The Help I Found

[louis1888]

When reading the below, please remember that I am NOT A DOCTOR -- I AM A PATIENT JUST LIKE YOU.

For the last 14 years, I have had recurring episodes of severe, totally disabling clinical depression, each lasting between 4 and 14 months. Lately, the episodes were getting longer and closer together. It seemed to me that I was looking at spending the rest of my life in severe clinical depression, not a bright thought, and one that caused me to actually regret being in pretty good physical shape (I am a jogger when well), because it might mean that I would have to live at least another 20 years or so, suffering daily, under these conditions.

(Suicide is not an option for me because I have a wife and family to consider.) What right do I have, I reasoned, to emotionally scar my children for life, just because I had a virtually intolerable condition? So, I’d say to myself, something like: “Well, your life is effectively over, but that doesn’t mean you have the right to inflict your misery forever on the ones you love.” So, I decided I would just “tough it out,” no matter how bad it got—or how long it lasted.

I have been through at least 6 psychiatrists, have tried every med there is, and nothing was helping me, until I found THE COMPLETE ANSWER (at least for me).

It's called Transcranial Magnetic Stimulation Therapy (TMS). On 2/2/10, I walked into the Lindner Center of Hope, in Mason Ohio, (see their website). At that time I was not able to drive safely and could barely find my way into the parking lot.

After a series of 32 TMS treatments, one-a-day for six-weeks, I am in 100% complete remission. They gave me my life back. I personally consider this new treatment to be a Miracle from God, but it's a recent scientific medical breakthrough that, I predict, will revolutionize the treatment of "treatment-resistant depression."

I am back to 100% normal and went from being 100% disabled to 100% able through these treatments (gradually, over a period of 6 weeks). It's not a scam or a money-making gimmick--it's for real. It works--at least it did for me, when NOTHING else did, including ECT, a virtual pharmacy of meds, talk therapy, exercise, meditation, etc.

I have had three "shock" treatments that did not help. What I'm am talking about is nothing like ECT. “Shock treatments” shock the whole brain, cause a seizure, unconsciousness, and, at least for me, severe (especially short-term) memory loss. After three shock treatments, I was a total zombie, could not even read a book, and so I refused to have any more. Look—if they work for you, and they must for some people—more power to you. I’m just telling you my experience.

TMS, on the other hand, targets the specific part of the brain thought to control mood and depression. This is about a 2.5 inch area near the left front of your head called the left prefrontal cortex. During each treatment, between 3,000 and 4,000 electromagnetic pulses are passed through your skull to that target area only.

My amateur understanding is that the pulses create a magnetic field in just that part of the cortex, which stimulates the neurons in that area only (which has been identified as the small part of your brain that controls mood and depression). I think I have read that this technology was developed from the discovery that TMS pulses could be used for “brain mapping,” that is, determining which physical sections of your brain control things like finger movement, speech, the sense of hearing and touch, and so forth.

This was proven to me at the beginning: they ask you to hold your right hand (forearm only) up with your thumb out like a hitchhiker, only to completely relax it. The psychiatrist moves the magnetic coil in miniscule amounts until a single pulse from the machine involuntarily makes your thumb (and sometimes your jaw) twitch. (It really does, all by itself.) That tells them exactly where on the “brain map” the coil is placed. From there, the position of the left prefrontal cortex is calculated, and the exact target position is identified. This is no low-tech procedure—it’s “cutting-edge” and revolutionary and recent.

TMS treatments do cause some mild discomfort only when the magnetic pulses are being delivered, which they are in intervals lasting about five seconds each, between which nothing happens for about 30 seconds, so you have time to rest. For example, I would much rather get a TMS treatment than to go to the dentist or even to get a haircut (which I’ve always hated). On the other hand, after my experience with three ECT, or shock treatments, I would not submit to another for any amount of money in the world. Again, this may be different for you—I’m just talking about my own experience.

While the pulses are being delivered (they feel like a woodpecker is pecking on just that part of your head), there is some facial twitching and talking is virtually impossible. The “pecking” sound the machine makes is 80 decibels—so loud that both you and the nurse in the room wear earplugs during the treatments. With the earplugs, the sound is quite tolerable.

You are fully awake and in between the pulses, can talk (I talked the poor nurses a blue streak, probably boring them to death, simply because it made the 36-40 minute treatment sessions seem to virtually “fly” past, and before I knew it, they were done for the day.) Just before the actual delivery of the magnetic pulses to the target area, the machine plays a little musical scale, to let you know they’re coming.

The only side-effects I noticed were a very mild headache that followed every session and a period of mild disorientation that lasted about half an hour, so that I had to be more careful driving back (to my hotel) than I was driving to the treatment center. I soon discovered that even the mild headache vanished within an hour or so, if I took 600 mg of Ibuprofin as soon as I returned to the hotel and also ate a meal. The headache went away every time I did this.

If you think you are in my situation, you owe it to yourself to exhaustively research TMS and then act on it, as I did.

TMS is the first non-surgical, non-medical intervention for depression that was approved by the FDA in 2008, since "shock" treatments were introduced in the 30s. It's relatively new--not many people seem to know about it (including medical insurance companies).

After a long battle of denials and appeals from my insurer (you can appeal any denial), including letters of medical necessity from two different psychiatrists and an arm-twisting phone call to my insurance company from one of them, after months of determined effort, my insurance company pre-approved coverage at 80%, on a reimbursement basis. That means that you have to pay up-front for the treatments (About $9000., in 3 installments), and then file medical reimbursement claims with your insurer who pays you back later. I am now receiving thousands of dollars in reimbursement checks from my insurer. I used virtually my last money for these treatments, and I'm glad that I did.

Again, I can only speak for myself. Just look into it.

You can gain approval on the coverage before you pay anything, if you are willing to do as I did and not give up--the problem is that TMS is so new that the insurance companies are unfamiliar with it and will initially deny on the basis that it is an experimental procedure.

I eventually got coverage pre-approved before I started the treatments or paid a dime. This allowed me to proceed.

Please visit the Neurostar Website--they are the only manufacturer of the TMS machine in the U.S.

This is for-real and it works. I am now receiving reimbursement checks for 80% of the money I had to pay by filing simple claims with my insurance company. The more people who do this, the more they will consider the treatment non-experimental and will hopefully start to pre-approve coverage routinely. The insurance companies will finally realize that they are saving money in the long run, when compared to covering endless rounds of meds, doctor visits, traffic accident injuries caused by driving while depressed, very expensive shock treatments, hospitalizations, and treatment for people who have had failed suicide attempts.

The Lindner Center of Hope is affiliated with the Medical School of the University of Cincinnati. Clinical trials on TMS are now being conducted (and have been for a while) in places like Harvard University's School of Medicine, the Johns Hopkins Medical Center, MUSC (the Medical Center of the University of South Carolina, and elsewhere).

I was told by Neurostar that the centers with the most experience in TMS clinical trials are Columbia University's School of Medicine (their Brain Stimulation Laboratory) and MUSC's Brain Studies Laboratory.

I spoke with a researcher at Columbia University's Brain Stimulation Laboratory, and she told me that if a relapse occurs, it can almost always be reversed by a week or so of about five "maintenance treatments." In a few cases, she said, a single treatment was enough. I asked her if she knew whether there was a "burnout effect," in other words, "a law of diminishing returns" where the treatments have less and less effect (as I've found to be the case with meds) over years of repeated use. She answered that, in nearly 20 years of clinical trials, they have seen NO evidence of that.

IMPORTANT NOTE: If you have thoughts or urges to commit suicide, please just realize that they are merely one of the symptoms of this awful, biologically-based illness. Those thoughts will vanish when you are well, and your outlook will do a 180 degree turnaround, at least that is my own experience. So, about suicide--JUST DON'T DO IT—make yourself realize that these thoughts and urges are simply a symptom of the illness, just a part of the package, nothing more--and dismiss them. There is a way out--at least it worked for me. I can't guarantee that this will be the answer for you--they tell me it varies from patient-to-patient--Neurostar says that 1 out of three patients experience complete remission, and that 1 out of 2 have significant relief. In my opinion, these stats are conservative.

Interestingly, Newsweek recently ran an excellent article on ‘double-blind” studies using SSRIs vs a control group receiving placebos. The studies showed just a slight increase in improvement in the patients who received the actual drugs instead of the sugar-pill. These antidepressants seem to take an awfully long time to work, if they do, and who knows whether you might have gotten better by then anyway?

By the way, I’d say that this treatment is probably just for 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 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 is individually programmed 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 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: many of these doctors went to med school, etc., more than 20 years ago, and they weren’t taught about it and have failed to keep up with the latest developments.

Some 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.

In my case, that 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:

—Dr. Dallas Auvil, 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 Clozapam, 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.

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 me 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 Dr. Auvil’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 is 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!

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.

Sincerely,

"louis1888"

[Mich]

Louis1888 - Wow! Thank you for all of this information. I am a 40-something married mother of 2 who suffers from treatment resistant depression. I am in Canada and don't know if this treatment is available here or not but I will definitely look into. I will ask my psychiatrist about it tomorrow at my appointment. I take meds and see a psychiatrist twice per week and still suffer greatly. To be honest, I don't think my meds are doing anything but I am scared to come off them just in case they are.
I really appreciate you sharing this with us.....Michele