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
poster:susan C
thread:72416
URL: http://www.dr-bob.org/babble/20010917/msgs/79003.html