and mild depression.
Forgetfulness ALL evening. I would tell him something, then have to tell him again five minutes later, then again five minutes later.
No headache though. yay! And leg pain was much, much less, which may also have contributed to his good mood.
Side note -- the last week or so, he's been dropping things alot. Several times a day every day. At the moment it's usually from his right hand. Also, he has bruising on his shin, scratches on his feet and legs, and a cut on his hand, and he has no idea what from. He says of all things, he'd remember the hand cut, because it's pretty deep, but can't seem to recall how he got it.
!0-15 minutes into sleep, he rubbed his nose with his right hand, and raised his left arm straight up into the air. I gently put it back down, but he didn't fully wake up when I did. About two minutes later, He raised his left arm and placed his hand, palm down onto his forhead, and rubbed his nose again with his right hand. I put his arm back down by his side. About two minutes later again, he placed his arm back on his forehead and rubbed his cheek with his right hand. I just left his arm there, because I figured if it suddenly falls, it's not going hurt in the way it would if it suddenly fell from being straight up (he's punched himself in the face before from that). It was still there when I fell asleep. I was just demonstrating to partner what he did in his sleep last night -- it was total "shoulda had a V8" move lol
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