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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 19 of 19. This is the beginning of the thread.
Posted by Cynthia on March 14, 2000, at 11:54:03
Ok> Forgive me if this sounds like rambling but I am trying to make sense of all of this. I am , for the first time since my diagnosis (rapid cycling bipolar I) a year and a half ago, questioning my need for medications. I have had these questions in my head and I asked them of my Psychologist and she asks questions back at me. If we control the bipolar part of me with medication-am I losing part of who I have been for the past 36 years? Does control of moods equal control of personality? And does control of moods equal control of intellect? What should I be expecting from these medications as far as symptom control? (I kow this is not supposed to be a cure) Do I get concerned over 1 or 2 manic episodes? What is normal? How do I keep from paying too much attention to how I feel? I feel like this "disorder" is taking over my life!I go to the Psycologist , I go to group, I go to the Psychiatrist, I do what I am "supposed "to be doing. Yet, I spend every night in the malestrom of rapid thought processing and just before dawn find sleep only to be awakend to start the day . I am sorry , I am sure that you are all aware of the patterns of which I speak. Then there is the dramatically decreased libido. I am just not sure that I am doing the right thing in taking these drugs and feeling that I am losing a part of who I am in the process. Any input would be greatly appreciated.
Posted by saint james on March 14, 2000, at 13:31:51
In reply to Help! I Want to go off my meds!, posted by Cynthia on March 14, 2000, at 11:54:03
> Ok> Forgive me if this sounds like rambling but I am trying to make sense of all of this. I am , for the first time since my diagnosis (rapid cycling bipolar I) a year and a half ago, questioning my need for medications
James here....
You cannot function as a normal person if you are rapidly cyclying so if you go off your meds how will you control this cyclying ? Stay on the meds, I would say.
james
Posted by Mark H. on March 14, 2000, at 13:53:39
In reply to Re: Help! I Want to go off my meds!, posted by saint james on March 14, 2000, at 13:31:51
Cynthia, I assume you've read Kay Jamison's autobiography, which is both infuriating and fascinating at the same time, but gives great insight into the charmed life of one of manic depression's most fervent clinical compilers and victims. If not, you might want to pick up a copy. Her book outlines the reasons for -- and the costs of -- staying on your medication.
Whether to go off or stay on your medication is ultimately a spiritual issue, in my opinion, as well as a practical one. If your depressions are disabling, if your manias are expensive and destructive, then I think it makes sense to accept the limitations caused by medication. Ironically, the desire to quit your meds is sometimes an indication that they are working.
On the other hand, if your symptoms are merely embarrassing and not job-threatening, marriage-threatening, or life-threatening, then why not? What advice would you give yourself? Who depends on you? What's at risk?
I'm sorry you're suffering. I hope it changes soon.
Posted by saint james on March 14, 2000, at 17:04:21
In reply to Re: Help! I Want to go off my meds!, posted by Mark H. on March 14, 2000, at 13:53:39
Also keep in mind that bi-polar is a progressive
illness that if left untreated gets worse (the cycles happen more often and the highs and lows
are much greater)james
Posted by vesper on March 14, 2000, at 19:34:13
In reply to Re: Help! I Want to go off my meds!, posted by saint james on March 14, 2000, at 17:04:21
> Also keep in mind that bi-polar is a progressive
> illness that if left untreated gets worse (the cycles happen more often and the highs and lows
> are much greater)
>
> james
What if I treat it then don't treat it, is it like they say about alcoholism, that if you stop treating it you aren't where you are when you started treatment, but the illness kept progressing while being treated and now will be worse than ever? Did that question make any sense whasoever?
Posted by AprilA. on March 14, 2000, at 20:07:29
In reply to Help! I Want to go off my meds!, posted by Cynthia on March 14, 2000, at 11:54:03
Hi Cynthia I think drugs are prescribed too blithely by most doctors. It is a drastic step to change someones way of percieving and feeling and reacting. To me it seems more like an amputation or severing a nerve than the much overused analogy of insulin for the diabetic.
When I take drugs I am changing the way I naturally am not restoring myself to "normal". Still, for now I am taking them because I want to be able to function more reliably. I feel less like myself but it's a sacrifice I am consciously making. I don't think the way I was without drugs was an "illness". It was a difference and it's not easy to live in this society if you're different.
Who decided what you're "supposed" to be doing? Have you gotten a second (or third) opinion? A lot of patient information is sponsored by pharmaceutical companies. Sometimes support groups get very invested in keeping everyone toeing the line and taking their meds. In the end you'll have to count the cost yourself based on your past experiences and the risks you're willing to take.
I think it's a really serious decision and hope you find a solution you're at peace with. A.
Posted by judy on March 14, 2000, at 20:12:52
In reply to Help! I Want to go off my meds!, posted by Cynthia on March 14, 2000, at 11:54:03
Ah, the eternal question. I share your diagnosis and have gone through the same crisis, more than once. For me, it was more these f*cking drugs aren't working, I'm getting fat- Zyprexa, the worst lard drug, and like you it was taking over my life. I think Mark raised some valid points- how destructive are your manic episodes, etc. Some people can get by with being "moody", but then there are some of us who ruin lives and land up in hospitals several times a year. I totally understand your frustration and doubt you will get any support from your therp or pdoc. If you have made the decision to stop, seek out someone experienced in tapering off patients on psychotropic meds and make sure you have a great deal of support. I have done it and if you need more information, let me know.
Posted by Cynthia on March 14, 2000, at 20:58:46
In reply to Re: Help! I Want to go off my meds!, posted by judy on March 14, 2000, at 20:12:52
St James. Mark, Vesper, April and Judy- Thanks to all of you for your responses. More information might be of use. My manic episodes have cost me dearly in bounced checks , speeding tickets ( and ultimately my drivers license) and hospitalizations (two last year). my depressive ( rage) episodes have also cost me in loss of possesions ( computer printer, several broken windows and also telephones.) I also was hospitalized twice for depression once last year and once just 3 weeks ago. I have gained 50 pounds on zyprexa and neurontin over the past 6 months.I am now on Topomax 400mg day and tegretol 2400mg day and Seroquel 200mg at bedtime (to stop rapid thought processing) . The stakes are quite high, I have been married nineteen years, I have nine children ages 16 to 3 (twins). I am a stay-at-home mom. I am trying to do the right thing, I don't want to screw things up again and I really don't want to end up in the hospital again. I feel like I need to do what I can to be even for my family but I don't want to lose "me " In the process.
Posted by Cynthia on March 14, 2000, at 21:23:40
In reply to Re: Help! I Want to go off my meds!, posted by Mark H. on March 14, 2000, at 13:53:39
Interesting- I am currently reading Kay Jamison's book. I am finding it interesting so far. I am also reading " We Heard the Angels of Madness" by Diane and Lisa Berger, also very interesting and from a good point of view (so far).
Posted by Cam W. on March 14, 2000, at 23:08:27
In reply to Re: Help! I Want to go off my meds!--James?, posted by vesper on March 14, 2000, at 19:34:13
Vesper - I think what James is trying to relate is the concept of 'kindling' (correct me if I'm wrong James). Each manic episode one has "kindles" the next. The next episode will come sooner and last longer. By interupting this process with meds (causing fewer manic episodes) the kindling is delayed. Therefore the disorder does not progress as fast. Fewer lifetime episode keeps the time between episodes longer and the length of each episode shorter. In other words, with the medications slowing kindling, the disorder will not become as severe as it could without medications in one's lifetime. But, even with good medication compliance, 2/3 of people with bipolar disorder will experience at least one break-through episode of mania in their lifetime, I hope I have related this clearly. - Cam W.
Posted by Janice on March 15, 2000, at 0:51:46
In reply to Re: Help! I Want to go off my meds!, posted by Cynthia on March 14, 2000, at 20:58:46
Hi Cynthia,You're manic-depressive, and unmedicated it seems to interfere with your life quite significantly.
You're taking the following medications: zyprexa, neurontin, Topomax 400mg, tegretol 2400mg and Seroquel 200mg.
Why exactly do you want to stop taking the medications?
*are the medications helping?
*are they helping enough, considering the side effects you are experiencing?
*is it the psychological aspect of being bipolar that makes you want to quit?janice
Posted by Chris A. on March 15, 2000, at 0:56:11
In reply to Re: Help! I Want to go off my meds!, posted by Cynthia on March 14, 2000, at 20:58:46
Cynthia,
I wish I could give you a hug and make the picture perfect. Somehow I have a deep sense that you'll do the right thing. You are valuable. Your husband and children are valuable. The meds and side effects get old. Anything that is pharmacologically active is most like going to have a few effects that are undesired.Keep keeping on! You're not alone.
Chris A.
Posted by saint james on March 15, 2000, at 10:28:46
In reply to Re: Vesper - About what James said., posted by Cam W. on March 14, 2000, at 23:08:27
>
> Vesper - I think what James is trying to relate is the concept of 'kindling' (correct me if I'm wrong James). Each manic episode one has "kindles" the next. I hope I have related this clearly. - Cam W.James here...
Perfect !
Posted by Cynthia on March 15, 2000, at 10:37:04
In reply to Re: Help! I Want to go off my meds!, posted by Chris A. on March 15, 2000, at 0:56:11
O K - I guess I am just tired of just being compliant and following every command. I am tired of taking every pill on time and never questioning why or never questioning the Psychiatrist. I know that there is so much at stake here,I am aware that this "illness" , disorder, whichever, has almost ruined my life so far, and I refuse to let it happen again. Why am I at a point now where I feel like if I try hard enough I can control it? Is this abnormal? Maybe , like Mark said, this is a sign that the Meds are working. How do you get past the feeling of being a lemming just following the 1984 Orwellian Soma crowd? It is a vast scary concept to be reckoned with. I am so grateful to all of you for your community and your wonderful fellowship with each other. It is amazing that you all care so much for one another. Thank you so much for taking the time to listen to my ramblings. I am having such a hard time questioning the Psychiatrist . Maybe it is working , what do I know. I am the "crazy" one right.? I am sure I would not know what to ask. I guess I just need to know what to look for and I am not aware of what these things are. Oh Well! More reading , More research, More things to race in my head at night. Thank you all so much for your input.I really do appreciate your wisdom. It seems that this wonderful community of yours, though not by choice, has some really wonderful people by chance.
Posted by michael on March 15, 2000, at 11:59:11
In reply to Re: Help! I Want to go off my meds!, posted by Cynthia on March 15, 2000, at 10:37:04
> O K - I guess I am just tired of just being compliant and following every command. I am tired of taking every pill on time and never questioning why or never questioning the Psychiatrist. I know that there is so much at stake here,I am aware that this "illness" , disorder, whichever, has almost ruined my life so far, and I refuse to let it happen again. Why am I at a point now where I feel like if I try hard enough I can control it? Is this abnormal? Maybe , like Mark said, this is a sign that the Meds are working. How do you get past the feeling of being a lemming just following the 1984 Orwellian Soma crowd? It is a vast scary concept to be reckoned with. I am so grateful to all of you for your community and your wonderful fellowship with each other. It is amazing that you all care so much for one another. Thank you so much for taking the time to listen to my ramblings. I am having such a hard time questioning the Psychiatrist . Maybe it is working , what do I know. I am the "crazy" one right.? I am sure I would not know what to ask. I guess I just need to know what to look for and I am not aware of what these things are. Oh Well! More reading , More research, More things to race in my head at night. Thank you all so much for your input.I really do appreciate your wisdom. It seems that this wonderful community of yours, though not by choice, has some really wonderful people by chance.
Cynthia -
As far as the "1984 lemming/soma" thing... in my view, some people need to take insulin, or thyroid hormones. Some need a SSRI or a MAOI. Big deal. Nothing wrong with that.
The trick is to figure out what will help while avoiding the "being in a fog" feeling, etc. And no one can make that call for us, we have to do that. Only you know how you feel.
And if what they've chosen isn't working, you need to relay that to them. Hopefully that feedback will help in finding the right solution. On the negative side, we all know that can be a frustrating quest.
And as for questioning the psych - you should. He/she surely has reasons for choosing a particular drug over another, or trying a certain combination of meds. And he/she can (should?) certainly discuss/explain those reasons with/to you.
Hope at least some of that makes sense...
Posted by Janice on March 15, 2000, at 13:27:07
In reply to Re: Help! I Want to go off my meds!, posted by Cynthia on March 15, 2000, at 10:37:04
hi Cynthia,
I'll try to answer some of your questions, as I used to ask my psychiatrist pretty much the same ones.
If we control the bipolar part of me with medication-am I losing part of who I have been for the past 36 years?
They have discovered recently that bipolar exists in children in a different form than the one it takes in adults. Try the website bipolar child, Cynthia.
I could not separate myself from the biplar disorder. I used to ask my psychiatrist if he ever had really logical rational type people coming in
who had bipolar disorder. He said no, but that it could probably happen.Does control of moods equal control of personality?
Sometimes I wonder who I would be without this disorder, and I can't really even imagine *me* without it (in some form or another).
Actually Cynthia, I half to go now (just when you're questions were getting more difficult).
But it is progressive. I experienced a depression like I had never before when I went off my lithium.
maybe right now it is taking over your life. But maybe with the right medications and education, it shouldn't.
Posted by Cynthia on March 15, 2000, at 21:58:25
In reply to Re: Help! I Want to go off my meds!, posted by Cynthia on March 15, 2000, at 10:37:04
Hi all- I am Manic right now- be warned! All of your words of wisdom have made so much sense to me. I have been reading (four books) and have found so much information available. There seems to be a general consensus on the most basic elements of bipolar disorder-one of them being the need for medication. I know that it will take me a lot of soul searching and heartahce to finally just accept this and use the "diabetes" analogy and intelectualize this in my own head. ( I can do this when I talk to other people about it! and my oldest son has diabetes so it gives me some basis of knowledge) With my husband's strong encouragement and guidance and the feeling of being in the throes of yet another manic episode and on the verge of rage I am reaching the conclusion that the only way, safely, to cope with this, for my family, is to continue taking the meds and to seek whatever help may be out there for me. I am sure this isn't the end of this disccussion in my head , but it helps to have made a tentative decision "out loud" . It is the first step for me..and a big one. I am coming off of 48 hours , no sleep , no food, and constant activity so I may not be making much sense ( I have been taking my meds!:) ) I want to thank all of you so much for the support and insight. I greatly appreciate your advice and wisdom... Thank you for allowing me into your community.
Posted by michael on March 16, 2000, at 2:43:38
In reply to Re: Help! I Want to go off my meds!, posted by Cynthia on March 15, 2000, at 21:58:25
> Hi all- I am Manic right now- be warned! All of your words of wisdom have made so much sense to me. I have been reading (four books) and have found so much information available. There seems to be a general consensus on the most basic elements of bipolar disorder-one of them being the need for medication. I know that it will take me a lot of soul searching and heartahce to finally just accept this and use the "diabetes" analogy and intelectualize this in my own head. ( I can do this when I talk to other people about it! and my oldest son has diabetes so it gives me some basis of knowledge) With my husband's strong encouragement and guidance and the feeling of being in the throes of yet another manic episode and on the verge of rage I am reaching the conclusion that the only way, safely, to cope with this, for my family, is to continue taking the meds and to seek whatever help may be out there for me. I am sure this isn't the end of this disccussion in my head , but it helps to have made a tentative decision "out loud" . It is the first step for me..and a big one. I am coming off of 48 hours , no sleep , no food, and constant activity so I may not be making much sense ( I have been taking my meds!:) ) I want to thank all of you so much for the support and insight. I greatly appreciate your advice and wisdom... Thank you for allowing me into your community.
Hey Cynthia,
Don't worry, you're definitely making sense. As far as resigning yourself to continuing to take the meds - if they're working somewhat, that's something.
But don't just settle for "somewhat better". As others have mentioned, it's a pain in the ass getting there, but finding the right meds or combo of meds can make a world of difference.
Talk w/your psych, let him/her know what's working or good or improved, and what's not working, etc. Maybe something to augment, or maybe something different all-together...? But you're not limited to continuing w/meds that don't get you there. Hang in there!
By the way, I used the "diabetes" analogy with a friend of mine once, to make her more comfortable with taking her meds. Slightly ironic that now I'm the one getting used to taking meds daily...
michael
Posted by AprilA. on March 16, 2000, at 8:27:51
In reply to Re: Help! I Want to go off my meds!, posted by Cynthia on March 15, 2000, at 21:58:25
Hi Cynthia- I think you you are making the best decision. I hope you are getting some sleep by now. Does your doctor know how manic you are ? If you don't feel like talking to her, maybe your husband could call her.
I think it takes a lot of courage and faith to make a decision like this and stick to it. I hope at least you'll have a little peace from having made a decision. Take care of yourself. A.
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