![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 19 to 43 of 43. Go back in thread:
Posted by susan C on September 12, 2001, at 22:58:11
In reply to Re: day 40, posted by dove on September 12, 2001, at 15:01:02
Posted by susan C on September 13, 2001, at 19:08:26
In reply to Re: day 42 Keppra Journal, posted by susan C on September 12, 2001, at 22:52:16
Ok, today was too much, dixxy, hard to think, too many things, tomorrow and saturday I say are turn off days. No go anywhere, no pushing, no trying to grab hold of everything and try to understand, me, the world, anything. A cool dark cave.
Mouse heading for the hills
susan c> Day 42 Keppra journal.
>
> Considering all that has been going on, I think I have been doing pretty well...(see Proactive Response to Stressful Times in Psycho Babble Social) Like Sar has commented, i too have an even-ness that I am unaccustomed to. Husband who admittedly does not see me much during the day, but keeps tabs on me, commented today, that I 'sounded' good. What is it about the 'sound' of someone who is 'better'?
>
> My thoughts come easier, tho I can tell when things are starting to build up, the addition of stress, but the clarity of thought is there. There is a point I reach still, where too much is too much, and at the same time I am coping better. I am saying, I have to eat, you have to stop talking to me, I need to be quiet, I need to rest, I need to make a list, I need to pat myself on the back, I need to hug my husband because he came home yesterday very sad (works in building codes and trained at FEMA) and my hub is always so resiliant. For the first time in a long time, he was sad and I was ok. This is still the first week of the maximum dose, so I am still wozzy in the am, but it clears by about 10.
>
> I started this by commenting I was afraid to take the next pill. Now I can't wait for the second week of this dosage to finish so I can relish how it will feel...how important is hope, faith, confidence even when in the pit of despair? Even when you don't know if anything will work or will keep working?
>
> Thanks for listening
> Your mouse scampering off across the floor
> Susan C
>
> > This is a tough one, how to describe what is going on. First, please understand, I am sharing this process because I have not found anyone who has experience with this medication, as in: 'I take xxx and this has happened, how about you?' I have found many of you here that have similar mood experience to mine. I have confidence in my pdoc and do not expect any of you to second guess him. We are operating on the assumption that my mood disorder, mood swings, rapid cycling, illness has a seizure basis.
> >
> > I think I am feeling better, and got it confirmed by pdoc observations, comparing last visits to this one 'you are smart today' previmouse visits: 'clouded cognative ability', 'clouded cognative ability' 'clouded cognative ability' etc. Don't change anything for six months and get a base line, call if anything changes (he is ALWAYS available).
> >
> > I feel like the calm before the storm, watch and wait. We also talked about how nothing else is physically wrong. I checked on side effects of other meds I take, how often to take, yes, I can divide doses up into three parts in the day, if I want to, but stuck with 2x a day minimum. I brought up again the black edges of my tongue. He sat up, literally, and said, NOW We may have something....biopsy of tissue...Unlike psychology, dermatology can actually confirm the existance of something. Could be luekimia, (oh, great) you don't have luekimia, or it could be lupus, which we have talked about before (face flush).
> >
> > Next choices with an additional med would be antipsychotics, but 75% of bipolar respond to up to two medications. Antipsychotics would add fatigue, which you already deal with and adding more medications would be tricky. You are coping with a chronic serious illness and we have already brought in the big guns. So, in the next six months, watch, and check out the tongue with a dermatology specialist and see what is up...most cost effective way to rule out or rule in possible causes/basis of illness.
> >
> > Time to go surfing again...plus what medical specialist in town will aggressively investigate my question....another arena to investigate, but at least the odds are increasing. And
> >
> > I am more comfortable.
> >
> > Mouse in the storm shelter, waiting for the 'all clear'
> > Susan C
> >
> > > Day 39, oh, boy, they say it takes two days for this to get into your system, and neuro/somnia, etc. Now at 3000mg a day for the last two days and back to the lay down rest routine. looking back, Friday was pretty even. Today, the parts that are clear are clear, but it is hard to think and listen and judge. See pdoc tomorrow, so have to get copy of blood test, and notes and questions together...almost thought of not going until two weeks from now just to see if things evened out more...wonder what his experience is, should I just stop, is there enough difference, is it this subtle change...?
> > >
> > > mouse in the file drawer
> > > Susan C
> > >
> > > > Day 38, the first 1500mg dose was this morning, I took it early, so I just keep to bed and found two hours later not to bad, but after about 5 hours, dropped down again and just had another rest. If this is true, then, over the course of this last month, each time I increased dose, side effects were more, then tapered off over two weeks, then up again, then two weeks. Yesterday was VERY active, but I felt stable. Today, I am groggy and have had a peak into active life. so my to do list is long. Creative manic, agitated manic, impatient manic, deep non responsive desparate depression, or just, hey, to day is today and tomorrow tomorrow and whoopee, here we go, I love life. Just toss me that curve ball and I will smack it into left field over the fence....what will happen next...
> > > >
> > > > Mouse on home base
> > > > Susan C
> > > >
> > > > > Day thirty seven, Dizziness continues after one to two hours of dosing in am, but mood in general seems to be improving. Yesterday was very short nap in afternoon, no real rest, but faded fast in pm, also noticed not as difficult to head off to bed, but was energetic, before dropping off to sleep, not waking up in early morning as before as well. I am concerned I am headed for manic, as I am distractable and talking a lot. It also looks like I might be getting a virus...I will just take two aspirin and call you in the morning. I decided I would just walk to and from the pool today, go slow. try not to do everything...just slow. whoh, nelly.
> > > > >
> > > > > Mouse under the barn door.
> > > > > Susan C
> > > > >
> > > > > > Now it is Wednesday the fifth of September, over a month since I last commented. It has been about that long since I have been able to walk the 20 minutes to the club where I exercise in the pool, I just couldn't get my bearings. but yesterday and today, each, I walked for at least 1/2 hour.
> > > > > >
> > > > > > Part of the difference, I think, is I am getting used to the change, what to expect: I know an hour or two after I take the dose, I am dizzy and have to lay down. After that, the day progresses into the evening. Some days I had to lay down for 5 times or more. However, I generally am more comfortable as reflected in my mood chart. of course, some ups some downs...
> > > > > >
> > > > > > But, the question is...is that because I have shut down all expectations? Did I shut down expectations because I started to feel better? Am I feeling better in general because you fine people have been here to hold my hand EVERY DAY? Is it one of the cycles I go through, like I have gone through before where it is about 8 to 13 months that something works, then stops working?
> > > > > >
> > > > > > Husband observes the changes are very subtle. An increased ability to tolerate difficult situations, noise. He also notices I am paying more attention (ahem) to him.
> > > > > >
> > > > > > I have lost three lbs and my appetite has changed, I eat about half of what I did before. I have observed a change in attitude, one of 'I don't care' not as in suicide, but as in, selfishness. I don't care if the house is clean, I dont care if dinner is prepared...and yet somehow, some of it gets done.
> > > > > >
> > > > > > There is also the possiblity that this is the beginning of a manic episode. Talking fast, lots of ideas, grand plans...
> > > > > >
> > > > > > But the only grand plan I have now and I keep reminding myself, that it is OK to do nothing, to just do one thing, one thing a day. Just wait. Watch. Keep a journal. And say Thank You to all of you, who are there everyday, who are helping me watch this. I, in turn, hope I have been able to help you.
> > > > > >
> > > > > > Susan C.
> > > > > > an appreciative mouse
> > > > > >
> > > > > > > Rriday, more even, think by Sunday I will be able to go exercise again. Still feel 'removed' maybe this the antiseizure working on the activity of my brain? Still waking early, but wonder now if it isn't hotflash.
> > > > > > >
> > > > > > > > Thursday, Definately not as dizzy and tired today, but avoiding any expectations. Noticing I am clearer headed. Don't know if dry/metallic mouth is part of this or depakote. Trying to drink more h20. seem to notice not as over sensitive to things.
> > > > > > > >
> > > > > > > > > Wednesday,9:20Am Took 250mg last night, slept better, but not much. Now 90 minutes after doses and dizzy and confused. Yesterday afternoon, about hour 9 clearer, but able to move, but non active.
> > > > > > > > >
> > > > > > > > > > Tuesday, dose 6 (geesh, cant count) dizzy in am, rested for an hour or so and called pdoc, said dizzy ness may not be due to med, so watch it and see what happens. Am going to cut dose to 250 2x day. This afternoon has been OK, but then I have been taking it very easy. Test will be tonight. Talked to son about noise at 2am. He is good guy. This swing business of being overwhelmed by manic or depression and not knowing it is really the pits.
> > > > > > > > > >
> > > > > > > > > > > Yesterday, Monday, dose 6 of 500mg, got dizzy an hour or so after dose, got more and more depressed and frustrated. I couldn't do what I wanted to do, my routine upset. I feel I am not able to do my responsibilities. Finally gave up in after noon and hung out with TV. Felt better in hour 8 or so. Got support from husband when he came home, he will call several times today. Last night disturbed sleep, bad dreams, similar feelings as during day, angry and depressed. Kept waking up. Maybe noise from son coming home at 2am? Soomekind of superficial sleep? Hot flushes (menopause and on HRT maybe not enough?) Dizzy behind eyes. Now an hour and half from first dose and getting dizzy. Must go lay down. Having trouble thinking. How long do I put up with this? Clarity in morning is gone. When I woke up wasn't sure i had courage to take next pill.
> > > > > > > > > > >
> > > > > > > > > > > > I just added Keppra to 1000mg of depakote for Treatment Resistant (difficult to treat, as sweetmarie says) Rapid cycling. Yesterday i was anxious and angry, which continued through this morning. (another story) First dose, 500mg, was last night. Second this morning. Mornings seem to be ok and I exercise or do something, that appears to be the time of day I am clearest. With Depakote, I usually get tired, spaced and as doc says pre-seisure-like, at about the 6th hour (around 2pm) for an hour. Laying down and sometimes napping resolves this. Today, I saw two hours disappear. Sometimes when I am laying there I get visual disturbances, flashes of light and a sense of knowing it was happening, but that it just happened. Now I am a little dizzy. I have eaten and as long as I am quiet, and don't bend over too quickly, I don't feel too bad. I seem to be able to focus mentally ok, as I am writing this. I just took a break and was talking to family and I feel kind of...silly. I think pdoc said 5% drop out because of drowsiness. the literature says it takes 2 days for it to get into your system. I am one of those 2% of the population that has sensitive reactions to meds. So, here goes my own scientific study. I will try to post progress again tomorrow. Thanks for listening
Posted by susan C on September 14, 2001, at 11:28:53
In reply to Re: day 43 Keppra Journal, posted by susan C on September 13, 2001, at 19:08:26
day 44, oops, mixed up meds, didnt take when planned, so I am two hours off...oops. dizzy like drunk, going to lay down. Nice weather tho, all this caught me by surprise.
Mouseona swing
Susan C> Ok, today was too much, dixxy, hard to think, too many things, tomorrow and saturday I say are turn off days. No go anywhere, no pushing, no trying to grab hold of everything and try to understand, me, the world, anything. A cool dark cave.
>
> Mouse heading for the hills
> susan c
>
> > Day 42 Keppra journal.
> >
> > Considering all that has been going on, I think I have been doing pretty well...(see Proactive Response to Stressful Times in Psycho Babble Social) Like Sar has commented, i too have an even-ness that I am unaccustomed to. Husband who admittedly does not see me much during the day, but keeps tabs on me, commented today, that I 'sounded' good. What is it about the 'sound' of someone who is 'better'?
> >
> > My thoughts come easier, tho I can tell when things are starting to build up, the addition of stress, but the clarity of thought is there. There is a point I reach still, where too much is too much, and at the same time I am coping better. I am saying, I have to eat, you have to stop talking to me, I need to be quiet, I need to rest, I need to make a list, I need to pat myself on the back, I need to hug my husband because he came home yesterday very sad (works in building codes and trained at FEMA) and my hub is always so resiliant. For the first time in a long time, he was sad and I was ok. This is still the first week of the maximum dose, so I am still wozzy in the am, but it clears by about 10.
> >
> > I started this by commenting I was afraid to take the next pill. Now I can't wait for the second week of this dosage to finish so I can relish how it will feel...how important is hope, faith, confidence even when in the pit of despair? Even when you don't know if anything will work or will keep working?
> >
> > Thanks for listening
> > Your mouse scampering off across the floor
> > Susan C
> >
> > > This is a tough one, how to describe what is going on. First, please understand, I am sharing this process because I have not found anyone who has experience with this medication, as in: 'I take xxx and this has happened, how about you?' I have found many of you here that have similar mood experience to mine. I have confidence in my pdoc and do not expect any of you to second guess him. We are operating on the assumption that my mood disorder, mood swings, rapid cycling, illness has a seizure basis.
> > >
> > > I think I am feeling better, and got it confirmed by pdoc observations, comparing last visits to this one 'you are smart today' previmouse visits: 'clouded cognative ability', 'clouded cognative ability' 'clouded cognative ability' etc. Don't change anything for six months and get a base line, call if anything changes (he is ALWAYS available).
> > >
> > > I feel like the calm before the storm, watch and wait. We also talked about how nothing else is physically wrong. I checked on side effects of other meds I take, how often to take, yes, I can divide doses up into three parts in the day, if I want to, but stuck with 2x a day minimum. I brought up again the black edges of my tongue. He sat up, literally, and said, NOW We may have something....biopsy of tissue...Unlike psychology, dermatology can actually confirm the existance of something. Could be luekimia, (oh, great) you don't have luekimia, or it could be lupus, which we have talked about before (face flush).
> > >
> > > Next choices with an additional med would be antipsychotics, but 75% of bipolar respond to up to two medications. Antipsychotics would add fatigue, which you already deal with and adding more medications would be tricky. You are coping with a chronic serious illness and we have already brought in the big guns. So, in the next six months, watch, and check out the tongue with a dermatology specialist and see what is up...most cost effective way to rule out or rule in possible causes/basis of illness.
> > >
> > > Time to go surfing again...plus what medical specialist in town will aggressively investigate my question....another arena to investigate, but at least the odds are increasing. And
> > >
> > > I am more comfortable.
> > >
> > > Mouse in the storm shelter, waiting for the 'all clear'
> > > Susan C
> > >
> > > > Day 39, oh, boy, they say it takes two days for this to get into your system, and neuro/somnia, etc. Now at 3000mg a day for the last two days and back to the lay down rest routine. looking back, Friday was pretty even. Today, the parts that are clear are clear, but it is hard to think and listen and judge. See pdoc tomorrow, so have to get copy of blood test, and notes and questions together...almost thought of not going until two weeks from now just to see if things evened out more...wonder what his experience is, should I just stop, is there enough difference, is it this subtle change...?
> > > >
> > > > mouse in the file drawer
> > > > Susan C
> > > >
> > > > > Day 38, the first 1500mg dose was this morning, I took it early, so I just keep to bed and found two hours later not to bad, but after about 5 hours, dropped down again and just had another rest. If this is true, then, over the course of this last month, each time I increased dose, side effects were more, then tapered off over two weeks, then up again, then two weeks. Yesterday was VERY active, but I felt stable. Today, I am groggy and have had a peak into active life. so my to do list is long. Creative manic, agitated manic, impatient manic, deep non responsive desparate depression, or just, hey, to day is today and tomorrow tomorrow and whoopee, here we go, I love life. Just toss me that curve ball and I will smack it into left field over the fence....what will happen next...
> > > > >
> > > > > Mouse on home base
> > > > > Susan C
> > > > >
> > > > > > Day thirty seven, Dizziness continues after one to two hours of dosing in am, but mood in general seems to be improving. Yesterday was very short nap in afternoon, no real rest, but faded fast in pm, also noticed not as difficult to head off to bed, but was energetic, before dropping off to sleep, not waking up in early morning as before as well. I am concerned I am headed for manic, as I am distractable and talking a lot. It also looks like I might be getting a virus...I will just take two aspirin and call you in the morning. I decided I would just walk to and from the pool today, go slow. try not to do everything...just slow. whoh, nelly.
> > > > > >
> > > > > > Mouse under the barn door.
> > > > > > Susan C
> > > > > >
> > > > > > > Now it is Wednesday the fifth of September, over a month since I last commented. It has been about that long since I have been able to walk the 20 minutes to the club where I exercise in the pool, I just couldn't get my bearings. but yesterday and today, each, I walked for at least 1/2 hour.
> > > > > > >
> > > > > > > Part of the difference, I think, is I am getting used to the change, what to expect: I know an hour or two after I take the dose, I am dizzy and have to lay down. After that, the day progresses into the evening. Some days I had to lay down for 5 times or more. However, I generally am more comfortable as reflected in my mood chart. of course, some ups some downs...
> > > > > > >
> > > > > > > But, the question is...is that because I have shut down all expectations? Did I shut down expectations because I started to feel better? Am I feeling better in general because you fine people have been here to hold my hand EVERY DAY? Is it one of the cycles I go through, like I have gone through before where it is about 8 to 13 months that something works, then stops working?
> > > > > > >
> > > > > > > Husband observes the changes are very subtle. An increased ability to tolerate difficult situations, noise. He also notices I am paying more attention (ahem) to him.
> > > > > > >
> > > > > > > I have lost three lbs and my appetite has changed, I eat about half of what I did before. I have observed a change in attitude, one of 'I don't care' not as in suicide, but as in, selfishness. I don't care if the house is clean, I dont care if dinner is prepared...and yet somehow, some of it gets done.
> > > > > > >
> > > > > > > There is also the possiblity that this is the beginning of a manic episode. Talking fast, lots of ideas, grand plans...
> > > > > > >
> > > > > > > But the only grand plan I have now and I keep reminding myself, that it is OK to do nothing, to just do one thing, one thing a day. Just wait. Watch. Keep a journal. And say Thank You to all of you, who are there everyday, who are helping me watch this. I, in turn, hope I have been able to help you.
> > > > > > >
> > > > > > > Susan C.
> > > > > > > an appreciative mouse
> > > > > > >
> > > > > > > > Rriday, more even, think by Sunday I will be able to go exercise again. Still feel 'removed' maybe this the antiseizure working on the activity of my brain? Still waking early, but wonder now if it isn't hotflash.
> > > > > > > >
> > > > > > > > > Thursday, Definately not as dizzy and tired today, but avoiding any expectations. Noticing I am clearer headed. Don't know if dry/metallic mouth is part of this or depakote. Trying to drink more h20. seem to notice not as over sensitive to things.
> > > > > > > > >
> > > > > > > > > > Wednesday,9:20Am Took 250mg last night, slept better, but not much. Now 90 minutes after doses and dizzy and confused. Yesterday afternoon, about hour 9 clearer, but able to move, but non active.
> > > > > > > > > >
> > > > > > > > > > > Tuesday, dose 6 (geesh, cant count) dizzy in am, rested for an hour or so and called pdoc, said dizzy ness may not be due to med, so watch it and see what happens. Am going to cut dose to 250 2x day. This afternoon has been OK, but then I have been taking it very easy. Test will be tonight. Talked to son about noise at 2am. He is good guy. This swing business of being overwhelmed by manic or depression and not knowing it is really the pits.
> > > > > > > > > > >
> > > > > > > > > > > > Yesterday, Monday, dose 6 of 500mg, got dizzy an hour or so after dose, got more and more depressed and frustrated. I couldn't do what I wanted to do, my routine upset. I feel I am not able to do my responsibilities. Finally gave up in after noon and hung out with TV. Felt better in hour 8 or so. Got support from husband when he came home, he will call several times today. Last night disturbed sleep, bad dreams, similar feelings as during day, angry and depressed. Kept waking up. Maybe noise from son coming home at 2am? Soomekind of superficial sleep? Hot flushes (menopause and on HRT maybe not enough?) Dizzy behind eyes. Now an hour and half from first dose and getting dizzy. Must go lay down. Having trouble thinking. How long do I put up with this? Clarity in morning is gone. When I woke up wasn't sure i had courage to take next pill.
> > > > > > > > > > > >
> > > > > > > > > > > > > I just added Keppra to 1000mg of depakote for Treatment Resistant (difficult to treat, as sweetmarie says) Rapid cycling. Yesterday i was anxious and angry, which continued through this morning. (another story) First dose, 500mg, was last night. Second this morning. Mornings seem to be ok and I exercise or do something, that appears to be the time of day I am clearest. With Depakote, I usually get tired, spaced and as doc says pre-seisure-like, at about the 6th hour (around 2pm) for an hour. Laying down and sometimes napping resolves this. Today, I saw two hours disappear. Sometimes when I am laying there I get visual disturbances, flashes of light and a sense of knowing it was happening, but that it just happened. Now I am a little dizzy. I have eaten and as long as I am quiet, and don't bend over too quickly, I don't feel too bad. I seem to be able to focus mentally ok, as I am writing this. I just took a break and was talking to family and I feel kind of...silly. I think pdoc said 5% drop out because of drowsiness. the literature says it takes 2 days for it to get into your system. I am one of those 2% of the population that has sensitive reactions to meds. So, here goes my own scientific study. I will try to post progress again tomorrow. Thanks for listening
Posted by susan C on September 18, 2001, at 14:29:28
In reply to Re: day 44 Keppra Journal, posted by susan C on September 14, 2001, at 11:28:53
Ok, day 48, the last days have been very difficult. Did it start when mixed up routine? Can changing the time of your dose by several hours make that much difference? Agitated, irritated, swinging. Back is hurting too, cant sit, cant laydown, want to throw everything away. clean clean clean. Finally, yesterday, had a real nap at 1-2. then things lifted... Today, am plowing drudging along. Last night son and hub watched limey, too much for me hid in bathroom and cleaned. Like going through a journal...old ipecac from 20 years ago, old bandaids, half empty salve tubes, spilled soap in the cupboard. How long has it been since things have been tossed. Years old, four, count them four jars of vasaline, 5 tubes of antibiotic cream, 10 toothbrushes, 6 tubes of toothpaste, and I am not the one who bought all these...oh, but they were such a good deal. We have now YEARS of supplies. I hid from the violence on TV. I filled up a grocery bag. I thought about emergency preparedness, the big one, war and dieing.
I went to bed early, as I took my handful of medications I thought, why, why, why am I doing this? Why why can't I get through a day? Then I remind myself I have another week. another week of this up, down, lay down, sleep, up, down...maybe it will even out. maybe.
Now, today, I feel better, more distant. Appreciating my son, who helps me as I try to sort through things and recognized the difference of what I did and thanked me for all the cleaning I did yesterday.
mouse as the clock strikes one
Susan C> day 44, oops, mixed up meds, didnt take when planned, so I am two hours off...oops. dizzy like drunk, going to lay down. Nice weather tho, all this caught me by surprise.
>
> Mouseona swing
> Susan C
>
> > Ok, today was too much, dixxy, hard to think, too many things, tomorrow and saturday I say are turn off days. No go anywhere, no pushing, no trying to grab hold of everything and try to understand, me, the world, anything. A cool dark cave.
> >
> > Mouse heading for the hills
> > susan c
> >
> > > Day 42 Keppra journal.
> > >
> > > Considering all that has been going on, I think I have been doing pretty well...(see Proactive Response to Stressful Times in Psycho Babble Social) Like Sar has commented, i too have an even-ness that I am unaccustomed to. Husband who admittedly does not see me much during the day, but keeps tabs on me, commented today, that I 'sounded' good. What is it about the 'sound' of someone who is 'better'?
> > >
> > > My thoughts come easier, tho I can tell when things are starting to build up, the addition of stress, but the clarity of thought is there. There is a point I reach still, where too much is too much, and at the same time I am coping better. I am saying, I have to eat, you have to stop talking to me, I need to be quiet, I need to rest, I need to make a list, I need to pat myself on the back, I need to hug my husband because he came home yesterday very sad (works in building codes and trained at FEMA) and my hub is always so resiliant. For the first time in a long time, he was sad and I was ok. This is still the first week of the maximum dose, so I am still wozzy in the am, but it clears by about 10.
> > >
> > > I started this by commenting I was afraid to take the next pill. Now I can't wait for the second week of this dosage to finish so I can relish how it will feel...how important is hope, faith, confidence even when in the pit of despair? Even when you don't know if anything will work or will keep working?
> > >
> > > Thanks for listening
> > > Your mouse scampering off across the floor
> > > Susan C
> > >
> > > > This is a tough one, how to describe what is going on. First, please understand, I am sharing this process because I have not found anyone who has experience with this medication, as in: 'I take xxx and this has happened, how about you?' I have found many of you here that have similar mood experience to mine. I have confidence in my pdoc and do not expect any of you to second guess him. We are operating on the assumption that my mood disorder, mood swings, rapid cycling, illness has a seizure basis.
> > > >
> > > > I think I am feeling better, and got it confirmed by pdoc observations, comparing last visits to this one 'you are smart today' previmouse visits: 'clouded cognative ability', 'clouded cognative ability' 'clouded cognative ability' etc. Don't change anything for six months and get a base line, call if anything changes (he is ALWAYS available).
> > > >
> > > > I feel like the calm before the storm, watch and wait. We also talked about how nothing else is physically wrong. I checked on side effects of other meds I take, how often to take, yes, I can divide doses up into three parts in the day, if I want to, but stuck with 2x a day minimum. I brought up again the black edges of my tongue. He sat up, literally, and said, NOW We may have something....biopsy of tissue...Unlike psychology, dermatology can actually confirm the existance of something. Could be luekimia, (oh, great) you don't have luekimia, or it could be lupus, which we have talked about before (face flush).
> > > >
> > > > Next choices with an additional med would be antipsychotics, but 75% of bipolar respond to up to two medications. Antipsychotics would add fatigue, which you already deal with and adding more medications would be tricky. You are coping with a chronic serious illness and we have already brought in the big guns. So, in the next six months, watch, and check out the tongue with a dermatology specialist and see what is up...most cost effective way to rule out or rule in possible causes/basis of illness.
> > > >
> > > > Time to go surfing again...plus what medical specialist in town will aggressively investigate my question....another arena to investigate, but at least the odds are increasing. And
> > > >
> > > > I am more comfortable.
> > > >
> > > > Mouse in the storm shelter, waiting for the 'all clear'
> > > > Susan C
> > > >
> > > > > Day 39, oh, boy, they say it takes two days for this to get into your system, and neuro/somnia, etc. Now at 3000mg a day for the last two days and back to the lay down rest routine. looking back, Friday was pretty even. Today, the parts that are clear are clear, but it is hard to think and listen and judge. See pdoc tomorrow, so have to get copy of blood test, and notes and questions together...almost thought of not going until two weeks from now just to see if things evened out more...wonder what his experience is, should I just stop, is there enough difference, is it this subtle change...?
> > > > >
> > > > > mouse in the file drawer
> > > > > Susan C
> > > > >
> > > > > > Day 38, the first 1500mg dose was this morning, I took it early, so I just keep to bed and found two hours later not to bad, but after about 5 hours, dropped down again and just had another rest. If this is true, then, over the course of this last month, each time I increased dose, side effects were more, then tapered off over two weeks, then up again, then two weeks. Yesterday was VERY active, but I felt stable. Today, I am groggy and have had a peak into active life. so my to do list is long. Creative manic, agitated manic, impatient manic, deep non responsive desparate depression, or just, hey, to day is today and tomorrow tomorrow and whoopee, here we go, I love life. Just toss me that curve ball and I will smack it into left field over the fence....what will happen next...
> > > > > >
> > > > > > Mouse on home base
> > > > > > Susan C
> > > > > >
> > > > > > > Day thirty seven, Dizziness continues after one to two hours of dosing in am, but mood in general seems to be improving. Yesterday was very short nap in afternoon, no real rest, but faded fast in pm, also noticed not as difficult to head off to bed, but was energetic, before dropping off to sleep, not waking up in early morning as before as well. I am concerned I am headed for manic, as I am distractable and talking a lot. It also looks like I might be getting a virus...I will just take two aspirin and call you in the morning. I decided I would just walk to and from the pool today, go slow. try not to do everything...just slow. whoh, nelly.
> > > > > > >
> > > > > > > Mouse under the barn door.
> > > > > > > Susan C
> > > > > > >
> > > > > > > > Now it is Wednesday the fifth of September, over a month since I last commented. It has been about that long since I have been able to walk the 20 minutes to the club where I exercise in the pool, I just couldn't get my bearings. but yesterday and today, each, I walked for at least 1/2 hour.
> > > > > > > >
> > > > > > > > Part of the difference, I think, is I am getting used to the change, what to expect: I know an hour or two after I take the dose, I am dizzy and have to lay down. After that, the day progresses into the evening. Some days I had to lay down for 5 times or more. However, I generally am more comfortable as reflected in my mood chart. of course, some ups some downs...
> > > > > > > >
> > > > > > > > But, the question is...is that because I have shut down all expectations? Did I shut down expectations because I started to feel better? Am I feeling better in general because you fine people have been here to hold my hand EVERY DAY? Is it one of the cycles I go through, like I have gone through before where it is about 8 to 13 months that something works, then stops working?
> > > > > > > >
> > > > > > > > Husband observes the changes are very subtle. An increased ability to tolerate difficult situations, noise. He also notices I am paying more attention (ahem) to him.
> > > > > > > >
> > > > > > > > I have lost three lbs and my appetite has changed, I eat about half of what I did before. I have observed a change in attitude, one of 'I don't care' not as in suicide, but as in, selfishness. I don't care if the house is clean, I dont care if dinner is prepared...and yet somehow, some of it gets done.
> > > > > > > >
> > > > > > > > There is also the possiblity that this is the beginning of a manic episode. Talking fast, lots of ideas, grand plans...
> > > > > > > >
> > > > > > > > But the only grand plan I have now and I keep reminding myself, that it is OK to do nothing, to just do one thing, one thing a day. Just wait. Watch. Keep a journal. And say Thank You to all of you, who are there everyday, who are helping me watch this. I, in turn, hope I have been able to help you.
> > > > > > > >
> > > > > > > > Susan C.
> > > > > > > > an appreciative mouse
> > > > > > > >
> > > > > > > > > Rriday, more even, think by Sunday I will be able to go exercise again. Still feel 'removed' maybe this the antiseizure working on the activity of my brain? Still waking early, but wonder now if it isn't hotflash.
> > > > > > > > >
> > > > > > > > > > Thursday, Definately not as dizzy and tired today, but avoiding any expectations. Noticing I am clearer headed. Don't know if dry/metallic mouth is part of this or depakote. Trying to drink more h20. seem to notice not as over sensitive to things.
> > > > > > > > > >
> > > > > > > > > > > Wednesday,9:20Am Took 250mg last night, slept better, but not much. Now 90 minutes after doses and dizzy and confused. Yesterday afternoon, about hour 9 clearer, but able to move, but non active.
> > > > > > > > > > >
> > > > > > > > > > > > Tuesday, dose 6 (geesh, cant count) dizzy in am, rested for an hour or so and called pdoc, said dizzy ness may not be due to med, so watch it and see what happens. Am going to cut dose to 250 2x day. This afternoon has been OK, but then I have been taking it very easy. Test will be tonight. Talked to son about noise at 2am. He is good guy. This swing business of being overwhelmed by manic or depression and not knowing it is really the pits.
> > > > > > > > > > > >
> > > > > > > > > > > > > Yesterday, Monday, dose 6 of 500mg, got dizzy an hour or so after dose, got more and more depressed and frustrated. I couldn't do what I wanted to do, my routine upset. I feel I am not able to do my responsibilities. Finally gave up in after noon and hung out with TV. Felt better in hour 8 or so. Got support from husband when he came home, he will call several times today. Last night disturbed sleep, bad dreams, similar feelings as during day, angry and depressed. Kept waking up. Maybe noise from son coming home at 2am? Soomekind of superficial sleep? Hot flushes (menopause and on HRT maybe not enough?) Dizzy behind eyes. Now an hour and half from first dose and getting dizzy. Must go lay down. Having trouble thinking. How long do I put up with this? Clarity in morning is gone. When I woke up wasn't sure i had courage to take next pill.
> > > > > > > > > > > > >
> > > > > > > > > > > > > > I just added Keppra to 1000mg of depakote for Treatment Resistant (difficult to treat, as sweetmarie says) Rapid cycling. Yesterday i was anxious and angry, which continued through this morning. (another story) First dose, 500mg, was last night. Second this morning. Mornings seem to be ok and I exercise or do something, that appears to be the time of day I am clearest. With Depakote, I usually get tired, spaced and as doc says pre-seisure-like, at about the 6th hour (around 2pm) for an hour. Laying down and sometimes napping resolves this. Today, I saw two hours disappear. Sometimes when I am laying there I get visual disturbances, flashes of light and a sense of knowing it was happening, but that it just happened. Now I am a little dizzy. I have eaten and as long as I am quiet, and don't bend over too quickly, I don't feel too bad. I seem to be able to focus mentally ok, as I am writing this. I just took a break and was talking to family and I feel kind of...silly. I think pdoc said 5% drop out because of drowsiness. the literature says it takes 2 days for it to get into your system. I am one of those 2% of the population that has sensitive reactions to meds. So, here goes my own scientific study. I will try to post progress again tomorrow. Thanks for listening
Posted by paxvox on September 19, 2001, at 7:01:31
In reply to Re: day 48 Keppra Journal, posted by susan C on September 18, 2001, at 14:29:28
Mouse in the house has friends like a fire that can't be doused. A worry today, a cry, heavy sigh
doesn't mean the sun will never rise in the sky.PAX
Posted by susan C on September 24, 2001, at 18:12:28
In reply to Re: day 48 Keppra Journal, posted by susan C on September 18, 2001, at 14:29:28
Day, I dont know, but it is 3000mg for two weeks as of last saturday. Just to be consistant, here is the med part of the post from pbs:
I was in the state last week were I was ready to give up, what sense is there to all of this, it just keeps coming back, go away go away I want to scream. Sometimes the good bits, like now, are painful because I am close enough to the bad bits today, I don't want to go back there. Or if I do, why can't I just stay...this going back and forth is sh**.(please pardon my french)
We reviewed (chat, hub, email, me brain and I)and here are the things that the last hypomanic/mixed episode resulted in/from:
1. I was very frightened. Because: they hadn't happened to this extent in a while (going on 5 days). Even though I am unsteady and somewhat dull, my emotions have kept relatively with in bounds (read depakote)
2. The keppra seems to work, tho very subtlely
3. This last event was longer, 5 days than last one-(one day), and longer since previous (last fall med doctor changes, many months of mess)
4. When I reviewed changes by adding keppra, I was also adding more and more things, more and more expectations...in other words, I was feeling better, thinking better, so doing better and I think I have been doing too much. I thought I would open my arms up and take it all in like I used to...now, back again to setting boundries. "I want it all, I want it all"
5. September 11. My response was delayed and I now no longer watch tv, read news, nor as much as I would like to give you all support, posts which refer to it.
6. During this time, I realized, again, I cannot watch movies where women, children, men, people animals are hurt, or the portrayals of conflict are serious...I have to stop the movie, leave the room, say, I can not have this image in my brain. Therefore the post for silly movies...which I really, really, really, appreciate the responses.
7. I finished watching 'a fish called Wanda', "what was that third one again?" Kevin Klinesusan c
> Ok, day 48, the last days have been very difficult. Did it start when mixed up routine? Can changing the time of your dose by several hours make that much difference? Agitated, irritated, swinging. Back is hurting too, cant sit, cant laydown, want to throw everything away. clean clean clean. Finally, yesterday, had a real nap at 1-2. then things lifted... Today, am plowing drudging along. Last night son and hub watched limey, too much for me hid in bathroom and cleaned. Like going through a journal...old ipecac from 20 years ago, old bandaids, half empty salve tubes, spilled soap in the cupboard. How long has it been since things have been tossed. Years old, four, count them four jars of vasaline, 5 tubes of antibiotic cream, 10 toothbrushes, 6 tubes of toothpaste, and I am not the one who bought all these...oh, but they were such a good deal. We have now YEARS of supplies. I hid from the violence on TV. I filled up a grocery bag. I thought about emergency preparedness, the big one, war and dieing.
>
> I went to bed early, as I took my handful of medications I thought, why, why, why am I doing this? Why why can't I get through a day? Then I remind myself I have another week. another week of this up, down, lay down, sleep, up, down...maybe it will even out. maybe.
>
> Now, today, I feel better, more distant. Appreciating my son, who helps me as I try to sort through things and recognized the difference of what I did and thanked me for all the cleaning I did yesterday.
>
> mouse as the clock strikes one
> Susan C
>
> > day 44, oops, mixed up meds, didnt take when planned, so I am two hours off...oops. dizzy like drunk, going to lay down. Nice weather tho, all this caught me by surprise.
> >
> > Mouseona swing
> > Susan C
> >
> > > Ok, today was too much, dixxy, hard to think, too many things, tomorrow and saturday I say are turn off days. No go anywhere, no pushing, no trying to grab hold of everything and try to understand, me, the world, anything. A cool dark cave.
> > >
> > > Mouse heading for the hills
> > > susan c
> > >
> > > > Day 42 Keppra journal.
> > > >
> > > > Considering all that has been going on, I think I have been doing pretty well...(see Proactive Response to Stressful Times in Psycho Babble Social) Like Sar has commented, i too have an even-ness that I am unaccustomed to. Husband who admittedly does not see me much during the day, but keeps tabs on me, commented today, that I 'sounded' good. What is it about the 'sound' of someone who is 'better'?
> > > >
> > > > My thoughts come easier, tho I can tell when things are starting to build up, the addition of stress, but the clarity of thought is there. There is a point I reach still, where too much is too much, and at the same time I am coping better. I am saying, I have to eat, you have to stop talking to me, I need to be quiet, I need to rest, I need to make a list, I need to pat myself on the back, I need to hug my husband because he came home yesterday very sad (works in building codes and trained at FEMA) and my hub is always so resiliant. For the first time in a long time, he was sad and I was ok. This is still the first week of the maximum dose, so I am still wozzy in the am, but it clears by about 10.
> > > >
> > > > I started this by commenting I was afraid to take the next pill. Now I can't wait for the second week of this dosage to finish so I can relish how it will feel...how important is hope, faith, confidence even when in the pit of despair? Even when you don't know if anything will work or will keep working?
> > > >
> > > > Thanks for listening
> > > > Your mouse scampering off across the floor
> > > > Susan C
> > > >
> > > > > This is a tough one, how to describe what is going on. First, please understand, I am sharing this process because I have not found anyone who has experience with this medication, as in: 'I take xxx and this has happened, how about you?' I have found many of you here that have similar mood experience to mine. I have confidence in my pdoc and do not expect any of you to second guess him. We are operating on the assumption that my mood disorder, mood swings, rapid cycling, illness has a seizure basis.
> > > > >
> > > > > I think I am feeling better, and got it confirmed by pdoc observations, comparing last visits to this one 'you are smart today' previmouse visits: 'clouded cognative ability', 'clouded cognative ability' 'clouded cognative ability' etc. Don't change anything for six months and get a base line, call if anything changes (he is ALWAYS available).
> > > > >
> > > > > I feel like the calm before the storm, watch and wait. We also talked about how nothing else is physically wrong. I checked on side effects of other meds I take, how often to take, yes, I can divide doses up into three parts in the day, if I want to, but stuck with 2x a day minimum. I brought up again the black edges of my tongue. He sat up, literally, and said, NOW We may have something....biopsy of tissue...Unlike psychology, dermatology can actually confirm the existance of something. Could be luekimia, (oh, great) you don't have luekimia, or it could be lupus, which we have talked about before (face flush).
> > > > >
> > > > > Next choices with an additional med would be antipsychotics, but 75% of bipolar respond to up to two medications. Antipsychotics would add fatigue, which you already deal with and adding more medications would be tricky. You are coping with a chronic serious illness and we have already brought in the big guns. So, in the next six months, watch, and check out the tongue with a dermatology specialist and see what is up...most cost effective way to rule out or rule in possible causes/basis of illness.
> > > > >
> > > > > Time to go surfing again...plus what medical specialist in town will aggressively investigate my question....another arena to investigate, but at least the odds are increasing. And
> > > > >
> > > > > I am more comfortable.
> > > > >
> > > > > Mouse in the storm shelter, waiting for the 'all clear'
> > > > > Susan C
> > > > >
> > > > > > Day 39, oh, boy, they say it takes two days for this to get into your system, and neuro/somnia, etc. Now at 3000mg a day for the last two days and back to the lay down rest routine. looking back, Friday was pretty even. Today, the parts that are clear are clear, but it is hard to think and listen and judge. See pdoc tomorrow, so have to get copy of blood test, and notes and questions together...almost thought of not going until two weeks from now just to see if things evened out more...wonder what his experience is, should I just stop, is there enough difference, is it this subtle change...?
> > > > > >
> > > > > > mouse in the file drawer
> > > > > > Susan C
> > > > > >
> > > > > > > Day 38, the first 1500mg dose was this morning, I took it early, so I just keep to bed and found two hours later not to bad, but after about 5 hours, dropped down again and just had another rest. If this is true, then, over the course of this last month, each time I increased dose, side effects were more, then tapered off over two weeks, then up again, then two weeks. Yesterday was VERY active, but I felt stable. Today, I am groggy and have had a peak into active life. so my to do list is long. Creative manic, agitated manic, impatient manic, deep non responsive desparate depression, or just, hey, to day is today and tomorrow tomorrow and whoopee, here we go, I love life. Just toss me that curve ball and I will smack it into left field over the fence....what will happen next...
> > > > > > >
> > > > > > > Mouse on home base
> > > > > > > Susan C
> > > > > > >
> > > > > > > > Day thirty seven, Dizziness continues after one to two hours of dosing in am, but mood in general seems to be improving. Yesterday was very short nap in afternoon, no real rest, but faded fast in pm, also noticed not as difficult to head off to bed, but was energetic, before dropping off to sleep, not waking up in early morning as before as well. I am concerned I am headed for manic, as I am distractable and talking a lot. It also looks like I might be getting a virus...I will just take two aspirin and call you in the morning. I decided I would just walk to and from the pool today, go slow. try not to do everything...just slow. whoh, nelly.
> > > > > > > >
> > > > > > > > Mouse under the barn door.
> > > > > > > > Susan C
> > > > > > > >
> > > > > > > > > Now it is Wednesday the fifth of September, over a month since I last commented. It has been about that long since I have been able to walk the 20 minutes to the club where I exercise in the pool, I just couldn't get my bearings. but yesterday and today, each, I walked for at least 1/2 hour.
> > > > > > > > >
> > > > > > > > > Part of the difference, I think, is I am getting used to the change, what to expect: I know an hour or two after I take the dose, I am dizzy and have to lay down. After that, the day progresses into the evening. Some days I had to lay down for 5 times or more. However, I generally am more comfortable as reflected in my mood chart. of course, some ups some downs...
> > > > > > > > >
> > > > > > > > > But, the question is...is that because I have shut down all expectations? Did I shut down expectations because I started to feel better? Am I feeling better in general because you fine people have been here to hold my hand EVERY DAY? Is it one of the cycles I go through, like I have gone through before where it is about 8 to 13 months that something works, then stops working?
> > > > > > > > >
> > > > > > > > > Husband observes the changes are very subtle. An increased ability to tolerate difficult situations, noise. He also notices I am paying more attention (ahem) to him.
> > > > > > > > >
> > > > > > > > > I have lost three lbs and my appetite has changed, I eat about half of what I did before. I have observed a change in attitude, one of 'I don't care' not as in suicide, but as in, selfishness. I don't care if the house is clean, I dont care if dinner is prepared...and yet somehow, some of it gets done.
> > > > > > > > >
> > > > > > > > > There is also the possiblity that this is the beginning of a manic episode. Talking fast, lots of ideas, grand plans...
> > > > > > > > >
> > > > > > > > > But the only grand plan I have now and I keep reminding myself, that it is OK to do nothing, to just do one thing, one thing a day. Just wait. Watch. Keep a journal. And say Thank You to all of you, who are there everyday, who are helping me watch this. I, in turn, hope I have been able to help you.
> > > > > > > > >
> > > > > > > > > Susan C.
> > > > > > > > > an appreciative mouse
> > > > > > > > >
> > > > > > > > > > Rriday, more even, think by Sunday I will be able to go exercise again. Still feel 'removed' maybe this the antiseizure working on the activity of my brain? Still waking early, but wonder now if it isn't hotflash.
> > > > > > > > > >
> > > > > > > > > > > Thursday, Definately not as dizzy and tired today, but avoiding any expectations. Noticing I am clearer headed. Don't know if dry/metallic mouth is part of this or depakote. Trying to drink more h20. seem to notice not as over sensitive to things.
> > > > > > > > > > >
> > > > > > > > > > > > Wednesday,9:20Am Took 250mg last night, slept better, but not much. Now 90 minutes after doses and dizzy and confused. Yesterday afternoon, about hour 9 clearer, but able to move, but non active.
> > > > > > > > > > > >
> > > > > > > > > > > > > Tuesday, dose 6 (geesh, cant count) dizzy in am, rested for an hour or so and called pdoc, said dizzy ness may not be due to med, so watch it and see what happens. Am going to cut dose to 250 2x day. This afternoon has been OK, but then I have been taking it very easy. Test will be tonight. Talked to son about noise at 2am. He is good guy. This swing business of being overwhelmed by manic or depression and not knowing it is really the pits.
> > > > > > > > > > > > >
> > > > > > > > > > > > > > Yesterday, Monday, dose 6 of 500mg, got dizzy an hour or so after dose, got more and more depressed and frustrated. I couldn't do what I wanted to do, my routine upset. I feel I am not able to do my responsibilities. Finally gave up in after noon and hung out with TV. Felt better in hour 8 or so. Got support from husband when he came home, he will call several times today. Last night disturbed sleep, bad dreams, similar feelings as during day, angry and depressed. Kept waking up. Maybe noise from son coming home at 2am? Soomekind of superficial sleep? Hot flushes (menopause and on HRT maybe not enough?) Dizzy behind eyes. Now an hour and half from first dose and getting dizzy. Must go lay down. Having trouble thinking. How long do I put up with this? Clarity in morning is gone. When I woke up wasn't sure i had courage to take next pill.
> > > > > > > > > > > > > >
> > > > > > > > > > > > > > > I just added Keppra to 1000mg of depakote for Treatment Resistant (difficult to treat, as sweetmarie says) Rapid cycling. Yesterday i was anxious and angry, which continued through this morning. (another story) First dose, 500mg, was last night. Second this morning. Mornings seem to be ok and I exercise or do something, that appears to be the time of day I am clearest. With Depakote, I usually get tired, spaced and as doc says pre-seisure-like, at about the 6th hour (around 2pm) for an hour. Laying down and sometimes napping resolves this. Today, I saw two hours disappear. Sometimes when I am laying there I get visual disturbances, flashes of light and a sense of knowing it was happening, but that it just happened. Now I am a little dizzy. I have eaten and as long as I am quiet, and don't bend over too quickly, I don't feel too bad. I seem to be able to focus mentally ok, as I am writing this. I just took a break and was talking to family and I feel kind of...silly. I think pdoc said 5% drop out because of drowsiness. the literature says it takes 2 days for it to get into your system. I am one of those 2% of the population that has sensitive reactions to meds. So, here goes my own scientific study. I will try to post progress again tomorrow. Thanks for listening
Posted by Krazy Kat on September 26, 2001, at 9:39:20
In reply to Re: day I dont know the day, posted by susan C on September 24, 2001, at 18:12:28
> Susan:
What's the next step? Do you know? If you continue to have "manic" spells, what will they try next? Would you say you are treatment resistant, or med resistant at this point? Then what's the next plan? Do you think some of the fatigue and general malaise is from the medication?
It doesn't sound the Keppra really has helped that much, but that's just my take.
I can't recall - did you take Lithium?
Is this all complicated because of other medical conditions?
I'm looking for answers because it makes me sad that you are struggling with this so. Is there a doctor outside of your area who could help? Or was the "world expert" your best bet? I imagine "world experts" can be wrong...
- K.
Posted by susan C on September 26, 2001, at 14:52:58
In reply to Re: day I dont know the day, posted by Krazy Kat on September 26, 2001, at 9:39:20
> > Susan:
>
> What's the next step?A six month base line
Do you know?
see above
If you continue to have "manic" spells, what will they try next?
5% chance of MS, possible lupus (face flush, tongue discoloration-biopsy of tongue, 5 out of the 10 people he has sent to dermatologist had either lupus or leukeimia, I dont have leukeimia, he reassured me...but lupus keeps coming up. A spinal tap. He is puzzled. Is still convinced I have mood related to seizure disorder. Is not going to recomment higher than recommended dose of Keppra because he doesn't have enough experience...
Would you say you are treatment resistant,
This is what I have been told, as all meds I have tried have done little or nothing or worse
or med resistant at this point?
what is the difference between the last two above? I have been wondering about 'over medicated', but I am on relatively low dose of depakote...
Then what's the next plan?
wait and see ?? Take the beatings??
Do you think some of the fatigue and general malaise is from the medication?
I know some of it is from depakote, but then that is what changed when I started keppra, but then, with keppra, I have episodes where I have to lay down, but it is only for 15 to 60 minutes, then, like right now, I feel pretty clear, but these can happen many times a day...I have read that dizziness is generally not associated with a bad thing, more a side effect...however, it keeps me from being confident to go anywhere. Pdoc said the reason, number one reason people stop keppra is because of the sleepiness...I would agree...
>
> It doesn't sound the Keppra really has helped that much, but that's just my take.No, I dont think it has been of dramatic help. It has had some subtile changes...more clarity at times, for example. But I dont think it is the 'answer'. Unfortunately, I guess, I would only know if I stopped...then maybe I would see a difference. I am depending on my pdocs evaluation right now...6 month trial and to investigate the discoloration on my tongue. Watch and wait to create and have a base line.
As it is, as I listed, it is also hard to say with what has gone on in general in the world...friend and I were talking yesterday about how I was first person she had talked to in the last week who understood what she meant when she said in the 70's why she had decided not to have children (nuclear war) all her friends are under 35, they never grew up with air raid sirens, civil defence drills, the treat of nuclear holocost...
>
> I can't recall - did you take Lithium?Yes, I took it many years ago, and had stomach upset, no real change in mood. When considering what to do after some results with depakote (8 months) we talked about it, I asked if (lithiums manufacture...) it had changed at all. Doc said it was his opinion it would not help to add it, my negative side effects would be the same. Now, this memory is just amemory of what happened...I have my med records from previous pdoc and still havent gotten the guts to read it...maybe I will send a copy to new doc...let him read them...give him something to do...add to his 'intuition'....
>
> Is this all complicated because of other medical conditions?It is possible that menopause is contributing, but, if so, that would not explain, why I have been this way my whole life...unless it has to do with fundamental female hormones. It is genetic I think, remember my bro, my dad? I can tell you those stories...Then there is asthma, acid reflux, otherwise I am regular healthy 50 year old.
>
> I'm looking for answers because it makes me sad that you are struggling with this so. Is there a doctor outside of your area who could help? Or was the "world expert" your best bet? I imagine "world experts" can be wrong...I appreciate your concern and I started this self education process of reading and posting and trying to get to know everyone on this board and it has been very helpful. Hard work tho. It is hard work to hit the submit button and confirm, click only once button, especially when I am feeling either depressed or manic I second guess myself and everyone else.
The 'world expert' I went to for another opinion while I was changing doctors. I have pretty much accepted his observations as accurate, to a point. I found the pdoc I am currently seeing because he was/has been very helpful to a son of a good friend and is very straight forward and creative in his thinking. He says he doesn't know what to do next, he lists possible things, he 'perked up' when I commented again on my tongue...I just know these things happen and it has been going on now for so long, I am just glad I am in the supportive family I am in.
On the form he filled out for the disability insurance he stated unlikely to get better.
I have considered whether or not I should go to the Mayo Clinic, start over with another pdoc in town, start over with a different family doc, but I get so tired of thinking about going over all this again. As a friend of mine said, the part of medicine she doesnt like is the 'read the notes when the patient is in front of you'. All of my blood tests come back in normal range. I have not done an eeg, mri, spect...blah blah blah. As my pdoc says, they would probably do one or two things...tell you something is wrong with your brain, which you already know and accept and show us where we can go in and take a look and take something out...at which point I grimaced and said, no thank you.
It is raining and blowing today, my 8' volunteer sunflowers are toppling over and I am one by one hanging them up in the cottonwood tree to dry out so the chickadees can eat them this winter.
I had a hard time resting earlier because they are now all in their flock (they separate during the mating season) and where chattering in the trees by my window.
>
> - K.mouse fixing up a winter's nest
susan C
Posted by susan C on October 11, 2001, at 18:40:43
In reply to Re: day I dont know the day, posted by susan C on September 26, 2001, at 14:52:58
I hope putting all this here makes sense
http://www.dr-bob.org/babble/20011007/msgs/80670.html Blood and Fire caught me procrastinating, or in the mid decision to put it more delicately.
Today, I start tapering down off of Keppra...it is clearly not working, we are done...I love that "we". I think the thing that worried me the most was the complete loss of appetite, second only to the unstability on my feet. There, that is my two and a half month scientific study of the new drug Keppra. Cam if you are out there...there is one for your files...
So, now, we watch, nes paus? and if it really was helping and I have the 'trade off', with side effects being better than illness...I am not looking forward to the next two weeks, but then, I have two, tall, frosty root beer floats. Anyone want to join me while I watch the sunset on another med?
mouse in the tall grass
susan Cp.s. dentist and asthma dr donot see lupus. So the Vote is Two to MayBe One...
but I do have two fillings and crown and lung xrays scheduled...
> > > Susan:
> >
> > What's the next step?
>
> A six month base line
>
> Do you know?
>
> see above
>
> If you continue to have "manic" spells, what will they try next?
>
> 5% chance of MS, possible lupus (face flush, tongue discoloration-biopsy of tongue, 5 out of the 10 people he has sent to dermatologist had either lupus or leukeimia, I dont have leukeimia, he reassured me...but lupus keeps coming up. A spinal tap. He is puzzled. Is still convinced I have mood related to seizure disorder. Is not going to recomment higher than recommended dose of Keppra because he doesn't have enough experience...
>
> Would you say you are treatment resistant,
>
> This is what I have been told, as all meds I have tried have done little or nothing or worse
>
> or med resistant at this point?
>
> what is the difference between the last two above? I have been wondering about 'over medicated', but I am on relatively low dose of depakote...
>
> Then what's the next plan?
>
> wait and see ?? Take the beatings??
>
> Do you think some of the fatigue and general malaise is from the medication?
>
> I know some of it is from depakote, but then that is what changed when I started keppra, but then, with keppra, I have episodes where I have to lay down, but it is only for 15 to 60 minutes, then, like right now, I feel pretty clear, but these can happen many times a day...I have read that dizziness is generally not associated with a bad thing, more a side effect...however, it keeps me from being confident to go anywhere. Pdoc said the reason, number one reason people stop keppra is because of the sleepiness...I would agree...
> >
> > It doesn't sound the Keppra really has helped that much, but that's just my take.
>
> No, I dont think it has been of dramatic help. It has had some subtile changes...more clarity at times, for example. But I dont think it is the 'answer'. Unfortunately, I guess, I would only know if I stopped...then maybe I would see a difference. I am depending on my pdocs evaluation right now...6 month trial and to investigate the discoloration on my tongue. Watch and wait to create and have a base line.
>
> As it is, as I listed, it is also hard to say with what has gone on in general in the world...friend and I were talking yesterday about how I was first person she had talked to in the last week who understood what she meant when she said in the 70's why she had decided not to have children (nuclear war) all her friends are under 35, they never grew up with air raid sirens, civil defence drills, the treat of nuclear holocost...
> >
> > I can't recall - did you take Lithium?
>
> Yes, I took it many years ago, and had stomach upset, no real change in mood. When considering what to do after some results with depakote (8 months) we talked about it, I asked if (lithiums manufacture...) it had changed at all. Doc said it was his opinion it would not help to add it, my negative side effects would be the same. Now, this memory is just amemory of what happened...I have my med records from previous pdoc and still havent gotten the guts to read it...maybe I will send a copy to new doc...let him read them...give him something to do...add to his 'intuition'....
> >
> > Is this all complicated because of other medical conditions?
>
> It is possible that menopause is contributing, but, if so, that would not explain, why I have been this way my whole life...unless it has to do with fundamental female hormones. It is genetic I think, remember my bro, my dad? I can tell you those stories...Then there is asthma, acid reflux, otherwise I am regular healthy 50 year old.
> >
> > I'm looking for answers because it makes me sad that you are struggling with this so. Is there a doctor outside of your area who could help? Or was the "world expert" your best bet? I imagine "world experts" can be wrong...
>
> I appreciate your concern and I started this self education process of reading and posting and trying to get to know everyone on this board and it has been very helpful. Hard work tho. It is hard work to hit the submit button and confirm, click only once button, especially when I am feeling either depressed or manic I second guess myself and everyone else.
>
> The 'world expert' I went to for another opinion while I was changing doctors. I have pretty much accepted his observations as accurate, to a point. I found the pdoc I am currently seeing because he was/has been very helpful to a son of a good friend and is very straight forward and creative in his thinking. He says he doesn't know what to do next, he lists possible things, he 'perked up' when I commented again on my tongue...I just know these things happen and it has been going on now for so long, I am just glad I am in the supportive family I am in.
>
> On the form he filled out for the disability insurance he stated unlikely to get better.
>
> I have considered whether or not I should go to the Mayo Clinic, start over with another pdoc in town, start over with a different family doc, but I get so tired of thinking about going over all this again. As a friend of mine said, the part of medicine she doesnt like is the 'read the notes when the patient is in front of you'. All of my blood tests come back in normal range. I have not done an eeg, mri, spect...blah blah blah. As my pdoc says, they would probably do one or two things...tell you something is wrong with your brain, which you already know and accept and show us where we can go in and take a look and take something out...at which point I grimaced and said, no thank you.
>
> It is raining and blowing today, my 8' volunteer sunflowers are toppling over and I am one by one hanging them up in the cottonwood tree to dry out so the chickadees can eat them this winter.
>
> I had a hard time resting earlier because they are now all in their flock (they separate during the mating season) and where chattering in the trees by my window.
> >
> > - K.
>
> mouse fixing up a winter's nest
> susan C
Posted by Mitch on October 12, 2001, at 21:13:27
In reply to Keppra Journal, what is next?, posted by susan C on October 11, 2001, at 18:40:43
> Today, I start tapering down off of Keppra...it is clearly not working, we are done...I love that "we". I think the thing that worried me the most was the complete loss of appetite, second only to the unstability on my feet. There, that is my two and a half month scientific study of the new drug Keppra. Cam if you are out there...there is one for your files...
>Hi Susan,
So Keppra crapped out huh? I really don't want to try any new mood stabilizers for a while. There is another one however... zonisamide (Zonegran). That was the last one that was offered to me several months ago, I said no at the time. Maybe if you are feeling up to being a guinea pig again (or should I say mouse!), you can fill us in about that med. From reading about it and Keppra I think the Zonegran might work out better, FWIW. It is supposed to "facilitate serotonergic and dopaminergic neurotransmission", according to the monograph. But who knows where they pulled that out of. Keep us posted.
Mitch
Posted by susan C on October 12, 2001, at 21:49:46
In reply to Re: Keppra Journal, what is next? » susan C, posted by Mitch on October 12, 2001, at 21:13:27
> > Today, I start tapering down off of Keppra...it is clearly not working, we are done...I love that "we". I think the thing that worried me the most was the complete loss of appetite, second only to the unstability on my feet. There, that is my two and a half month scientific study of the new drug Keppra. Cam if you are out there...there is one for your files...
> >
>
> Hi Susan,
>
> So Keppra crapped out huh? I really don't want to try any new mood stabilizers for a while. There is another one however... zonisamide (Zonegran). That was the last one that was offered to me several months ago, I said no at the time. Maybe if you are feeling up to being a guinea pig again (or should I say mouse!), you can fill us in about that med. From reading about it and Keppra I think the Zonegran might work out better, FWIW. It is supposed to "facilitate serotonergic and dopaminergic neurotransmission", according to the monograph. But who knows where they pulled that out of. Keep us posted.
>
> MitchDon't know if it crapped out, as maybe it never really worked...Yeah, just a lab mouse, that is me...pdr and I did not talk about what is next...but I think I will just 'take the beatings' and flush my system of the 'poison' by drinking lotsa water and watch and wait if anything gets really bad. Just think, if it IS working, I will know with in the next month or so...Then, check in with him again about his 'intuition' ... I think I might continue to have my blood tested and go see other doctors just for entertainment. I think I will keep the Depakote and Ambien tho. Gosh almighty, imagine that, one less medicine to take...Thanks for the suggestion of another chemical to take...I wonder if I ate lots of lettuce...
w-a-o-ndering mouse
susan C
Posted by Mitch on October 13, 2001, at 12:03:45
In reply to Re: Keppra Journal, what is next? » Mitch, posted by susan C on October 12, 2001, at 21:49:46
> > > Today, I start tapering down off of Keppra...it is clearly not working, we are done...I love that "we". I think the thing that worried me the most was the complete loss of appetite, second only to the unstability on my feet. There, that is my two and a half month scientific study of the new drug Keppra. Cam if you are out there...there is one for your files...
> > >
> >
> > Hi Susan,
> >
> > So Keppra crapped out huh? I really don't want to try any new mood stabilizers for a while. There is another one however... zonisamide (Zonegran). That was the last one that was offered to me several months ago, I said no at the time. Maybe if you are feeling up to being a guinea pig again (or should I say mouse!), you can fill us in about that med. From reading about it and Keppra I think the Zonegran might work out better, FWIW. It is supposed to "facilitate serotonergic and dopaminergic neurotransmission", according to the monograph. But who knows where they pulled that out of. Keep us posted.
> >
> > Mitch
>
> Don't know if it crapped out, as maybe it never really worked...Yeah, just a lab mouse, that is me...pdr and I did not talk about what is next...but I think I will just 'take the beatings' and flush my system of the 'poison' by drinking lotsa water and watch and wait if anything gets really bad. Just think, if it IS working, I will know with in the next month or so...Then, check in with him again about his 'intuition' ... I think I might continue to have my blood tested and go see other doctors just for entertainment. I think I will keep the Depakote and Ambien tho. Gosh almighty, imagine that, one less medicine to take...Thanks for the suggestion of another chemical to take...I wonder if I ate lots of lettuce...
>
> w-a-o-ndering mouse
> susan CSusan,
I wished I could take a *little* Depakote without getting tremor. The Neurontin I take just doesn't cover my highs/mixed well enough by itself. It seems the N just needs a decent teammate. Lithium would do it but it rips my guts to shreds, Depakote would do it but it makes me shake/twitch, dulls my cognition and makes me fat! I haven't tried the *combo* of Neurontin + Trileptal yet, but Trileptal by itself made me uncomfortably *wired*. I might relent to a new *potential* MS like Zonegran later on for a trial, but if I do it will be after this upcoming seasonal depression clears up. I'll let ya know.
Mitch
Posted by Chloe on October 13, 2001, at 17:50:48
In reply to Re: Keppra Journal, what is next? » susan C, posted by Mitch on October 13, 2001, at 12:03:45
>It seems the N just needs a decent teammate. Lithium would do it but it rips my guts to shreds,
Mitch,
I totally agree that N needs a teammate. I suffered a few months just taking N as a mood stabilizer, and it was awful. The addition of low dose extended release Li has been a huge help.I would not assume that the extended release Li will "rip your guts to shreds". I have the most sensitive stomach out there. I get heartburn from Tylenol! But the enteric coating on the ER Lithobid makes it completely tolerable. I have no nausea or diarrhea and I don't even have to take it with food. When I took Li years ago, it was just a white powdered pill. It burned a hole in my stomach lining and I was nauseated all the time. The Lithobid form is a totally different animal with a constant level of mediction given over 8 or so hours. And if you really need something to augment the N, my vote is for the Li, esp over on of these "new" mood stabilizers. I found those, Triletal, Topamax, etc. to really have harsh side effects. But that is just my opinion since the advent of a simple coating around the Li.
Anyhoo, Take care Mitch
Chloe
Posted by Mitch on October 13, 2001, at 18:27:30
In reply to Re: Keppra Journal, what is next?-Mitch, posted by Chloe on October 13, 2001, at 17:50:48
> >It seems the N just needs a decent teammate. Lithium would do it but it rips my guts to shreds,
>
> Mitch,
> I totally agree that N needs a teammate. I suffered a few months just taking N as a mood stabilizer, and it was awful. The addition of low dose extended release Li has been a huge help.
>
> I would not assume that the extended release Li will "rip your guts to shreds". I have the most sensitive stomach out there. I get heartburn from Tylenol! But the enteric coating on the ER Lithobid makes it completely tolerable. I have no nausea or diarrhea and I don't even have to take it with food. When I took Li years ago, it was just a white powdered pill. It burned a hole in my stomach lining and I was nauseated all the time. The Lithobid form is a totally different animal with a constant level of mediction given over 8 or so hours. And if you really need something to augment the N, my vote is for the Li, esp over on of these "new" mood stabilizers. I found those, Triletal, Topamax, etc. to really have harsh side effects. But that is just my opinion since the advent of a simple coating around the Li.
>
> Anyhoo, Take care Mitch
> ChloeHi Chloe,
Lithium is not "off" the table altogether for me. I have never tried it *with* Neurontin. I have IBS and the diarrhea was the main reason I had trouble complying with Lithium. One thing that I have found out about Neurontin, it is the *only* mood stabilizer I have taken that doesn't jack around with my guts-in fact it seems to settle them down-MAYBE the Neurontin being taken along with your Lithium is keeping your stomach settled.....? Hmm, now you have got me thinking about this. Oh, as far as Lithobid goes-that was what I was on for years and years. The enteric coating *does* help, but for me it didn't help that much. I really believe that the Neurontin is the one that is stabilizing to the GI tract. Also Lithium clearly has an antidepressant effect over Depakote. I switched to Depakote from Lithium years ago and my depression *definitely* worsened. I'll keep you posted.
Mitch
Posted by susan C on October 15, 2001, at 14:53:03
In reply to Keppra Journal, what is next?, posted by susan C on October 11, 2001, at 18:40:43
I think the disorientation, dizziness is just as bad or worse going down on Keppra as going up...sigh, now about another week and a half, Depakote alone sounds pretty good now...just to be stable on my feet...not just in my brain/mood.
mouse spinning on a top
susan C> I hope putting all this here makes sense
>
> http://www.dr-bob.org/babble/20011007/msgs/80670.html Blood and Fire caught me procrastinating, or in the mid decision to put it more delicately.
>
> Today, I start tapering down off of Keppra...it is clearly not working, we are done...I love that "we". I think the thing that worried me the most was the complete loss of appetite, second only to the unstability on my feet. There, that is my two and a half month scientific study of the new drug Keppra. Cam if you are out there...there is one for your files...
>
> So, now, we watch, nes paus? and if it really was helping and I have the 'trade off', with side effects being better than illness...I am not looking forward to the next two weeks, but then, I have two, tall, frosty root beer floats. Anyone want to join me while I watch the sunset on another med?
>
> mouse in the tall grass
> susan C
>
> p.s. dentist and asthma dr donot see lupus. So the Vote is Two to MayBe One...
> but I do have two fillings and crown and lung xrays scheduled...
>
>
> > > > Susan:
> > >
> > > What's the next step?
> >
> > A six month base line
> >
> > Do you know?
> >
> > see above
> >
> > If you continue to have "manic" spells, what will they try next?
> >
> > 5% chance of MS, possible lupus (face flush, tongue discoloration-biopsy of tongue, 5 out of the 10 people he has sent to dermatologist had either lupus or leukeimia, I dont have leukeimia, he reassured me...but lupus keeps coming up. A spinal tap. He is puzzled. Is still convinced I have mood related to seizure disorder. Is not going to recomment higher than recommended dose of Keppra because he doesn't have enough experience...
> >
> > Would you say you are treatment resistant,
> >
> > This is what I have been told, as all meds I have tried have done little or nothing or worse
> >
> > or med resistant at this point?
> >
> > what is the difference between the last two above? I have been wondering about 'over medicated', but I am on relatively low dose of depakote...
> >
> > Then what's the next plan?
> >
> > wait and see ?? Take the beatings??
> >
> > Do you think some of the fatigue and general malaise is from the medication?
> >
> > I know some of it is from depakote, but then that is what changed when I started keppra, but then, with keppra, I have episodes where I have to lay down, but it is only for 15 to 60 minutes, then, like right now, I feel pretty clear, but these can happen many times a day...I have read that dizziness is generally not associated with a bad thing, more a side effect...however, it keeps me from being confident to go anywhere. Pdoc said the reason, number one reason people stop keppra is because of the sleepiness...I would agree...
> > >
> > > It doesn't sound the Keppra really has helped that much, but that's just my take.
> >
> > No, I dont think it has been of dramatic help. It has had some subtile changes...more clarity at times, for example. But I dont think it is the 'answer'. Unfortunately, I guess, I would only know if I stopped...then maybe I would see a difference. I am depending on my pdocs evaluation right now...6 month trial and to investigate the discoloration on my tongue. Watch and wait to create and have a base line.
> >
> > As it is, as I listed, it is also hard to say with what has gone on in general in the world...friend and I were talking yesterday about how I was first person she had talked to in the last week who understood what she meant when she said in the 70's why she had decided not to have children (nuclear war) all her friends are under 35, they never grew up with air raid sirens, civil defence drills, the treat of nuclear holocost...
> > >
> > > I can't recall - did you take Lithium?
> >
> > Yes, I took it many years ago, and had stomach upset, no real change in mood. When considering what to do after some results with depakote (8 months) we talked about it, I asked if (lithiums manufacture...) it had changed at all. Doc said it was his opinion it would not help to add it, my negative side effects would be the same. Now, this memory is just amemory of what happened...I have my med records from previous pdoc and still havent gotten the guts to read it...maybe I will send a copy to new doc...let him read them...give him something to do...add to his 'intuition'....
> > >
> > > Is this all complicated because of other medical conditions?
> >
> > It is possible that menopause is contributing, but, if so, that would not explain, why I have been this way my whole life...unless it has to do with fundamental female hormones. It is genetic I think, remember my bro, my dad? I can tell you those stories...Then there is asthma, acid reflux, otherwise I am regular healthy 50 year old.
> > >
> > > I'm looking for answers because it makes me sad that you are struggling with this so. Is there a doctor outside of your area who could help? Or was the "world expert" your best bet? I imagine "world experts" can be wrong...
> >
> > I appreciate your concern and I started this self education process of reading and posting and trying to get to know everyone on this board and it has been very helpful. Hard work tho. It is hard work to hit the submit button and confirm, click only once button, especially when I am feeling either depressed or manic I second guess myself and everyone else.
> >
> > The 'world expert' I went to for another opinion while I was changing doctors. I have pretty much accepted his observations as accurate, to a point. I found the pdoc I am currently seeing because he was/has been very helpful to a son of a good friend and is very straight forward and creative in his thinking. He says he doesn't know what to do next, he lists possible things, he 'perked up' when I commented again on my tongue...I just know these things happen and it has been going on now for so long, I am just glad I am in the supportive family I am in.
> >
> > On the form he filled out for the disability insurance he stated unlikely to get better.
> >
> > I have considered whether or not I should go to the Mayo Clinic, start over with another pdoc in town, start over with a different family doc, but I get so tired of thinking about going over all this again. As a friend of mine said, the part of medicine she doesnt like is the 'read the notes when the patient is in front of you'. All of my blood tests come back in normal range. I have not done an eeg, mri, spect...blah blah blah. As my pdoc says, they would probably do one or two things...tell you something is wrong with your brain, which you already know and accept and show us where we can go in and take a look and take something out...at which point I grimaced and said, no thank you.
> >
> > It is raining and blowing today, my 8' volunteer sunflowers are toppling over and I am one by one hanging them up in the cottonwood tree to dry out so the chickadees can eat them this winter.
> >
> > I had a hard time resting earlier because they are now all in their flock (they separate during the mating season) and where chattering in the trees by my window.
> > >
> > > - K.
> >
> > mouse fixing up a winter's nest
> > susan C
Posted by Krazy Kat on October 15, 2001, at 16:36:07
In reply to Re: Keppra Journal, UP or DOWN?, posted by susan C on October 15, 2001, at 14:53:03
> Are you going to go off Keppra then?
Posted by susan C on October 15, 2001, at 18:17:50
In reply to Re: Keppra Journal, UP or DOWN? » susan C, posted by Krazy Kat on October 15, 2001, at 16:36:07
Posted by susan C on October 21, 2001, at 19:47:26
In reply to Re: Keppra Journal, UP or DOWN?, posted by susan C on October 15, 2001, at 14:53:03
This going down on Keppra really has been worse than going up...symptoms are similar, dizziness, unsteadiness, sleep has been odd these days I wonder if my sleep dream mechanism is changing...Mila? When I do get up sometimes I get lost on the way out of the bedroom to the bathroom...sometimes I don't. Last night was progress. I think, I was lost and couldnt see the little lights I use like nightlights to guide me to the door and it hit me, Sue, I said to myself, you dummy, OPEN YOUR EYES...my dreams were so disturbing last night... wake up real early, very clear, then take meds and zonk out again, day is interspersed with these moments of clarity, deep clarity. Then the fog rolls in, like it does in the summer when the San Joaquin valley heats up and the ocean cold hits San Francisco Bay and the white cloud fog billows through the Golden Gate and I also was actually HUNGRY a couple days ago.
a laughing mouse...with open eyes
susan C> I think the disorientation, dizziness is just as bad or worse going down on Keppra as going up...sigh, now about another week and a half, Depakote alone sounds pretty good now...just to be stable on my feet...not just in my brain/mood.
>
> mouse spinning on a top
> susan C
>
> > I hope putting all this here makes sense
> >
> > http://www.dr-bob.org/babble/20011007/msgs/80670.html Blood and Fire caught me procrastinating, or in the mid decision to put it more delicately.
> >
> > Today, I start tapering down off of Keppra...it is clearly not working, we are done...I love that "we". I think the thing that worried me the most was the complete loss of appetite, second only to the unstability on my feet. There, that is my two and a half month scientific study of the new drug Keppra. Cam if you are out there...there is one for your files...
> >
> > So, now, we watch, nes paus? and if it really was helping and I have the 'trade off', with side effects being better than illness...I am not looking forward to the next two weeks, but then, I have two, tall, frosty root beer floats. Anyone want to join me while I watch the sunset on another med?
> >
> > mouse in the tall grass
> > susan C
> >
> > p.s. dentist and asthma dr donot see lupus. So the Vote is Two to MayBe One...
> > but I do have two fillings and crown and lung xrays scheduled...
> >
> >
> > > > > Susan:
> > > >
> > > > What's the next step?
> > >
> > > A six month base line
> > >
> > > Do you know?
> > >
> > > see above
> > >
> > > If you continue to have "manic" spells, what will they try next?
> > >
> > > 5% chance of MS, possible lupus (face flush, tongue discoloration-biopsy of tongue, 5 out of the 10 people he has sent to dermatologist had either lupus or leukeimia, I dont have leukeimia, he reassured me...but lupus keeps coming up. A spinal tap. He is puzzled. Is still convinced I have mood related to seizure disorder. Is not going to recomment higher than recommended dose of Keppra because he doesn't have enough experience...
> > >
> > > Would you say you are treatment resistant,
> > >
> > > This is what I have been told, as all meds I have tried have done little or nothing or worse
> > >
> > > or med resistant at this point?
> > >
> > > what is the difference between the last two above? I have been wondering about 'over medicated', but I am on relatively low dose of depakote...
> > >
> > > Then what's the next plan?
> > >
> > > wait and see ?? Take the beatings??
> > >
> > > Do you think some of the fatigue and general malaise is from the medication?
> > >
> > > I know some of it is from depakote, but then that is what changed when I started keppra, but then, with keppra, I have episodes where I have to lay down, but it is only for 15 to 60 minutes, then, like right now, I feel pretty clear, but these can happen many times a day...I have read that dizziness is generally not associated with a bad thing, more a side effect...however, it keeps me from being confident to go anywhere. Pdoc said the reason, number one reason people stop keppra is because of the sleepiness...I would agree...
> > > >
> > > > It doesn't sound the Keppra really has helped that much, but that's just my take.
> > >
> > > No, I dont think it has been of dramatic help. It has had some subtile changes...more clarity at times, for example. But I dont think it is the 'answer'. Unfortunately, I guess, I would only know if I stopped...then maybe I would see a difference. I am depending on my pdocs evaluation right now...6 month trial and to investigate the discoloration on my tongue. Watch and wait to create and have a base line.
> > >
> > > As it is, as I listed, it is also hard to say with what has gone on in general in the world...friend and I were talking yesterday about how I was first person she had talked to in the last week who understood what she meant when she said in the 70's why she had decided not to have children (nuclear war) all her friends are under 35, they never grew up with air raid sirens, civil defence drills, the treat of nuclear holocost...
> > > >
> > > > I can't recall - did you take Lithium?
> > >
> > > Yes, I took it many years ago, and had stomach upset, no real change in mood. When considering what to do after some results with depakote (8 months) we talked about it, I asked if (lithiums manufacture...) it had changed at all. Doc said it was his opinion it would not help to add it, my negative side effects would be the same. Now, this memory is just amemory of what happened...I have my med records from previous pdoc and still havent gotten the guts to read it...maybe I will send a copy to new doc...let him read them...give him something to do...add to his 'intuition'....
> > > >
> > > > Is this all complicated because of other medical conditions?
> > >
> > > It is possible that menopause is contributing, but, if so, that would not explain, why I have been this way my whole life...unless it has to do with fundamental female hormones. It is genetic I think, remember my bro, my dad? I can tell you those stories...Then there is asthma, acid reflux, otherwise I am regular healthy 50 year old.
> > > >
> > > > I'm looking for answers because it makes me sad that you are struggling with this so. Is there a doctor outside of your area who could help? Or was the "world expert" your best bet? I imagine "world experts" can be wrong...
> > >
> > > I appreciate your concern and I started this self education process of reading and posting and trying to get to know everyone on this board and it has been very helpful. Hard work tho. It is hard work to hit the submit button and confirm, click only once button, especially when I am feeling either depressed or manic I second guess myself and everyone else.
> > >
> > > The 'world expert' I went to for another opinion while I was changing doctors. I have pretty much accepted his observations as accurate, to a point. I found the pdoc I am currently seeing because he was/has been very helpful to a son of a good friend and is very straight forward and creative in his thinking. He says he doesn't know what to do next, he lists possible things, he 'perked up' when I commented again on my tongue...I just know these things happen and it has been going on now for so long, I am just glad I am in the supportive family I am in.
> > >
> > > On the form he filled out for the disability insurance he stated unlikely to get better.
> > >
> > > I have considered whether or not I should go to the Mayo Clinic, start over with another pdoc in town, start over with a different family doc, but I get so tired of thinking about going over all this again. As a friend of mine said, the part of medicine she doesnt like is the 'read the notes when the patient is in front of you'. All of my blood tests come back in normal range. I have not done an eeg, mri, spect...blah blah blah. As my pdoc says, they would probably do one or two things...tell you something is wrong with your brain, which you already know and accept and show us where we can go in and take a look and take something out...at which point I grimaced and said, no thank you.
> > >
> > > It is raining and blowing today, my 8' volunteer sunflowers are toppling over and I am one by one hanging them up in the cottonwood tree to dry out so the chickadees can eat them this winter.
> > >
> > > I had a hard time resting earlier because they are now all in their flock (they separate during the mating season) and where chattering in the trees by my window.
> > > >
> > > > - K.
> > >
> > > mouse fixing up a winter's nest
> > > susan C
Posted by Krazy Kat on October 24, 2001, at 10:30:11
In reply to Keppra Thursday night begins 0 mg, posted by susan C on October 21, 2001, at 19:47:26
Personally, I'm glad you're going off it - doesn't sound like a good med to me.
MHO.
- KK, will be glad when Mouse can see clearly again...
Posted by susan C on October 24, 2001, at 12:35:54
In reply to Re: Keppra Thursday night begins 0 mg » susan C, posted by Krazy Kat on October 24, 2001, at 10:30:11
Dreaming, dreaming, always searching, always hoping...some majic pill
misty eyed mouse
susan C> Personally, I'm glad you're going off it - doesn't sound like a good med to me.
>
> MHO.
>
> - KK, will be glad when Mouse can see clearly again...
Posted by susan C on October 26, 2001, at 12:37:20
In reply to Re: Keppra Thursday night begins 0 mg, posted by susan C on October 24, 2001, at 12:35:54
Well, I can definately tell I am going off of this med. I have really laughed a couple times over the last week, one time at myself...The dry mouth has returned, the dreams, the itchiness, the dizziness isn't so much and and, I actually am eating something. I am still not confident to walk very far and the couch and bed are awfully attractive. There were moments of deep clarity last week, which I really appreciated. Wondering, ah, this isn't depression, this isn't manic, this is just me. At least I think that is what was happening. When I was talking with a friend, which I haven't done in a long time, I was overcome by dejavu...so, me thinks i am gettting back to where I was. I think, maybe, the keppra did do something, but it also did much more that was not good. I wait to see for a while longer and talk to doc and then, then, into the incinerator it goes.
So what is next, add neurotin, lithium? nothing? intensive therapy, is all or some of this of this functional? start at square one? as the notable dr who posted...bipolar is notoriously difficult to treat. Wanted: (Cure for) Bi Polar Human, Male or Female or Confused, Height: 5' to 6'6", weight: Varies, Hair color and styles: varies, Behaviour: varies. Last seen dressed all in black sitting in front of a computer.
mouse looking for something to eat
susan C
Posted by susan C on October 29, 2001, at 17:35:27
In reply to Re: Keppra minus 24 hours tonight 86 days, posted by susan C on October 26, 2001, at 12:37:20
I decided I should post this experience here, because maybe it is med related...sorry to repeat myself...but soemthing happened today, that I have not experienced..not like this. I have, at times, had trouble with figuring amounts and spelling (who hasn't?) but this time, it was so odd...
I was writing a check for the lady who has been helping me with the garden. I had paid her previously for the first part. Now she was all done, and i had the bill for the remainder. I had planned this all out...I would take the first part add it to the second part and figure a tip and add the tip to the second payment...she just about choked when i handed her the check...i had added the total of both the charges plus the tip...I had double paid the first charge..needless to say, it was more than she was expecting...so, i sat and refigured it...and as she was leaving i said, if you get home and you figure out I have over paid you more than this way, put it forward to the next time you come (I am going to have her help me in the spring and fall, as my slave labor (son) will probably be gone...sigh....So, that is going on...and we are chatting and i am telling her about a web site, and i go get a piece of paper to write down the address...it isn't difficult, just six letters...but i try to write it at least six times and i cant get it...she is talking to me, i know part of it is concentration, but after the second, third, fourth, fifth....i mouth the words as i write and slow way down...finally I got it right...it took me at least SIX times..
it was all there, i could see it in my brain, but my hand was not writing right.
I have not had to do this kind of thing for a while...here on the boards, i mouth the words as i type and I can go back and re read, and edit. Can't do that in person.
Anybody? Can this be a side effect, a symptom, a a a a a a
confused mouse
susan C
> Well, I can definately tell I am going off of this med. I have really laughed a couple times over the last week, one time at myself...The dry mouth has returned, the dreams, the itchiness, the dizziness isn't so much and and, I actually am eating something. I am still not confident to walk very far and the couch and bed are awfully attractive. There were moments of deep clarity last week, which I really appreciated. Wondering, ah, this isn't depression, this isn't manic, this is just me. At least I think that is what was happening. When I was talking with a friend, which I haven't done in a long time, I was overcome by dejavu...so, me thinks i am gettting back to where I was. I think, maybe, the keppra did do something, but it also did much more that was not good. I wait to see for a while longer and talk to doc and then, then, into the incinerator it goes.
>
> So what is next, add neurotin, lithium? nothing? intensive therapy, is all or some of this of this functional? start at square one? as the notable dr who posted...bipolar is notoriously difficult to treat. Wanted: (Cure for) Bi Polar Human, Male or Female or Confused, Height: 5' to 6'6", weight: Varies, Hair color and styles: varies, Behaviour: varies. Last seen dressed all in black sitting in front of a computer.
>
> mouse looking for something to eat
> susan C
Posted by susan C on October 29, 2001, at 18:44:53
In reply to ever? never? had this happen?, posted by susan C on October 29, 2001, at 17:35:27
so, for those of you following this: pdoc says a month or so flush out..so, now on to the next thing. Journal End
A mouse drinking water
susan C... > I decided I should post this experience here, because maybe it is med related...sorry to repeat myself...but soemthing happened today, that I have not experienced..not like this. I have, at times, had trouble with figuring amounts and spelling (who hasn't?) but this time, it was so odd...
> I was writing a check for the lady who has been helping me with the garden. I had paid her previously for the first part. Now she was all done, and i had the bill for the remainder. I had planned this all out...I would take the first part add it to the second part and figure a tip and add the tip to the second payment...she just about choked when i handed her the check...i had added the total of both the charges plus the tip...I had double paid the first charge..needless to say, it was more than she was expecting...so, i sat and refigured it...and as she was leaving i said, if you get home and you figure out I have over paid you more than this way, put it forward to the next time you come (I am going to have her help me in the spring and fall, as my slave labor (son) will probably be gone...sigh....
>
> So, that is going on...and we are chatting and i am telling her about a web site, and i go get a piece of paper to write down the address...it isn't difficult, just six letters...but i try to write it at least six times and i cant get it...she is talking to me, i know part of it is concentration, but after the second, third, fourth, fifth....i mouth the words as i write and slow way down...finally I got it right...it took me at least SIX times..
>
> it was all there, i could see it in my brain, but my hand was not writing right.
>
> I have not had to do this kind of thing for a while...here on the boards, i mouth the words as i type and I can go back and re read, and edit. Can't do that in person.
>
> Anybody? Can this be a side effect, a symptom, a a a a a a
> confused mouse
> susan C
>
>
> > Well, I can definately tell I am going off of this med. I have really laughed a couple times over the last week, one time at myself...The dry mouth has returned, the dreams, the itchiness, the dizziness isn't so much and and, I actually am eating something. I am still not confident to walk very far and the couch and bed are awfully attractive. There were moments of deep clarity last week, which I really appreciated. Wondering, ah, this isn't depression, this isn't manic, this is just me. At least I think that is what was happening. When I was talking with a friend, which I haven't done in a long time, I was overcome by dejavu...so, me thinks i am gettting back to where I was. I think, maybe, the keppra did do something, but it also did much more that was not good. I wait to see for a while longer and talk to doc and then, then, into the incinerator it goes.
> >
> > So what is next, add neurotin, lithium? nothing? intensive therapy, is all or some of this of this functional? start at square one? as the notable dr who posted...bipolar is notoriously difficult to treat. Wanted: (Cure for) Bi Polar Human, Male or Female or Confused, Height: 5' to 6'6", weight: Varies, Hair color and styles: varies, Behaviour: varies. Last seen dressed all in black sitting in front of a computer.
> >
> > mouse looking for something to eat
> > susan C
Posted by SLS on October 30, 2001, at 7:38:34
In reply to Journal end, posted by susan C on October 29, 2001, at 18:44:53
Posted by Mitch on October 31, 2001, at 23:06:14
In reply to ever? never? had this happen?, posted by susan C on October 29, 2001, at 17:35:27
> I decided I should post this experience here, because maybe it is med related...sorry to repeat myself...but soemthing happened today, that I have not experienced..not like this. I have, at times, had trouble with figuring amounts and spelling (who hasn't?) but this time, it was so odd...
> I was writing a check for the lady who has been helping me with the garden. I had paid her previously for the first part. Now she was all done, and i had the bill for the remainder. I had planned this all out...I would take the first part add it to the second part and figure a tip and add the tip to the second payment...she just about choked when i handed her the check...i had added the total of both the charges plus the tip...I had double paid the first charge..needless to say, it was more than she was expecting...so, i sat and refigured it...and as she was leaving i said, if you get home and you figure out I have over paid you more than this way, put it forward to the next time you come (I am going to have her help me in the spring and fall, as my slave labor (son) will probably be gone...sigh....
>
> So, that is going on...and we are chatting and i am telling her about a web site, and i go get a piece of paper to write down the address...it isn't difficult, just six letters...but i try to write it at least six times and i cant get it...she is talking to me, i know part of it is concentration, but after the second, third, fourth, fifth....i mouth the words as i write and slow way down...finally I got it right...it took me at least SIX times..
>
> it was all there, i could see it in my brain, but my hand was not writing right.
>
> I have not had to do this kind of thing for a while...here on the boards, i mouth the words as i type and I can go back and re read, and edit. Can't do that in person.
>
> Anybody? Can this be a side effect, a symptom, a a a a a a
> confused mouse
> susan C
Susan,I know you are on Depakote (1G?), have you considered talking to your pdoc about maybe reducing the dosage a tad? It sounds like you are getting a lot of cognitive dysfunction from AC's. You might ask about Trileptal. It and Neurontin are the only two mood stabilizers that I have ever taken that *didn't* cause any cognitive problems (at reasonable doses). I haven't tried Lamictal, though.
This is the end of the thread.
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