Tuesday, April 1, 2008

Medication-Resistant Bipolar II

Although I was initially diagnosed at atypical bipolar II, within a few years of taking medication (which, as my regular readers know by now, didn't work for the most part), I was labeled medication-resistant.

Lately, I've been thinking a lot about how I felt about that designation, which, of course, was the most disturbing of all. Why? Because, all the information I read confirmed my worst nightmare: there was no hope for me whatsoever.

Imagine how you would feel if you were medication-resistant and read the following: "Fifteen percent of the bipolar population is medication-resistant, and this is the most difficult group to treat. It often takes years to find the right combination of medication (if we can find it at all), and this group has the highest suicide rate." It's not exactly uplifting.

What truly bothered me was the dispassionate nature of the analysis. Somehow, I always thought that when you take away a patient's hope--which is so critical to their ability to survive--you should do it with great fanfare. I would have preferred dramatic drum rolls and clashing cymbals, rather than mere words on a page. It was disappointing to be utterly devastated in such a non-dramatic way.

Of course, optimist that I am, the only way to continue to persevere was to stop reading bipolar books, and stop visiting bipolar sites. The best attitude for me was to think outside the box. And recently, I asked myself: What if psychiatrists looked at the medication-resistant cohort from a different perspective?

In fact, let's use the diabetic population for comparison. When people with diabetes I (and sometimes diabetes II) are given insulin, it controls their blood sugar. But if you give insulin to people who aren't diabetic, it makes them sick.

When you constantly give psychiatric medication to people whose body won't accept it (like mine), perhaps it's like overdosing someone on insulin. The side effects for insulin overdose are headaches, irregular heartbeat, increased heart rate or pulse, sweating, tremor, nausea, increased hunger, and anxiety.

In fact, these are all side effects I've experienced and so many more. But unlike "regular" doctors who might have done a series of tests to see why I kept on having these side effects, my psychiatrists just piled on more medication. And unlike insulin, psychiatric medication affects your brain, not just your pancreas.

Years ago, I found statistics about how many people who originally suffered from clinical depression became bipolar after they were given antidepressant medication. I'm unable to find the info in my research folders (which I finally threw away because they depressed me), but I seem to remember that the number was around 37 percent.

What if...giving bipolar medication to people who truly may not have been bipolar when you prescribed the medication...caused them to become sicker and sicker? Perhaps those of us who suffered from untreated depressive episodes for many years needed a different type of treatment altogether.

Maybe our problem has to do with cortisol. On a site called All About Depression, I read, "Of those individuals who are clinically depressed, about one-half will have an excess of a hormone in their blood called cortisol. Cortisol is secreted by the adrenal glands...Cortisol may continue to be secreted even though a person already has high levels in his or her blood."

The fact is that high cortisol can cause depression. And some adults with depression or chronic stress have high cortisol. A few years ago, when I asked my psychiatrist about this, he said something like, "There's no way to measure cortisol or you can't use cortisol as a marker."

But that's not true. In fact you can measure it. And it's quite possible that people who have had untreated depression for years might have high cortisol.

My point is this: Since bipolar depression was largely ignored until 2003, and psychiatrists were prescribing medication without any idea how it affected us, the truth is that they may have been entirely wrong about what they were/are prescribing.

And since psychiatrists and endocrinologists don't work in tandem, it's quite possible that those of us with untreated depression should have had our cortisol levels checked, and it might be that if these levels were checked during a depressive episode, doctors would find that it's the increased cortisol that's causing the depression--and if it's suppressed--the depression will go away.

What bothers me is that there has been so little thought given to the so-called biochemical causes of depression. If a person is depressed, but not psychotic and has no other psychiatric symptoms, perhaps the underlying cause is not psychiatric in nature. And perhaps, all along, people like me should have been seeing specialists who are endocrinologists rather than psychiatrists. It's just a thought.

What do you think about that?


Tony C. said...

Hi Susan,
I agree with you. Every med I have been tested with has done something untoward to me. Paxil did all sorts of strange things, respirdol poleaxed me, depacote gave me paranoia, carbamazipine made my liver complain. I have been off everything except prozac (im not actually sure they do anything)now for 5 weeks and my moodswings have gone completetly haywire. For the past two weeks I have been living in the big black hole, culminating in serious very bad thoughts; so bad that I needed the help of the local psyciatric nurse and psyciatrist. At that point they suggested lithium and started testing me for suitability (two blood tests and an ecg to come).
Since Sunday I have started going up and up. I cant fly yet, but I reckon I can possibly just about walk on water. If they asked me today about pills - they would get a very rude answer!
Im a little fed up with being thier guineepig - a guineepig stuck in a very erratic elevator and the psyciatrist is the bell boy pressing buttons randomly.
Has the chemical coctail ive been on made me worse now that Im off the meds? I dont know. maybe one day We'll find out.
On another subject, the sun has finally come out here, amost a day and a half of sun. Ive been out in the garden and moved earth from one place to another, planted some strawberries and carrots and got the warm(ish) air to my skin. Perhaps humans should hibernate!

KJ said...

I am not a doctor, but I totally believe what you have written. When my husband would call his psychiatrist when he was having a depressive episode he would just get more medication, and then more, and then more. At one point he was on 4 different medications at very high doses. He was toxic! She never wanted to check levels or see him, just prescribe more medication. Well obviously she is not his doctor anymore, but while we had her it was the worst year of his entire illness.

pixie said...

Feel so frustrated. Can identify with your situation so clearly.Just spent ages typing a long reply to this but could not set up the blog and lost it all. Will reply properly later.Don't give up. There is no thing as treatment resistant, just psychiatrists who can not come up with the correct dosgae and combination or proper stabilisers.I have seen years os so called tteament resistant cases who were managing their bipolar il;lness very successfully once given the correctv treatment. Often combinations are required, and not including antidepressants if at all possible as yes this will tigger mania and hypomania, but only in individulas who hhave this condituon anyway, and would just be a matter of time before the manic side came out. The antidepressants perhaps just increase the cycling effect and tip the balance quicker. "Non compliance" is another way that mental health teams hide their inadequacies too. You will get there.


Meredith said...

Well, as someone who's kinda-dating a type I diabetic, I'm always interested to find new ways in which biochemistry interacts with the brain. I think you've got a pretty solid theory here.

Gianna said...

What if...giving bipolar medication to people who truly may not have been bipolar when you prescribed the medication...caused them to become sicker and sicker?

My role models fall into this category and have recovered. I am in this category and am recovering. Drugs often make people sicker and sicker...not just "bipolars" but "schizophrenics" too.

If a person is depressed, but not psychotic and has no other psychiatric symptoms, perhaps the underlying cause is not psychiatric in nature.

Absolutely...and there are many many roads to recovery other than the medical biopsychiatric model. I would argue the biopsychiatric model does not lend to true recovery at all.

Bipolar Wellness Writer said...

Dear Tony,
I'm so sorry that you'd had such a bad time of it. I'm not sure if you come to this illness from the manic or depressive side, but much of what I've read suggests that lithium is the best medication for people whose initial episodes were manic. And there's a psychiatrist in Wales who believes lithium is the only medication that truly has been proven effective for bipolar disorder.

So, I'm truly hoping you can take it and that it works for you. Yes, I do believe that people should be able to hibernate. And I'm delighted that you've been outdoors. To make you feel better, I'm recommending another California garden site that should make you smile. It's http://www.calflora.net/losangelesarboretum/index.html

All my best!

Bipolar Wellness Writer said...

Dear KJ,
It's all quite awful, isn't it? Part of the problem is that the first real study on the best medication practices for bipolar disorder, STEP-BD, didn't even begin until 1998. So many of us were taking medications that no one knew anything about. As Tony C. says, "We were guinea pigs," and still are--as far as I'm concerned.

What a travesty!


Bipolar Wellness Writer said...

Dear Jill,
I'm appreciate hearing from you. Sorry you couldn't get your blog up and running. Let me know if you need some info on how to do this.

I haven't given up, but I'm not a fan of medication (for me). I've been on 25 different medications in different combinations and dosages. I take two medications (only when I need them), and am looking to other solutions.

Welcome to our community!


Bipolar Wellness Writer said...

Dear Meredith,
Actually, I think the term "kinda-dating" is an interesting one. I'm not sure if my theory has any validity but it's surely as good as some of the studies I've read, which cost millions of dollars and come to no useful conclusions.


Bipolar Wellness Writer said...

Once again, I agree. I'd be interested in knowing your role models--if you feel like sharing. If it's confidential, I understand!


Tony C. said...

Hi Susan,
Thanks for the link to that lovely garden, what a beautiful looking place. If only california was closer.......
Blood test results came back yesterday. Liver is getting back to normal after the carbamazepine assault, ALT has gone down from 156 to 86 (its supposed to be somewhere under 50) so its heading the right way. It may be back to normal by the time lithium attacks my other organs....
Still feeling really good, dont want sleep I'm having too much fun. Started wandering about the house with no clothes on yesterday, its just as well my wife came home and reminded me to at least put some trousers on before i went out - now that would have upset the neighbourhood!

Meredith said...


We're "kinda-dating" because he was my high school sweetheart and first love who I broke up with when my cycles got worse and worse about six months before I was diagnosed. We've never gotten over each other and want to try again, to see if what drove us apart was my mood issues or if we really weren't suited. We've both grown up a lot in the last year and a half, so I'm optimistic. Right now, we're reacquainting ourselves via e-mail, IM and phone because he attends a university near my home in Florida. He knows about the bipolar (I actually called him from the hospital last April) and is very supportive.

Bipolar Wellness Writer said...

Dear Tony,
Glad to hear about your system returning to normal. Because I never experience the kind of mania you're describing, this is a true education for me. Maybe you could write a blog called "The Naked Quaker." I'm smiling as I write this, but I would imagine this kind of "high" is very difficult
--perhaps only after it's over.


Bipolar Wellness Writer said...

That's great news! I know you're "special" (don't gag on the word; it's truly meant as a compliment). From the moment you started writing your blog, I was struck by your maturity, insight, and strength (in general and in dealing with this illness, which is so difficult for so many). And I've always been impressed by your writing ability; but that's just my bias. Your "first love" must be quite something himself. All my best!


my life with bipolar disorder said...

Susan, this is a great post. Food for my thoughts on cortisol especially. I have a friend who is also medicine resistant and suffered much over the years. She finally sought ECT help recently, and just got out of her depression. There is such a spectrum to bipolar and depression, and takes much patience to find something that works for us. But there is hope and help. You are doing great! And your writings are helping many people :) Take care.

Syd said...

Another great post Susan. I too fought the pharmaceutial rollar coaster for years, usually ending up much sicker from the toxic cocktails of meds than from the underlying problem. It wasn't until I was tested for and diagnosed with "leaky gut syndrome" that I realized how truly dangerous this situation can be.

After seeing my test results, my doctor explained to me that because of all the medications that had been prescribed through the years, and my body's lessening ability to metabolize them all properly, my intestines were like "cheesecloth". He said that literally everything I was digesting was seeping through the tiny holes that had been worn into my intestines and as a result, my entire bloodstream was being poisoned with undigested meds, food, and worse, intestinal parasites and other bacteria. He said that I was a toxic waste dump inside and he was surprised that I could even function at the limited capacity that I was.

We did a major "detox", cleared out my system, and all of my symptoms, ALL of them, went away. That was in 2000. With the exception of the depression, they've all stayed gone. I'm finally convinced that the depression itself is a by-product of fibromyalgia and insomnia caused by sleep apnea and UARS (Upper Airways Resistence Syndrome) and a natural inability to limit biochemical reactions to stressfful triggers. Cortissol perhaps? Having lived through one major crisis after another for most of my adult life, I'm convinced that my adrenals have gone haywire. Long way to say that I think you're onto something here! :)

Bipolar Wellness Writer said...

Thanks Syd. I had no idea that you went through this. The toxicity of most psychotropic medication is frightening. With other illnesses, doctors are so careful to check on the relationships betweens the drugs patients take. But with bipolar disorder...there's seems to be way less oversight. I wonder why!


naturalgal said...

This is a great post. Right on! I also have seen those figures of about 30 percent of bipolar people (or mentally ill people) are NOT helped by the medication. (And actually made worse.)

Bipolar Wellness Writer said...

Dear Naturalgal,
What's interesting is that it used to be much easier to find "real" statistics about this illness. Now I have to go to dozens of sites and still can't find what I'm looking for. I sure wish I had kept that research.