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What to do when you think your doctor might be wrong?


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Hi everyone,

I'm a newbie with a burning question.

When I was 16, I visited my first psychiatrist because I was feeling depressed. He had me try several antidepressants - prozac, zoloft, celexa, effexor, lexapro, wellbutrin, and paxil - and within a few months I was manic, sleepless, paranoid, and suicidal. I was a straight-A student, but I dropped out of school ;) After two hospitalizations, I got a diagnosis - bipolar I.

I tried a bunch of medications - unfortunately, gained tons of weight, too - and finally found something that worked for me. I've been on Trileptal (with other medications on and off) for a few years now, and I'm doing better than I ever expected: I'm 21, alive, going to school full-time, and moving out of my parents' house this fall.

My current psychiatrist - who I've been seeing for about a year and a half - recently told me that she thinks I'm not bipolar at all... and that I can get off all my meds in 3 weeks. Her reasoning: I haven't had a major, life-disturbing episode in all the time she's seen me. I told her that I still do have mood swings, but less extreme than they were untreated. I still tend to be impulsive, but I've gotten better at curbing my impulses over time. My doctor said that if I truly *were* bipolar, I wouldn't just fantasize about killing myself, I'd actually be doing it. If I were actually bipolar, I'd be much more self-destructive... I'd be in debt, I'd be doing drugs, etc.

She says that I just have problems with emotion regulation... and really bad insomnia as well. She suspects that I have some kind of trauma in my past (?) that's causing my problems... even though I told her I can't recall any such trauma.

The idea of a medication-free life is very tempting... I have ALWAYS felt like my medications were stifling some important aspect of my personality, sapping my energy, etc. However, I've tried going off my meds twice, and I had problems both times (sleeplessness, hopelessness, inexplicable anger) before I'd even gotten off completely. I mentioned this to my doctor, and she reiterated that since I'm not bipolar there is no risk whatsoever in going off my meds.

Now I'm toying with the somewhat-attractive idea that there's nothing really wrong with me at all, and I've been taking pills unnecessarily for years. One part of me really wants to stop everything, one part of me believes that there is a risk in doing so. Incidentally, my parents hate the idea (and they hate my psychiatrist for suggesting it). It might be worth noting that my family saw me and lived with me during my worst times, and my doctor didn't.

I've pretty much always done what my doctors have suggested without question, but I'm worried about this. I'm actually thinking about trying to find someone else. I was hoping that some of you guys have advice or words of wisdom on this? Am I overreacting, wanting to look for a new doctor? Does bipolar disorder ever go into remission? Since I'm not in debt or suicidal right now, does that mean that I can't possibly be bipolar? If what she said is correct, is there any hope for us at all? Is my doctor is wrong on this one?

Sorry for such a long first post / all the questions... I think I'm woefully uninformed about all of this. It's taken me such a long time to accept the facts - I have bipolar disorder and I need to take medication for it - and now this new possibility has thrown me for a loop. I don't know what to think..

Thanks for listening,

RaisinGirl

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I'd find a new doc.

You don't want to do it that fast and you don't want to do it while you're in school.

Rapid discontinuation of trileptal can cause seizures. SSRI discontinuation decreases your seizure threshold.

Even if you do have trauma in you past, that doesn't mean you don't need meds. There's plenty of evidence that emotional trauma causes actual organic changes to brain structure.

Bipolar isn't very well understood and it's best to think of it in terms of combinations of symptoms and not just the traditional bpi/bpii/cyclothymia categories outlined in the DSM. There's a lot of stuff that's obviously bipolar that doesn't really fit into any of those as written.

This is a decent book to look at to start out with:

http://astore.amazon.com/crazyboards05-20/...4146433-5242466

See more from Dr. Phelps here:

http://www.psycheducation.org/

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Get a second opinion.

Not all BP patients are the same when it comes to mania and suicide ideation.

I never like the sound of a pdoc that has cut and dry explanations for things or looks at textbook cases only.

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Let me second all these replies.

Sounds like your pdoc has an outdated, limited, inaccurate understanding of what BP is and how it can manifest. I agree with VE that Dr. Phelps's book and website are great places to start arming yourself with more information.

It doesn't mean the pdoc may not be right - but I'd certainly seek a second opinion - this one seems to have made her mind up on the basis of some pretty sketchy assumptions.

Good luck, and let us know how it goes.

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I'm not in debt either and made one suicide attempt when I was 12, before an onset of Bipolar II at 19. I have never touched drugs.

I am very wary of a pdoc who insists that you can come off meds when you know that doing so causes you problems. If the problem really is emotion regulation, why is your pdoc not sending you to a DBT class to learn how to manage that, and then taking you off meds? How does your pdoc explain how much better you have coped since being on meds? Is your pdoc clearly saying that you have a personality disorder caused by trauma that creates emotion regulation problems, rather than a mood disorder?

There was some doubt as to whether I had bipolar II or borderline personality disorder. I have been on and off meds. My and my pdoc are viewing it this way, if it is a mood disorder, meds will make the most impact. If it is trauma or persobnality based, then therapy will make a difference. We're currently using both. I have finished DBT but am satying on meds because that is what i know, and my family know, works for me.

I don't think that your pdoc is being very strategic or realistic in planning to get you off all meds in three weeks with no other support for the mood swings they acknowledge you have. That is what troubles me. I'd say get a second opinion.

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WoW! Your pdoc sounds like an idiot. Sorry, but so is mine. I saw my new pdoc for the 2nd time and he had no idea who I was. ??? He is suggesting (or she) some potentially dangerous options for you. I will agree with everyone else here- get a second opinion and educated yourself. Oh, and get a new pdoc. Pronto.

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Find a new doc.

Not everyone with bipolar has the stereotypical problems. I have never done drugs, gone into credit card dept, or attempted suicide. I am bipolar, though, and cannot function well at all without medication.

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I'm not in debt either and made one suicide attempt when I was 12, before an onset of Bipolar II at 19. I have never touched drugs.

I am very wary of a pdoc who insists that you can come off meds when you know that doing so causes you problems. If the problem really is emotion regulation, why is your pdoc not sending you to a DBT class to learn how to manage that, and then taking you off meds? How does your pdoc explain how much better you have coped since being on meds? Is your pdoc clearly saying that you have a personality disorder caused by trauma that creates emotion regulation problems, rather than a mood disorder?

There was some doubt as to whether I had bipolar II or borderline personality disorder. I have been on and off meds. My and my pdoc are viewing it this way, if it is a mood disorder, meds will make the most impact. If it is trauma or personality based, then therapy will make a difference. We're currently using both. I have finished DBT but am staying on meds because that is what i know, and my family know, works for me.

This also ignores the fact that many people with a personality disorder diagnosis also have mood disorders. It's not either / or. Statistically, a person with an Axis II diagnosis is much more likely to also have at least one Axis I diagnosis. If the bpd dx can be made with certainty, it should increase the likelihood of a bp dx, not the other way around.

The DSM (and the european equivalent) are written with a focus on differential diagnosis. Unfortunately that's not always very practical. Some mental health practitioners try to find the one diagnosis that is closest to what is in the book and and say "close enough." This can result in significant symptoms being left untreated and maybe all symptoms mistreated. The good MDs are accepting that it's all neurochemical soup and focusing more on treating symptoms rather than putting them under any one umbrella.

There are studies which indicate that the temporal lobe affecting anti-convulsants, of which trileptal is one, can help with bpd by the way. There are plenty of studies showing that medications can help with mood related symptoms of bpd. Again, there is no reason to think that that personality disorders can only be treated by therapy alone. Medications treat symptoms and therapy works to help keep those symptoms from emerging in the first place.

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I don't know where this pdoc is coming from. What she says makes no sense.

Two hospitalizations is a "clue" that you have major mental health problem.

You only have 'mood regulation problem" : That is the defintion of Bipolar Disorder and Depression. They are Mood Disorders as classified by the DSM IV.

The fact that you haven't had any major mood swings in the 18 months with her is a credit to having the right medication and to your dedication in taking the meds and taking good care of yourself.

The fact that you didn't have a suicide attempt can also be a credit to prompt intervention with meds/therapy. Bipolar disorder is more complex than the simple stereotypes. I too don't fit the classic steretypes, but it doesn't mean I'm not ill.

The proof is in the pudding. Compare how bad off you were when you had dropped out of school and were unable to care for yourself. Now with good meds you are back in life and successfully doing tough work of school.

One of the hallmarks of Bipolar Disorder is "Lack of Insight to illness". We often don't recognize that we are ill and drop the meds starting a downward spiral. You have done well to this point in accepting the illness and being med compliant.

At the very least I think you should get a second opinion. Realistically, it will probably be better to find a pdoc who supports a successful treatment rather than undermining it.

** What were your hospitalizations for? What diagnosis did each give you?

a.m.

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Thank you guys for all the replies.

My doctor did mention Borderline Personality Disorder as a possibility... and she also mentioned that she is known for diagnosing BPD at a rate much higher than any of her colleagues. Still, the label really isn't important to me, unless it f*cks with my treatment (and by extension, my life..).

The first time I was hospitalized, I was depressed. I went in at the encouragement of my therapist because she suspected I was suicidal (and she was right) - crying, empty, all the hallmarks of depression. But I'd already tried so many antidepressants that everyone (including me) was mystified by whatever was going on. I did not receive a diagnosis this time around. I was there only for a short time until I was "stable".

After a few months, my parents insisted that I go back to the hospital. They were afraid that I would hurt myself by accident this time, because I was doing weird stuff... I called a friend to try and run away to Mexico so we could have margaritas. I emptied my bank account with the idea I could go to Mexico and start a new life (?). I rarely slept and left the house at 3am to buy ingredients to bake cakes all day. I was drinking and getting high a lot, breaking mirrors, pounding the piano at all hours of the day. And apparently I looked like a mess, too (so said my therapist).

The sad thing is, at that point I really thought nothing was wrong with me and they dragged me to the hospital kicking and screaming in denial.

I stayed longer the second time. Took lots and lots of Zyprexa. At the end of my stay, I did receive a diagnosis of Bipolar (I, II, or other, I'm not sure).

Thank you all for the advice and resources - I really appreciate it,

RaisinGirl

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Well sounds like you have hit every button on the Bipolar Disorder checklist. If you like I will line your symptoms one for one.

A first year resident should be able to diagnose you from this description. It is possible that you may have Borderline problems well, but to this untrained observer, it seems pretty clear.

I think you should look for another pdoc who isn't going to take you off meds and undermine your present successes.

One thing you should consider if you don't have one already is getting a talk therapist.

Keep doing the good things!

a.m.

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Find a new pdoc, and fast. It doesn't really matter what your official diagnosis is, you've found something that works for you. If you feel decent, are functional, and not suicidal that should be good evidence for not fucking with a good thing.

I had a pdoc that insisted upon pushing drugs at me that generally made me feel like crap. He couldn't seem to keep my personal info straight, even with a file in front of him. Things like asking how I liked my new job, when I clearly stated that I had had the same job for 3 years. He also suggested that knowledge is a bad thing, and that I shouldn't research the drugs that he prescribed. Not all doctors are created equal and you owe it to yourself to find one that works for you.

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i don't like how this pdoc is so ready to discard 2 hospitalizations and other professional opinions, along with a laundry list of symptoms to say that you "got over" being bp, or maybe never were. this would be cause to investigate further, you would think.

as tempting as it is to want to believe you never had a disorder and would be fine off of meds, i'd really take your past to heart (as you have in asking our opinions) and at least get a second opinion, if not a totally new pdoc and ditch this one.

as VE said, the meds you're on could cause serious issues if discontinued suddenly. and just because you've had a successful run of 18 months- congrats- with no major disruptions doesn't mean that you never had major disruptions in the past. it doesn't erase the issues, it just means you're being treated successfully now.

i've tried suicide twice (when i was 13 and 22, and i'm now 28), have never touched a single illegal drug, only have 2k in consumer debt, and do tend to sleep at night (despite adderall use ;)). i'm a classic case of bp1, but i haven't gone on drug-doing, credit spending, never sleeping rampages (well, the sleeping part comes and goes). so, because you're clean and sober you must not have a mood disorder??? i should tell my pdoc that one! maybe now i can get off the heavy mood stabilization drugs too! :) (sarcasm here)

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Guest your psych

Hi

The fact your psychiatrist admitted that she diagnosis Borderline PD at a higher rate than her colleagues rings alarm bells to me. The fact she even SAID this to you must mean that her rate of dx'ing borderline PD must be a heck of a lot higher than other colleagues. Sounds like she sees borderline PD everywhere she goes.

She sounds a carbon copy of my ex mental health nurse who is OBSESSED with borderline PD and diagnosis virtually everyone with it. Sadly, he then treats them diabolically by emotionally blackmailing and controlling them by withdrawing their support when they are "ill".

I must somehow introduce my ex mental health nurse to your psychiatrist. I think they would get on well!!

Please, get a 2nd opinion and FAST!!!!

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Guest Becky

Hi

The fact your psychiatrist admitted that she diagnosis Borderline PD at a higher rate than her colleagues rings alarm bells to me. The fact she even SAID this to you must mean that her rate of dx'ing borderline PD must be a heck of a lot higher than other colleagues. Sounds like she sees borderline PD everywhere she goes.

She sounds a carbon copy of my ex mental health nurse who is OBSESSED with borderline PD and diagnosis virtually everyone with it. Sadly, he then treats them diabolically by emotionally blackmailing and controlling them by withdrawing their support when they are "ill".

I must somehow introduce my ex mental health nurse to your psychiatrist. I think they would get on well!!

Please, get a 2nd opinion and FAST!!!!

Sorry, forgot to put my name. Its Becky from UK

xxx

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Wow, your doc's ideas about bipolar disorder seem awfully rigid, if not...dare I say...wrong. I find that weird. No wonder you are confused. Absolutely get a second opinion from a doctor that takes a long and thorough look at what you've been through.

p.s. I'm bipolar and haven't ever done illegal drugs or created a huge debt.

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I have a lot of BPD traits... actually, I have all of them, save for the temper outbursts... I pretty much just hold it all in (this is not always a good thing). And believe me, as per my personal experience, I have plenty of mood issues. Major, MAJOR depression with occasional euphoric-somewhat-hypomanic and brief reactive mixed states. Like you, under control for the most part with meds and a little therapy.

Obviously, I think the idea that BPD automatically excludes mood disorders is absolutely ridiculous. Given the nature of the temperament of those with BPD, one would think that most BPDers would in fact be predisposed to mood disorders.

I also think that doctors only looking at textbook descriptions is ridiculous. There's a reason our check-out and insurance sheets have those "NOS" and "atypical" checkboxes. I wouldn't be surprised if most people had to be put in those "bins".

I would go into further detail on the narrow-mindedness of clinicians like your doctor, but take my word for it, such diagnostic rigidity is indirectly why I now have some degree of permanent brain damage as well as a permanent swallowing disability.

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