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FluffyDinosaur
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Default Aug 25, 2020 at 07:14 AM
  #1
I'm seriously considering ECT in the near future. However, my Pdoc also pointed me to TMS as an alternative. It seems to have fewer side effects, but I'm not sure if it's as well-proven and effective as ECT. Also, I'm reading conflicting stories on whether TMS is suitable for bipolar at all. Some say it could induce (hypo)mania. Does anyone know more about this?
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Default Aug 25, 2020 at 09:02 PM
  #2
My pdoc suggested tms for me but my main problem is depression.

The reason I haven't done it so far is it takes a lot of time. She said I would need to be treated 3 times a week for a number of weeks. I can't afford that time because it would be during work hours and I can't take so much time off work.

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Default Aug 26, 2020 at 02:04 AM
  #3
Yes, that makes sense. I can probably take medical leave, but still with ECT you have 1-2 treatments per week whereas TMS is up to 5 per week. From what I'm reading ECT also has higher success rates (in the order of 80%) whereas TMS only has success rates in the order of 30%.

I'm still leaning towards ECT because I feel like it's a better researched and more proven technique, even if it is more invasive. That is, unless someone knows of a very compelling reason not to do it and to go for TMS instead. A lot of the info about TMS seems to come from TMS-providers and it appears to be pretty biased (they selectively quote from the available research).

As far as I can find, hospitals in my area don't (yet) offer TMS, only ECT. So to get TMS you have to go to one of those private clinics, some of which seem pretty dodgy to me (i.e. I don't trust them). Also there's the matter of insurance coverage...

While ECT has the possibility of memory loss and cognitive issues, most reputable sources seem to say that it's mostly short-term memory loss (i.e. a few weeks/months before and after the treatment) and the cognitive issues resolve themselves within a few months after the treatment. If that's true, then I'm fine with those side effects. It's not like the past few months have been full of pleasant memories anyway, maybe I'd even be glad to be rid of those.
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Default Aug 29, 2020 at 01:16 PM
  #4
I have not experienced either treatment. I can say, however, that from what I've heard and read, ECT helps people. I have not heard of anyone in contemporary times who says they are not helped by ECT.

As for TMS, what I've heard or read is not all that encouraging. It's very expensive, but doesn't seem to provide reliable, good results. Works for a few people, not so for others.

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Default Aug 30, 2020 at 01:01 AM
  #5
Thanks Beth, that was my impression as well, and it's good to hear some confirmation of that. I've asked my Pdoc to look into setting up ECT. It seems to me like TMS is more of a hype than a proven technique at this point. Maybe that will change in the future, but for now I just feel more confident with ECT.
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Default Aug 30, 2020 at 05:55 PM
  #6
I agree. I have a shaky feeling about TMS. It seems it's not very refined yet.

Is your pdoc receptive to you trying ECT?

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Default Aug 31, 2020 at 01:50 AM
  #7
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Originally Posted by BethRags View Post
I agree. I have a shaky feeling about TMS. It seems it's not very refined yet.

Is your pdoc receptive to you trying ECT?

He is, luckily. The only thing I'm worried about now is whether the hospital is willing to let me go for ECT without requiring me to try a whole bunch of other meds first.
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Default Aug 31, 2020 at 08:45 AM
  #8
It's great that he's supportive of your decision. I have heard that insurance requires ECT as a "last resort" after having tried a number of meds. I wonder if your pdoc can override that?

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Default Aug 31, 2020 at 09:04 AM
  #9
Yeah, I think so. From what I've read my insurance no longer necessarily considers ECT a last resort, and neither does the hospital (at least that's what it says on their website). So I'm hopeful. And I did try a bunch of meds, even if there may be more options out there. So I think that's gotta count for something.
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Default Aug 31, 2020 at 06:06 PM
  #10
It wouldn't surprise me at all if ECT is now considered a more standard treatment, rather than last-ditch. There are so many meds and endless combinations...it would be absurd to require that first.

There is a man on PC; I think he's a mod- he's not here too much anymore, but it might be really helpful for you to connect with him. He's kind of an old pro at ECT and is very open to discussing it. His name is Guinness.

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Default Sep 02, 2020 at 01:14 AM
  #11
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Originally Posted by BethRags View Post
It wouldn't surprise me at all if ECT is now considered a more standard treatment, rather than last-ditch. There are so many meds and endless combinations...it would be absurd to require that first.

There is a man on PC; I think he's a mod- he's not here too much anymore, but it might be really helpful for you to connect with him. He's kind of an old pro at ECT and is very open to discussing it. His name is Guinness.
It turns out to be a little confusing. A lot of the hospitals and guidelines for treating bipolar depression say that ECT is no longer necessarily a last resort. But then when you actually contact them, it turns out that they do want you to have tried all the other things on the list.

I looked at the protocol and it seems like I did follow all the steps there, so I should be eligible. The only thing is I would have to go inpatient for five weeks... I was kind of hoping to be able to go home and try to work when I'm not being treated. I want to show some goodwill towards my employer. Also, I really want to keep seeing my therapist through all this, especially in a time like this... And my home is like my sanctuary. It's going to be really rough on me being away for so long. I'm trying to see if there's another hospital where you don't have to be inpatient all the time, but I don't know if there is. If there isn't, then I guess IP is what I have to do.

It's just really inconvenient right now what with the babies and moving to a new house soon. Gonna be hard on my wife.

It's also confusing when the depression kind of waxes and wanes every now and then. Sometimes there's a week where I'm "only" moderately depressed and I immediately start to doubt whether I should go through with this. But when you look at the big picture I've been doing quite badly for the last five years or so, and the past nine months even more so, so... ECT is kind of where I've put most of my hope right now.

I don't know, maybe I've been depressed for so long that I've gotten used to it and I don't really feel the severity anymore. I regularly take these questionnaires that my Pdoc gave me (not online tests) to see how my mood is tracking. They often say "severely depressed" even when I thought I was doing a bit better than usual. It's all confusing as heck.

I will see about contacting Guinness, thanks for that tip!

Last edited by FluffyDinosaur; Sep 02, 2020 at 01:28 AM..
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Default Sep 02, 2020 at 02:09 PM
  #12
IP for 5 weeks! That seems excessive. When I looked into ECT the deal was that the patient had to show up for the first round of treatments early in the morning and bring a driver to drive the patient home. I actually thought it was kind of odd that there was no IP requirement, at all.


Well, do check around, perhaps other hospitals don't require such an intense IP commitment.


I have my fingers crossed for you, FluffyD xx

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Default Sep 02, 2020 at 05:28 PM
  #13
Have you ever considered Ketamine?
That would not involve inpatient, and if it works for you, the results are immediate from what I've read. No waiting 4-6 weeks to see if a med works.

It is so new, I'm not sure many insurances cover it.

In all fairness, I have to admit I have an intense interest in it. However, it is not offered in my neck of the woods, and I probably couldn't afford it if it was.
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Default Sep 03, 2020 at 02:53 AM
  #14
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Originally Posted by BethRags View Post
IP for 5 weeks! That seems excessive. When I looked into ECT the deal was that the patient had to show up for the first round of treatments early in the morning and bring a driver to drive the patient home. I actually thought it was kind of odd that there was no IP requirement, at all.

Well, do check around, perhaps other hospitals don't require such an intense IP commitment.

I have my fingers crossed for you, FluffyD xx

Yeah, I thought it was a bit excessive, too. If it's IP for the first week and then outpatient after that, that would be a lot more manageable. Hopefully that's the way it is at other hospitals. Thank you for all the support!
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Default Sep 03, 2020 at 02:54 AM
  #15
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Have you ever considered Ketamine?
That would not involve inpatient, and if it works for you, the results are immediate from what I've read. No waiting 4-6 weeks to see if a med works.

It is so new, I'm not sure many insurances cover it.

In all fairness, I have to admit I have an intense interest in it. However, it is not offered in my neck of the woods, and I probably couldn't afford it if it was.

I haven't considered it. As far as I can tell it's not yet officially approved as a drug for bipolar, and it's primarily a sedative. Do you know what the effects on bipolar would be? In any case I'm kind of hoping to avoid more meds. With ECT at least I know it only targets my brain and doesn't have side effects on the rest of my body.
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Default Sep 03, 2020 at 03:37 AM
  #16
Ketamine FAQ - Here are a few Ketamine frequently asked questions.

Above is a list of FAQs from the Ketamine Institute. You have 3 infusions over 3 days, and then have one to two maintenance infusions over an extended period, then you are good to go for months to a year or more before you require a booster. They claim to have an 85% success rate compared to around 50-60% for ect.

It just seems remarkable to me. If all the hype is true, it could become the gold standard ten or twenty years down the road.
And yes, bipolar disorder is treatable with ketamine according to their site.
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Default Sep 03, 2020 at 06:28 AM
  #17
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Ketamine FAQ - Here are a few Ketamine frequently asked questions.

Above is a list of FAQs from the Ketamine Institute. You have 3 infusions over 3 days, and then have one to two maintenance infusions over an extended period, then you are good to go for months to a year or more before you require a booster. They claim to have an 85% success rate compared to around 50-60% for ect.

It just seems remarkable to me. If all the hype is true, it could become the gold standard ten or twenty years down the road.
And yes, bipolar disorder is treatable with ketamine according to their site.

That's definitely interesting. I'll be keeping an eye on that and see how it develops in the future. I don't know if it's available yet where I'm at (Europe). I'm guessing not. In any case I'm not really an early adopter kind of person, I like to watch from the sidelines for a while first. Just like with TMS. ECT to me seems like a more proven technique. I've heard success rates claimed from 50% to 90% for it. The truth is probably somewhere in the middle.
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Default Sep 03, 2020 at 10:59 PM
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They claim to have an 85% success rate [for ketamine] compared to around 50-60% for ect.
First, I want to clarify something. Academic studies have put ECT efficacy at 80-85%, not the 50-60% stated by RR.

Now, @FluffyDinosaur, I have done both TMS and ECT. I'm still doing ECT, in fact, every four weeks. So, let's look at my experience:

Sometime between 2010 and 2015 I tried TMS. I would go three times a week for what seems like four or five weeks. After that I continued for longer intervals. I think the only result I got from it was the placebo effect.

Shortly after ending TMS I started ECT in early March of 2015. The standard approach to ECT treatment begins with three sessions per week (MWF) for three or four weeks, depending on patient response. This intensive schedule is the reason inpatient is usually recommended. Some patients stop there. Others continue on with maintenance on a tapering schedule, two sessions a week for a couple of weeks, then once a week for a couple/few weeks, then every other week for a month or so, until you're at every four weeks. Some docs will go to a longer interval, mine does not.

Types of ECT: there are three methods of administering ECT. Bilateral places electrodes at each temple. Unilateral places one electrode at the right temple and the other electrode in the centre of the crown of the head. Bifrontal places the electrodes over the eyebrows.

Unilateral gets academic/professional support in the literature for causing less amnesia than bilateral placement, but I've also read anecdotal reports from patients saying the opposite is true of their experience. Bifrontal seems to still be quite rarely used. Unless the doc had a lot of history with bifrontal I would shy away from it. I'm not an early adopter, either.

Amnesia: ECT can cause both retrograde and anterograde amnesia. That means you may lose memories before the procedure and may have difficulty forming memories after the procedure. The professional literature and anecdotal evidence I've read indicates most patients recover the majority of preceding memories. For the few who experience anterograde amnesia, it apparently goes away within a few weeks.

My amnesiac experience: I cannot recollect much of my autobiographical history, but that can also be caused by a depressed brain or, on the other hand, a manic brain. I cannot speak to the anterograde amnesia dissipating because my maintenance treatments prevent that happening.

In the end, I consider it all a small price to pay for the benefits I have gained. Most importantly, I engage with my friends and family now. Of course, you walk a different path and must choose for yourself how you will go.

If I've left out anything you still want to know about, feel free to ask.

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Default Sep 04, 2020 at 01:45 AM
  #19
@Daonnachd: Thank you very much, it's extremely valuable to hear from someone who's undergone both procedures. I'm glad to hear another confirmation that ECT seems to be the most reliable technique. It makes me more confident that I'm walking the right path.

I think I can deal with temporary retrograde and anterograde amnesia. I could even deal with permanent amnesia for the weeks/months prior to the procedure. Most of those memories I'm not particularly fond of anyway. And the depression has already compromised my cognitive abilities and my memory. I'm actually hoping the ECT will restore that.

Longer term memory loss would be more disconcerting. As you mentioned the risk is smaller, but as your case demonstrates it is a real possibility. I would consider it worth the risk, but I'm really hoping it won't happen.

What I really could not deal with is permanent cognitive issues and permanent anterograde amnesia. That would make it really hard for me in terms of work and my goals in life. Again, I believe the risk of this is very small from what I've read, but it's the part that scares me the most. I'm also really afraid to lose acquired skills.

Thank you for the heads up on the different electrode placements, I will definitely be on the lookout for that. I will also ask them about the different waveforms they use and the strength of the current. I'm trying to figure out which of the hospitals in my area are the most reputable when it comes to ECT. I'm currently looking mostly at academic hospitals as it seems to me that they'll be the most up-to-date.

I do have a few questions if you don't mind answering them:
  • Do you think it's at all reasonable to hope to be able to get some work done in between treatments? I have no idea about the level of confusion to expect.
  • What sort of recovery period should I expect after the ECT ends? I.e., when should I expect to be able to go back to work?
For maintenance treatment I'm planning on lamotrigine, which will hopefully have comparatively few side effects.
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Default Sep 04, 2020 at 09:28 AM
  #20
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  • Do you think it's at all reasonable to hope to be able to get some work done in between treatments? I have no idea about the level of confusion to expect.
  • What sort of recovery period should I expect after the ECT ends? I.e., when should I expect to be able to go back to work?
During the intensive segment when you're going three times a week, I don't think work is a reasonable hope. For the treatments after that, it may be. Just keep in mind the potential for anterograde amnesia making things difficult.

I can't recall when I went back to work after starting ECT, but now I go to work the day after treatment. Part of that will depend on the nature of your work. Some jobs will lend themselves to a quick return, while others will not.

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