I've been on lithium for 12 years. It was started before I was diagnosed with bipolar and it made it easy to see that I had bipolar by reducing the frequency of the mood swings enough to see that my mood was wildly variable week to week. Prior to lithium I cycled so much that I just seemed moody all the time. Lithium has in some ways been my most valuable med. I've been off it for a few months before and the end result was that I learned "I don't feel like me without it". I can't explain what is different aside from my cycling is a bit slower on it but there is something in it that my body needs.
Unfortunately my body also has issues with it. I had been on it 4 years when I was toxic the first time. That time was a long toxicity because I kept taking it several days and then vomiting, bringing my levels down so that they seemed normal as far as we could tell. I was under immense stress and so the upset stomach and vomiting seemed to make sense as physical reactions to that. It wasn't until I stopped working and forced the meds to stay in for 5 days so that I could have labs done that we finally learned that I was toxic. For about a year after that we fought with it, trying to keep my levels steady and not toxic while still getting a response. We tried stopping it but I missed it too much. Finally we changed to a less commonly used form and a weird dose and I was ok for a long time.
The 2nd toxicity was just over 2 years ago. It was totally different. I didn't realize anything was wrong until I was hallucinating and even then I kept telling the ER doctors that I was not toxic because I wasn't sick until I started seeing for myself that I was failing neuro exams repeatedly and then I could see little warning signs. Going back on lithium after a 2nd toxicity isn't commonly done but I was allowed as long as I was good about hydration and labs because I benefit so much from it.
We were keeping my level very low for a long time. The last time I was hospitalized the dr. tried to pull it up a lot which worked for a short while and then my level went back to being pretty low. Over the last year it has drifted up more but since I've felt ok Dr. Brain was ok with that as long as it was monitored. After my last labs in November she told me that my kidney function had leveled off after climbing slightly over the last several labs. It was good that it was leveling off but she was warning me that my love affair with lithium isn't going to last forever. The hope is that it will be good for another year or two and that something new will stabilize it.
Well, I suspect we reached the end. Last Friday I go sick out of the blue and spent the night with vomiting and diarrhea. I thought it was just a virus and went on with life. Until today. I woke up nauseous but ignored it. I went with my mom to do a few errands and on the way back got so sick she had to pull over in our driveway for me to vomit (after flying to get to our driveway). I made it inside and let my cat out of her carrier (she had surgery yesterday) and proceeded to vomit non-stop for an hour. I have bruises on my head from the toilet seat. I also had horrible diarrhea. Details aren't needed but we'll just say that I was sicker than I've ever been before except maybe a tie with the 1st toxicity. There have been 2 times that I have vomited so hard that I have peed myself and been so sick I just sat/laid there in it. Toxicity #1 and today. Not a good sign. I have numerous symptoms of toxicity along with "been there, done that" and the exact pattern that I had the first time: vomit/diarrhea badly so levels come down, feel ok, levels hit stable and get violently ill again. I emailed Dr. Brain and am not taking anymore lithium until I hear from her. I didn't see any point to going to the ER for a level since the level would have been lowered drastically by how sick I was. Fluids probably would have been good but I'm slowly getting them in.
Regardless I both look forward to hearing from Dr. Brain and I dread it. Combined with my kidney function showing strain and this (probably) being a 3rd nasty toxicity I have a bad feeling that I won't need to pick up the lithium refill I ordered last week.
And now I am so extremely tired but have to wait a while to give the cat pain meds and then sort through meds for what I'm willing to take. Then it will be hard to sleep because I'm not putting nauseating meds in my belly which means I'll mostly be trying to sleep from some klonopin and zofran. I can't seem to get enough fluids in so that isn't helping me feel great either. (And is a good thing about probably not sleeping well).
I just wish I could pretend this didn't happen.
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2 comments:
I am guessing that being sick made you toxic. But perhaps a 3rd toxicity is too much risk. Have you tried tegretol or trileptol? I found Tegretol to be a very good mood stabilizer for me. I think trileptal was but I am not sure- I was on Zyprexa at the same time so I don't know. I never found Seroquel to be that great a mood stabilizer, I could get pretty crazy on it. But that is just me- and unfortunately in psychiatry, everyone is different. Trial and error. Will it ever get better than this?
Nope, that was the toxic. We don't know why I get toxic but aside from the first time which may have been preceded by illness (no direct connection though) we've never known why. It just happens rather suddenly and then I can look back and see the warnings (this time the warning was being sick last weekend which was undoubtedly when my levels started to climb but it's impossible to know that is happening at the time since catching things is normal.). There really isn't anything I know of that could have affected it aside from I took ibuproferon once for a migraine mid-week. But I've been doing that, with permission, for many months from time to time. I won't be anymore. Thank God Medicare covers one of the 2 triptans I can take at a really low price. I just have to get my script changed. For months I've held onto my one free Relpax, fearful that if I used it I would need it and not be able to buy a $40 pill.
Trileptal was a disaster. We tried it when I was off lithium after toxicity #1 and it was more sedating that almost anything else I've taken. I was taking 1/32nd of a pill and still couldn't function. I haven't tried tegretol but I think there is a reason; either the trileptal reaction or something else.
I am going to get all the lithium out of my body and then start over with a micro-dose in a week or so. Dr. Brain is out of town and doesn't have access to my chart right now but I am supposed to see her this week anyway so we'll discuss this and go from there I guess.
I did go get labs done. I had an order for baselines since I hadn't had them done in 2 years. I used them to make sure I'm hydrating enough (it's slow) and don't need fluids. I hope Dr. Body gets the email that they'll be messed up before he gets the crazy labs. I'm definitely still dehydrated; they had a really hard time getting blood. But I keep drinking and am not hugnry for much yet so hopefully this will improve.
Stupid meds.
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