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CrazyRedhead

Considering TMS therapy ?

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My pdoc wants me to consider doing either ECT or rTMS therapy.

Personally, I'm too scared to try ECT, so she gave me some info on a place near me that does the Neurostar TMS..

I'm guessing that "Neurostar" refers to the brand of the machine they use?

My insurance would cover it, but co-pay would be expensive........Basically, just looking for anyone on here that did it. and what their experience was like.......Did you improve, stay the same, or get worse?

Also, does anyone know what the chances are, percentage-wise, of getting any improvement?

I contacted the provider that does it near me, and she said that 2 out of 3 people experience at least some improvement, but what are the real numbers?.......I've tried to research it, but unable to find any solid data.

Edited by CrazyRedhead

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I tried TMS in the spring of 2016. My pdoc was pushing ECT, but I was scared. TMS seems more approachable.

Yes, NeuroStar is a brand of TMS machine. The place I went used the Brainsway Deep TMS system. My employer-sponsored health insurance covered the costs, though I had to pay some share of it (I don't remember how much the copay was, sorry).

The great thing about TMS is you don't need an escort/driver for your appointments. You have to go very frequently, but you can drive afterward, so no depending on loved ones for transportation/aftercare.

Most people find it is no big deal. You sit back in a comfortable chair, and they strap a helmet to your head. Some places have Netflix or something for you to watch while receiving treatment (20-40mins/day, depending on the system and so on). You'll hear a tapping sound when the machine is on. They adjust the frequency based on what makes your thumb twitch. 

I only received 4 dTMS treatments. I found the tapping very painful, kind of like a woodpecker with a ballpeen hammer on my temple. Even when they had the frequency well below the therapeutic threshold, it was still very painful. My experience is highly unusual. 

I tried ECT after I couldn't do the TMS treatments. I don't regret it, despite the costs (had to take a leave of absence from work, I have some memory loss, and I'm still paying the bills). The benefits of ECT didn't last for me, though they do for many people. I would do it again.

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@Geek, thanks for the feedback on your experiences.........I'm sorry you were unable to finish the TMS course.

So you did see some improvement with the ECT, but it didn't last?

How extensive was your memory loss?

Edited by CrazyRedhead

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On 9/24/2017 at 8:10 AM, CrazyRedhead said:

@Geek, thanks for the feedback on your experiences.........I'm sorry you were unable to finish the TMS course.

So you did see some improvement with the ECT, but it didn't last?

How extensive was your memory loss?

For me, the ECT helped while I was getting treatments 2-3 times a week. As we tapered off to once a week treatments, the effect seemed to taper down too. Eventually the costs (the bills, and the time off work) seemed greater than the benefit... but I plummeted when we stopped completely. The doctors wanted me to try a course of bilateral ECT where I did a few weeks of 2-3 sessions/week, but I couldn't take more time off work.

I had some memory loss. I mostly don't remember stuff that happened shortly before or during the period I was receiving treatment. I saw movies with friends... no memory of them (which makes sequels a little confusing). My best friend came from out of state to visit... which I only know because I have dated photos of the weekend he was here. I have vague memories of my parents visiting for a weekend.

The memory loss was worst when I was getting multiple treatments a week. During that period I stayed with friends. After a while, we tapered down to once a week maintenance treatments, at which point I was well enough to move back home (where I live(d) alone with just my dog to look after me). I worked 4 days a week for 3 months, getting ECT on Fridays. I kept copious notes of what I was working on, my reasoning for decisions, and so on. My work did not know I was getting ECT, just that I was getting "medical treatment" for a chronic illness. I had a lot of feedback that they were happy with my work and I received a substantial raise about 3 months after returning to work full time. 

These days, I have occasional moments where it's obvious I'm missing something, but they're unusual and minor. Example: Recently, I was unloading the dishwasher at my friends' house, where I lived for 5 years. I couldn't remember where a couple of lesser-used items lived - plates, cutlery, etc. were fine, but somehow I couldn't remember where to put the box grater and the pie server. Weird, right? But nothing I couldn't brush off. They showed me, we laughed, and I moved on.

Things that were "big", I held onto. My memories of my childhood, for example, are as clear as ever... I remember why I am estranged from my mother, why I made choices like where to go to school, what to study, where to work, where to live.

ECT is a big, scary decision. I totally get that. My pdoc pushed it for a year before I gave in (shortly after TMS failed), and I was terrified. My brain/intellect is a prized possession to me. But depression was fogging it up, making it harder to think and harder to remember stuff as it was. The losses from ECT were not insignificant... but they were minor and worth it, in the end, even though it was not a cure for me. If I someday have the financial resources to be able to try a round or two of bilateral ECT, I will.

Remember, the effects are cumulative. If it starts to be too much you can just stop going, or try spacing out the treatments. Studies show that while there is a cognitive impact, function generally returns in the months after you stop the treatments. 

 

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@Geek, thanks again for the info.......I think I'm going to try TMS first, after I save up some money for the co-pay.

Then, if TMS is unsuccessful, I'll have to re-visit my options......I really appreciate your input....

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Crazy...I did bilateral 6 times after trying unilateral the previous 6 times ...effects lasted for months 

later did 3 bilateral...lasted long enough for me to get all my med adjustments in place 

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I wish I'd never done ECT. Far too many horror stories and lives ruined - I highly suggest you look at both sides of the coin before considering it. I don't know a single person that has benefited long-term from ECT, but I know many who either relapsed or became far worse then they were prior to doing ECT. I had a friend on FB who recently killed herself because of the effects of ECT.

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Igoryok - Your posts on this forum regarding ECT have proven to be hyperbolic to the point that they no longer carry any credibility whatsoever. You know "many" people who have suffered from ECT? Personally? I think not. Regardless, your own personal experience is the only experience you can speak to with any relevance - the rest is only your opinion, which has manifested in previous threads as anti-treatment propaganda. The Moderating Team has taken note of it, and will not permit a repeat of this kind of fear-mongering that dissuades members from considering a proven effective treatment in consultation with their healthcare providers.

You've had your say on the subject. Now leave it alone. 

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16 hours ago, CrazyRedhead said:

@Geek, thanks again for the info.......I think I'm going to try TMS first, after I save up some money for the co-pay.

Then, if TMS is unsuccessful, I'll have to re-visit my options......I really appreciate your input....

I think that approach makes a lot of sense. That's how I did it too. 

I hope the TMS helps!

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I am currently undergoing rTMS. I've had three treatments so far and it's not an unpleasant experience. The doctor said that 50% improve and 10% get dramatically better. I've heard many say it has saved their lives. I haven't had side effects other than falling asleep during the procedure which most people do.

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On 10/6/2017 at 9:01 PM, mcjimjam said:

I am currently undergoing rTMS. I've had three treatments so far and it's not an unpleasant experience. The doctor said that 50% improve and 10% get dramatically better. I've heard many say it has saved their lives. I haven't had side effects other than falling asleep during the procedure which most people do.

The clinic I consulted with here said 2 out of 3 experience some degree of improvement, some more than others, while approximately 1/3 experienced no improvement at all......So what your doc said sounds about right.

Keep us updated on how it goes for you.....I like the fact that there are only minor side effects.

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Posted (edited)

It's been a miracle cure for me, even better than ECT or MAOIs. You start with many very regular treatments and taper down. Maintenance therapy is once a month to once bi-monthy. It's non-invasive, very few side effects. Does what it says on the tin. People undergoing rTMS and medical treatments have been shown to be way more likely to enter remission than those on just drugs alone. Problem: it costs.

Edited by Simba Cub

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Posted (edited)
15 hours ago, Simba Cub said:

It's been a miracle cure for me, even better than ECT or MAOIs. You start with many very regular treatments and taper down. Maintenance therapy is once a month to once bi-monthy. It's non-invasive, very few side effects. Does what it says on the tin. People undergoing rTMS and medical treatments have been shown to be way more likely to enter remission than those on just drugs alone. Problem: it costs.

Interesting....Didn't know you have to have maintenance therapy after the full treatment course.......

Yes, the main problem for me is the high cost--Even with insurance covering part of the cost--I can't afford it.

Edited by CrazyRedhead

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Posted (edited)
38 minutes ago, CrazyRedhead said:

Interesting....Didn't know you have to have maintenance therapy after the full treatment course.......

Yes, the main problem for me is the high cost--Even with insurance covering part of the cost--I can't afford it.

Oh my yes. Even people on ECT tend to need top-up treatments. Not forever though, I might add. As with drugs, the idea is to give you an umbrella under which your addled mind can heal.

Edited by Simba Cub

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I did 30 sessions if TMS, unfortunately it didn’t do a damn thing for me, much like the 24 medications I’ve tried.

its tolerable, the tapping is annoying but totally manageable. I just watched Netflix.

i was supposedly an “ideal candidate” for the procedure, falling into the group my psychiatrist said “usually” improve. I just wish I could get all that time back.

my (new) pdoc says I’m not quite to the point of ECT yet, as I’m just barely functional in my misery. But I think I’m finally going to look into IV ketamine, a clinic in my area does trial infusions for about $800... expensive, but worth a shot at this point.

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On 9/25/2018 at 12:05 AM, climber47 said:

I did 30 sessions if TMS, unfortunately it didn’t do a damn thing for me, much like the 24 medications I’ve tried.

its tolerable, the tapping is annoying but totally manageable. I just watched Netflix.

i was supposedly an “ideal candidate” for the procedure, falling into the group my psychiatrist said “usually” improve. I just wish I could get all that time back.

my (new) pdoc says I’m not quite to the point of ECT yet, as I’m just barely functional in my misery. But I think I’m finally going to look into IV ketamine, a clinic in my area does trial infusions for about $800... expensive, but worth a shot at this point.

How does Ketamine work? I thought it was basically a horse tranquiliser?

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2 hours ago, Simba Cub said:

How does Ketamine work? I thought it was basically a horse tranquiliser?

Well yeah but only at higher doses. They give you like 1/4 of a standard dose used for anesthesia. It's still trippy but your not flat unconscious at all. There are several routes of administration but I've only done the IV and I'll never do anything else cuz the IV was quick and easy aside from needing someone to drive you...oh and the ($$$$$) 

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On 9/27/2018 at 10:03 PM, Iceberg said:

Well yeah but only at higher doses. They give you like 1/4 of a standard dose used for anesthesia. It's still trippy but your not flat unconscious at all. There are several routes of administration but I've only done the IV and I'll never do anything else cuz the IV was quick and easy aside from needing someone to drive you...oh and the ($$$$$) 

Didn't know that. That's what I like about Crazy Boards. You learn things :)

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