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After 14 Years of Struggling with "Treatment-Resistant" depression, I Found Help: TMS
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louis1888 posted:
I want to share my personal experience about struggling with "treatment-resistant" depression on-and-off for the last 14 years, and to tell you about the treatment that took me from my most recent episode, which was well into its thirteenth month, to 100% remission, gradually, over a six-week period.

Since completing my series of 32 TMS (Transcranial Magnetic Stimulation) therapy treatments, one every week day, for a bit over 6 weeks, I have been totally depression-free. I'm not saying this will be the answer for you, if you have severe, "treatment-resistant depression," as I did, I'm merely relating my story.

What really scared me was the fact that, over the last few years, the episodes of 100% disabling illness were growing longer and coming closer together. It appeared to me that I was looking at spending, maybe, the rest of my life in a state of major depression. That was unacceptable to me, so despite my being told that "everything that can be done has been done, and I'd just have to live with it," I kept looking and asking different doctors until I found something that appeared to offer hope—at that point, I had nothing left to lose and was willing to try anything that might even have a chance of working.

My current psychiatrist suggested TMS therapy treatments, but he cautioned me that I'd probably have to travel a good distance to get them and have a prolonged battle with my insurance company to get coverage. Both turned-out to be true, but after a series of denials and appeals, letters of medical necessity from two different psychiatrists, and an arm-twisting phone call by one of them directly to my insurance company, they approved coverage at 80% (the maximum my policy allowed). This made it possible for me to proceed. (At the time, there were only about 14 centers in the U.S. offering TMS. I have read that, since then, that number has mushroomed to 145.)

I've had 3 ECT or "shock treatments, been prescribed a virtual pharmacy of antidepressants and even, in desperation, some "off-label" prescriptions for antipsychotics! None of these things worked, although I tried for years.

TMS was approved by the FDA in 2008 for the treatment of depression, the first non-surgical, non-drug treatment for depression that the FDA has approved since "shock" treatments were approved in the 30s.

The sole manufacturer of the TMS machine in the U.S. quoted these statistics to me: that 1 out of 3 patients experience COMPLETE REMISSION, and that 1 out of 2 experience SIGNIFICANT RELIEF. Maybe I was just one of the lucky ones who got completely better, but that's what happened to me.

The basic principle behind it is this discovery: just as they have identified which physical parts of the brain control finger movement, the sense of hearing, smell, speech, and so on, they have now identified the little part of the brain that seems to control mood and depression. It's only a 2.5 inch formation called the left prefrontal cortex, on the left side of your brain near the front. They shoot electromagnetic pulses through your skull to that target area only, and they've found that it stimulates that part to work again. When that happens, the depression goes away—it sure did for me, anyway, when NOTHING else worked. By the way, I had no memory-loss or other side effects.

Unlike ECT, which shocks the whole brain, causes a seizure, unconsciousness, and, in all to many cases, memory loss, during TMS treatments you are fully awake, can talk or even sleep, they don't hurt, and they have no side-effects, that I experienced, at least.

louis 1888
Reply
 
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Caprice_WebMD_Staff responded:
Hi Louis and welcome to WebMD!

Thanks for sharing your story here and letting others know that, whether it's TMS that helps or something else, there is hope out there.

I'm so glad this treatment was such a huge help to you. It wonderful.
 
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Cindyisme replied to Caprice_WebMD_Staff's response:
I may be starting TMS treatment this coming Monday.
After four good years on prozac I have had trouble find another antidp.
The only down side so far is that the psychiatrist will be taking a one week vacation one week after I start treatment...oh well.
 
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An_203486 responded:
I just posted about what else to do when anti-depresants dont work and then I read your post...and you tell me if it also helps with severe anxiety and panic attacks or panic disorders....I have been diagnoised with Generalized Anxiety Disorder....I worry about everything but also have depression but anxiety is the worst....do you know if this treatment is also helpful for anxiety?? thankyou so much and I am so glad you are feeling better...Its horrible living your life this way year after year so I am so happy for you....
 
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louis1888 replied to An_203486's response:
Thank you for your question, which I'll try my best to answer.

I believe that clinical depression and anxiety disorder are from the same cause. In other words it's like it's depression/generalized anxiety disorder--it's all part of the same syndrome. I, too, have had panic attacks.

When I was depressed, no one worried more than me. No one was more scared of things than me. I imagined the worst in virtually every aspect of my life. I figured I'd end up as a mindless bum on the street, totally disabled, with no way to make a living and being a burden on society and those around me, just the opposite of what I passionately wanted.

Over a six-week series of TMS treatments, one every week day, I noticed nothing for the first two weeks, but during the third week, I noticed that my long-gone appetite was returning. During week #4, I noticed that my my mind was clearing-up to the point where could sit at a desk and do mental types of work, like using a computer. In the middle of the fifth week, I noticed that I was beginning to enjoy things again--little things like watching a movie on TV, and I started running on the hotel's treadmill for 30 minutes a night. (In order to receive my treatments, I had to travel four hours from my home and stay for six-weeks in a hotel room by myself.)

It was the first time in 30 years that I was without the daily "cheerleading" of my wife (she had to work--she's a registered nurse), but of course we talked on the phone every evening, and she even came to visit me a couple of times.

However, by the end of the fourth week of treatments, I conservatively estimated by improvement at 50%. I was well enough that I could drive myself home for weekends (four hours each way, over strange roads, usually at night).

In the middle of the sixth week of treatments, I realized that I was completely normal again--absolutely 100% remission. I had all this energy and wanted nothing more than to get back to work.

The pdoc said I should have a couple of taper treatments, so they added two more, spaced-out a few days apart, at the end.

I was ECSTATIC to be my normal self again, in top form, and happy as a clam. My wife was ecstatic. My kids were ecstatic.

My last "taper treatment" was on 3/19/10, and all I can tell you is that I have been absolutely depression-free, every moment of every day since then. I've started a new business, written and directed television commercials for it, built a website, put together a 32-page color catalog featuring my inventory, and finished the marketing of a screenplay I had written that a film-rights manager in L.A. says he wants to try to sell to a major motion picture studio.

So, apparently, TMS worked for me, when NOTHING else did. (I had even been told that "everything that can be done, has been done, and I'd just have to live with it." But, that was unacceptable to me, so I tried different pdocs until I found one who recommended TMS.

I did thorough research on it--it's all over the web, and I became convinced that it was worth a try--after all, I had nothing left to lose.

The biggest obstacle was that TMS is so new (it was approved by the FDA for depression only in 2008), that the medical insurance companies routinely deny coverage on the basis that it is "experimental." It took a months-long battle with them, which included letters of medical necessity from two different psychiatrists, and an arm-twisting phone call from one of them directly to my insurer, enduring a series of denials and appeals (you can appeal ANY denial for 180days) before my major medical insurance carrier approved coverage at 80%, which allowed me to proceed. You see, the treatment centers presently have to make the patients pay up-front (about $9000.) for the treatments, because the history has been that insurance won't cover it.

This post is telling me that I've used-up almost all the "characters" allowed for a post. I'll try to submit this one and then finish-up in a second post

louis1888
 
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louis1888 replied to Cindyisme's response:
Hi, this is louis 1888 continuing to respond to the question posted previously.

By filing simple medical claims with my insurer, I have received checks totaling about $9400., (a mere $200 or so short) of what I had to pay up-front for the treatments. That was for 80% of the cost, covered by my primary insurer. Because I have been classified as 100% disabled by the Social Security Administration, I have medicare as a secondary insurer. I have filed a claim for the remaining 20% of the cost with them, but I haven't heard back from them yet.

Like I said, I've done a lot of research on this, and while I was an outpatient at the treatment center, I asked every question I could think of. I've spoken on the phone to a researcher at Columbia University School of Medicine's Brain Studies lab, which was recommended to me as being one of the leading research facilities ub the U.S., having conducted over 20 years of clinical trials on TMS as a treatment for depression. I asked her two questions: 1. What happens if a relapse occurs. She said that, in responders, a series of five or so "maintenance treatments" (about a week's worth) was sufficient to put the patient back into remission. She even said, that, in a few cases, a single 40-minute treatment was sufficient.

The second question I asked her, was is there a "burnout effect," that is, if you undergo these maintenance treatments for years, do they eventually seem to have less and less of an effect (as I've found to be the case with antidepressant drugs.) She replied that, in 20 years of clinical trials, they have seen NO EVIDENCE of that.

So, maybe, just maybe, I have found, after 14 years, a permanent solution to the depression that has done its best to destroy my life.

In a nutshell, the science is this: TMS was initially used for "brain-mapping," that is, determining which physical parts of the brain control things like the sense of smell, touch, hearing, and so on. They have now identified that small part of the brain that is thought to control mood and depression. It's just a 2.5 inch formation called the left prefontal cortex, located on the left side of your head, near the front.

After they painstakingly identify the location of this "target area" on in your particular head (they have a procedure for doing this), you sit in a high-tech chair that looks like a dentist's chair, a magnetic coil is placed on the outside of your head, just over that spot, and between 3000 and 4000 electromagnetic pulse are delivered through your skull to that target area only. You can feel them, and they do cause a very mild discomfort that lasts only about 5 seconds, while the pulses are actually being delivered. Then, for about 30 seconds, nothing happens, and then the machine plays a little musical scale to let you know the next 5-second burst of pulses are coming. Each treatment lasts about 40 minutes, and during the whole time, you are in a reclining position, totally relaxed, but your head is held absolutely still by a support on the right side and by the magnetic coil on the left.

All the while, a nurse sits at her own computer that tells her if the "target area" has moved, in case you wiggle or something. The positioning is so exact that it's checked by a laser beam. The chair itself is programmed to automatically shut itself off if it senses that that target area has moved at all, but that never happened to me. At the end of every 40 minute session, I did notice a MILD headache and a period of SLIGHT disorientation that lasted about half an hour, so that I had to be more careful driving back to the hotel after the treatments than I was when I was arriving.

The MILD headache went away EVERY TIME, in about an hour, after I returned to my hotel and took 600 mg of Ibuprofin and also are a meal.

Look, I don't know if this is the answer for you or not--I'm just telling you what happened to me.

I'm sorry to go on so long, but I have rather a lot to say about this subject.

louis1888
 
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louis1888 replied to louis1888's response:
One more thing--an important thing I forgot to mention previously is that the thinking is, once the major medical insurers realize that TMS is not only non-experimental, but very effective, they will be saving money in the long run, when compared to inpatient ECT treatments, hospitilizations and injuries suffered by people who have had auto accidents caused by driving while confused by depression, and the treatment of people who have undergone failed suicide attempts, TMS is a bargain for them.

Make this point loud and clear to you insurance company. MONEY IS THE LANGUAGE THEY UNDERSTAND.

Anyway, once this happens, and TMS becomes routinely covered, then the providers will be able to drop their requirement that the patients having to pay up-front (maybe this is already happening), thus making these treatments available to the people who need them the most without paying a dime.

Just to reiterate, if drugs are working for you, count yourself lucky. TMS is for the people, like me, for whom the drugs stopped working.

louis1888
 
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zzzzbob responded:
Thank you! Thank you for posting your experience because I'm looking for people who have gone through these TMS outpatient treatments.
 
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jaciladybug replied to louis1888's response:
I have been depressed all of my life. I have been in and out of the hospitals, twice for suicide attemps. The last one was in the early 80's. I was a immaculant house cleaner, I couldn't stand a piece of lint on the floor, I cooked great meals, worked in a factory until the breakdowns, took very well care of my two kids, and was caregiver to my mom, dad, and sister. Now my husband and I, who has been married for 39 years, took on custody of our grand-daughter, do to her mother being on drugs, doing hard drugs, and leaving her with a male-roommate. My husband is 61, and I am 58, and I am on Zoloft. There is not a pill out there I haven't tried, with no sucess. I have physical problems too, and am in a hospital bed to sleep. I have seizures, but they are under control. I do not want to be depressed like this my last years. I hate it, that I can't do what I use to do. I was like Mary Poppins. I wanted everything to be perfect, and trust me, my house isn't perfect. I cry, I am lonely, I have no one to talk to. I love my grand-daughter more than life itself, but it has been a minor adjustment, but then again, she has brought some life back in our house. I do not even have a table and chairs. Before, I would of went nuts. But now, I am at the place I don't care. I have discs out, spurs, herniated discs, etc. I can't hardly walk. I had my stomach taken out in 1994, over half of it by a doctor who wanted to make a name for himself, by trying to do it lapascopic. It didn't work. I didn't have it done to lose weight, and if you saw me, you would agree. I had bleeding ulcers so bad, my blood count was terrible and I got two units of blood every month to 2 months. The stomach surgery was suppose to last 4 to 5 hours, and I was in there for 10. Now I did do stuff with my children like picnics, swimming, etc. but I had to force every move. My husband had to work two jobs to make it, because my parents were very poor, and he would give them money, and he paid for their funerals, the same with my sister. First of all, I hate myself. I have always hated myself. But everyone seemed to like me, and they would tell my husband how much they respected me for holding down the fort while he worked. Now days, I don't want to go anywhere, do anything, and if I want my pain medicine, I have to go to the doctor of course, and I have even thought of trying to quit it, but my husband knows how much pain I get into, and he says no. I lost all my teeth from all the vomiting I did with my 3 stomach surgeries. Yes there were 3 trying to find out where I was bleeding from. I was so tired of the blood transfusions. It took 7 hours each time. Now my husband had polio in his left arm since he was 4, and he never complains. When he goes to use his arm, he has to lift it up with his right arm to use it. He is the most wonderful, honest man I have ever met. I would get the TMS in a heartbeat if I could. I wouldn't know how to act, to get up and not be depressed. Of course, I am real careful around my grand-daughter, because she has been through enough. My daughter, her mom, has stold off of us, used my credit card without asking, and what a mess.. My husband has disowned her. We had a beautiful 33ft. camper, 2 tip outs, used but liked new, but ended of selling it do to my daughters problems. I have entered so many sweepstakes trying to win my husband one, because he wants to fish, and park it on a lake. But I am the unluckiest person alive. Have you ever wanted something so badly, so for once you can say, hey, this is for you, for all you have done for taking care of me, and my family. I couldn't win a hamburger. But I am so interested in trying those TMS treatments, I would give up getting dentures, etc. You know we were always poor at home getting out of school, and then you get older, and we didn't even take a vacation, because of the money, and watching over my parents. I would love to know more about the TMS. I have tears rolling down now. I want to walk out
 
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louis1888 replied to jaciladybug's response:
All you need t0o do is go to the Neurostar website. or, just search for TMS. It's all over the internet now, because it's new. Do the research to find out all about it. zi hope this helps some.

louis1888
 
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susiemargaret replied to louis1888's response:
hello, louis and J --

first, thank you so much, louis, for your acct of your experience with TMS. i had heard about it but had never gotten anyone's perspective who had had it.

for J and other readers, the neurostar website is at http://www.neurostar.com/Home.aspx .

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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vrydprsd responded:
I have been fighting major depression for @15 years and have on over 25 medications, none of which work. I have been to see my 4th psychiatrist, he recommends ect. He does not believe tms would be beneficial because of the length/severity of my depression and because I have tried so many med.s. Was your case this extreme? and what can you tell me about your ect experience, did it help?
 
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jazz1910 responded:
Fascinating and a great story. I had a major concsussion when I was 9 years old in the same area as the left prefrontal cortex, I have suffered from depression and anxiety ever since. Unfortunately, no doctor ever told me that depression is caused from brain injuries. So I spent a gazillion hours analyzing my family and thoughts and wasting a lot of mony and getting very frustrated. Drugs work for me but the side-effects and long term effects are ridiculous. I am wondering if this would work for me. So the doctors are basically saying that the left prefrontal cortex of depressed people is malfunctioning, wether it is genetic or due to a brain injury, it is clearly a type of brain damage and this TMS heals that area?
 
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downhigh replied to jaciladybug's response:
I'm a 24 year old man who's been depressed my entire life, and, though we obviously are in different life situations, I just wanted to tell you that, for what it's worth, you're not alone. I've struggled with every treatment on the market, every pill, clinic, I've had ECT treatments 16 times with no results. I guess I just KNOW how bad your hurting, and I can tell what a great, caring person you are, and I wanted to tell you that you're not the only one who has those thoughts and feelings. I have the very same feelings, all the time. I'm not doing very well now, and as I type this, tears are rolling for me too, but I hopefully knowing that somebody is right there in the darkness with you...hopefully it'll mean something. All the best, hope you get to feeling better.
 
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louis1888 replied to vrydprsd's response:
YES! My case was that extreme! Your recounting of your experience sounds like my own.

I've had 3 ECT treatments that made me worse--much worse. Maybe they help some people, but in my case, I refused to have any more and left against medical advice (I was a voluntary inpatient in a hospital psych ward.)

Whatever meds you've tried I bet I've tried too, and more. NOTHING HELPED.

TMS not only helped, it (over a six week period of 32 treatments) brought me back to DEAD SOLID NORMAL. I went from being 100% disabled to 100% able. I now own my own small business.

I don't know if your experience will be as effective as mine, but i can tell you I've been through eight pdocs before found one who recommended this treatment. It's so new, many of them don't know much about it.

My advice to you is to hock the farm if you have to, to get these treatments. That's what I did, and I'm 100% depression-free now, for the first time in 14 years.

louis 1888


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