Posted by BearNCrow on December 22, 2010, at 22:13:32
I hope that this message thread is allowed to stay up under Medication, as ultimately this is an issue dealing with medications, their effect on the brain, the safe stopping of them, the need to sometimes stop them cold turkey, and the brain's reaction to both the short term and long term use of medications, regardless of the actual need for them in the beginning.
I'm 11 days post stopping lithium 1200mg cold turkey due to possibly months of chronic lithium toxicity and a few weeks of acute lithium toxicity. Those final weeks I exhibited the majority of commonly known symptoms of acute lithium toxicity including: persistent diarrhea, vomiting, severe nausea, trembling and tremors, moderate to severe disorientation, involuntary frequent muscle twitching, blurry vision, dizziness, drunk walk, slurred speech, irregular and sometimes extremely rapid heartbeat. Things went downhill at exponentially enormous speeds beginning around 12/6. Increasing disorientation by the day, increased fatigue, inability to recognize separate heart beats at times. By the end of that week I was sleeping up to 18-20 hours a day, so I wasn't drinking, and the dehydration pushed the lithium toxicity to a crisis point. That weekend I was so disoriented that I didn't recognize my home or remember that my wife is pregnant. She was out of town, so I was alone and honestly feel lucky to be alive today. Sunday night 12/12 I was sooo sick and kept saying over and over "I don't know the world I'm in" as I shivered from chills uncontrollably for hours. My wife encouraged me not to take lithium that night as I had one swallow in me where MAYBE I could keep down a few pills. She may have saved my life. By the next evening I already felt slight improvement. 11 days off of lithium and I am a new person. It's kind of like slowly waking up. My wife and others are saying I'm more engaged and talkative, the emptiness and glaze in my eyes is gone, I have a personalty, etc. It is hard to have a memory of the last weeks and months but no emotional imprinting of anything that happened.
Why didn't I call anyone or go to the ER? I am in the throws of deconstructing my bipolar diagnosis. My entire medical, both mental health and non mental health, treatment team is on board. There are too many signs that the diagnosis was probably wrong from the beginning, hence why maybe 15 psychiatrists and 30-40 medications in 11 years haven't been able to help me. Earlier in the week before the weekend I believe I almost died, both my therapist and psychiatrist were totally on board with me titrating off of meds, both saying they have had doubts all along. But when I call them and complain about these symptoms of lithium toxicity, my therapist says I need a residential program and my psychiatrist says well, you can always go to the ER, but if you do, go to X because they have the best psychiatric unit in the city. Barf! So I literally was white knuckling it, alone, afraid, but taking my damn meds every day and night as directed because I'm a good patient, not realizing I was killing myself. I intentionally overdosed on lithium in 2002, and I had a bruised elbow then compared to how sick I was for weeks and maybe months. No one has checked my kidney function, but I think it is clearly warranted. The stigma of severe mental illness, whether I ever was it or not, will forever haunt me which is sad, but I will be an advocate regardless.
I spoke with my psychiatrist from the last city I lived in that first night post lithium discontinuation, and she predicted rebound mania. Well, I've never been textbook manic, and hypomania is highly subjective and relative, which leaves me with depression and anxiety, and I'll get to that later. 11 days and no rebound mania. In fact, I'm sleeping 12+ hours a night and am tired all day! The biggest problem was that the first 5 days off of lithium I had on and off debilitating anxiety, and I cannot handle anxiety. It is my most feared mental state and I can remember being anxious as young as 6 or 7. So I had already gone off of klonopin 2mg at night, but finally couldn't take it any longer, knew that I wasn't trying to prove anything to anyone including myself, so I began taking 1mg in the morning and 1mg at night, and the anxiety is gone completely. So I am on klonopin, 200mg of seroquel, 600mg gabapentin in the morning and 1800mg at night (gabapentin is intended for relief of nerve pain in the morning and for pushing me into stage 3 or 4 sleep at night because a recent sleep study shows that I'm in stage 2 sleep all night, therefore never resting, so what are the long term effects of sleep deprivation, and all this time I've claimed I dream all night and doctors say that's impossible...well, it is), and that's it. This is nothing compared to the majority of the last 11 years, and I am fine. 200mg of seroquel makes me high as a kite, like smoked a joint high, red eyes, chatty, munchies, WTF?! I used to take 1000mg of seroquel with no effect! Really tired, probably from the gabapentin, which they want to increase, but no anxiety, no mania, no hypomania or mixed states or agitated mania or irritable mania or anything, and no depression. So what now?
I want to make sure folks know that I'm not anti-meds, anti-psychiatry or anti-bipolar diagnosis. I know I'll always be on anti-anxiety meds, probably klonopin because of the potential bad effects of anti-depressants, and I'll probably need some kind of mild mood stabilizer just because I've always been moody, and I've been on meds for 11 years that I may not have needed but that my brain is accustomed to in order to "function" now. I'd love to be treated for my ADHD, but again, stimulants could be bad for me. I think psychiatry is a perpetual new frontier, and I at the end of the day respect it. And if I go off meds and flip my sh*t and have to go on meds and be hospitalized, well, then I have a baseline for the first time in 11 years which would be a beautiful gift.
This is sooo incredibly long, so I'm stopping for now and posting this. Any comments, feedback, opinions, experience, strength or hope would be greatly appreciated. Has anyone ever been wrongly diagnosed and wrongly medicated for 11 years or whatever? How did you go about going off of meds? Any tips? Can a person be diagnosed as bipolar and then not be bipolar? I don't need to ask more questions. You folks are smart and can have at it!
Here are all the missing pieces that I want to write about; please tell me where on dr-bob to post them:
1. reason I don't think I'm bipolar is because I'm a transgender man and I believe most of my anguish and illness has been because I lived 33 years in the wrong body!
2. neuro-cognitive psychological testing showed some bad impairments, but I was lithium toxic when I took the 7 hours of testing, so I have yet to read the final report
3. depression started a month after I got my period which happened in July and by the time 6th grade started after Labor Day I was becoming severely depressed
4. give me testosterone therapy and some surgeries and I'm happy as a lark but possibly have irreversible brain damage from 11 years of lithium use
5. I am starting a DBT group in mid January
6. I have to find a new therapist now when more sh*t has gone down in my life in the last 6 months than 33 years combined...yet I'm stable as a rock and handling the stress and blows beautifully
7. severe sleep problems
8. severe degenerative disc disease and am probably having back surgery in January or February (I'm 33)Again, I could list more, but I won't. I have always trusted this website when in need. You all know far more collectively and in some cases individually than the finest doctors. So please, have at it, ask anything, say anything with respect, tell me where to explore the other issues I listed, etc. I would like to address the above stated issues in this thread since it's all related, but I respect Dr. Bob too.
Be well,
Ami
poster:BearNCrow
thread:974354
URL: http://www.dr-bob.org/babble/20101218/msgs/974354.html