How many meds do you use to treat your bipolar disorder? And your co-morbid afflictions? Personally, I get off easy and take only four.
In the treatment of bipolar disorder, polypharmacy (the use of multiple meds to treat a disease or disorder) is the norm. And generally, bipolar I patients take more meds than their bipolar II brethren. When I began treating the whole spectrum of the disease (instead of just the depressions), what made me angry was not having bipolar, but having to swallow handfuls of pills several times a day for the rest of my life.
Did you know that prescribing multiple meds for the treatment of bipolar disorder is not an evidence-based practice? And in a recent study of 230 patients who took four or more psychotropic meds, 36% of them were taking medications that affected their behavior and mental state. A few other studies go on to claim there are no clinical trials that examine which medications can be prescribed together effectively for the treatment of BP. Which in essence is true; most likely the interaction and efficacy of the combination of meds we swallow each day has never been tested or vetted by an agency like the FDA.
Keeping to the theme of polypharmacy, a study published last May by the International Journal of Bipolar Disorders, Drug treatment patterns in bipolar disorder: analysis of long-term self-reported data isn’t a clinical trial of any combination of meds, however the conclusions one can draw after examining data from this study of patient reported data is worthy of note. Here is an excerpt from the Results and Discussion section:
Four hundred fifty patients returned a total of 99,895 days of data (mean 222.0 days). The most frequently taken drugs were mood stabilizers. Of the 450 patients, 353 (78.4%) took a stable drug combination for ≥50% of days. The majority of patients were taking polypharmacy, including 75% of those with a stable combination. Only a small number of drugs were commonly taken within each medication class, but there were a large number of unique drug combinations: 52 by medication class and 231 by specific drugs. Eighty percent of patients with a stable combination were taking three or less drugs daily. Patients without a stable combination took drugs but made frequent changes. Taking more than one drug within a medication class greatly increased the drug load.
To summarize, (1) patients were more likely to take a mood stabilizer than any other drug; (2) although most patients were taking polypharmacy, there were no predominant drug regimens even among those taking a stable combination; and (3) most patients with a stable combination take a relatively small number of drugs daily. The wide variation in drug regimens and numerous possible drug combinations suggest that more evidence is needed to optimize treatment of bipolar disorder.
[Italics and highlight are mine.]
For those interested, the Background and Medication Classes sections are worth a read as well.
But the meat in this study appears in two tables: Table 4 Most frequent stable combinations by medication class (N = 353), Combinations by class) and Table 5 (Most frequent stable combinations by specific drug (N = 353)). Note these tables are not the results of actual clinical trials held to demonstrate efficacy of each drug combination. But the mere act of collating this type of data scratches the surface of the problem. Wouldn’t it be great if researchers could drill down further into this overall concept and launch more granular studies that deal with a better defined set of specifics about polypharmacy and bipolar disorder?
Although this study is moving in the right direction, it was even performed by an international team, I doubt our prayers will be answered for several reasons. For example, there are a myriad of psychotropic drugs that would have to be studied. Even if the 10 meds listed under the Monotherapy category in Table 5 were all that were studied and then only 50% of the the possible permutations were initially examined…I’ll stop there. Another reason is big pharma would never allow it. The industry sponsors 90% of clinical trials. Imagine what would happen if ‘competing’ manufacturers were to get into the ring together? Which they surely would have to do if a true, clinical trial using only one of us were launched.
Because I’ve had an overly stressful week and had to rely on more med than I would have liked, I’m going to add a bonus, concluding paragraph fraught with pessimism and a touch of maudlin. I don’t think the reigns on a polyparmacy approach to treating bipolar disorder will be pulled in during my lifetime. First and foremost, it’s a business decision. We are cash cows to the pharmaceutical companies. No one is going to willingly sponsor a clinical trial that could potentially put them out of business. And bipolar disorder is not understood well enough yet to justify a treatment approach that will veer away from the rut of polypharmacy. Strides have been made in the last few years with studies in genetics and brain imaging, but it’s not enough to make a difference to me in the here and now. And, when I’m in a particularly resentful mood (such as right now, as I swallow a gulp of tea and yet another alprazolam) something my Mother used to say comes shooting back into my almost manic thoughts. She died of non-small cell lung cancer. A particularly unpleasant way to go. She chose chemo and suffered through the treatment to prolong her life for three more years after diagnosis. She always used to say, “It’s barbaric, the way we treat cancer. The doctors pump you full of toxins until you’re at the brink of death, then pull you back just enough to keep you alive.” I don’t have cancer. I have no clue what she or anyone else who has had any form of the disease goes or has gone through. But when the idea that polypharmacy to treat bipolar disorder is not evidence-based is printed in black and white in front of me? I wish my Mother were still around to share my stories with. Not for the obvious reason that I will miss her every day for the rest of my life, but because she is one of the few people who’s graced my life that would truly understand how I was ‘polypharmacied’ to the edge of my sanity and then brought back just as I was about to break for good.
(I don’t usually quote an entire article, but this subject is near and dear to my heart….)
Published on February 14, 2014 at 5:12 PM
By Eleanor McDermid, Senior medwireNews Reporter
A large study has pinpointed brain and behavioural traits that are genetically influenced and associated with bipolar I disorder.
Carrie Bearden (University of California, Los Angeles, USA) and team examined 169 behavioural, neurocognitive and neuroimaging traits in 181 patients with bipolar I disorder and their close relatives – 738 people in total.
They found that three-quarters of these traits were heritable, 31% were significantly associated with bipolar disorder and 24% were both heritable and associated with bipolar disorder.
Traits in this last group “are the most promising phenotypes for identifying loci contributing to disease risk, as shown for other neuropsychiatric disorders,” write the researchers in JAMA Psychiatry.
They add: “Some phenotypes in this group, such as delusion proneness, appear broadly characteristic of the major psychoses. Others, such as perceptual creativity, appear specific to [bipolar disorder] predisposition.”
Analysis of genetic loci related to these phenotypes should determine how strongly specific genes contribute to heritability, disease risk or both, says the team.
Some traits, most notably measures of working memory, affective temperament and impulsivity were associated with bipolar disorder but were not heritable, “suggesting they may be predominantly influenced by environmental or disease-specific factors.”
Overall, temperament traits were the least strongly heritable, but three measures – the Temperament Evaluation of Memphis, Pisa, Paris, and San Diego cyclothymia scale; the Barratt Impulsiveness Scale; and Peters et al Delusions Inventory – had the strongest overall associations with bipolar disorder.
For neurocognition, the team assessed measures of executive function, working memory, processing speed, long-term memory and verbal fluency. Performance on some measures from all of these domains was heritable and many measures were also associated with bipolar disorder.
About 88% of neuroimaging traits were heritable and a large fraction were associated with bipolar disorder, predominantly measures of cortical thickness and magnetic resonance imaging volume measures. No measure of cortical surface area or axial diffusivity was related to bipolar disorder.
Of note, Bearden et al found that volume and white matter integrity of the corpus callosum were both heritable and significantly associated with bipolar disorder, which, in keeping with previous twin studies, suggests “genetically influenced alterations of this structure in [bipolar disorder].”
Licensed from medwireNews with permission from Springer Healthcare Ltd. ©Springer Healthcare Ltd. All rights reserved. Neither of these parties endorse or recommend any commercial products, services, or equipment.
So, yeah. Using very fancy language, this piece makes me feel uber-vindicated. It underscores most of the things I’ve been ranting about for years.
(Now, I suppose ‘ranting’ would fall under the ‘temperament’ column, which would indicate the bipolar disorder makes me so fiery-and-such. Boo-yah! Another point for Vivien. )
This topic has probably been discussed to death between those with bipolar, their friends and their loved ones – but honestly, I can’t remember.
(I thought about taking that cheap laugh out of there, but I’m in a good mood today. So it stays.)
Medication side effect warnings, info pamphlets on bipolar, talks with your doc, lists and lists of symptoms about this lovely condition. None of it prepares you for the day you are confronted with and have to accept the fact bipolar is affecting your memory.
It started slowly, a few years ago. I’d be speaking to colleagues and forget a term, which progressed into forgetting my train of thought which blossomed into forgetting my words all together. Med has helped, but my ability to remember the important sh** is waning again. I can’t remember what that last email stated so I wind up recreating the wheel. Oh, and prepositions are my enemy. Ninety percent of the time I use the wrong one, which makes it necessary to go back and reread everything I write before saving or sending. As a bonus, without auto-correct, some days it looks like I’m typing in Klingon or Elvish.
Not to be done in by being unable to remember what the URL for Google is, I resorted to using my toolbar-insta-search-field and poked around the results for ‘bipolar disorder memory.’ About one-third of bipolar people suffer from disruptions in their cognitive abilities, the jury is divided on whether antipsychotics have any positive effects helping with bipolar memory issues (run like hell!! I say) and a recent study discusses the idea Long-Term Memory Formation Altered In Schizophrenic And Bipolar Patients, Linked To Specific Protein. (Yes, I am reading my notes on what I found interesting as I type this out.) In all seriousness, much has been researched and published regarding schizophrenia and memory. It would be nice if the same amount of research could be conducted about bipolar disorder and…. Wait, what? Oh yeah. Memory.
If you’re bipolar, reading this post and are turned off by my flip sense of humor on the subject, all I can say is if you don’t laugh, you’ll cry. And just go on reading, because chances are you won’t remember being insulted in 20 more minutes anyway.
Big topics never matter until they shrink enough to fit into your home. Frustration at work is something I can handle (I work in IT. I’m a professional Frustration Engineer.). But when the memory BS started negatively impacting my personal relationships is when I started to really feel it.
Twenty seconds after my husband asks me to help him with something I’m on to something else, leaving him feeling frustrated and ignored. I forget to call my son on the weekends, I forgot to pay the international shipper and forgot to follow up with the county over an incorrect bill for the tabs on my car. I’ve downloaded and tried more task managers in one week than I care to admit. Or, maybe I’ve downloaded the same set multiple times and duplicated my testing. (Kidding!)
Then, there is the more serious issue of being at a stop light and forgetting why I am there. It doesn’t happen often, but it has happened more than twice. I wind up having to look around me to make sure I am doing what I am supposed to be doing. I am stopped? Check. The light is red? Check. The other cars are stopped? Check. Do I remember where I am supposed to be going when the light turns green? Uh… Sometimes. Sometimes I’ll just go with the flow of traffic until the brain fog clears and/or Bitchin’ Betty on the GPS chimes in again.
Memory issues worry me greatly, of course. I know I’m aging. We all do. Even at the age of 47 it’s not uncommon for healthy people to start showing concern about memory loss. But the bipolar meds and those used to help with the comorbid anxiety and sleep issues? Does anyone else worry about this? Of course they do. I’m not unique – none of us are. It’s just hard to make peace with what could be the fact that my condition and the fabulous pharmaceuticals used to keep it in check are ruining my…
Sigh. If what it takes is living by the tone of a reminder from my smartphone for as long as I can remember what that tone is, so be it. Who cares? I’ll forget in 15 I was ever sad about it all of this in the first place.
Remember that last post I published? The one from September 2013 that said I would be off for two months? Well, that didn’t pan out, did it.
What has panned out is being hired back to my old job and moving back to the US, which means having to once again enter the US healthcare system.
For my foreign friends – finding docs in the US is a tricky business at best. In The Netherlands, it’s required that your huisarts (GP) is located within a certain distance from your home in case of emergencies so there really aren’t all that many to choose from. Here in the US, you simply ask a colleague if they like their doc and no matter where they are located, go try them on for size.
So in the US, trying to find a psychiatrist presents a whole different challenge. Everyone needs a GP at some point, but not everyone is bipolar. You can’t just walk up to someone and ask if they like their psychiatrist. Even if one out of four people in their lifetime suffers from some form of mental illness, which means statistically those you know have at least one family member that’s seen a psychiatrist, it’s better to keep that question to yourself. Because of that little thing called stigma.
I decided the best route to take would be through a referral service that categorizes docs by their areas of expertise. Heart docs, osteo guys, psychiatrists with specializations in bipolar. As it turns out, my new/former employer offers just such a service. They will even help people hook up with the right attorney, the right smoking cessation program and the right weight loss group. Here’s the catch. One of my colleagues informed me that if someone takes advantage of this service, their manager is informed. The manager is not told what the employee has inquired about, only that the employee has requested assistance.
I work in an industry and for a manager that would severely penalize me for having the condition I do. Damn straight it isn’t fair. Or legal. But it is what it is.
So I’ve resorted to one of those lists from a mental health magazine that is sorted by specialty. Sure, the doc has paid beau·coup dol-ores to be on that list, but it’s the only confidential starting point I have.
No matter who I wind up seeing, I have made a promise to myself. Whatever doc I decide to try on for size isn’t touching the med cocktail I’ve been stable on for almost one year. No one is messing with the concoction that has me in the most stable phase I’ve been in for my entire life. And one mention of putting me on some antipsychotic as a prophylactic? I’m out the door. “Just bill me!” I’ll shout as I tear out the secret squirrel exit, and I’ll never turn back.
Ah, I’d forgotten how much fun the US healthcare system can be when it comes to finding psychiatrists.
The game is afoot.
Manic Muses will be on hiatus for six to eight weeks (September – end of October) while I do some traveling. I will answer any comments when back online. Thanks in advance for the continued readership and support!
I’ve been meaning to write a follow-up to my February 12, 2013 post Mapping the Human Brain for months. The intention was to put on rose-colored glasses, include a few flashy graphics and get everyone excited about the advances this program could potentially make. But after reading information that came straight from the White House, it just didn’t work out that way.
Eight weeks after the BAM project was mentioned in the February, 2013 State of the Union Address, The White House published an infographic containing more information about the project. It’s a slick presentation, huge, long and somewhat boring, that potentially promises several soft deliverables and possible long-term outcomes. Get past the pretty graphics however, and there are three key points of interest.
The first thing of note is the name of the initiative has changed – from BAM to BRAIN, an acronym for Brain Research (Through) The Advancement of Innovative Neurotechnologies. Why the rebranding? I guess BAM may have been too closely associated with a cooking show or something, and the Fed spinmeisters wanted an acronym more snappy and relevant. The second item of interest is the budget. At $100 million US dollars, it seems to be on target to kick off an initiative of this magnitude.
Moniker and budget aside, further down the graphic is a list of three US government agencies who will contribute to BRAIN. It’s understandable the NIH (National Institutes of Health) and the NSF (National Science Foundation) are involved. However, the agency receiving the biggest chunk of funding – half to be exact – is DARPA , Defense Advanced Research Projects Agency. For those unfamiliar with this organization, it is a branch of the US Department of Defense.
DARPA dabbles in everything from passive radar to robotic armies. And DARPA has quietly been in the brain biz for decades. The agency has released some information here and there regarding its endeavors, but for the most part, and for most people, their neuroscience research and discoveries have flown under the radar. For those who have heard of DARPA, chances are it’s because they keep a low-key, positive image in the public domain by peppering mainstream periodicals such as Popular Science with a menu of underway and wish-list programs for the civilian population to peruse and marvel at.
On the surface, it all sounds as cool as DARPA wants it to. So is there any reason for concern about the agency dominating the BRAIN budget? Fair warning: this is about to get weird.
In an article published this past May in Scientific American, John Horgan explains, Why You Should Care about Pentagon Funding of Obama’s BRAIN Initiative,
There’s nothing new about the militarization of brain science. Ten years ago, when I was writing an article on how information is encoded in the brain, Darpa was already a major funder of research on neural coding and neural prosthetics. Darpa program manager Alan Rudolph told me back then that the agency was interested in a wide range of potential applications, including “performance enhancement” of soldiers via either implanted or external electrodes linked to electronic devices.
I’ll leave it to you, reader, to peruse the original article to which John Horgan is referring and draw your own conclusion about what DARPA has been up to in brain science over the last 15 years on the dime of the Federal Government.
If it all sounds like the stuff from which movies are made, it is. In reality, funding a Hollywood film about ‘futuristic-brain-type-stuff’ may be more difficult than getting the US government to pony up for the real thing. There is actually a how-to handbook that guides neuroscientists through navigating the process for obtaining research funding from the military.
“…as I have pointed out previously, neuroscientists are pursuing military funding much more eagerly and openly, as evidenced both by the BRAIN Initiative and by this 2009 publication of the National Research Council, Opportunities in Neuroscience for Future Army Applications. Overseen by leading neuroscientists, including Floyd Bloom and Michael Gazzaniga, the report advises researchers how to tap into military funding. The report advocates “…enhancement of soldier performance, and improving cognitive and behavioral performance using interdisciplinary approaches and technological investments.”
And what a pool of funding there is to be had. In 2011 alone, the US Department of Defense spent more than $350 million US dollars on neuroscience – that they are willing to admit to.
Since the military is now openly recruiting and funding brain research, it begs questions from many camps, including the scientific community, future neuroscientsts and even (quite colorfully, I might add) conspiracy theorists. Is the military fast becoming one of the only ways to acquire funding significant enough to perform meaningful neuro research? Could this result in brain research being monopolized for defense purposes? If this emerging model of funding becomes the norm, will it stifle the creation of a diverse network of contributors through which innovation and discoveries can be pooled in order to make significant advances?
Definitely food for thought.
“Come and hold my hand, I want to contact the living.”
Feel – Robbie Williams
Robbie may be singing about love, but I’m talking about being desperate to rejoin the land of the living after two weeks of dealing with migraines and residual headaches.
Migraine probably isn’t new to you if you have bipolar disorder. One study revealed that 82% of participants with bipolar II had migraine, compared to 27% of the patients with bipolar I. There are many more daunting statistics out there – all you have to do is Google “migraine bipolar disorder.” Personally, although I’ve had these kick-ass headaches since I was a kid, my migraines stem largely from an old injury being re-injured. But, whatever. The end result is still the same pain-ridden hell.
So, for those without migraine who can stand to stare at a computer screen and do a little bit of reading, here are some interesting links about migraines in general.
Ah, yes. What you can and cannot do in life. Here’s a recent article from Huff Post on 10 surprising migraine triggers. (Not so surprising, really. I can relate to four of them!)
Then, there is an article from Time Healthland by the kill-joy Nolan Feeney, who tries to argue that Migraine Triggers May Not be So Potent After All. (Oh, neurologists who participated in this study. You are ridiculously oversimplifying things. I bet none of you has ever had a migraine, either.)
This article from the Mayo Clinic is very thorough. Migraine sufferers – this is a pretty complete menu of available treatments out there. If your treatment isn’t working, consider taking this to your doc and see what else you might try. Bipolar patients – have a look at the antidepressant and anti-seizure med section. It’s possible you’re already on one of these meds.
And finally, there is (in my opinion) the gold standard for chronic migraine treatment. OnabotulinumtoxinA or Botox. Having these injections every three months changed my life, and when I lived in Seattle, I was lucky enough to have Dr Sheena Aurora as my physician. (Oh, Dr Aurora, how I miss you!)
Rejoining the Land of the Living
I’ve been loathe to admit that while not sitting at a computer working 16 hours a day has improved my headache profile significantly, it hasn’t killed the migraine beast altogether. So, I’m off to track down a clinic here in The Netherlands that offers the OnabotulinumtoxinA treatment. (My idiot GP refused to do it. He literally told me, “…you have more time than I do to look [for a facility],” which doesn’t bode well.) Insurance be damned! If I have to travel to London for treatment, so be it.
If anyone out there knows of a clinic in The Netherlands that offers the old Botox-for-Migraines service, please let me know.
And, Manic Muses will be back online as soon as I can get this under control.
[Going to find those Immitrex tablets now. The beast has awakened from this short stint in front of the computer.]