Posted by CareBear04 on October 31, 2004, at 1:02:57
if anyone has any input on any of these subjects, PLEASE write back! i know this is a long post, but PLEASE at least try to skim.
as background, i've been feeling really sick for about six weeks now. it started with appetite loss and irritability and led to extreme mood instability, muscle twitching and tremors, hypoglycemia (never had this problem before), memory loss, perception and judgment problems, and just generally feeling horrible. during the summer, i was on 1800mg of lithium and had a level of 1.1. i couldn't tolerate the side effects at this dose, so i lowered to 1350, and i was on this dose for months and was really stable. when i started feeling out of control of my mood and responses, i asked my dr for a higher lithium dose, and she ordered a Li+ level to see how much room we had to increase. the level came back at 1.5 with no good reason to explain why a lower dose would lead to a much higher level. my dr told me to stop lithium for a few days, and three days later, i started again at 900mg. right away, i started feeling toxic again, and when i saw my dr three days after restarting, she saw that i had all the symptoms-- couldn't stand without falling over, couldn't walk straight, couldn't focus my eyes, etc-- and she told me to stop lithium and wait for the levels to drop. she didn't order a level or other blood work until two days later. i felt worse and worse over the next few days, and the morning i got the blood drawn, i actually felt better. the labwork came back stat and showed that my lithium level was over 2.5. my other bloodwork didn't show any explanation for how the level could be that high three days after my last dose. i was in the hospital until the levels came down, but the drs had no explanation and didn't really look. i've had outpatient visits with my PCP, my GI dr, and my pdoc, but there's still no good theory as to what's going on.
last week, i had an upper endoscopy (unrelated to lithium toxicity) and they had trouble getting the scope through. when i still had what felt like strep throat x 10 a week later, my GI dr got me in to see an ENT specialist. by passing some instrument through the nose, he was able to see lacerations and abrasions in the throat. he put me on antibiotics and recommended continuing narcotics for a few weeks or until the throat healed. since i can't swallow, the drs are pushing the pain pills so that i can hopefully hydrate and eat some while the pills are working. i've been taking vicodin, darvocet, and percocet as well as throat lozenges that numb the mouth. it's still really hard to eat and drink, especially anything hot or cold or pretty much with flavor.
in general, i just feel really sick. i'm a student and have been trying to keep up with classes while all this has been going on. the specialists last week noticed that my heart was going really fast and skipping beats, but they referred me back to my PCP who won't be seeing me for another week and a half. i've lost about 15 lbs over 5-6 weeks, almost 15% of my starting weight. worse, my mood suddenly plummeted a few days ago. i had been pretty good about keeping up a good attitude, but all of a sudden, depression blindsided me and i can't see anything better ahead. in the past two years, i've had two serious suicide attempts, and i've been down this road before. the further into the hole i slip, the harder it is to pull myself out. i'm freaked out because i don't know what's going on with my body, and i don't know what these drugs are going to do to me. altogether, i'm on over 15 meds, about half psych and half medical, prescribed by 5-6 different drs and filled at as many different pharmacies, and there's no predicting the interactions. i'm on a lot of ativan, xanax, and klonopin, on vistaril and propranolol. throw in the narcotics and how i'm feeling physically, and i go to bed at night not sure whether i'll wake up. i don't have any active plans yet, but i'm so spacey and forgetful and hopeless right now that i could accidentally take too many pills. if i ever get really suicidal, i have tons of benzos, sleeping pills, narcotics, and alcohol, more than enough to finish the job. i know enough to know that i need to make myself safe.
few if any drs will support my going back on lithium right now because it's too risky. no one knows why the levels were so wacky or what will happen if i take some now. at minimum, they will require lithium levels every 2-3 days, and even with that, they're still really worried. in the worst case, lithium could kill me, but not taking it also kill me. today, a med resident and good friend suggested ECT. i hadn't thought about it until then. a few months after my first suicide attempt, the pdoc i was seeing suggested ECT, and i think i said, "no way in hell." the fact that i'm seriously considering it now is pretty telling. for one thing, circumstances have changed. whereas before, i had been on 3-4 meds total, now i've been on dozens including all the popular antidepressants, depakote, neurontin, and lamictal, all the atypical antipsychotics except geodon, plus some of the older APs like haldol and trilafon. i haven't tried tegretol and trileptal, but i've been told they're more like depakote, that they don't help depression, and that they're better for rapid-cycling bipolar types, which i'm not. i started lamictal over a month ago, and i'm just getting up to 100mg. i have at least another month to work up to a therapeutic dose, and i can't wait that long for a drug that i don't even know will work. my friend said, "sure there's memory loss with ECT, but it's usually not permanent, and you have that already with your meds." that was a pretty compelling argument. i don't know much about ECT, but i think it's actually a safer option than restarting lithium, especially since they monitor vital signs, heart rhythms and brain activity carefully with each treatment and can compare over time, whereas with the lithium, all we'll have is a level that doesn't give info about the mechanisms going on. i heard there's a complicated process for getting approved for outpatient ECT, so it's better to go IP. i swore i'd never spend time on another psych ward, but at this point, the prospect hardly bothers me. i feel so wiped out that a hospital could be a good place to get away from school and everything else and hopefully start to feel better.
if you've read this far, THANK YOU! if you have any advice or experience, please let me know! i have a bunch of drs but no treatment team and no one coordinating my care, so i'm scrambling to try to hold everything together, and i'm at a loss.
many thanks! cb
poster:CareBear04
thread:409440
URL: http://www.dr-bob.org/babble/20041029/msgs/409440.html