[dandelioness2]

Disturbed and astounded by the ignorance that most medical professionals have about this illness and its treatments. Have had such poor care by so many, I decided to buy and read the classic textbooks myself. More convinced than ever that the vast majority are just winging it. Trying various drugs and seeing what sticks. Treating symptoms and not patients. Dismissing complaints about unbearable side-effects unless they are life threatening (who needs a memory or creativity or a healthy weight). Lumping all manias into an easy label of "hyper" without an understanding of a its various manifestations. A cruel sensitivity to sound and color for some of us. Instead of violence or irritability - a delusional belief that we are one with the world. Claustrophobic sense of connectedness. Etc.

Then there are the meds. I have been put on antidepressants alone > mania. Been told (3 times) that side-effects I was having had nothing to do with the drugs I was taking though they were well known side-effects that dissappeared with disuse. And on and on. Five doctors from three different states.

Then there are the hospitals.

Is this the standard? How can you rely on such a damaged system?

[sugahorse1]

It's a very complex condition, and I think the medical profession has only recently understood the magnitude of it, and are starting to make an effort to learn more. The symptoms also vary so greatly from one person to the next, as it is a spectrum disorder

[CesarioRose]

I know my old D.O only treated my symptoms at the time. Prescribed me A-Typicals when i was obsessive, and obtrusive thoughts. Which only made me severely depressed, as I lacked the motivation to even read my self to tell others how I felt until it was too late. (Suicide ideation.) I was so angry at that point that he had been so blind to my suffering, when i clearly told T how bad it was. Then came the lithium after the hospital stay, and honestly, it was good for a few days. But it wrecked my motivation to exercise, which I still have 6 weeks after I quit. I was so afraid of toxicity from dehydration. Then it was the pealing skin on my right hand. It was so painful; a constant reminder of how M.Ds, D.Os, What-the-hell-evers only care about treating an illness, and not treating the person underneath. The broken, damaged, the unmotivated loner; the stigmatized, alienated silent sufferer of pain and torment unique to them. We're people, damn it! Not some play thing for a chemist to experiment what works, what doesn't. We're a living, breathing, feeling, emotional, loving, deep, personal, wonderful peoples. And often do they wish it so to wreck the creative uniqueness which is us with their drugs, and their hierarchy of procedural medicine "until something just works. soon i promises." Lies.

This illness is both so well known, and so very little is known on the personal level. The criteria is clear of course, and well defined. Perhaps not mixed episodes, but it stands to reason that they'd know what it is given enough time to get to know you. How I feel for our Ts who experience so much of what our wrath can be, and yet, mr./mrs. M.D, D.O, what-the-hell-ever, only sees us for fifteen minutes, writes a little slip of paper, and sends us on our merry, suffering way, obedient way. excuse the hostility; excuse the pessimistic attitude. But, I had such a drive to say it.

My experience has been varied doctor to doctor. I had one dr that I felt didn't listen to what I said and I was able to switch within my practice to the one I've had for the past 4 years. She listens to everything - has tried to help me get off all weight gaining drugs or at least lower dosage - when I tried new drug with bad side effects she took me off immediately. Maybe I've been luckier than most.

[onlymedid]

I went through several docs before I found a specialist in my area. He knows so much about BP that he even does case studies.
I think it's all about finding the right doc.

[Mac Murphy]

I think most pdocs do the very best that they can considering bipolar disorder is a moving target. It is a spectrum disorder with 3 primary types. If you look at the DSM-IV codes for diagnosing BP there are 33 different codes listed. You can see them here on the PsychCentral site... DSM-IV Codes for Bipolar Disorder.

When you consider the various flavors of bipolar disorder and the mix in the countless physiological differences between patients who are seeking treatment, it is not difficult to see how hard it can be accurately diagnose and treat. Add to that the various medications available to treat symptoms and your doctor is trying to find a needle in a haystack to get the right diagnosis and treatment.

It took me 9 years after diagnosis to get an accurate diagnosis and a really effective treatment. Along the way I had a real hard time in life. I was angry at the docs too, but then I started researching my illness too and I learned to have much more patience with my pdoc who was trying his best to get me stable.

I hope you can find some peace and a solution quickly.

Mac

[venusss]

well... Nobody jump at me... but this is preciselly why I keep distance from doctors and try to focus on my soul, inner peace, my life... all the jazz. Because this so called science is not scientific much... and it disregards patient as a human, not mere collection of symptoms.

/end rant.

[dandelioness2]

Thanks for your thoughts. Sorry others have had this experience and happy for those who haven't.

Didn't mean to be so harsh on the profession. Its more that with so much uncertainty (when we will relapse, how drugs will affect us etc.), it is sad and potentially destabilizing not to be able to assume professionals have expertise. Also upsetting that our input is sometimes dismissed because we are MI.

Not to say I have any intention of winging it, however. I have been through enough pain.

Mac, I had NO idea that there were 33 subcategories. Missed that in my reading. Thanks.

[mgran]

I'm new to all this. In fact, I'm schizoaffective and there's even less information for us (do a search on amazon for "schizoaffective," and fall over laughing hysterically at the prices of the few books out there... I'm in the UK, and 125 pounds sterling is about the average.

However, I think that bipolar is similar in many ways to my condition, and I really want to know more about it... you mention the "classic texts"... do you have a reading list? I'm pretty desparate.

[Anneinside]

Originally Posted by mgran

I'm new to all this. In fact, I'm schizoaffective and there's even less information for us (do a search on amazon for "schizoaffective," and fall over laughing hysterically at the prices of the few books out there... I'm in the UK, and 125 pounds sterling is about the average.

However, I think that bipolar is similar in many ways to my condition, and I really want to know more about it... you mention the "classic texts"... do you have a reading list? I'm pretty desparate.

I just looked up schizoaffective disorder at Amazon and several inexpensive books came up. One is a kindle book for $9.00 - and you can read kindle books on your computer with a free program from Amazon. It was called Schizoaffective Disorder Simplified.

[greylove]

I have irreversable tardive dyskenesia because my pdoc put me on Abilify......when he should have known that I was in the highest risk group (age and gender). I had to educate him. I went for three appointments telling him about the progressing tongue and mouth symptoms and for three appointments he kept speculating that there was something wrong with my jaw. TD is very rare but serious, and although I know he has never seen it before, I also know that he should have picked up on it earlier when I had a chance of halting or reversing it.

I also believe I was sent home from the psych unit with an inadequate diagnosis and inadequate meds. If I was treated for severe Bipolar 1 I don't think I would have experienced the psychosis that led to a failed suicide attempt. I'm with my psychiatrist now because there are few other pdocs around and I'm on maintenance medication now. He may not be at fault for the hospital diagnosis and drugs......but either way, it's all water under the bridge now. My life is what it is......a nightmare.......

[abience]

dandelioness2,

As they are saying we are all different and all get diagnosised sometimes even by accident. Looking back on it, I've been Bipolar all of my life, and have been treated for "severe depression" three times. Come to find out I have regular up manic episodes, happy, get a lot done, etc., then I have what is called dysphoric mania, all the symptoms of mania, excessive speech, high energy, excessive spending, speeding, etc., but what seems 1000 times more depressed than the depressive episodes and during these times I get somewhat delusional as well. Thinking back on it, the first major depressive episode was also a series of the dysphoric manias with the depressive sides that eventually subsided after a few years. The second one was a depressive episode that came with PTSD and the third, most recent was the one where my therapist fought with my psychiatrist to tell him that I was bipolar. He still felt it was depression until I was hospitalized in an extreme manic state with all kinds of deluisions. That was when, at the age of 42, in 2009, I was finally diagnosed. Now I get to have the fun of the medication dance.

Greylove I'm sorry about the Abilify reaction. I didn't have mine till after being on it for a year, and I would have full body spasms in my sleep. This too my Therapist forced me to see my pdoc about and she was right. I am very lucky to have a great therapist.

dandelioness2, We all react differently to different meds. All of our body chemistries are not the same that's why they have to try all of the different combinations of medications. I'm still waiting for my right bunch of meds to work.

Hang in there.

A

[blueoctober]

Certainly there are good and bad pdocs out there, but I also think it's important for us all to educate ourselves on the illness. If I had cancer I would research the crap out of it and that's the approach I took with my diagnosis.

[DivorcedWoman]

I would agree. I've had my ups and downs with docs and therapists too. I'm BP1. I first tried to commit suicide and was diagnosed with depression only even though I had a huge family history of BP. Then a few years later I experienced hypomania. Ironically my psychiatrist was on vacation so his colleague diagnosed me with BP and put me on Zyprexa which turned me into a zombie. I then went on a host of different meds but not Lithium and I can't remember what I was on. Got laid off and found a new job pretty quickly but it was a high stress position and I was planning mom's 70th bday, son's 3rd bday, etc. and I had a very bad manic attack. My friends and family were calling my psychiatrist and psychologist and I was meeting with them but they made no changes to my meds so I ended up fleeing with my son and accusing my ex of child abuse. I was 5150d and was in the hospital for a few days. My psychiatrist was retiring so I jumped around to a few different docs and ended up finding the doc I've had for 4 years. I had an anxiety attack about 1 1/2 years later and they added Abilify to my regime of Lithium and Lamictal. It worked well for a few weeks then I was emotionally numb and had memory issues. I shared these concerns with my team and no changes were recommended. My counselor said she though we should cut back on appointments as I didn't have much to talk about but never said she thought I was overmedicated. I figured this was the way things were going to be and I never suggested a change in meds because i was going through a horrific custody battle and was getting more and more time with my son. Luckily I started dating a guy and told him I had BP and was taking Abilify. He did research on the drug and saw me struggling and suggested I get off the drug. I went back to my counselor and said I thought my numbess and cognitive clouding were due to the Abilify and she agreed. I was on this drug for a little over a year and when I told her I felt like I lost a year of my life her response was that I needed it. How did I need a year of not working and using my life savings to be overmedicated. I'd worked with this counselor for 5 years. I have since changed counselors but decided to stick it out with the psychiatrist as I didn't want to make too many changes at once. So much more to the story and things I feel my psychologist missed and feel that my year of zombie behavoir and the bad manic attack could have been averted. Can we sue for neglect like this or is it really just hard for them to catch this things with the variation in the disease?

[dandelioness2]

Anneinside> The main textbook is Manic Depressive Illness by Frederick Goodwin and Kay Redfield Jamison. It's expensive - get it used. Also make sure you get the 2007 (2nd) edition.

Greylove>I developed TD from Risperidol and was told it was not a side effect. I was given Benadryl to treat it! I had to plead to be switched. I am so sorry you have to continue to endure the damage.

Abience and Blue>My first Pdoc (who teaches psychiatry at a prestigious university!) diagnosed me with psychotic depression (I had a long history of depression) after my first episode three years ago. Put me on Abilify for awhile and then switched me to Prozac alone. This lead to an six month episode which nearly destroyed everything in my life. Almost a year later I finally got the right diagnosis. I would sue if I had the strength.

[Tsunamisurfer]

Originally Posted by dandelioness2

... Treating symptoms and not patients. ...Lumping all manias into an easy label of "hyper" without an understanding of a its various manifestations...

I really relate to this.

As long as psychiatrists view their job as sifting through all the babble we dump on them to distil out the bits that fit the criteria for a diagnosis so they can put us on a pill and move us towards a less time consuming and more profitable business situation, we will always be caught in that battle.

Current psychiatric practice has no quick way of knowing how we will respond to meds, so the pdocs seem to spend their time playing on the medi-go-rounds rather than making sense of issues that trouble us.

I have got to the point of being afraid to tell the pdoc about my symptoms because I don't want to be hurt again by being rebuffed by the view that my issues were not important to understanding and fixing the situation.

I feel like saying in a flat monotone voice "Since our last appointment I have experienced periods of emotional undulation, marked by days of dysphoric affect, followed by several days of elevated and energised mood. Sleep has been variable, as indicated on the mood chart. Your patient has been compliant with the medications prescribed. Your professional direction is requested to improve the condition." Yada-yada-yada...

[Fresia]

In dealing with pdocs for over 30 years now, I definitely hear and truly understand this frustration with the pdocs, illness, diagnosis, and treatments.

Like some other MI diagnoses, BP is one with some primary characteristics but a lot of varying symptoms to classify it currently. As someone describes before, a needle in a haystack, so to treat becomes very difficult. Also that given the entire population, it is a small percentage that actual suffers from it, so the number of cases in comparison is smaller to other illnesses.

I once considered how can a doc know about an illness that he/she has never experienced for his/herself and how can I fully explain to them what is going on when I don't fully understand what is happening to me either?! They rely on us just as we rely on them to tell each other about it. There are communication issues here, some physical manifestations but a lot of mental to be expressed and subtle things at that at times.

I have learned to do a lot of due diligence as BlueOctober says, researching the crap out of the illness(es) myself so I can also better express in their terms and mine what is going on and to know what they are trying telling me or get out of me so they can understand. Most I do believe are trying to help. There is a scale of those who are better at this than others but fundamentally they mean well. It is up to us in the end to advocate for ourselves and find the right doc, and with them and with research help find the right treatment for us to help us manage our symptoms.

The more we talk about it with pdocs and providers, the more that becomes known makes a big difference in how illness is viewed, more understanding, and in treatment options available. The difference from when I was first diagnosed 25 years ago to now is huge and the same for depression which was even longer ago than that. They are learning more and more all of the time. Progress is slow, wish it was faster and better quality, but it is still progress nonetheless.

[dandelioness2]

Surfer>I feel the same way. I had a pdoc become concerned that I was becoming manic because I was more expressive once. It was our second meeting and I was not at all animated, just slightly more comfortable than the first. My episodes are rare and I am "normal" for long periods of time between them. I felt like I had to be flat-lined through every future session.

Fresia> I think the fact that most pdocs have had few, if any, BP patients is a HUGE factor. And specialists are overbooked and rarely available. Then novices are left to rely on rudimentary info.

The problem with self-advocacy is that I find uniformed pdocs often discount your knowledge/experience. More than once I have been dismissed because I have MI. I've never had this problem with other medical issues. But, yes, there is no choice but to give it a go.

And WOW, 30 years? You probably have a lot of battlescars and (clearly) much wisdom.

[unico]

Bipolar is really complicated, and it's definitely not as easily broken up into types I and II as many like to think. My psychiatrist (who is renown and very respected) just refers to it all as the "bipolar spectrum" and says most people don't fit cleanly into type 1 or 2. I am diagnosed Bipolar -Nos, which can mean almost anything, unfortunately. I get depression, hypomania, and mixed episodes that fulfill the mania criteria. I only had a clear manic episode trying to go off Zyprexa and it stopped as soon as I went back on Zyprexa. And some people divide mixed episodes into agitated depression and dysphoric mania, just making it more confusing! And it's hard for depression and schizophrenia and OCD, etc. also to find the right medication(s). Psychiatry really doesn't know much yet, you are right. It took me a long time for me to find the right medications and I still slip into mood episodes and have some bad side effects from Zyprexa. Unfortunately, nothing works as well for me as Zyprexa.

[dandelioness2]

Originally Posted by unico

Bipolar is really complicated, and it's definitely not as easily broken up into types I and II as many like to think. My psychiatrist (who is renown and very respected) just refers to it all as the "bipolar spectrum" and says most people don't fit cleanly into type 1 or 2. I am diagnosed Bipolar -Nos, which can mean almost anything, unfortunately. I get depression, hypomania, and mixed episodes that fulfill the mania criteria. I only had a clear manic episode trying to go off Zyprexa and it stopped as soon as I went back on Zyprexa. And some people divide mixed episodes into agitated depression and dysphoric mania, just making it more confusing! And it's hard for depression and schizophrenia and OCD, etc. also to find the right medication(s). Psychiatry really doesn't know much yet, you are right. It took me a long time for me to find the right medications and I still slip into mood episodes and have some bad side effects from Zyprexa. Unfortunately, nothing works as well for me as Zyprexa.

I envy you. Must be amazing having a skilled doc. It seems like most of the wise ones speak of a spectrum and not simply a DSM designation. Glad that you have found something that works for you.

[BlackPup]

I am lucky, my pdoc rocks... he specialises in BP pharmacology, is really smart, loves what he does and is really nice.... so much better than my last 3 doctors....
Only problem is he works 2 hours from where I live - but it is worth the travel!

[kathleen slattery]

Originally Posted by dandelioness2

Disturbed and astounded by the ignorance that most medical professionals have about this illness and its treatments. Have had such poor care by so many, I decided to buy and read the classic textbooks myself. More convinced than ever that the vast majority are just winging it. Trying various drugs and seeing what sticks. Treating symptoms and not patients. Dismissing complaints about unbearable side-effects unless they are life threatening (who needs a memory or creativity or a healthy weight). Lumping all manias into an easy label of "hyper" without an understanding of a its various manifestations. A cruel sensitivity to sound and color for some of us. Instead of violence or irritability - a delusional belief that we are one with the world. Claustrophobic sense of connectedness. Etc.

Then there are the meds. I have been put on antidepressants alone > mania. Been told (3 times) that side-effects I was having had nothing to do with the drugs I was taking though they were well known side-effects that dissappeared with disuse. And on and on. Five doctors from three different states.

Then there are the hospitals.

Is this the standard? How can you rely on such a damaged system?

////

You must be psychic, because these are all the things which have gone through my head on this subject! Don't even start me on the hospitals; I wouldn't put my dog into one that I ended up in. Then every time I tell my doc about a new side effect...like lack of bladder control (he suggested that I had a urinary tract with no symptoms; got it checked out and it's not!) to fingers going completely numb on me - well, he just writes all of this down, but it's sort of the attitude of "tough luck. Sorry about that". I think it should be mandatory for all these docs to experiment with their own drugs before expecting us to wolf them down. That's just my opinion.

[Tsunamisurfer]

Originally Posted by kathleen slattery

... I think it should be mandatory for all these docs to experiment with their own drugs before expecting us to wolf them down. That's just my opinion.

I think we would be killing off all our psychiatrists if we insisted on that LOL.

Mr Jones had a similar sentiment in the movie Mr Jones, about a BP1 sufferer who didn't want his mania taken away from him:

"Have you tried the drugs here?
You should, you know. You shouldn't be allowed to prescribe unless you know."

I had a good laugh.