“I Did X, Chucked My Meds, Now I Feel Great”

I really need to stop this trolling habit, but it’s so addicting. Yesterday it was trolling for stories on bipolar disorder. This time it was alternative health. Right there I should have known the amount of BS that I would encounter. I’m not a spiritual person by any means, at best, I’d convert to reformed Judaism because I get along with the Jewish culture very well. But spiritual healing is something I rank with homeopathy as criminal enterprises that should be shut down and prosecuted. Why so extreme? After all, they’re just practicing their beliefs. However, those beliefs kill. And peddling beliefs that jeopardize other people’s lives is in my opinion, criminal. Just like refusing insulin to a diabetic child because your beliefs don’t allow it. There are facts in the world, and medicine holds claim to some of those facts, and I believe that laws should be based on fact first, especially if you claim to be able to cure people without facts.

The most entertaining ones are Reiki and things dealing with chakras. It’s difficult to even get past the bizarre color analysis and then the sometimes suggested “looking at colors” to alter moods. As far as I know, and I grew up in an orange-red painted room, colors don’t influence my manias or depressions. But what is scary is the anecdotal support for these things. Hence the title of this article. Someone with a mental illness chucked their pills and voila, the world opened up. This is a meme that is carried over into boards like CrazyMeds. People adopt some behavioral/nutritional pattern, chuck their meds, and now they’re fine.

For the record, I haven’t come across anyone who was schizophrenic that did this and now feels fine. Probably because the disease is so marked by psychosis that it’s easy to identify when something is working or not. But I did encounter it a lot with people who were depressed or bipolar. Also, for the record, I did not find anyone who was severely depressed who made these claims. Again, that might be because that too is very clearly marked in its mental state. That isn’t to say that there are not people who make claims like the title who have severe depression or schizophrenia, but in my limited search capacity along small blogs and CrazyMeds, I did not find them.

For depression, it’s understandable that getting rid of medication might help. There is a growing debate over the efficacy of antidepressants for anything but severe depression. In some cases it might make things worse. This happened to both my sister and my sister-in-law. Antidepressants didn’t help them and actually made my sister suicidal for years until taken off of the drugs. Antidepressants can have these paradoxical effects. Just like opiates don’t sedate me, but up me and can induce a mild hypomania. The effects are probabilistic, which means that there is a chance that something else happens. In the case of the miraculous recoveries after leaving antidepressants, it very well could be that they fall into the slim margin of paradoxical effects. It’s even happened to me, where bupropion (Welbutrin) pushed me from feeling horribly depressed to trying to kill myself just to escape the depression. I don’t fault “western” medicine for this, I simply realize that there are risks as well as rewards for every medication out there. The brain is unique and complex, bizarre side effects are bound to happen in some people.

So yes, sometimes getting rid of these drugs is a good idea, especially if they are not helping or the side effects are intolerable. But to move from “it didn’t work for me and X number of people” to “no one should take these and adopt my specific regimin” is a horrible induction. First, it sees a small population as a representative for a larger one, dismissing the reality that a larger number of people are helped than harmed by the drug. Secondly, it demonstrates a narrow understanding of the mind by saying that a specific avenue of action is appropriate for everyone. In reality, to get these drugs to work, it isn’t a set and forget system. Constant updates with a psychiatrist or an internal medicine doctor are required to make sure that it is working or if something else will work.

With bipolar, it gets even more scary because of the lack of knowledge about the disorder. For starters, ridding yourself of mood stabilizers, especially lithium, provokes manias. Obviously you’ll think that it was a smart move because you’re flying high on the world. It’s scary, but mildy amusing, to read some of the posters because it’s clear that they are manic just by the disorganized nature of their writing. It’s the kind of thing where after reading it you think to yourself “someone’s off their meds”. As testimonials go, these are not exactly the best endorsements for people who are bipolar or know people with bipolar because the signs are so bluntly obvious. These are short term endorsements and most testimonials don’t disclose how long they’ve been off of them.

But there’s another kind of bipolar testimonial. The “I’ve done X, gotten rid of my meds, and Y years later I feel great”. It sounds very convincing. It’s not the short term mania that happens after withdrawing from lithium or other mood stabilizers. In fact, it sounds like they’re on to something. After all, these people have been off meds for years, they must know something we don’t. This is wrong again and even more dangerous than the above experiment that will lead to a very quick crash after the mania wears off. It’s dangerous because they’ve mistaken a few years without a mood cycle for being cured. They’re not cured, they’re in “remission” for lack of a better word. This happens with people who are bipolar, they can go for extended periods of time with no mood disturbance. A classic case is Kay Jamison’s autobiography The Unquiet Mind, where she had mood disturbances in college, but made it through grad school without a problem. It’s not a disorder that is present 24/7 for some people. It comes, it goes, it can be triggered. And by not taking a med like lithium, which has very manageable side effects and is quite cheap, they’re setting themselves up to fail with no safety net to catch them.

To me, this is the most saddening portrait that I’ve come across. The short term withdrawer will have a psychiatrist set up and after the impending crash, will likely go on meds again. This is a classic see-saw of going on meds and coming off of them. But the long term withdrawer will lose psychiatric contact and if some major stressor brings the swings back, there is no medication or psychiatric safety net to catch them and help them. And nothing is worse than finding a psychiatrist while depressed or having to wait the weeks to see them and get the proper meds.

Most of what I’ve seen is due to a reaction to the zombiefication that psych meds can induce. Drugs like Seroquel and risperidone have this effect as well as drowsiness. But being mentally ill means you have to be an advocate for yourself. Setting up weekly or every other week appointments with a psychiatrist when going on a new drug is crucial to getting the dose or the drug right. And being forceful and not tolerating the side effects is key to not becoming zombied. And the energy spent on integrating a whole new life style, be it gluten free, reiki, or anything else, that energy could be put to use in finding a proper medication. You don’t have to be a zombie or accept being a zombie, there are a lot of pathways to try. And those pathways are less likely to set you up to fail than dismissing them all.

Playing the Diagnosing Game

I do it and a lot of other people do it as well. It’s a game we play where we see if someone fits a certain mental disorder, whether it’s a personality disorder or a mental illness. I used to do it only very occasionally, because I only had a single class of psychology behind me. I knew some of the requirements and I also knew some DSM IV requirements, but I was not well versed in the material at all. But in the past year and a half, my knowledge has grown considerably as my interest in psychology has also grown. I don’t think I’m even proficient in it, but I know most of the groups now for diagnosis of major disorders and also what separates them. It’s a fun game to play because it’s like putting a puzzle together. There’s only two things to watch out for.

First is that I don’t take it seriously at all. It only becomes a language that I can use to predict actions and understand some behaviors. Even then, I allow the person to just be an individual person. This is because individual traits almost always fill out the gaps of how someone operates and behaves. Classifications in the DSM IV are simply the similarities that individuals display that align with structural/chemical disparities in the brain. And it’s the individual idiosyncrasies that inform me to a greater extent about when to cut the person some slack and when something needs to be said (which is next to never in my case unless you’re a real dick).

Second is that I don’t force anything. Often, people are just weird without anything being “wrong” about them or needing medication or therapy. They’re just weird and that’s all that can be said about them. It isn’t a negative thing at all, weird people are often the most interesting people. It gives them flavor over the usual vanilla that I’ve encountered in a lot of people here on campus. The point is though, that unless there are absolutely clear behaviors or communications about behaviors, I don’t jump to any conclusions. To do any more would be pigeonholing them based on bad evidence. And readers of this blog know that I tend to be big on evidence.

Above is a fun game, and an interesting intellectual exercise of recalling definitions, applying, understanding, and afterwards I usually know the person better even if I’ve just come up with the answer that they’re weird. The game makes me think of them and try to understand them, which in my case, promotes a lot of empathy on my part. Empathy doesn’t come naturally to me, but looking at behaviors helps me see into another person’s head.

However, the internet sucks at playing by these rules.

Again, trolling through message boards last night (which was really a bad idea now that I think about it), revealed that a lot of people play this game. The only difference is that they play it for stakes and judge people based upon it. What makes it worse is that it’s usually very misinformed ideas about what actually constitutes the diseases that create the “diagnoses”. There are a lot of the ways that it takes form. Yahoo message boards are flooded with this type of material. Material where people as “is X bipolar?” or “X is crazy, is s/he Y?”. Or of course, there’s the wonderful comments, where people, based on a paragraph of material, feel well informed enough to pronounce a judgment. It’s actually disgusting after you read enough of it, and even more disgusted when you realize that actual people are making these snap decisions on things they know nothing about with barely any evidence.

Now it might seem strange that I would bring this up, since this seems to be relatively isolated to the internet. The internet, as we all know, is a cesspool of idiocy. But I like to see it in another light. Through anonymity, it doesn’t necessarily show what we are consciously doing, but what we unconsciously do, or do without thinking much of it. And in real life, I’ve known several other people who play this game, but again, it’s for keeps instead of fantasy and fun. This is all very interesting and mildy disturbing.

It’s interesting because it means that dialogue and discourse about mental illness, and even tangent awareness of mental illness, is relatively high. People without knowledge are aware enough about disorders to ask about particular ones. And that’s good, because it encourages people to see their own behavior or see other’s behaviors and possibly provide the encouragement to seek a therapist. And even in the naive and misinformed comments, I still see some light that psychological discourse has penetrated deep into American society. Though it’s distorted and not necessarily correct, that’s a long ways from where we were 50 years ago. To summarize, as a nation, we are becoming more aware of mental illness as an ailment to be treated and diagnosed. And with more and more resources about mental illness coming out on the internet, the proper information will start to trickle in and more people will get the help they need.

That’s about as positive as I can be.

The negative side that came out is that people make snap judgments about people’s mental health. Mental health is a difficult puzzle that takes years of schooling and experience to really nail down. The most an amateur can do is get an obvious case in a ballpark range of a diagnosis. Along with this is that the attitudes that come after making a diagnosis can be very ugly and prejudiced. It doesn’t take very long to find some horrible remarks on the message boards. There is also a sense that came out of the multitude that mental illness offers an excuse to dismiss the person. A weird person needs to be understood and worked with, a mentally ill person needs to take their meds. In this sense, psychiatry has penetrated the collective consciousness with its vocabulary, but it hasn’t penetrated it with its understanding.

Hidden Complications of Medications

Withdrawal has not been that kind to me lately. I’ve been going through approximately a migraine a day. On top of that is leg pain. It’s an old leg pain that I’ve had since high school and it largely went away as I got older. It would flare up now and again, but it was manageable. And by pain, I mean crippling pain that shoots through all my joints from the knee and below. My toes even hurt.

Before, it wasn’t a problem. I would take prescription levels of ibuprofen and that would take the edge off of it. Granted, it would tank my stomach and I would feel sick and have a lot of heartburn. But at least I wouldn’t be in crippling pain. And after my back injury, I was introduced to another NSAID called Ketoprofen. That stuff is wonderful. It took care of severe back pain, sciatica, and my leg pain. Also, for migraines, I could take excedrin. It wasn’t perfect, but it took the edge off and I could function again. I can no longer take these drugs. Any of them.

The reason for these is lithium. I cannot take ibuprofen, aspirin, or naproxen (aleve) because they will increase the serum levels of lithium and push me toward toxicity. In fact, besides tylenol, there are no over the counter pain killers that I can take that does not mess with lithium. But it gets worse. All NSAID class drugs do this. So no COX-2 drugs either. What I’m left with are anticonvulsants and antidepressants (and opiates).

However, anticonvulsants are not a reality because of possible complications with lamotrigine (lamictal). All of them score a moderate interaction on the Drugs.com interaction checker. Worse yet, the best ones not only take a while to work, but can decrease the amount of lamictal in my system. That could have devastating mood impacts. So anticonvulsants are pretty much out because they are slow and interact with another one of my drugs.

Finally, there are tricyclic antidepressants and SNRIs (like welbutrin). There are two problems with this. SNRIs make me suicidal and a little homicidal. Even at low doses they destabilize me. So no matter how effective they are, I simply cannot take them. As for tricyclics, like amitriptyline, they too are antidepressants with a risk of mania. This effect is exacerbated by taking olanzepine.

And there’s one other. A low level opiate, tramadol, also interacts with both olanzepine and lithium causing increased risk of seizure. This is because it acts on both the D2 and D3 receptors in the brain. So even low level opiates are off the table because of the medication cocktail that I’m on. Which is disappointing because tramadol is the least likely to get me hooked on another narcotic.

This just reveals the hidden complications of medication. Drugs like lithium and olanzepine interact with nearly everything. And once you throw in lamictal, everything goes out the window. And adding in bipolar disorder helps clear away the remaining drugs. The only things left for intermittent moderate to severe pain are powerful narcotics like hydrocodone and oxycodone. To some, that might sound nice. But after withdrawing from one drug, I’d rather not do it with another. They are also sedating, which is something I desperately want to get away from after taking clonazepam for so long.

However, I don’t advocate dismissing these drugs because of the complete lack of access to no nonsense pain killers. It would seem strange to jeopardize one’s mental health because you can’t take ibuprofen anymore. And I’m definitely not going to stop taking these drugs simply because I have days of pain. Even if right now I’m very badly medicating myself with a little alcohol and tylenol. What it means, in my opinion, is that if you have severe pain that isn’t handled by tylenol, get to a general practitioner and find out a medication right away that you can take. I was stupid and didn’t set up a primary care physician and am now in the lurch for not doing so. Instead, I’ll have to rely on my psychiatrist for pain meds until I can get into my July appointment, and that’s a position that I don’t want to put her in.

It’s also a very good reminder to double check every interaction with every drug because even common and safe drugs like ibuprofen can have relatively devastating effects. Drugs.com has a good one that lists the severity of the interactions and what it does. Also, talk with your pharmacist about these things. I’ve found several good ones and they know off the cuff what can’t be done or what little tricks can be taken to work around complications. It’s their job, and my psychologist informed me that there is a strong movement amongst pharmacists to demonstrate that they are more knowledgable than doctors about medication. Ask questions, they are more than happy to inform you about the latest research that they have read. Plus, and this is just me speculating, I think that they like the sexier drug cocktails that pose complex interactions. It’s a stretch to figure it all out. It’s like my experience with the university health clinic, where my doctor was more than willing to act as primary care after finding out that I had a herniated disk. I think it’s a break from the norm, which is always more interesting to intelligent educated individuals.

It’s Like Some Episode of Star Trek (And Mixed States)

I can’t really remember which one. I know that I’ve seen it, but it doesn’t deal with aliens. Instead it’s more of a character piece and about the dangers of space travel. Probably something like the Moriarty episode in The Next Generation. It’s one where the computer isn’t operating quite right. It works, then it doesn’t. Online, offline. Functional, then non-functioning.

That’s how my brain is operating right now. It works, then doesn’t work. It’s a good sign that I’m going to go into something big, mood wise, but it hasn’t figured out which way to go yet. I remember being told not to push for a mania, but sometimes, like this, pushing is what needs to be done in order to keep it from backtracking into a depression.

I also tried another post, something deeper than the daily life of your truly. It was about having children while bipolar. But I just couldn’t get it to work with my mind fluttering. The ideas didn’t flow right and I couldn’t wrap my head around the subject. That was after I started it. Before I began the post, my brain was on full alert and ready to take on anything. Now, it’s fizzling and nonoperational. Frustrating? Yes. But it’s a good sign, if I keep my stimulation and cognitive faculties working, I can push this into a hypomania. If I don’t, then like the crew on the enterprise, things will go south quickly.

The fluttering is another one of my many possible mood states. For a long time I thought it was rapid cycling, but shifts are cognitive while my mood state remains the same, a sort of eerie discomfort and inability to settle down. Months ago, I gave up on the bipolar continuum between mania and depression for reasons like the above fluttering mood. It’s a mood state, but it doesn’t fit anything along the spectrum. I’m not up or down or between. Around that same time I read some of Kay Jamison’s work, and she too doesn’t like bipolar continuum. So I dropped it all together. Why? Because there are more than two mood states that I move between and mania and depression can occur simultaneously.

Some of my moods are, manic, hypomanic, up, down, slightly depressed, and depressed. But there are more. There’s fluttering, like I’m in now. It’s where my brain feels almost hypomanic for short bursts and then seems to burn itself out leaving me with that eerie feeling of something is about to happen but I don’t know what. There’s agitated, not agitated depression or mania, just pissed off at everything from the moment I wake up. Also, there is more than a single mixed state. I can be in a dysphoric mania, where all my manic energy is self destructive. I can be in a doomsayer mixed state, where I think all is going to hell but I’m creative and have a good deal of positive self image. And I can also be in aesthetic mixed states where I find everything beautiful and often need to cut or claw at myself to find relief from the experience. The question that Kay Jamison asks is that if there is a continuum, then in the middle should be normal, not mixed. And some of these don’t even look like mania or depression, such as my aesthetic states.

Those are just the ones that I remember off the top of my head. I know that I’ve had more, but the point is that they don’t fall on the continuum. It’s not 2 parts depression to one part mania. They’re independent mood states that go along with bipolar disorder. Reducing these down to the spectrum would be like reducing emotions down to various degrees of happiness and sadness. One could do it, but it seems to impoverish life for the sake of simplicity. And like mixed states, it doesn’t seem to capture bittersweetness.

I’m only speculating here, but I wonder whether the continuum is used because it makes things understandable and communicable for people without bipolar disorder. One can imagine mania and depression to some degree (though I wonder just how well mania can be understood by those who haven’t experienced it), so things between these two are just a mixture of the two elements, as Jamison seems to hint at (but I won’t say that she endorses it). And this makes perfect sense in some respects because the different “mixed” states that I have are hard to communicate without a lot of explanation. It’s easier to just lump them all together as being “mixed” rather than assigning them names and figuring out the map of bipolar emotions.

But that’s an injustice to the reality of these different mood states. They aren’t all the same to me. I have to adjust my behaviors and interactions according to very distinct mood states that I have. They are not “mixed” to me, they have specific names and effects. It makes me wonder whether this idea of “heightened” and “depressed” categorization is worthwhile as a biological model. However, I do think that it is useful in the short run for zeroing in on some of the elements of bipolar disorder. I just wonder how long it should be kept around. Instead, I’d like to see if it were possible to map the various idiosyncratic moods to find patterns and determine whether people who are bipolar experience a different mood set all together from the general population and whether that mood set extends beyond mania and depression.

So I’m proposing to you to think about how many different mood states you really have. And how many of them really reduce down to the basic mania-depression spectrum? Or are they rather distinct moods that keep coming up in your life and you can assign a name to them?

Not Quite Normal, Never Will Be

That’s the basic message that my psychiatrist imparted when I went to see her on wednesday. Well, that an there is no real normal to be shooting for. I agree with her, there isn’t a normal baseline for human emotional fluctuations. And with that I’ve basically accepted that what I’m going through is about as normal as it’ll get. The normal for me is now fairly well established too.

It’s a new normal that I’m still reconciling. What doesn’t bug me that much at all is that I seem to have persistently fluctuating moods. Right now I’m two days up and two days down (roughly). Though, I also have some delays and minor mixed states involved in there too. It might sound really strange to say this, but having these predictable mood cycles is actually very relaxing to me. I know how I’ll feel on certain days and can plan accordingly. I know when I can take bad/good news appropriately, and when I cannot. I think I might actually be terrified if I didn’t have a regularity to my moods. I think I would also be really bored and hopelessly reacting to everything instead of being able to just ride it all out.

That rhythm is also nice to integrate with my social rhythm therapy. I can identify days when I really need to force myself to take proactive measures to improve my mood, like taking walks and getting out of the house. It’s also helped me lock in a routine fairly easily. Strangely, being bipolar might actually be helping me control my more extreme moods. That and lithium.

But I’ve also been in a little funk since wednesday. I’ve been mildly paranoid ever since my mood cycles started up. At first I didn’t notice it, but then it struck me full force while I was taking a walk on wednesday before going to see my psychologist and psychiatrist. I fought off the paranoid belief with a little mindfulness technique of identification and dismissal, but it dawned on me that I’ve been having a lot of these little thoughts for a week or two. It’s not intense, the zyprexa is doing a good job of keeping these things from blowing out of proportion, but it is not a fun realization. What made it worse is that my psychiatrist didn’t think that it would ever go away.

I didn’t get depressed over it, I was in the upper stages of a mixed mood. Yet, I still held out some hope that I would only have to deal with occasional psychotic manias. It’s another thing to be told that you’ll keep believing false things for the rest of your life and there isn’t really anything that you can do about it. The alternative was, of course, an increase in zyprexa. That option didn’t fly because of the brain fog. I’m willfully choosing to have paranoid thoughts. It’s another choice that I’d rather not make, but I try not to let it upset me or dwell on.

The good news is that immediately after seeing my psychiatrist I had to see my psychologist. He gave me a cognitive behavioral technique that is simple in appearance but a bit more difficult in practice. It’s basically the critical examination of beliefs. Underpinning this concept is that our brains automatically react to lots of outside stimuli and this practice is to challenge that. And when one challenges the belief in question, one asks about what evidence supports it and then what alternatives are out there that also fits the evidence. It works fairly well, and applies to a lot in life. I’m starting to apply it to everything for fun and for practice. What it fails to do is tell me what is a paranoid thought to begin with. Fishing for them is quite a skill.

I’ll just have to keep at the rhythm forming and CBT stuff to keep track of these things. The only thing remaining is for my mind to catch up and get really motivated like it did in the old days. Every day I see improvements, but it is an agonizingly slow process.

Treatment of Treatment Resistant Bipolar

I was browsing over a Psychiatric Times article about treatment resistance in bipolar disorder and how to define it. The article requires that you register, and it’s a hefty read, so I’ll give you the run down of what it says.

First of all, treatment resistant bipolar disorder is common under their definition, which is symptom recurrence in 2 years under maintenance. That’s definition number one. But definition number two concerns how to regard resistance to acute episodes, rather than just the long term.

For acute resistance, it is proposed by GS Sachs that resistance should be characterized  as a patient who does not respond to two standard medications over a period of time, for example, 6 weeks for mania.

But the article is not particularly fond of a straight forward approach like Sachs. The reason is that most people with bipolar disorder require more than 1 medication, which implies resistance in the general BP population. Secondly, there is no single mechanism that the drugs work by. Additionally, they cite that evidence for combining is lacking and the dosing in such combinations is lacking. So in the end, there is little in the way of evidence base approaches to defining treatment resistance.

But they do go ahead and acknowledge treatment resistance as occurring. It appears from the article that they subscribe to the 2 years of remission definition. And treatment should be based around evidence based treatments for the particular episode. They have a nifty table for this as well. 

They suggest that should monotherapy fail, one can start combining these treatments. I got my combo, lithium, abilify, and zyprexa (though abilify didn’t work).

Depression is another beast. They recommend antidepressants with antimanic drugs. They also point to evidence some very interesting evidence by GS Leverich that SNRIs, like welbutrin, might cause a depression-mania switch to be even more likely than SSRIs, like prozac. Never would have thought that.

What about maintenance then? Psychiatric Times says that the most common approach is to just leave the medications at their acute levels and reduce as needed according to tolerance. Personally, I’m at the opposite end of this approach. My psychiatrist wants to get me off of everything but lithium and add back in as needed. I agree with her approach in my case because I have been medicated to me ears and I’d like to start over and find what works. This is also a good approach because A Cipriani, lithium is the only medication so far to have possible antisuicidal effects. So lithium’s good in my book. But there are some reasons to not follow suit with what my psychiatrist is doing. If lithium works it might be only because of the zyprexa in there. There is some research showing that combination therapy might work where each individual medication failed. But there’s only one way to know, and that’s to give it a try.

It’s really an interesting article, and you should go read it if you have the time. I just thought I’d distill the main qualities of the paper so you don’t have to read the entire thing. What I found interesting was how by the book I was treated, and how by the book can add up to a lot of pills very quickly. It is also interesting to see the difference in approach that my psychiatrist has in treating me versus what apparently most doctors do, which is leave the levels at the point that they take care of the acute symptoms. I wouldn’t be able to function properly and would have very expensive bills to pay if I did that. So, in tandem with what I wrote earlier, it seems that I’m on a minimalist diet of pills, only time will tell if that works.