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Mood Disorder Community
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Author |
Topic |
Cuzi
Starting Member
4 Posts |
Posted - 03/14/2006 : 13:38:29
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I recently discontinued my lithium. I had been on Lithium for about 10 years and under Dr. supervision tapered off (dose was 1500mg a day) over 5 weeks. I have been Lithium free since Feb.14, and doing overall well mentally, it has been work. I feel like I have gotten every cold or virus that has come along, and even more so I have been VERY VERY tired. Is there anyone else who has encountered this or similar I can not find much about the effects of discontinuation, other than many have to go back on Lithium or something else. I just want to know what others have had to deal with. |
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EmergingArtist
Incredible Member (2000+ posts)
9136 Posts Gratitude: 822
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Posted - 03/17/2006 : 08:04:45
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Cuzi,
I am very interested in what you have posted. (sorry, I don't have info to offer you tho). I have been on lithium on and off for 13 years. (I currently take 1500mg/day). I try to stay current on the options available to me for treatment. I am curious: why did you decide to discontinue lithium? Do you take any meds at all?
Please let us know how you are doing.
If I can't weed out my fears, I'll grow larger my courage. -EA |
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Cuzi
Starting Member
4 Posts |
Posted - 03/23/2006 : 07:39:48
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I decided to go off for a few reasons. One..I had never gone off of it. Part of it was curiosity. I had grown to accept the side effects but never liked them. Weight gain, thirst, sweating like crazy, and tremor at times, the usual side effects. I am far more in tune to my body and self than I was at 18 years old. I understand the effect the disorder (Bipolar II) has with me more than I did 10 years ago. I do know that the statistics are against me, and that the probability of never going back on anything for the Bipolar is unlikely. But I decided at this point in my life I needed to see. I am hopeful I can do it, as well as optimistic (most of the time :)) I also have a partner in my life that is patient and understanding, let alone knowledgeable. In the last 10 years I have gone through a lot personally aside from the disorders, a divorce, a falling out with my family, and a making up with the family. (The family thing had to do with the divorce.) Growing up and leaving home and family and friends, and returning and all kinds of stuff. Lithium is harsh and had been harsh on me, I have become aware of that more so in the last couple of years. I can feel when I hit toxic. I am also on Luvox (900mg) and Ritalin (25mg 3x day) I have not changed those two while discontinuing the Lithium. Not yet. I have been on the Luvox for about 11 years and the Ritalin for 7 or so years, then went on Adderall for 2.5 years. I had rage issues with the Adderall and went back on the Ritalin which is not great but it will do for the time being. My other diagnosis is OCD, ADHD and depression. I was diagnosed at around 18, I was in college. I would like to eventually go off the Luvox too. Just to see what life is like without it. I never really thought I would be a person to even try going off the meds. But I have come to a place in my life where I want to know if I can do it. So I have started working out as much as I can, and eating better. I feel better, as I said before I am tired. But my resistance seems to be a little taxed too. I am guessing the Lithium effected more than I realized. My hair is curlier since going off..it has not been like that since I was in high school. My face has broken out, again, have not had that since high school. My sex drive has increased as well. I know it will just take some time to get readjusted to myself. And I keep reminding myself when I have hard days that it will get better. I don't know if that is true, but I tell myself it. I need to believe it too. It seems to help. I want to be off the meds, I do not like them, I don't like having to be on them. However I have accepted that I might need to be on them to have any quality of life. So I keep an open mind, and I shall wait and see what happens. I am glad I did it, a week from now I might have changed my mind, however I do not think I will regret trying it. Today I go and see my shrink for the first time since going off of it. I am curious what he says. I am determined, and he knows it. I am educated regarding my decision and I understand the hurdles. I do know my limits, and do not want to jeapordize the positives in my life i.e., my relationships , work, and well being. Sorta like a science project I keep thinking. I will let you know.
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Cuzi
Starting Member
4 Posts |
Posted - 04/10/2006 : 05:48:46
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I ended up going to my general practitioner and got blood work done to see why I was so very exhausted. It seems that I have Epstein-Barr Virus. And that can cause exhaustion.
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automatic
Super Member (250+ posts)
342 Posts Gratitude: 8
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Posted - 04/12/2006 : 19:42:31
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HI CUZI ALWAYS THE BIG ?????? I WOULD HAVE YOUR DOCTOR CHECH YOUR THYRIOD LEVELS, LITHIUM HAS CAUSED MY TO BE LOW WHICH CAUSES EXHAUSTION, DRY SKIN, DRY HAIR ECT... WORTH LOOKING INTO, IT'S JUST BLOOD WORK.
Shelley |
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Mah
Starting Member
1 Posts |
Posted - 10/27/2008 : 19:48:00
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Okay. It often seems part of a pattern for me to want to go off lithium (not to mention my other medications). This seems to happen during -- well, I don't know when it happens. I tried a couple of times before, but it was not successful for a number of reasons, perhaps, perhaps because I tried to go off too quickly.
I wonder these days, and I am not squelching the thought or dismissing it, if I was in fact incorrectly diagnosed and I have been putting up with these f.ing medications for 20 years. During my episode -- 20 years ago -- I have realized that I was constantly aware of what I was doing and in fact had good reason for what I was doing. Moreover, I was able to turn off, shut down, my mania when I felt that I had gone far enough. Is that kind of control consistent with a bipolar I psychotic episode?
There are often two truths, opposing truths, to the same predicament. It is true that pharmaceuticals help people; but it is also true they control people. Those are crude categories. But do you know that as recently as the 20th century, the mentally ill were sterilized?
Hmm, what does that suggest about the treatment of mentally ill patients now? Is it categorically better?
I read about a woman who went off lithium. My biggest problem is I feel that pharmaceuticals, specifically lithium (and perhaps lamictal) are putting a big wet blanket over my brain so that I can not write well. When I was off lithium, when I went off lithium in the past, I was able to write very well. But then I had judgement problems, I think.
This is not an easy problem. Because my life goal is to write well, write something beautiful. But I feel now no spark, unable to absorb good writing, and unable to write good, sharp sentences. My power of something is missing.
I write and I write and I try to slog my way through. But it is as if I am slogging through a marsh. I want to run fast on hard, dry ground. But instead I can hardly run at all, slogging through this marsh.
Plus, the depression. I never really encountered serious problems until that episode landed me in the hospital and then I began my lifelong crusade against my sanity, or for my sanity, however you want to take it.
I wish my mind could be free. Briefly, last year, I was on lamictal and abilify. I could write much better. Then my doctor here put me back on lithium. Now I can hardly remember things, my memory is going, and I try fruitlessly to write.
My life's dream is going to be thwarted by this drug -- or at least that is the thought I am having right now. It may be different. I can't really see myself going off of lithium now. But I wish there were someone who could help me problem solve about this issue. It is a big issue. I have submitted my writing, done at different times, to writers to look at and judge which is better, which has more potential. The funny thing is that a woman who wrote a memoir about bipolar said that the piece written on lithium was better. While a published short story writer and English professor said the piece written on abilify was better. |
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sunflower823
New Member
55 Posts Gratitude: 33
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Posted - 01/10/2009 : 04:24:14
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Cuzi,I couldn't sleep AGAIN tonight! So I jumped on my computer and came across your blog. I was diagnosed back in 2001. One month after I left my husband. I took our 2 little ones with me. I realized there was something wrong with me when I started experiencing crazy thoughts, uncontrollable anger, and was very impulsive. It was just the beginning of my life long nightmare!!! I have been diagnose as Bipolar manic-depressive with anger & impulse disorder. I have been living in this nightmare every since. I've been on every med, and I also been on many combinations of meds. Right now I'm on Lithium 600mg daily & Lamtical 300mg daily for my bipolar. I'm also on Levothyroxine 75mcg daily for my thyroid disorder.(Which is caused by being on Lithium.) Trust me when I say I know how you feel. Many times in my life I just wanted to kick Lithium to the curb, but fear has always stopped me. In 2004 I finally wasn't afraid. I realized then that someday I would have my life back. That I'd be completely off Lithium and using other medications or alternatives, to substitute for it. So far I'm proving that theory. I'm now only taking 2 meds for my mental illness. And successfully I have manage to decrees my Lithium from 900mg to 600mg. I know now that being completely off Lithium is probably not going to happen, but I know I will be able to lower it significantly. Your not alone when you say, you want to be off Lithium. I too believe that there is something else out there for me besides Lithium.
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Cuzi
Starting Member
4 Posts |
Posted - 01/10/2009 : 14:59:27
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It has been some time since I last posted. My last post was March of 2003. MUCH has changes for me since then. I had just gone off of Lithium. I was not prepared for what was to come. I got sick. So sick that I had to go on disability from my job, I did everything possible to keep from being hospitalized (a big fear of mine and something I don't want to ever do) I was blessed that I had family to stay with as I got back to stable. During that time I would cycle 3 or 4 times a day. And my cycles were violent and destructive. Destructive to my body (at one point I had hit myself so hard and repeatedly with a door I moved the vertebra in my neck). I was self destructive and would go from "normal" to rage in moments. I also remember in one instance I was talking on the phone while driving flipped out, threw the phone and busted the windshield. There were many instances like this and I truly still thought at the time I was in control. My only focus was myself. I know my partner, pets and family suffered as well. My world fell apart and I was too sick to notice. Again I have to say haw blessed I am to have the family and partner that I do. With their support I took the steps to get better. That meant taking months off from my job. I could not stay by myself so I went to stay with family as I noted before. I was sad to leave my partner of 6 years to do this, but he was understanding and also so very supportive. Once I realized that I was in way way over my head, the journey was now for me to get better. That journey was long and so very difficult. I developed a sensitivity to sound. I had to wear earplugs to go to the grocery store, and at times I would panic so badly I could not function. I had to wear them when I went back to work for a while. And the anxiety and panic was a mainstay for months and months, medication helped some. I also lost about 75% of my hair, which was long and one of the things I used to think made me "pretty". That also could have been made worse by going off birth control. Even when I went back on it my hair was still falling out. It eventually stopped and now is better than before. So I am back on Lithium (1500mg a day). I have been for a little over a year. I am also now on Seroquel(300mg a day). I still take the Ritalin (25mg 3x a day) and I take Vistaril (50g as needed) for anxiety. I rarely take Ativan for the anxiety but it is there if I need it. I needed it much more at the beginning of this journey. I am also no longer taking Luvox. This was 2 years of my life that changed me forever. My medications, as much as I hate them at times, are a tool that allow me to be the best me. During this time I also realized I drank too much. I stopped that, began to eat better and moving more. And I lost 40 pounds and have kept it off. I started at 228 and now at a better 188. I am working on a daily basis to get more healthy. I can't say that I would not do it again. For now I am more knowledgeable about my disorder. I don't take my meds for granted like I did. It has taken a long time, and I have only a little further to go. But for the first time in 2+ years, I am doing things that I could not do for so long. Like meet friends for dinner and not panic. I am beginning to live a life that before this I did not appreciate. I hope that me telling my journey can help someone else. I can't tell anyone not to go off their meds to see what it is like. But please please be cautioned to what you are getting into. I could not be told by anyone, I had to learn for myself. And that I did. |
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ga peach
Starting Member
1 Posts Gratitude: 1
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Posted - 05/12/2010 : 06:45:50
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So happy to find this forum, i have been on lithium 1200mg a day along with 200mg of lamictal. my blood work last week came back thyroid levels low with mean high. i take .15 of synthroid. my doctor thinks it might be wise to weed off the lithium because it has such a effect on thyroid functions. i suffer from bipolar and was told that if you go off certain depression meds they might not work if you need them, i have also found that for me one doesnt work without the other. any thoughts?
sandy fraser |
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Estefania
Starting Member
1 Posts |
Posted - 01/11/2011 : 19:09:59
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I'm quite miserable right now. I just found out I have a bit of kidney damage after taking lithium for 20 years. Yes, 20 years. There were a few times I tried to take other things, like Depakote, but that made my hair fall out and made me feel weird. I've tried several other medications for bipolar, but I had the severe side effects. Now that I have the slight kidney damage, I can't take anything. I feel like I'm having severe withdrawal from not being on the lithium. Do any of you have any suggestions? I take Clonezepam and Paxil . . . but there is just nothing else I can take. I'm hoping the withdrawal goes away after a week. |
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ladadeeda
Starting Member
2 Posts |
Posted - 06/01/2011 : 06:28:29
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quote: Originally posted by Mah
Okay. It often seems part of a pattern for me to want to go off lithium (not to mention my other medications). This seems to happen during -- well, I don't know when it happens. I tried a couple of times before, but it was not successful for a number of reasons, perhaps, perhaps because I tried to go off too quickly.
I wonder these days, and I am not squelching the thought or dismissing it, if I was in fact incorrectly diagnosed and I have been putting up with these f.ing medications for 20 years. During my episode -- 20 years ago -- I have realized that I was constantly aware of what I was doing and in fact had good reason for what I was doing. Moreover, I was able to turn off, shut down, my mania when I felt that I had gone far enough. Is that kind of control consistent with a bipolar I psychotic episode?
There are often two truths, opposing truths, to the same predicament. It is true that pharmaceuticals help people; but it is also true they control people. Those are crude categories. But do you know that as recently as the 20th century, the mentally ill were sterilized?
Hmm, what does that suggest about the treatment of mentally ill patients now? Is it categorically better?
I read about a woman who went off lithium. My biggest problem is I feel that pharmaceuticals, specifically lithium (and perhaps lamictal) are putting a big wet blanket over my brain so that I can not write well. When I was off lithium, when I went off lithium in the past, I was able to write very well. But then I had judgement problems, I think.
This is not an easy problem. Because my life goal is to write well, write something beautiful. But I feel now no spark, unable to absorb good writing, and unable to write good, sharp sentences. My power of something is missing.
I write and I write and I try to slog my way through. But it is as if I am slogging through a marsh. I want to run fast on hard, dry ground. But instead I can hardly run at all, slogging through this marsh.
Plus, the depression. I never really encountered serious problems until that episode landed me in the hospital and then I began my lifelong crusade against my sanity, or for my sanity, however you want to take it.
I wish my mind could be free. Briefly, last year, I was on lamictal and abilify. I could write much better. Then my doctor here put me back on lithium. Now I can hardly remember things, my memory is going, and I try fruitlessly to write.
My life's dream is going to be thwarted by this drug -- or at least that is the thought I am having right now. It may be different. I can't really see myself going off of lithium now. But I wish there were someone who could help me problem solve about this issue. It is a big issue. I have submitted my writing, done at different times, to writers to look at and judge which is better, which has more potential. The funny thing is that a woman who wrote a memoir about bipolar said that the piece written on lithium was better. While a published short story writer and English professor said the piece written on abilify was better.
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ladadeeda
Starting Member
2 Posts |
Posted - 06/01/2011 : 06:30:16
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quote: Originally posted by Mahmah have you been doing okay, is the writing coming along any better, are you still on lithium. i can relate to what you're saying with my art i that's why i'm asking and have a concern for you
Okay. It often seems part of a pattern for me to want to go off lithium (not to mention my other medications). This seems to happen during -- well, I don't know when it happens. I tried a couple of times before, but it was not successful for a number of reasons, perhaps, perhaps because I tried to go off too quickly.
I wonder these days, and I am not squelching the thought or dismissing it, if I was in fact incorrectly diagnosed and I have been putting up with these f.ing medications for 20 years. During my episode -- 20 years ago -- I have realized that I was constantly aware of what I was doing and in fact had good reason for what I was doing. Moreover, I was able to turn off, shut down, my mania when I felt that I had gone far enough. Is that kind of control consistent with a bipolar I psychotic episode?
There are often two truths, opposing truths, to the same predicament. It is true that pharmaceuticals help people; but it is also true they control people. Those are crude categories. But do you know that as recently as the 20th century, the mentally ill were sterilized?
Hmm, what does that suggest about the treatment of mentally ill patients now? Is it categorically better?
I read about a woman who went off lithium. My biggest problem is I feel that pharmaceuticals, specifically lithium (and perhaps lamictal) are putting a big wet blanket over my brain so that I can not write well. When I was off lithium, when I went off lithium in the past, I was able to write very well. But then I had judgement problems, I think.
This is not an easy problem. Because my life goal is to write well, write something beautiful. But I feel now no spark, unable to absorb good writing, and unable to write good, sharp sentences. My power of something is missing.
I write and I write and I try to slog my way through. But it is as if I am slogging through a marsh. I want to run fast on hard, dry ground. But instead I can hardly run at all, slogging through this marsh.
Plus, the depression. I never really encountered serious problems until that episode landed me in the hospital and then I began my lifelong crusade against my sanity, or for my sanity, however you want to take it.
I wish my mind could be free. Briefly, last year, I was on lamictal and abilify. I could write much better. Then my doctor here put me back on lithium. Now I can hardly remember things, my memory is going, and I try fruitlessly to write.
My life's dream is going to be thwarted by this drug -- or at least that is the thought I am having right now. It may be different. I can't really see myself going off of lithium now. But I wish there were someone who could help me problem solve about this issue. It is a big issue. I have submitted my writing, done at different times, to writers to look at and judge which is better, which has more potential. The funny thing is that a woman who wrote a memoir about bipolar said that the piece written on lithium was better. While a published short story writer and English professor said the piece written on abilify was better.
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kakakaoo
New Member
66 Posts |
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warblaster
Super Incredible Member (10000+ posts)
112498 Posts |
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warblaster
Super Incredible Member (10000+ posts)
112498 Posts |
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warblaster
Super Incredible Member (10000+ posts)
112498 Posts |
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