Friday, September 6, 2013

A Perspective on the Beginnings of Transcranial Magnetic Stimulation, diluted by four weeks

"Magnets magnets on my brain,
Magnets magnets cause me pain,
Oh please magnets keep me sane"

-TMS Theme Song, by my friend Jess


I'm not going to say anything about the fact that this post about starting TMS comes four weeks after I actually started.  Except that. And the title.  Clearly my fatigue hasn't really improved.  And that.

Photo credit: Google Images
Anyway, as I left off before, with the financial decisions and emotional investments planned and set, I just had to start.  The week prior to my beginning the treatment I spent in Ocean City, MD at the beach, and expected it to be relaxing and preparatory for the move I was undergoing. However, as is the case whenever I go to OC, my mood was unpredictable and one day as I was driving to pick up sushi for my sister and I, I had a depressive crash.  I thought my sobbing might be from that I was about to eat raw fish for dinner, but of course these shrinks read much more into it. Most of the week went by fine, but it helped cement my belief that undergoing TMS was the right decision.  I started my treatment at 15:00 on August 12th, and have continued every weekday since.

Going into the first day I was understandably nervous.  Not because of the potential for pain or discomfort, really, but more for the possibility that it would not work.  Emotionally, on the surface, I had nothing to lose but a lot to gain, but the real anxiety came from that possibility of being out six weeks from my job search, with the same crappy mood disorder, and with my parents out six-thousand dollars with nothing to show for it.  They are so convinced that this is going to work, and I spent the weeks leading up to the start of my treatment trying to manage expectations.  Some part of me always felt that this procedure would be fruitless, and for all I know that feeling is a product of the negativity that is spawned by my disease. But once more into the breech, dear friends, and after all this is just another stab at that ghost.

When I arrived, I had to wait awhile, which was just fantastic for someone wrestling with anxiety.  What's worse, and while I am deeply appreciative of Dr. Sussal for his candor, wit, expertise, and in perhaps the most important way his true appreciation that mood disorder patients are at constant war with their insurance companies to offset the immense cost of mental health medicine, his waiting room sucks.  Probably because he and his office are so willing to work directly with insurance, he and his practice colleagues have a lot of patients.  The small waiting room is constantly packed to the gills, and I'm not sure if this is a mental health thing or people are just generally assholes, but the people in his waiting room are rude.  Talking loudly on a cell phone, snapping their gum, letting their kids run around unchecked; one guy I saw there was actually singing, loudly, to himself.  Or maybe his wife.  I don't want to hear "Old Man River" before I go in to see a shrink.  I deal with this kind of thing everyday, but most of the time its tolerable and my wait is brief.  Other times I have had to leave the room.

Anyway, when the time came, I was escorted into a room in the back of his practice where I saw, for the first time, "Old Shocky".

The Neurostar Transcranial Magnetic Stimulation device.  Note the magnetic coil, which is hanging from the apparatus slightly right of center with the cord running out of it down to the base of the chair.  This is the part of the machine that actually delivers the pulses to the prefrontal cortex of the brain.

I was told to sit in the chair, and we began the calibration process.  Understandably, the machine requires a pretty precise placement on the noggin in order to be effective.  Using, and I admit I have an extremely slight understanding of this process, some kind of laser mounted on the coil, they find the correct location on the skull to place the coil, and then attempt to find each patient's individualized "motor threshold", or essentially, how much juice is required in a pulse to get your right thumb to twitch.  This is sort of funny: due to my anxiety and general constitution, I am a very "shaky" person and at first it caused some ambiguity because my hands were moving so much.  Apparently, I have one of the lowest motor thresholds of any of the patients that the doctor and technician had encountered, but once again I have no idea what that means, other than that it supposedly makes the machine not be as loud during the treatment.  I am still forced to wear ear plugs, which I despise. To sum this up, and in full layman's terms, they stick the coil on the head, line it up using some sort of laser system, then use single pulses in increasing magnitude in order to determine the correct setting for the machine, using a twitch in the thumb as a guide.  I wish I had been more inquisitive as to this whole process, but as I mentioned I was quite nervous and I didn't feel up to asking very many questions, even though (perhaps this is arrogant) I think I could have understood most of the technical descriptions of the goings on.

After this process, they turned it on for real for the first time, and I did not expect what was coming.  The calibration process kind of led me into a false sense of security regarding the discomfort I would experience during this first treatment.  Since they used single pulses at the beginning, all I felt was a very slight tap on my head with each pulse.  I thought, "Oh, this isn't that bad at all."  For at least that first treatment, I was wrong. The treatment consists of an "on" and "off" phase, and alternates between the two of them for the 37 minutes. The on phase lasts about four seconds, and produces what I would guess would be about 15 pulses in that period, in rapid succession.  The machine then "rests" for about 30 seconds, before the pulses begin again.

Part of the machine's side effect
profile is the distinct expression
of the "double chin."
That first time they turned it on: yowza.  The way I described to my folks and friends the pain that the machine caused at first was "as if someone was chipping away at your skull with an ice-pick."  15 times in four seconds.  The doctor asked if it was painful, and me being the stoic dope that I am replied in euphemism by saying "well, it is not comfortable."  He replied, "is it unbearable?" Hrmm...  It is why I came up with the name "brain shockies", even though electricity is never applied to the brain.

And so I went through the rest of the first treatment thinking I would have six weeks of pretty intense pain to look forward to.  However, as I quickly found out, by the end of the first week, the immediate pain had pretty much dulled to the point of being inconsequential.  Occasionally I do get headaches immediately following the treatments, but they quickly go away with the help of some ibuprofen and rest.  So, discounting those two minor irritants, the only other discomforts, which are far more annoying, are the neck crick, and the sheer boredom.  Although I didn't really notice these two effects until the 2nd week or so, they are much more uncomfortable than the direct pain from the procedure.  I'm not sure, but I believe that part of my trouble is my size, which requires me to place my head correctly on the headrest while keeping my neck bent awkwardly, which some days makes my neck ache immensely towards the end of and following the procedure.  A direct product of the required placement of the head is that it precludes one from performing any productive activity.  I tried reading the first week, but as you're looking upwards it forces one to hold a book, or in my case a Kindle above the head, and after about ten minutes of that one realizes it is not feasible to keep it up for long.  Most days I just sit quietly in the chair, although recently I have started to take advantage of the TV and DVD player that they have for patients.  I'm watching Jurassic Park II at the moment, in 37 minute intervals.

I intend to follow with at least two more posts in the immediate future: one as a sort of progress report at the beginning of next week, and another at the conclusion of my treatment.  Hopes are still high that the brain shockies will come through in the end.

-Benjamin

Wednesday, August 21, 2013

A Decade of Background Shoved Unceremoniously into 1500 Words

It has been difficult the last few days, although that's a common refrain for me.  I've just been so tired... But, I guess better late than never... my distractions towards maintaining this being ever apparent reminds me of an xkcd comic which basically describes me.

(Photo credit: http://xkcd.com/621/)

On to more practical matters.  Although I am a little bit behind, about a week actually, I intend for this post to describe some of the background on my ailment, the decision making process to go ahead with TMS and what I expect to gain.  The last few days have been difficult in regards to energy levels.  So to get going...

I've always described my experiences with mental illness, and in particular depression, as fighting a specter, a ghost that moves silently, strikes quickly and which does so with crippling intensity.  And like any ghost, as soon as I think I'm through with it, it just appears again.  It is haunting.  According to the National Institutes of Mental Health (NIMH) major depressive disorder alone affects 6.7 percent of the adult, or about 15 million people.   In some way or another, 15 million people in my country are fighting a ghost.

Photo source: Daily HaHa
My particular brand of depression is a little bit different from most people's.  In most people, the most defining characteristics of depression, the sensations of despair, grief, fear, and crushing immobility of the soul last for prolonged periods of time, sometimes for months on end.  My family has far too much experience with this long-term version of affliction as well, but it differs from mine in that it tends to pass, although often for too brief a period.  Although my diagnosis has changed from doctor to doctor, one that has always made sense to me is a combination of major depression at times with something called dysthymia, from the ancient Greek for 'melancholy'.  It is more defined by constant, that is lasting longer than a typical depressive state, feelings characteristic of depression but at a lower intensity.  Instead of occasional bouts of strong depressive symptoms, for a majority of nearly the last decade I have dealt with general feelings of anhedonia and in what is most apparent to me, an overwhelming fatigue.  Both the NIMH and the National Alliance on Mental Illness have a variety of information available about the different types of mental illness.


PET scan of depressed brain vs. nondepressed
(Photo Credit: WebMD) 
Nearly $200 billion in earnings are lost each year from depression related illnesses, and almost 1.4 million people are on federal disability plans due to depression (the linked article provides a good overview on the economic impacts of mental illness.)  As many of you know, I have now been out of work for very nearly a year, and while I did have some concerns with the support I received from my employers and with creative differences, I left my job contracting out writing for the armed forces primarily due to my depression.  Although I have improved in a lot of ways since my departure from employment, I find myself wondering if those improvements are only temporary, and that if the stress of returning to the work force would lead to a serious relapse.  That's why I decided to try the TMS.

Transcranial magnetic stimulation, also known as TMS, is "an external device that delivers transcranial pulsed magnetic fields of sufficient magnitude to induce neural action potentials in the prefrontal cortex to treat the symptoms of major depressive disorder without inducing seizure in patients who have failed at least one antidepressant medication and are currently not on any antidepressant therapy".  At least, according to the FDA.  What it amounts to, and this comes from my layman's understanding of the science involved, is that essentially one is hooked up to a magnetic coil (which is similar to a magnetic resonance imaging (MRI) device) which sends pulses into the prefrontal cortex, which corrects the "polarization" of the neurons in this area of the organ.  I call this, affectionately, "brain shockies".

Now, there have been a few differences in my treatment compared to the letter-of-the-law description of approved TMS. While I have certainly failed one antidepressant therapy (I have actually been on nearly 25-30 different psychiatric medications since 2004, over ten of which have been antidepressants) I am currently on a number of medications: these include lithium (a mood stabilizer primarily used in bipolar patients), risperdone (a antipsychotic also used for mood disorders) bupropion (an atypical antidepressant) and trazodone (a relatively outdated antidepressant used primarily to assist sleep).  I also address low testosterone with Androgel and alertness with Provigil.  According to the treatment plan assigned to me by my physician, I am continuing with my medications while undergoing the treatment.  The goal is that once the treatment is completed, at least some of my medications could possibly be discontinued.

Photo credit: NeuroStar
This is a novel treatment.  While attempts at brain stimulation using magnetic forces have been performed as early as 1910, the first modern study of TMS was not performed until the mid-1980's.  The rTMS device utilized by Neuronetics (manufacturers of the Neurostar repetitive Transcranial Magnetic Stimulation system used in the United States) was not even cleared fully by the FDA until two years ago, and treatments have only truly been undertaken using the system in the U.S. since 2008.  Taking this into account, insurance companies are particularly reticent to even begin to assist in paying for the treatment.  There just hasn't been enough time for this treatment to undergo the research it needs to become a more prevalent procedure.  But, there are numbers available, and this is what I think of as "The $6,000 Coin Flip".


Photo credit: NeuroStar Patient Education Video
This graph is from the Neuronetics video attempting to entice people to select TMS as a treatment, with the statistics coming from the studies performed in the late 2000s (sponsored, of course by Neuronetics).  It shows, as you can see, that about half of patients in the study performed had a significant reduction in depression symptoms (described as approximately 30 percent improvement on questionnaires following treatment).  Now the other column is much more enticing.  A thirty-three percent chance of complete remission? That sounds almost too good to be true.  But, its enough.  All of those statistics and the cost aside, I'm willing to take a coin flip.

As I've mentioned very briefly, the procedure as provided by my practitioner costs, bottom line, six thousand dollars.  That's a lot of money.  A hell of a lot of money.  And also as I've briefly mentioned, insurance companies are very reluctant to pay for the treatment, at least up front. While occasionally people are able to appeal to their company for partial or complete reimbursement, sometimes the process takes up to two years.  As an aside, I don't actually have insurance at the moment, due to having hit 26 and no longer being employed.  We are petitioning the Office of Personnel Management and Blue Cross/Blue Shield in order to be covered as being disabled, but its been an absolute nightmare.  Despite all of this, I actually got kinda lucky on the price.  My doctor, Joshua Sussal out of Greenbelt, has quite a bit of faith in the procedure, and provides it at a discount: half.  That's right, most TMS procedures cost patients twelve-thousand dollars, and that in most cases is out-of-pocket.  While it took me a long time to come to grips with this additional expense when I have placed so much burden on my family being out of work for so long, after a month or so we finally decided that it was time.

Now that I've gotten the logistics out of the way, I intend to start my next article with my experiences at the beginning of the treatment.  Its been a long road, but I think I might just be starting a brand new journey. Please let me know if there is any part of this that is confusing (as I can tell its long-winded) or that leaves anything out.

-Benjamin

Friday, August 16, 2013

New Beginnings


Good evening, ladies and gentlemen.  Today marks my return to the blogosphere after a four-year hiatus.  While I have continued to write in some form or fashion since the bulk of my blogging occurred in 2008, be it personal prose or as part of my slowly budding career as a hack journalist, I haven't truly considered returning to this public, and personal, medium until the last few months.  That is mainly due to the fact that, besides my frankly pointless lamentations as a long-time sufferer of depression which only benefited me through a need to talk to someone (anonymous readers though they may be), I haven't really felt that I have had anything interesting to write about, aside from occasional commentary on the goings-on in the world at large.

This, I believe, has changed.  As of Monday, I have begun a new, 6-week treatment for my struggles with mental illness, one that is relatively new and untested.  Transcranial magnetic stimulation, also known as TMS, is that treatment and is one that I, along with the rest of my family and support group, am making a huge emotional and financial investment in.  I'll be getting into some of those investments more in detail in my upcoming posts, which will begin properly tomorrow morning.  Something I had noticed when I was conducting my research of the procedure while still in the decision making phase was how little true, end-user based results and experiences were available through the Internet. Certainly, there was a comparative plethora of information from the manufacturer and from my own physician, but I was looking more for information coming from the patients themselves.

It is primarily because of this I have decided to start writing a blog again.  I intend, over the next six weeks, to write about my trials and tribulations, the harms and benefits that I will and have encountered from my treatment.  As I mentioned, I'm a little bit behind as I have already started the treatment, but I intend to start from my recollections of the week leading up to Monday, most of which I spent in Ocean City; oddly enough, I did have a brief depressive dip while there.

Now, I am intending to write about other topics besides TMS as I see fit to discuss and am interested in writing about, and I hope to continue the blog for some time after the treatment is over with, but for the next month and a half the bulk of my posts will be regarding that topic.  Also, while for some the topic of depression and mental illness is one that is very grim and serious (and it is), I hope to write with a lighter tone.  That's not to say I will not be aiming for complete candor, but the only way I've been able to deal with this for the past nine years is to, when I have been able, laugh: hard and irreverently.  Hopefully that doesn't turn anyone off from reading.

I want you to know something: optimism has seized my very soul.  Only, it is that type of blind idealism that comes from an arduous journey who's nearing end produces the light at the end of the long tunnel and the promise of a bright new day.  Like a sailor who sees land after months at sea, the only question remains: is it a new world, or just another mirage?

“In a spirit of hope and new beginnings, we linked arms like a couple of kids. Pushing aside sad thoughts, we strode off into our future.”  - A.B. Shepherd 

-Benjamin

(Note: I have taken down the bulk of my old blog posts as, after rereading them, I would be embarrassed to have them still be available.  I think my writing has improved with time and practice, and I humbly submit my future posts for your consumption.)

Sunday, June 1, 2008

The Meat Market and Denmark's Debauchery

Note: "Grillpølse med Ost" (Pan-sausage with cheese) wrapped in tortillas are fantastic drunk-food, but you will regret eating them at 7:30 in the morning when you sober up in the afternoon.

Denmark is a land of certain cultural ambiguities. Danes are shy people, insomuch that their propensity for rudeness among strangers is contingent on a more connected atmosphere among friends and family, so much that merely smiling at a person walking down the street will immediately belie your nationality (or lead that person to think you're drunk), but raucous laughter and good cheer is common almost immediately after introduction. I understand why they have a reputation of being cold, but its really an external chill.

This extends to conversational topics that people may find taboo in other countries, or in their ability to have no problem wearing extremely revealing outfits. Among first meeting many Danes, I am often asked within the first 2 minutes of conversation whom I am going to vote for in the United States presidential election, and whether or not I approve of George W. Bush. At the core of that chill, there is a open and unrestricted culture begging to be set out, and often is.

I think that this is exemplified by the nightlife, and by that I refer to Jomfru Ane Gade. Jomfru Ane Gade (or the "Virgin Anne Street", a misnomer; there is absolutely nothing virgin about it) is a circa 150 meter strip of Danish debauchery, where during the day the few restaurants attract a crowd of at most 50 people at any given time, while at night the bars and clubs transform "the Street" into a massive organism with hundreds upon hundreds of people. The Street, as I observed last night, can actually be likened to a single entity, the crowds of people either stagnant, or flowing from one side to another, making contact, either physical or emotional, regularly, and the sheer amount of people form a cohesive "unit" of partygoers and barhoppers. Aalborg, in its relatively small size, still attracts young and young-at-heart from Aarhus and Copenhagen to this small street of culture and nightlife.

I find Jomfru unique in my experiences in Denmark as a place where the self-placed cultural barrier between strangers breaks down, at least at night, to form a completely open social network. My obvious and sometimes distressing observation as an American that even the small-talk between a grocery clerk and a customer is non-existent seems to be irrelevant at the Street. Coming from a culture that I find is often too judgmental and cold despite our superficial social niceties, the openness and carefree attitude of Jomfru Ane Gade is refreshing, even though my visits to it often lead to my rapid intoxication and the resulting abysmally unpleasant hangover.

Last night was my last time that I will be able to visit Jomfru Ane Gade during my stay here in Nordjylland, and it is something that I will miss extremely. It is a representation of both the best and worst parts of human nature, and of Denmark's truly bright culture. Even I like to dance there, after a few drinks.

Benjamin