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FluffyDinosaur
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Default Sep 12, 2020 at 02:03 PM
  #41
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Originally Posted by BethRags View Post
Ohhh...I'll bet you're correct about covid. So frustrating! But I'm concerned about such a wait for you. Definitely worth telling your pdoc that you're sincerely afraid of the long wait.

Yeah, I will definitely tell him that. I feel like I can't take any more and I could snap at any second. Seriously don't know how I'm supposed to get through two more months of this.
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Default Sep 12, 2020 at 03:26 PM
  #42
Yes, it seems inhumane to request that you wait so long.

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Default Sep 12, 2020 at 03:38 PM
  #43
I don't remember how long it took before they got me in, but they did insist I get a full physical workup including electrocardiogram. So check with the ECT department to learn if that's required. It will allow you to avoid any extra delay. Good luck!

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Default Sep 13, 2020 at 01:13 AM
  #44
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Yes, it seems inhumane to request that you wait so long.

Yes, it certainly feels that way to me right now, even though I know the hospital staff are probably doing the best they can.
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Default Sep 13, 2020 at 01:15 AM
  #45
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I don't remember how long it took before they got me in, but they did insist I get a full physical workup including electrocardiogram. So check with the ECT department to learn if that's required. It will allow you to avoid any extra delay. Good luck!

Thank you, I will be sure to ask them that. I suspect that they're planning to do this on that first appointment I have, because they did say I would be seeing a bunch of different people that day. Hopefully it means treatment can be started not too long after that.
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Default Sep 13, 2020 at 12:16 PM
  #46
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Yes, it certainly feels that way to me right now, even though I know the hospital staff are probably doing the best they can.

Yes, but sometimes the squeaky wheel does get the grease.

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Default Sep 13, 2020 at 01:27 PM
  #47
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Yes, but sometimes the squeaky wheel does get the grease.

I really hope so! I hope my Pdoc is willing to do some squeaking on my behalf. I should know soon!
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Default Sep 14, 2020 at 12:24 PM
  #48
In preparation for the ECT I'm making a list of stuff I need to remember. So far I have:

  • Appointments (the important ones plus where to find more, i.e. my phone)
  • Locations (my old and new house, hospital address, etc.)
  • Things I have with me (so I don't forget to take them home)
  • What I was working on and where to find my work in progress
  • Passwords, e-mail addresses, etc.
Any other pointers on what to write down? One gap in my plan is how to remember that I have this note. I don't want to just leave it lying around with so much private information on it.
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Default Sep 14, 2020 at 04:33 PM
  #49
I would slip your notes into a book, leave the book somewhere sensible like bedside table, then write note to self on hand about the book.

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Default Sep 16, 2020 at 01:12 PM
  #50
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In preparation for the ECT I'm making a list of stuff I need to remember. So far I have:

One gap in my plan is how to remember that I have this note. I don't want to just leave it lying around with so much private information on it.
Let someone you know and trust in on where you’re keeping it. Maybe, give them a sealed copy of it.

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---"Address before the Wisconsin State Agricultural Society". Abraham Lincoln Online. Milwaukee, Wisconsin. September 30, 1859.
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Default Sep 17, 2020 at 08:08 AM
  #51
I forgot to reply, but thank you both for the suggestions! I think I can go for a combination of approaches, keeping a note as to where the list is and maybe giving a copy to my wife.
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Default Apr 01, 2021 at 08:19 AM
  #52
I finally started ECT treatment last week, after nearly nine months of campaigning to get treated. I've completed two treatments now and I'm scheduled for the third tomorrow. Although I'm still a long shot from being "cured," it's already becoming clear that the treatment is helping, more than any med has helped so far. Hopefully the improvements will continue and the memory loss will stay at a minimum. So far I haven't noticed anything important missing, but I understand those effects can be cumulative. I have to say that general anaesthesia twice a week is pretty rough, but so far it's worth it, although the anaesthesia hangover does make it kind of hard to accurately judge the effects on my energy and concentration levels. It's too bad I wasted so much time not getting treated at that first hospital. Oh how I would love to tell those arrogant doctors "I told you so!" But I'll settle for getting better instead.
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Default Apr 01, 2021 at 02:31 PM
  #53
Well, it's about time, isn't it?! Honestly, the tone of your post sounds lighter and healthier than any of the previous posts of yours that I've read. Do you know yet how many treatments you'll be having?

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Default Apr 02, 2021 at 12:11 AM
  #54
Yes, it definitely is! I don't know yet how many treatments I'll need, but I'm hopeful it won't be twenty (which is the upper bound they gave me) and that I won't need bilateral treatment. They say some people are better by treatment number six. Right now I'm already noticing improvements and I'm kind of able to sleep without benzos or Seroquel again, so who knows, maybe I'll be one of those people.

It's strange, but as I'm starting to improve a bit, I'm only now truly starting to notice how bad it was. I guess I had forgotten what normal was like and I didn't really believe that things could be better anymore. Sometimes I still don't, but now there are also times that I do believe that things can be better and I can actually feel it. I think maybe I was so afraid to exaggerate my depression that I was actually underestimating it.

I'm kind of on the fence about whether I should pursue a complaint at the first hospital, where they kept me in the dark for months and then declined to treat me when I got angry at them and the lack of information because they claimed that my anger showed that I had "personality issues" and that therefore "ECT wouldn't work." Their impression of me was completely wrong because they never took more than a few minutes to talk to me and didn't listen to the information provided by my own Pdoc. So when I didn't immediately fit into their stereotype of what a depressed person should look like, they just wrote me off. I think that's bad practice. I don't think it was unreasonable at all to get angry after I waited for months, was refused any information, had to submit to a whole bunch of "examinations" without knowing the reason, and never heard back from them when they promised to call.

On the one hand I think it would be bad for my recovery to waste more time and energy on those people, especially since they're likely too arrogant to listen, but on the other hand I now have proof that the ECT is working and that the depression is real and they did delay my treatment by nearly four months for no good reason. It's hard to just set all that anger aside. I'm not sure what's the best thing to do.

I also find that I'm still really grieving about all the time I've lost to depression these past few years, and all the damage it has caused. But grief is different and a lot more manageable than depression. I think that's something I can work with and honestly I'm looking forward to it, to begin moving on, hopefully.
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Default Apr 02, 2021 at 01:09 PM
  #55
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Yes, it definitely is! I don't know yet how many treatments I'll need, but I'm hopeful it won't be twenty (which is the upper bound they gave me) and that I won't need bilateral treatment. They say some people are better by treatment number six. Right now I'm already noticing improvements and I'm kind of able to sleep without benzos or Seroquel again, so who knows, maybe I'll be one of those people.

That is AMAZING! Good for you, for following your intuition about needing ECT.

It's strange, but as I'm starting to improve a bit, I'm only now truly starting to notice how bad it was. I guess I had forgotten what normal was like and I didn't really believe that things could be better anymore. Sometimes I still don't, but now there are also times that I do believe that things can be better and I can actually feel it. I think maybe I was so afraid to exaggerate my depression that I was actually underestimating it.

I understand so well, except with meds that have actually worked for me. In the midst of it you really wonder...Is this just 'me', am I exaggerating, and so on and on. But then there you are, feeling an immense improvement, saying I really was suffering from severe depression!

You have to feel so proud of yourself, FluffyD, for making it through AND for persisting in reaching out for and obtaining help when you were struggling so mightily.

I'm kind of on the fence about whether I should pursue a complaint at the first hospital, where they kept me in the dark for months and then declined to treat me when I got angry at them and the lack of information because they claimed that my anger showed that I had "personality issues" and that therefore "ECT wouldn't work." Their impression of me was completely wrong because they never took more than a few minutes to talk to me and didn't listen to the information provided by my own Pdoc. So when I didn't immediately fit into their stereotype of what a depressed person should look like, they just wrote me off. I think that's bad practice. I don't think it was unreasonable at all to get angry after I waited for months, was refused any information, had to submit to a whole bunch of "examinations" without knowing the reason, and never heard back from them when they promised to call.

On the one hand I think it would be bad for my recovery to waste more time and energy on those people, especially since they're likely too arrogant to listen, but on the other hand I now have proof that the ECT is working and that the depression is real and they did delay my treatment by nearly four months for no good reason. It's hard to just set all that anger aside. I'm not sure what's the best thing to do.

Filing a complaint is a strong consideration. Maybe give your treatments a bit of time, then decide? Just so you don't stress yourself so early on in the treatments. Just a thought. But my God, what they put you through...absolutely unethical. Inhumane.

I also find that I'm still really grieving about all the time I've lost to depression these past few years, and all the damage it has caused. But grief is different and a lot more manageable than depression. I think that's something I can work with and honestly I'm looking forward to it, to begin moving on, hopefully.

I have grief about huge pieces of my life given over to mental illness, too. I suppose we all do. But you're correct...grief can be managed, worked with. Whereas depression only needs immediate treatment.

The bottom line is that you've hung in there and now you know what you were facing, the courage it took!

I'm so very happy for you!
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Default Apr 03, 2021 at 03:21 AM
  #56
Thank you, and thanks for all your help throughout this whole ordeal! I won't say I'm quite there yet, but yes, I'm starting to feel very glad that I did persevere!
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Default Apr 03, 2021 at 11:52 AM
  #57
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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.
I work in medicine and our psychiatrists say that yes, ECT is more powerful than TMS. I have seen patients who got ECT 2-3x per week for 8-10 treatments, then cut back to once every other week and are maintained at once monthly, some every 6 weeks.
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Default Apr 04, 2021 at 10:18 AM
  #58
I had fifteen bilateral treatments and it seemed to help I gues

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Default Apr 05, 2021 at 04:17 AM
  #59
Thanks all, I've had only three unilateral treatments so far and I already feel better than I did on Seroquel, which was the most effective drug for me. This is the first time in over a year that I've had moments when I felt anything like normal, and I had forgotten what it was like. A few days after each ECT treatment, the effect starts to wear off a bit and the depressed feelings start to come back, no matter how much I try to prevent it. The contrast underscores how bad it was, and I think it also goes to show that I can't consciously control this depression or force myself to "snap out of it." Still, I feel better than I have in a long time, and if all goes well the effects from the ECT should linger a little longer each time, until hopefully I get well enough to make the transition to maintenance treatment and start living my life again.

So far I haven't noticed any important memories missing yet, the only thing is I feel a little fuzzy now and then (but no more so than I did due to the depression) and sometimes I get these deja vu feelings, but I'm not sure whether those are real or I'm just imagining them because I'm afraid to forget things.
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Default Apr 06, 2021 at 02:04 PM
  #60
I went through ECT on two separate occasions. I honestly wasn't aware of what I wasn't remembering until after it was all said and done. So for instance, we went to see a moving while I was going through ECT. I completely forgot about it, and it wasn't until reminded that I had seen the movie that it very vaguely came to my memory. It was mostly things like that, and I was largely oblivious to the memory issues during the actual treatment. So, take notes, and have someone who can help you navigate any memory things that do come up.

My husband had bilateral and had much bigger memory issues - even more of a confusion. We had to really watch him more during treatment. Mine was unilateral and the memory issues were basically what I described above. I probably could have worked on days I wasn't having treatment (but it was summer and I was off).

I never did maintenance treatments and never really needed them.
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