The Help I Found: TMS

It's called Transcranial Mangetic Stimulation therapy (TMS). It ended fourteen years of episodes of "treatment-resistant" clinical depression for me. See the Neurostar website or just search for TMS. Look into it--be prepared for a long battle with your insurance co and appeal every denial, until you get pre-approval for your coverage.

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patients who, like me, had severe, “treatment-resistant” depression. If the meds (or even shock treatments) work for you, as they seem to do for some people at some times, and you’re willing to put-up with the side effects, count your blessings and more power to you.

But, if you knew what I've been through during the last fourteen years, the thousands of dollars I've spent on psychiatrists, meds, and treatments of other kinds, well--the list is extensive, and I was still a walking zombie.

Two final points: I’ve seen advertised on the internet some sort of magnetic gadget they want you to buy that’s supposed to relieve depression by delivering magnetic waves to your head, that you can use yourself, in the comfort of your own home. I’ve never tried those things, so I don’t know, but I suspect that they don’t work and that the sellers of such items (IN MY
OPINION) just want you to pay the $100. or so for the gadget. As I said, I have researched the whole treatment range thoroughly, and in my reading, I’ve never seen a reference from a reliable source that says they work.

The TMS machine is no simple gadget. I was told that they cost $50,000 each (I would’ve guessed more). After painstakingly identifying the location on your head of the target area at the beginning, the psychiatrist programs the chair’s own computer so that its movable parts hold you in that exact position, which, as I understand it, is individually programmed in the chair FOR EACH PATIENT.

During the entire treatment procedure, the nurse watches a screen at her own computer, to make sure your head hasn’t moved off the target area, which is checked for accuracy using a laser beam. Your head is held in position by a support on the right side and by the magnetic coil on the left, so that it’s not supposed to move at all. (The chair is supposed to shut itself off if it senses the target area has moved, but that never happened to me.) All of this sounds uncomfortable, but it’s not in the least. Your head is held immobile, but in a comfortable, relaxed position, and the treatments are applied while
the chair is reclining you comfortably with your feet held up. I was told that some patients even fall asleep during the treatments, but I never did. I just talked to the nurse to make the time go by faster.

There is another treatment that apparently works, even for many of the very worst cases: A Vegal Nerve Stimulation Implant—a surgical procedure wherein an electronic device (almost like a pacemaker) delivers electrical stimulation to a nerve in the back of your neck called the Vegal Nerve.

I have read a book written by a patient whose severe episodes of clinical depression lasted for as long as five years at a time, and who got total relief using this procedure. (The book is called: OUT OF THE BLACK HOLE.) The only problem is, the procedure and follow-up maintenance costs about $30,000. and to my knowledge, no one has ever been successful in getting an insurance company to bear even part of the cost. Also, it takes about a year to work, if I understand correctly, and it doesn’t work at all for some
patients. One of my psychiatrists told me that he had five patients who had undergone this procedure. Out of the five, three were apparently helped a lot, one was unaffected, and the fifth actually asked to be un-implanted.

So, you might ask, if TMS is so great, why doesn’t my psychiatrist
recommend it? Again, in my opinion, there are two reasons: some of these doctors went to med school, etc., more than 20 years ago, and they weren’t taught about it and haven’t kept up with the latest developments.

A lot of psychiatrists DO know about it, but they also know that TMS is not readily available and probably won’t be covered by your insurance, at least without some long-drawn out battle, as I had to go through. They are correct in that TMS is not readily available—unless you’re lucky enough to live near one of the 14 (I believe) centers in the U.S. currently offering the treatment. On their website, Neurostar has a program that allows you to find the closest provider to you.

Listen to me. After fourteen years of struggling with this illness, watching my family life, financial well-being, and ability to enjoy ANYTHING deteriorate around me, while I suffered helplessly, every single day, for periods of more than a year at a time; after going through doctor after doctor—I’ve lost count how many, really—I came away with this opinion:

There is a wide range of competence, knowledge-base, and treatment approaches among the group we call psychiatrists. Realize that they are not gods. They don’t know everything, and you are not at their mercy. There are good ones and bad ones. Keep searching until you find one of the good ones, who is up-to-date on the very latest clinical studies. This is not too much to ask of someone who purports to be a specialist.

In my case, the closest TMS provider to me was a four-hour-drive to a different state, where I had to stay in a hotel for the entire six weeks and be away from my family, etc. My wife was motivated enough that she negotiated a special long-term rate at a very nice place near the Lindner Center, for a fraction of what they normally charge on a per-night basis.

Look, even after all of this, when I went in for the treatments I was skeptical. I gave it maybe a 30% chance of working, I guessed—after all—nothing else had worked for me, why would this? But I was so desperate, I had nothing to lose. At the end of the second week of treatments, I noticed that my long-gone appetite was returning. By the end of the fourth week, I conservatively estimated my improvement at 50%. By the end of the fifth week, my estimate was of an 80% improvement. Midway through the sixth week, I realized that I was completely better—100% remission, and that has continued ever since then, despite being in some quite stressful life circumstances.

By the way, one final point—on the subject of meds--AND THIS IS REALLY IMPORTANT:

My psychiatrist at the Lindner Center of Hope, in Mason,
Ohio, told me to just keep taking whatever I’ve been taking and not to worry about it. If you’re better or not, be very careful about stopping your meds. At the end, when I was all better, I asked him why I should keep taking all
these psych meds: (80 mg/da prozac/60 mg/day Cymbalta/150 mg/da Nuvigil/3mg/da Clonazapam/10 mg/da Ambien, if they’re not helping, cost a lot of money, and have a few unwanted (sexual, in my case) side-effects. He said that I could probably, VERY SLOWLY, taper-off one-at-a-time. YOU DON’T WANT TO ROCK THE BOAT. He suggested I start with taking 30 mg of Cymbalta instead of 60, and leave the rest alone, until my psychiatrist at home told me to taper some more.

By tapering slowly, I’m talking about doing it via my doctor’s advice, and it will probably be 1-2 years before I’m off of most of this stuff. I don’t know if I can ever get off Ambien, because sleep is vitally important to stay mentally healthy. When I’ve tried to get off the benzodiazapene tranquizers, such as Clonazepam, Ativan, Xanex, etc., (which are all quite addictive, in the long term), I absolutely could not do it when I was depressed. However, during the times when I was better, it was a “piece of cake” IF YOU DO IT SLOWLY ENOUGH.

With your doctor’s approval, you make out a reasonable taper schedule and stick to it, unless the discomfort becomes too great—then level off for a while. It doesn’t matter if it takes you a year or two to taper off these things, as long as you’re working in the right direction.

Back to the antidepressants, I really hate to even bring this up, because, if you’re like I was, and you’re miserable, you want to go all-out, gung-ho, and fix the whole problem today! It’s simply not possible to do it quickly. Stopping any of your meds suddenly or too fast could put you in the hospital or worse. So, I’m taking my doctor’s advice, and tapering very slowly, just one at a time—a process that might take two years, but what does that matter if you're well?

In my (non-professional!) opinon, if you are severely depressed, what you need is to have your left prefrontal cortex (only) stimulated electromagnetically, using TMS. But, stopping your meds on your own is
not the answer, and it could be quite dangerous!

By the way, the inability to enjoy anything—not your favorite book or movie, not what used to be your favorite food or activity, not your spouse or children, not even a television show, is a symptom of severe depression called anhedonia.

It is an established scientific fact that anhedonia is a common symptom of severe clinical depression. In my case, it was impossible to enjoy ANYTHING, not experience a single moment of pleasure of any kind, for periods lasting up to fourteen months.

Anhedonia is not a come-and-go kind of symptom. It means that, for example, for periods lasting over a year at a time, it was impossible to experience a moment of pleasure of any kind, for every minute of every single day. Not wanting to inflict my misery upon others, I was, therefore, forced to pretend to be having a good time during my children’s birthday parties, visits from friends, and so on. This, in itself, was exhausting.

I have no "axe to grind"--I have no payment arrangements to endorse this treatment. I'm just trying to help others who have suffered like me.

Wishing you a speedy recovery—I know what you’re going through—

Out of Denial, Kentucky

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Jan 25, 2011
An Alternate Take
by: Tim Byrd

I did a full six week course of TMS a few months ago trying to deal with my own chronic, lifelong, severe depression.

It did nothing for me but drain my bank account. I blogged about my experience here:

I hope it works for others, but my experience with it made me nothing but cynical, closer to broke, and even more hopeless.

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