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
poster:susan C
thread:72416
URL: http://www.dr-bob.org/babble/20011007/msgs/81035.html