John, every word you said really rings true to me, whether I really have depression, bipolar disorder or schizophrenia. My doctor never asks about function, he always asks about symptoms: mainly, "Are you hearing voices?" and, "Are you paranoid or suicidal?" If I answer no to those questions, he his more than happy to dismiss me with the same med prescription he gave me last time and set me up with my next quarterly appt. So now, I started on Saphris 2 months ago after being a zombie on Zyprexa for 13 yrs. I was so excited to FINALLY be functional again. For about 6 weeks I felt better than I have in my whole life, getting by on 6 hrs of sleep a night instead of the usual 10-12. Taking no naps during the day instead of my usual 2 naps. Doing in one day what used to take me a week or more. No social phobia (what a blessing!) And I thought: Now THIS is what I am SUPPOSED to feel like. I didn't feel hypomanic, either, just how I should feel normally. Able to live life as I had wanted to live for years. Fully functional except sensitive to stress.
Then CRASH. Down I came. Into the pit of hell again. Depression like that I was feeling pre 2004. Depression like I had felt for whole decades of my life that I thought was gone for good. Gone are all those good feelings. I had planned to return to school, to have a social life at last, to have good family relationships instead of avoiding everyone, etc.
Friday, I have an "extra" appointment to see my psychiatrist, because of the depression. And I can't help be fearful of what he will say/prescribe next. Because he cares nothing for functionality, and cares everything about symptom reduction. He is happy if I am a zombie w/no feelings at all and has told me so in terms couched in a patronizing tone of voice. God help me if he puts me back on Zyprexa. I think I will die. Will he think the Saphris caused a mild hypomanic episode and be afraid to increase the dose? Will he change my antidepressants? Will he want to try ECT again even though it didn't work the first round? Hell, he might even put me back on one of those godawful mood stabilizers like lithium or Tegretol or Depakote or any number of other meds that have failed to make a difference in my functionality.
I want to feel good w/o any mania or hypomania. I want to feel the full range of normal feelings w/o plunging into depression again or thinking I am God's gift to the universe.
But what I expect to feel is disappointment again. Disappointment that my doc doesn't understand that I have no life because of this illness. Disappointment that there will be more "medication management" that results in less than stellar results. Disappointment because he will lean back in his chair and tap his pen on the desk and tell me how fortunate I was that Zyprexa "worked" for me.
A caveat here: I said that my doctor seeks symptom relief, not functionality. For many "out there" who have not experienced this, symptoms relief does not automatically guarantee functionality. Even though it may seem like it would or should. Often, the reason behind this is because over-medication or the wrong medication can cause side effects that interfere with function. Like sleepiness may make you into a zombie who neither depressed nor manic, but who also is left feeling like not participating in life. Unfortunately, many doctors don't understand you want relief from the zombie-ism now, as well as from the depression and mania. It is like treating anxiety with a strong tranquilizer, one that leaves you dulled and dysfunctional and detached.
Also a medication may only take care of SOME of the symptoms, not all of them. So that while you are no longer manic, depression may continue to be a problem. Or sometimes when no longer manic, the bipolar person may not now know to function in the world WITHOUT mania and needs time to regroup and relearn life at a normal pace. That was a big adjustment for me. I had a job where I could handle a dozen incoming requests at once and process them all at the same time while answering the phone and editing proof sheets. Once the hypomania was gone, and the meds kicked in, I sat there with the work piling up and couldn't deal with the demands. I had to quit the job.
So, as I say, fewer symptoms does not always translate into more functionality.
when I was diagnosed in 2006, I was working a full time 40+ hour job
the job stress is what triggered the major manic episode that landed me IP
I was placed on 4 different meds; 2 being Lithium & Seroquel, 1 being Klonopin, the other a Anti-depressant (Lexapro).
I immediately had no ability to think, no ability to concentrate or focus. Everything was in slow motion, everything was through thick syrupy fudge.
I couldn't remember, I couldn't stay awake, and I gained considerable weight.
I went through Lithium toxicity and developed an adverse reaction to Seroquel and built up a tolerance for Klonopin - requiring more and more just to have the basic reaction.
My mind and brain was so drugged except for the 3D hallucinations I developed from the Lexapro.
I ended up, 7 months after starting all the meds, to resign from my job because I no longer could literally and physically - much less mentally do my job any longer. All I did was sit and stare, no thought to come.
Then, family started commenting how I wasn't myself on the meds. I couldn't wake up, I couldn't engage in conversations. I decided to go off all the meds and it took a month... within 2 months my mind was clear as a crystal bell again. The fog and the fudge was gone, completely gone, and I got another job.
I've been on meds, off and on, since then. Never to the extent I initially was on. I have a major sensitivity to meds to begin with; what is low to most is too high for me. Yet, I refuse to take any meds - at any dosages - that cause me to be so grossly dysfunctional that I can't work... I can't raise my child... that I can't handle even the smallest daily life function.
I refuse to be "treated". I want to be "helped". Psychiatrists are only looking to "treat" and very few are looking to "help".
The meds are supposed to make one's life better, to increase the quality of one's daily living. They are not supposed to disable, retard, or dumb down and interfere with one's ability to function while living.
You have always had some very excellent incites into bipolar disorder and some very good advice. You are 100% right about doctors mostly taking the "good enough" approach to treating patients with this disorder. With this disorder in particular most doctors almost never think long term, they only concern themselves with how to get the proverbial bandaid put on you and then push you out the door. Some doctors are more concerned with the fee they will charge, rather than the patients well being. Thats all very counter productive to any patients care whether they suffer from bipolar disorder or any other long term or chronic illness. This is how things went with my ex wife and the meds merry go round she was on, so I have seen first hand how bad that situation can get, and I can understand and agree with all your points.
The only that concern I have is with the way you presented those truths here. What I mean by that is some may view what you have said as an excuse to forgo meds or to be reluctant to go to a pdoc or to shop around for the right pdoc, thinking the situation is completely hopeless and/or that they dont need to seek out proper treatment at all from a medical professional. I know you said that you are not anti med or anti doctor, and that you advocate smart medicine in this situation and I am all behind you on that and I believe you truly mean what you say on that issue. But you must remember there are quite a few people who have the disorder who come here and read the articles posted. Quite a few of them really take stock in the advice thats posted here, especially by experts like you who are very well versed on this disroder and all of the variables that go along with it as well as the various treatments available for it. But these people also look up to you even more because you struggle with the disorder yourself. That gives you extra credibility in this, and as such your advice is much better received and more people would heed your warnings and take your advice about any aspect of the disorder and its treatment. You have placed yourself in that position and as such you have selflessly taken on a great responsibility to not only illuminate but lead by example which you accomplish quite admirably. All of us who have read your posts all agree that you are very good at guiding people in these issues, and we all respect you very much for it.
I am not trying to criticize you as you are much much more knowledgeable about this than I will ever be and also because I am not afflicted with the disorder. But I was married to someone who does have the disorder and was very much in denial of it. She would look for any reason or shred of advice to explain away her symptoms, discourage her from seeking professional help, as well as anything at all that would enable her to remain in denial. If she would read your thread here she would no doubt see your words as a warning against seeking out medical professionals and against taking their advice or directives on treatment. She would see it as proof that she should not seek professional help, and as such she would use it as an excuse not to. I am worried that other people may view your words here in that way even though you clearly did not intend them in that way, and I believe that you did not mean them that way. But having seen the extreme denial someone with the disorder is capable of I can speak from experience when I say that someone in that state about their bipolar disorder would very likely see your thread here in that way.
I hope you do understand, that as I stated above, I did not intend this to be a criticism, just a worry that I have about how some of the bipolar sufferers here or who may view your website, that may be in a state of denial yet about their disorder may view your words in the way I stated. Hopefully they wont, but its a worry I have.
Hey, Melissa, Donna, Tabby - I only wish you had reason to disagree with me - that you could tell me your meds worked great and your doc was wonderful.
Hey, Bwolf - I take your points. When I was diagnosed 12 years ago I was told by everyone that bipolar is highly treatable. The reality is very different, and this has set the scene for a destructive blame game going on from all parties - patients, loved ones, clinicians. I'm harsh on the docs here, but in the constructive sense of urging patients to get their clinicians on the same page.
I was very lucky 12 years ago. My doc put me on a low dose mood stabilizer. I hate to think what would have happened to me had he overloaded me on meds. I would have taken them in good faith. Then what? I feel like I dodged a bullet.
I think it's important that patients hear the skeptical and critical side here at BipolarConnect, from myself and the community here. Here, at least, we all have the same goal of helping each other with getting well and staying well. Too many patients get the critical side from antipsychiatrists. Then they become victims, caught up in the blame game.
I appreciate your feedback. My commentary is more pointed than it has been in the past, and I need to know if this is resonating with people here or alienating them. I hope you see where I'm coming from, but please keep on keeping me honest.
i've been coming here nearly 5 years now and i've never once read anything from you that said "do not take meds" or "do not go to a doctor"
i do appreciate the ability to see differing, if not at times opposing, sides to the MH treatment discussion
i have always been told, by family and by the medical profession to "be a good little girl and do what the doctor tells you to do cause they know better than you do." and quite often... as I've gotten older... I realize that the docs really do not always know better than me especially when they do not take the time to get to know me OR worse, they do not take the time to "listen".
So few psychiatrists or prescribing providers for those with MI take the time to really "listen". Whether it be due to cutbacks, insurance regulations, or what have you... the ability to really speak with your psychiatrist and he/she get to know you and who you are and what you want to be or how you want to live your life... and incorporate that with your treatment... is so very rare to find these days. At least it has been for me... I've not found it yet without paying out some mighty high dollars for a private practicing one... and I'm poor.
So, I for one, am glad that folks who struggle with the same illness or similar illness(es) are trying to empower folks to advocate for themselves rather than just listen to the same old line of "be a good little patient".
Hey, Tabby. You're right. I've never said, "Don't take your meds - don't go to the doctor." By the same token, I've never said, "Take your meds - be a good patient."
I've always come from the point of view of "Inform yourself, become your own expert and advocate, make your own choices."
You will notice that practically everything I write about getting well and staying well involves no meds. It's all about mindfulness (my real mood stabilizer), sleep, and stress management - my big three. Then the zillion and one other things - diet and exercise, connections, spirituality, meaningful work, play, on and on.
And when I do write about meds and doctors, it's with all the caution flags raised high. I will never tell anyone to go off their meds, as the worst thing that can happen from that is too real a possibility. But I am quick to point out how problematic meds in the hands of incompetent docs prescribing to naive patients constitutes a clear and present danger.
Meds can be lifesavers, but too often they're the greatest obstacle to our recovery.
I'm very grateful to your contributions here over the years. I like to think I have been constant in my position over the years, but in fact, thanks to you and others, I have grown far less tentative and far more assured. You may recall about two years ago I completely retooled my posts here. Before, I was writing from my perch as the "expert patient." Then it occurred to me that I should be taking my cue from the community, of which you are a prominent member here.
Guess what? I'm finding this works a lot better. I'm very grateful to the many clinicians and researchers who have been very gracious in explaining things to me. And I love the opportunity of passing this info down the line to fellow patients and loved ones. But I'm learning a lot more from you and the others here.
Trust me, I would love to pass this info back up the line to the same clinicians and researchers, but I have little faith in them listening.
Thank you very much and let's keep the discussion going.
I believe you mentioned in your post that lithium (one of the drugs I am on) was twice as successful as a monotherapy for bipolar disorder 25 years ago. This is not the first time I've heard something like this.
Now, it's almost always prescribed with one or more of: another mood stabilizer, an antipsychotic, an antidepressant, anti-anxiety medication, etc., and is often not the first line treatment.
Any possible insight as for the reason for this shift?
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I just read this entire article all of which resonates with my daughters situation:
Frustration with medication failure/diagnoses/expectations etc. I am writing about my grown daughter and have become involved because her memory issues with the ECT and negotiating with her psychiatrists takes both of us - and she asked me to. So, a couple of decades of a few meds and mixed diagnoses - probably biopolar but with mild hypomania - followed by a year from hell with depression and multiple Rx failure. Just finished 11 ECT - trying to enter into maintenance q 2 weeks so she can work. On Abilify and Adderall. Good re diet, sleep, cognitive therapy tools, exercise. Depression is up and down and often out of the blue...after several days of feeling normal. Psychiatrist is a good negotiator and maybe a bit less informed than some. She suggested Effexor or and now I read where you suggest that and the ?? which physiologically might be good to discuss. But I can't find that section now.