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why don't they tell us when we are dx'd bp that we would spend years trying to find the right med mix, to expect some intense side effects, that we would probably develop anxiety, that our motivation could be nil to zero, that we could have sexual side effects, that we could become a zombie or just plain stupid, that sometimes we could have breakthrough mania, that it could become difficult to work, that our spouses and loved ones may not understand and we could lose them, that our sleep patterns would turn into hell, that our brains could still be busy, that we may even add, that all the drugs suck!

just venting!

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in my experience, some doctors just won't tell you.  i don't know the reason, but they won't.  but mine currently, will.  i asked her if i was bipolar and she said yes.  i fit all the criteria and it runs in my family.

some pdocs are just shitty like that.  they don't like to focus on what you have, just give you meds and send you on your way.

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Probably because we'd run out of their office and never come back. 

Bipolar sucks some of the time.  If they told us everything which could go against us, it would sound like we were trading partial functionality for a completely demolished life.  For some of us, we do get broken down to nothing in the process of healing.  Others don't.  Some people have an amazingly easy ride, getting on with their first med and on with their lives like this were no more an intrusion than a wart removal.  No one ever knows. 

Let's assume pdocs were omnicient.  What would be better?  What would be worse? 

(I kind of wish they were.  Pigs?  share that crystal ball?)

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why don't they tell us when we are dx'd bp that we would spend years trying to find the right med mix, to expect some intense side effects, that we would probably develop anxiety, that our motivation could be nil to zero, that we could have sexual side effects, that we could become a zombie or just plain stupid, that sometimes we could have breakthrough mania, that it could become difficult to work, that our spouses and loved ones may not understand and we could lose them, that our sleep patterns would turn into hell, that our brains could still be busy, that we may even add, that all the drugs suck!

just venting!

<{POST_SNAPBACK}>

I don't know if this is a good analogy, or not.

My husband was diagnosed with terminal lung cancer in 1999. At that time he vowed, to the death, he would "never give up." And he soldiered on valiantly through  4 separate chemo regimens, 15 whole brain radiation treatments (his comment, "it's all fun and games until YOU are the on on the business end of a linier accellerator"), 15 treatments of radiation to a huge tumor in his spine (one of many) and excrutiating, unrelenting pain. We never stopped going to the oncologist office, trundling down there every other week. As though THIS would be the week the miracle cancer killing agent, which by now had metastasized throughout his body, but most importantly to his liver and brain, which no one ever survives that. Regardless of what kind of cancer got you there.

I was on his oncology nurse for MONTHS, "why isn't Dr. X, stopping this insanity and referring Bradley to hospice?" She would skillfully deflect my questions, and onward through the conversation about appts., or drugs, or yet ANOTHER treatment, clinical trial criteria hoops to be jumped through, etc.

Well the time did finally come, in June of 2001, when Oncology had nothing left to offer us. And guess what? They STILL did not refer us to palliative care, as much as I hollered and kicked and screamed to the oncology nurse. And the reason was, because Bradley, my husband, as beaten and battered as his body was from everything he'd been through saw this shift in treatment as "giving up." <I'm getting to my point, to my answer to your question.>

So, after a particularly gnarly afternoon trying to get him the proper quantity of pain medicine because at this point in time he was taking double doses of morphine than what most normal people would require. His oncologist was avoiding him, would no longer see him, I dealt only through his compassionate and brilliant nurse, who for all intents and purposes dispensed the meds and the doc rubber stamped the scripts.

One day I was in the cancer center, Bradley wasn't with me this time, and I was complaining about the fact that both Bradley and Dr. X seemed in denial about hospice, about as they said in "28 days later," the movie, "the end is very fucking neigh." I just felt like I was the only sane one around the place who could clearly see he was dying and had never had any hope for a medical cure. So the oncology nurse said, "do you think he would see Dr. J., the director of palliative care, for a PAIN MANAGEMENT (read: not comfort measures til death) consult. He had already been discharged permenently from the pain management clinic at the hospital, well, because they were just assholes.

So, FINALLY, (you're thinking too...lol) Bradley gets moved from the oncology service to the palliative care services, starts getting the pain management treatment in proper dosages, which he so desperately needed. Believe it or not, with the terminally ill, most oncologist and anesthesiologists (the ones who typically work a pain mgt. service) don't know how to treat end-stage pain.

Bradley refused hospice services in our home for 3 more months. Until finally his doc said, "if you won't do it for him, do it for your wife."

By this time I was so disenchanted, disgusted, disillusioned, disappointed with the staff of the hospital (on all 3 services, oncology, pain, and palliative care). I thought it was their duty to browbeat Bradley into understanding he needed hospice care and that he was dying.

Well, it just doesn't work like that. And the palliative care nurse explained it quite simply, in one sentence, "Suzanne, the patient ALWAYS leads the dance."

In other words, Bradley's committment to "never give up" and he didn't was taken quite literally and nobody ever told him how fucked he seriously was. He never knew. Honestly. He never went online and researched his disease, he never went to support groups, or talked to other people with his type of cancer, and he just never knew. I KNEW. I was the one who was overeducated and deputized as the hospice worker until they finally did come on board 3 weeks before he died.

"The PATIENT leads the dance." So, I remember that, who could ever forget it, when I'm dealing with physicians and I ask a ton of questions. Always. What if this, what about that? Side effects? Drug interactions? Efficacy vs side effects? What are the stats? Where can I get more info? I grill them to the best of my ability whether it's my disjointed brain, my back which is broken in pieces from too many failed ortho/neuro treatments/surgery, my rheumatology disorders. Because I will never forget that nurse telling me that. Because what it really equated to was, "if YOU don't ask, if YOU don't say STOP/GO, whatever, they are going to continue on a path that is curative until your head, heart, liver (fill in the blank_________) either explodes or you die. They are NOT going to tell you unless you ask. They are not going to say, yo' you're dying. Which is how I always thought it worked. But if you say, "yo, AM I dying, it's a whole nuther conversation." The patient leads the dance.

I know that was a long rambling, probably irrelevant to most answer, but think about it.

Some of our MI's ARE life threatening, mine is. And if I'm not leading the dance, which can be really f-ing hard when you are already feeling mad as a hatter, the consequences CAN and sometimes are dire unless you are brought to the psych ward unconcious post suicide attempt, or are otherwise court ordered, YOU make the ultimate decisions in your treatment.  It is incumbent upon us to educate ourselves about our diseases, the treatments, ramifications of treatments and if we are incapable of dealing with this, pray goddess someone in your life is and can help you out.

Though you sound pretty lucid, intelligent and capable of taking control of your own affairs.

I hope this helps. FWIW.

Suze

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"Probably because we'd run out of their office and never come back."

Exactly, Can you imagine finding out you have a life time of CRAP ahead of you...and then you go into a depressive cycle???

As it stands, I know more about my husband's illness than he does. I think he honestly doesn't want to know. I, however, would insist on knowing everything, and research on my own if I didn't think I was getting complete answers.

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Interesting this came up. I was thinking, earlier, what would have happened if the day I acknowledged my internal pain by cutting myself for the first time, around 15 months ago, someone had sat me down and said "actually, you're going to end up diagnosed with bipolar disorder. You'll experience psychotic symtoms. You'll be suicidal and will have to go through having psychiatric nurses visit you several times a day just so you can stay at home. You'll go bat shit manic. You'll lose the majority of your friends, become a social fucking misfit, fuck up your exams and consequently lose your place at medical school. You'll go through hell with your parents. People you know casually will hear about you and will no longer know how to act around you. You'll stop being afraid of death."

If I'd have known how life was going to be, I know I wouldn't be alive now. And I'm fucking 19. And I wonder, what will happen in the future? Will I stabilise? Will I pass my exams? Will I be a doctor? Will I have friends? Will I have...god...a boyfriend? Will I lose my mind? Will I kill myself?

Sometimes, we're just better not knowing.

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I'd already diagnoised myself with bipolar disorder way before i actually got in to see a doc. Granted, I thought I was just being hypochrondic and by the time I was in for my appointment I'd decided I was just depressed and stupid- and that would have been my official diagnoisis if not for the previod episoid I'd had a couple of years before with zoloft which I told my doc about. Tada- bipolar II, and I had read alot about what might lie ahead.

But... on that day if that doc had sat me down and told me "Ok, you're bipolar, and over the next six months you're going to go absolutely bat shit crazy. I'm going to give you this med, and it's going to start to work and your shity life is going to look awsome for about a week, and then you're going to have the panic attack to end all panic attacks on the day before you start back to school for your senior year. I'll change your meds all over the place, but nothing will work. Your grades, previously awsome, will suffer sevearly because you won't have the will to do your homework. Imagin the extra stress that will cause as you get the chances at a scholarship and college knocked out from under you. You'll have to carry around a little pill box with xanax every where you go because you'll be so terrified of having another panic attack. You'll be in the pits of hell. The week of thanksgiving, you'll finaly be hospitilized, but that will make things worse. You'll act your way out of that hospital, but end up in another one a week later. Then you'll change doctors, they'll seem to find the right meds, and for the next several weeks all will be well. Except of course the fact that all the weight you had lost will come back and then some, and you'll be a bottemless pit, always hungry. Then, a week before your 18th birthday your best friend will have to call the cops on you because after a fight with your parents you'll go batshit and end up considering suicide by broken class in the back of a good times. Your parents will hate you, you'll turn 18, and the day after you'll finaly admit that the meds you got in the hospital had pooped out. You'll want to kill your self but your best friend will drive you home personaly to ensure your safety. You'll realize how wonderful your friends are, but experiance extreme and unending guilt over what you're putting them through. The next day you'll wake up and type up a long ass description on some bipolar website about what an awful life you have. And that will only be the first 6 months."

Right now- I dunno whether that would have been better or worse. I mean, I would have said "oh... ok... cool thanks!" and gone right out and offed my self right then, but in the state I'm in right now I'm thinking that would have been better for every one =/.

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I think it's as simple as lmnop said.  I was lucky in that I was something like 75% stable on depakote and wellbutrin.  That plus my high functioning habits made me able to work and at least partly engage with the world.  Lamictal has improved things, but I still have had enough trouble to wish more than once that I didn't have this damned disorder.

Let's say the pdoc had said "you're going to gain 40 pounds and be completely unable to get it off.  You're frequently going to be anxious and irritable enough that you'll hide in your office for days.  You're going to stop writing stories, get ulcers, and have your hormonal problems screwed up by your medication.  Sure, you'll try another medication someday, but by then you'll be menopausal and will have to deal with that."

I would have at least been scared even more than I was.  I would have resisted taking medication and probably wouldn't have listened to anything else he said.  As it was, he made deals with me about medication compliance.  Every time I saw him and wasn't completely freaking out he'd remind me that my form of BPII is very, very hard to treat, and that he was glad that the medication worked as well as it did.  And he was right.  Even though I didn't feel optimal and had side effects, even though I had to change my habits and stop socializing with people who triggered me, that five years of relative stability made me strong enough that I can go through my current medication tweaking without losing hope.

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yeah, i agree with all of you.  i know my first depressive episode after being dx'd would have been my last if i knew that everything was going to suck from here on out.

i guess i have finally come to the realization that things are going to suck no matter what.  i was positive and thought that i could just be fixed and live a normal life.  that is what i was told in the beginning.  from reading so many personal experiences, i just don't think this is possible anymore.  where are the people that are living a functional life with bp?  is it still possible?  i am not going to give up because i know there are still some things that i haven't tried.  but, after that, who knows. i do not want the bp to win.  i refuse.

thanks for all of your responses.  my heart goes out to all of you.

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Hey...one thing to keep in mind: BPs who are doing well (and those of us when we're doing well) are less likely to post here.

Not saying it's going to be easy...but, there are plenty of inspiring accounts of BPs throughout history, and currently as well. I'm sure other folks can come up with some good resources. For now, I'll give you this: bp Magazine. Lots of articles and interviews; as far as I know, they're all available online.

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Hey...one thing to keep in mind: BPs who are doing well (and those of us when we're doing well) are less likely to post here.

Exactly. I've been relatively stable for over two years so I just pop in here about once a month to offer some support and play in the Whatever thread.

I had one doctor that put me through a lot. I think it was because she wasn't any good. I got a better pdoc and I haven't had any really gnarly experiences since then. I can be a little depressed or a little anxious or a little manic but absolutely nothing like the hell I experienced before I was diagnosed and while I was seeing the first doctor.

Even though it is taking a long time to get the right combination of meds stick with it. I am doing so well- I'm a "normal" person for the first time in my life (I'm almost 40). I never would have achieved this if I hadn't stuck through all of the different med doses and combinations and the numerous side effects.

If you are going through hell.... keep going.

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I think it's just that bipolar folks tend to be notoriously bad about med compliance as it is. Naturally no pdoc who wants to keep getting paid is going to level with you about what hell they intend to put you through before you've even started. No, they'll wait until your eyebrows get singed at the very least before they start on THAT one !

When I was first dxed and put on Depakote, the pdoc spent a great deal of time assuring me I would NOT gain weight on Depakote, many people DON'T gain weight on Depakote, if I started gaining weight dietary adjustments would probably fix it, and good healthy exercise, and not to worry.

My digestion got screwed up and I STILL gained weight like there was no tomorrow. I practically starved myself and STILL kept gaining weight. I don't know how that is even possible. But it's the truth. I wish he'd just been sensible about it, "yeah there's a good chance you'll gain weight, but if it doesn't level off before your thighs are perpetually chafed from rubbing together, we can try something else." But I do understand why he didn't. The important thing at the time was to stabilize me...the weight thing could be dealt with later, but me refusing to even start the mood stabilizer for fear of the side effects that MAY not have become an issue for me was obviously not something that was as important as stability.

Gee I don't even know if that last sentence made sense or if I'm rambling now. But I think that at least explains the med side of it. The other crappy stuff about being bipolar is just plain discouraging, and who wants to admit there isn't a miracle cure after all? I'm still hoping for mine...maybe the Cherry Jell-O diet will cure me  ;)

~Faith

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Heya,

Just to put my little spin on things --

Nobody had to tell *me* the natural history and prognosis for bipolar.

In fact, I had more experience diagnosing and treating bipolar than my own FP (because of her patient population, she rarely sees psych patients and if she does, they don't want help).

I knew all the numbers, all the things to look out for, all the med issues; all the med compliance problems; and I knew what would happen if I went untreated.

Particularly with my family history, which I'll write about sometime.

So, I went undiagnosed and untreated.

I knew I had bipolar, and I'm increasingly coming to terms with the fact that I knew for a good long while before I asked for help.

I knew I had it, and I knew it was wrecking my life, and I let it be because I knew what it would mean if I really had it, and I wanted to pretend I didn't.

So, knowing all that stuff at the outset did *not* help, in fact it probably (for me anyway) made things that much worse.

Now, though, now that I'm being honest with myself, I think knowing all this stuff helps me stay on track, helps me to remember why I'm in treatment, and (with any luck) will help me if/when I need to change/add meds.

I think.

(Edited to add:)

And for the curious:

I try to gauge each patient's readiness for depressing information.

Some of them benefit from knowing all this stuff in advance, and want reference books, articles, websites, the works.

Some of them just need me to say I'm going to help them.

Most are in between somewhere.

And I don't lie to them, and I answer their direct questions.

And I encourage them to write things down, and I sometimes write notes for them to take home because chances are fair to middlin that they're going to forget most of what I say.

And lots of them still (like me) stay un/misdiagnosed and untreated for a long stretch.

We are very hard to treat.  We are very frustrating, but we can also be very rewarding patients when we figure it out.

--ncc--

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"I think it's just that bipolar folks tend to be notoriously bad about med compliance"

This has been my experience...not just with my husband, but I keep thinking about all those people I have met during my husbands nuthouse stays. The woman who's husband basically dumped her at the door and took off with the kids because she kept gong off her meds, and that homeless guy who couldn't afford meds...he was almost catatonic for weeks before they finally got him well enough to be in the locked ward, or the woman who had already had her kids taken away by social services after she stopped her medication. Then there was the teenager who had been flushing his meds down the toilet, and the business owner who though the meds were making him too slow, so he stopped so now he was locked up and on the verge of losing his business AND his wife.

Also, my friends dad, who has been in and out of the mental hospital for years...and is now on wife number 8...and my BIL, who is in total denial that he even has BP despite repeated diagnosis.

I wish I personally knew ONE SINGLE BP WHO WAS DIAGNOSED AND THEN STUCK WITH TREATMENT.

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Heya Wifezilla,

Not too many.

I know of one for sure, out of a lot of BPs.

Remains to be seen if I'm the second one.

So far, so good.

But I *do* keep a list with me of reasons not to stop medication.

--ncc--

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But I *do* keep a list with me of reasons not to stop medication.

I'm curious, what sort of things do you have on your list?

Personally, I've researched the hell out of bipolar.  I'm still doing it.  There's always some new medication or some small facet of the disease to learn about.  I know what my future holds.  I know I'll be like this forever, that it can get worse, that I will need these mind-numbing drugs for the rest of my life.  It sucks.  What's worse is that anyone I date or befriend will have to deal with me like this, they will never know the real me, aka she who is not on meds to keep her from going batshit crazy and killing herself.

I don't know how long I've had this disease.  I don't know my family history, nor is there any chance of ever knowing due to two things: several adoptions in the family and an evil, stubborn old witch disguised as a grandmother who refuses to believe in or acknowledge mental illness.

This whole thing just sucks.

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Well, for some unknown reason I am one ridiculously med compliant patient!

I don't know what it is, other than I've been so desperate to get better. Hell, I've even volunteered for clinical trials in order to get better.

I don't know if there might be some small thing that might be different in me, something unusual in my personality? I know when I was in the Effexor study in the early '90s, the researchers were really blown away by the fact that I'd had such severe depression all my life and had never had a drug or alcohol problem (in spite of the fact that alcoholism and drug abuse runs on both sides of my family). From their standpoint this was really rare. And since a history of drug or alcohol abuse was an automatic disqualification for the study, they were thrilled to get me -- I was their definition of a perfect candidate. You'd have thought I was the greatest thing since sliced bread!

I've wondered how much different it is for BPIs versus BPII and others. I'd imagine med compliance might be quite a bit tougher for BPIs.

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Heya,

Bipolar sucks.

You and me, revlow, we're new to this meds thing.

I've seen a lot of non-compliance in BPIIs b/c we feel okay/productive and go off meds to stay that way, or get mixed and don't give a damn about meds.

Like you said, wifezilla, we suck at compliance.

But here's two of us anyway, me and revlow, so far, who are doing this med thing.

Beth, you asked what reasons I wrote down.

Well, here's verbatim from the written page.

(If I was better with tech, I could scan it in ;) )

----

Oct 17/05

Medication

Things Lamictal has done for me:

-- sleeping through the night (even at homeopathic doses)

-- no more nightmares

-- improved concentration.  Vastly improved.

-- not raging anymore.

    -- typified by road rage, something tangible.

    -- feeling sad, disappointed, confused & frustrated but not angry.  Anger was simpler and had adrenaline in it.

-- interested in learning again.

-- sex drive, more than once a week, off the charts for me.

-- able to do this:

When I feel sad, hopeless, worthless, guilty, and like everything is my fault:  I can sometimes see that that's depression thinking and not me, not real.  And work against it a little.  Or, sometimes ignore it and wait for it to go away.  Sometimes.  A little bit.  Which is a thousand times more than before.

--less agitated, less of a startle response.

-- teeny wee bit less social phobic

-- more able to speak up for mself

-- calmer.  More able to calm myself.

-- not so pressured.

-- able to relax on vacation.

----

OK, you asked.

New reasons whenever I think of them.

It helps.

More than I would have thought, I just thought I was doing some silly exercise.

The "reasons for not killing myself" list I keep includes many from the Bipolar Disorder Survival Guide, plus a few of my own.

Amazing how writing these things down helps.

Know what though, Beth?

I'm realizing that the real *me* is separate from the bipolar crap.

I'm also (okay, I like writing) keeping a list of things I think are really *me* and not things bipolar made up.

PM me if you're interested, b/c I don't have a Springer thread and b/c not everyone wants to know.

Sure, bipolar is part of us.

But it's not all of us, and it does *not* have to wreck our lives.

--ncc--

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