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Dr. Bob is Robert Hsiung, MD,
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Posted by Maxime on September 19, 2010, at 17:57:37
In reply to Re: WOW! » Maxime, posted by weatherfreak on September 16, 2010, at 20:43:44
Hey there, how has the treatment been going with your sister. Do you see any improvement yet? Is she coping well with the treatments? Update please! :)
Posted by weatherfreak on September 21, 2010, at 6:58:27
In reply to Re: WOW!, posted by Maxime on September 19, 2010, at 17:57:37
Well she's doing fine memory wise, but no improvement so far. If anything she's actually got a touch of akathisia but it could be nerves. She still has 3 more to go so it's still early days. It's amazing how little she is affected by it. She has it done at 8AM and is home by 11ish, you'd have no idea she just had ECT. If anything she's a little chattier than normal for a couple of hours.
She's actually going to ask to go in as an inpatient for the next week and a half.
Posted by Maxime on September 21, 2010, at 19:48:57
In reply to 3rd treatment » Maxime, posted by weatherfreak on September 21, 2010, at 6:58:27
It's early yet. She may not show improvement until the next or the one after that. That's a good idea for her to go inpatient.
I wish her luck!
Posted by Ruby on September 22, 2010, at 8:56:05
In reply to Re: 3rd treatment » weatherfreak, posted by Maxime on September 21, 2010, at 19:48:57
Hi there--
Its been exactly a year since I finished 6 ECT treatments...and yes it didn't seem to help until the 5th or 6th...and even then it seemed to continue help improve my mood for a few weeks after that and I've remained pretty stable since then. I didn't seem to have many memory problems while I was getting the treatments, but after it was all over I realized I had strange holes in my memory...and those holes continued to reveal themselves for about 4 months afterward. I think while I was getting the treatments I seemed pretty normal, though each treatment gave me a migraine (not fun).
Anyway, all this to say it worked for me--there wasn't a sudden change but a progressive one. I'm happy I made the very difficult decision to get the treatments. Also, FYI, one of the reasons I got the treatments is I know a woman who got treatments when she was in her 80s, after a lifetime of depression--and they really changed her life.
Good luck!
Posted by weatherfreak on September 22, 2010, at 19:23:07
In reply to Re: 3rd treatment, posted by Ruby on September 22, 2010, at 8:56:05
Thanks so much for that feedback Ruby, it's really appreciated. She's actually off having her 4th one right now. Her pdoc is away so her stand in wanted to discuss her options for going in as an inpatient today. I personally don't think she needs to anymore but it's her choice as it's almost over and as you said, she seems fine.
I hope she doesn't start to develop memory loss as time progresses, I'm grateful for your words and personal story. So far it sounds quite similar. I'll keep you all posted
Posted by Ruby on September 22, 2010, at 21:57:43
In reply to Re: 3rd treatment » Ruby, posted by weatherfreak on September 22, 2010, at 19:23:07
Also wanted to add that my sister came and took care of me for a couple weeks after I had the treatments (I was an inpatient). It was good to have her around to help me remember to take my meds, to encourage me to rest, and just generally make sure I was okay.
The memory stuff was weird and unexpected---like forgetting how to get to the grocery store--but I just needed a little prompting and then it would come back. A couple months after the treatment, I realized I remember very little of my time in the hospital--couldn't remember who visited me or how I got to the hospital or how I got home. Things like that. I'd mention it to a friend who knew the answers and then I'd start to remember.
Anyway...feel free to ask any questions. I do wish both you and your sister well; I do hope this will be the start of a better period for you. My sister also suffers from treatment-resistant depression, so we have that in common too.
Posted by weatherfreak on September 22, 2010, at 23:16:57
In reply to Re: 3rd treatment, posted by Ruby on September 22, 2010, at 21:57:43
Well, thanks again Ruby. It's terrible for both of us too, to suffer from treatment resistant depression. I couldn't take her today because I had a dental appt.
I hadn't noticed a difference in her until today, when I got home she looked terrible. Really pale and quite scattered. She had to pop off to see her GP afterwards for other stuff and grab some grocery's on her own. She wrote a list for 4 items, I've never ever seen her do that before but insisted she was OK to go alone. It's not far and she has her phone with her. She is very independent.
I think this treatment has started the change. I just hope this works for her. She had wanted to start cutting again this week. Let's hope this passes.
Posted by Phillipa on September 23, 2010, at 19:21:20
In reply to 4th treatment *small trigger* » Ruby, posted by weatherfreak on September 22, 2010, at 23:16:57
Well how is she today? Any better? Phillipa
Posted by weatherfreak on September 24, 2010, at 1:23:07
In reply to 4th treatment *small trigger* » Ruby, posted by weatherfreak on September 22, 2010, at 23:16:57
She's not doing so well today. I'm keeping an eye on her. I'll call the hospital if need be but she has bombed herself out on seroquel. She's going to spend the afternoon in bed and bomb herself out again tonight.
Posted by Ruby on September 24, 2010, at 12:00:20
In reply to Re: 4th treatment, posted by weatherfreak on September 24, 2010, at 1:23:07
Might be just fine that she is in bed--the treatments are hard on your body, really hard. I was in the hospital the whole time and each day of the treatment they released me from other activities and encouraged me to have a quiet day. Since I would have a migraine, that wasn't too hard. Do keep an eye on her, but hopefully this is part of the process and nothing else.
I didn't work for 3 months after the treatments and had a difficult time when I did go back (the little memory blips showed up most when i was at work and forget about simple things...computer password, a colleague's name...oy...it was weird where/when it showed up).
Posted by weatherfreak on September 27, 2010, at 22:12:35
In reply to Re: 4th treatment, posted by Ruby on September 24, 2010, at 12:00:20
Since there didn't seem to be any improvement to date, yesterday her pdoc raised her ECT level to normal, she was having a lower than usual dose.
I noticed a huge difference when I picked her up. She was white as a sheet and looked terrible. For the first time she was quite scattered too, she has her final one on Thursday and meets straight with her pdoc because he want her to have another 6 straight away. I don't want her too. I want her to wait at least 6 months minimum to see how she goes. Do you think that's a fair enough time period?
I think it's too soon for another 6 straight away, making it 12 treatments in 6 weeks. It's making her anxiety go through the roof.
Posted by ruby on September 28, 2010, at 7:34:27
In reply to 5th treatment, more electricity, posted by weatherfreak on September 27, 2010, at 22:12:35
I know how incredibly difficult this is for you and your sister; I keep you in my thoughts and prayers. And what a hard decision to make. I would hold off making a decision until you can talk it over with the doctor--can you go with your sister to this next session, as her caregiver? My sister came with me to my first session after all the treatments were done and it was a great help because she had a better bead on how I was doing. Ask all the questions you need to ask, listen carefully and then make the decision that seems right to you and your sister. What does she want to do?
Posted by weatherfreak on September 28, 2010, at 18:59:34
In reply to Re: 5th treatment, more electricity, posted by ruby on September 28, 2010, at 7:34:27
She hasn't decided yet, she has to give an answer on Thursday.
I really want her to wait, I'll ask her if I can go in with her on Thursday, but she's isn't improving. If anything she's actually gone backwards a bit.
Posted by emmanuel98 on September 28, 2010, at 19:01:49
In reply to Re: 5th treatment » ruby, posted by weatherfreak on September 28, 2010, at 18:59:34
When I had ECT, they said 12 sessions in 4 weeks was the norm to have it work. I stopped at 10 because of weird memory problems I was having.
Posted by Phillipa on September 28, 2010, at 19:05:40
In reply to Re: 5th treatment, posted by emmanuel98 on September 28, 2010, at 19:01:49
Seriously how could she go alone if she's doing so poorly. Not driving? Can she have anything for the anxiety? Phillipa
Posted by ruby on September 28, 2010, at 19:40:36
In reply to Re: 5th treatment » ruby, posted by weatherfreak on September 28, 2010, at 18:59:34
> She hasn't decided yet, she has to give an answer on Thursday.
>
> I really want her to wait, I'll ask her if I can go in with her on Thursday, but she's isn't improving. If anything she's actually gone backwards a bit.I wonder if she seems like she is going backwards because she got that "normal" level of ECT rather than the lower level. It is hard on the body and the brain and it does take time to recover. I believe I had the "normal" range of treatments--it was not fun and I did look like hell for awhile afterwards. I really do encourage you to go with your sister to her doctor appt--ask all your questions, express all your concerns about your sister, especially the possibility that she is going backwards. Maybe it isn't working for her, and you'd certainly want to know that now if at all possible rather than down the road.
Keeping you both in my thoughts and prayers....ruby
Posted by mogger on September 28, 2010, at 23:58:24
In reply to Re: WOW! » weatherfreak, posted by Maxime on September 14, 2010, at 19:02:12
My pdoc who is one of the heads at UCLA said that TMS (transcranial magnetic) has been proven to be very effective for treatment resistant depression. I highly respect him. Just a thought.
Posted by weatherfreak on September 29, 2010, at 7:15:13
In reply to Re: 5th treatment, posted by ruby on September 28, 2010, at 19:40:36
Thanks for all your support. She has seroquel and seroquel XR for anxiety and neither is really working at all. She's also on 300mg of Pristiq which was keeping her anxiety at bay more than the seroquel.
Ruby she started going backwards before they turn up the power on Monday because of that. It hasn't helped in my opinion. I have noticed that she has been way more withdrawn since Monday and taking more seroquel to knock herself out which her pdoc said was fine but it's not working. Pristiq has been quite good for her but they need to change her seroquel. She said it's fine for me to come in tomorrow, but her pdoc might be gone before I can go into recovery. I really want to stress to him:-
1. Please give her something else for her terrible anxiety and
2. Please let her recover from this round first before she goes any further.
She has become so anxious that she is literally pacing, it's like shocking akathisia to the point where she keeps shaking her hands like she is trying to get sand off them. Her pdoc refuses to give her benzo's as she had a drug problem years ago but that was with speed. She has been prescribed benzo's in the past and never abused them. I just can't understand why her pdoc won't give her anything but seroquel. Even if it's just enough valium or clonazepam for 1 week, or a stronger anti psychotic for a week to calm her down.
I was totally blown away at how little her first 3 treatments effected her memory and personality. Now I feel like it's not helping her at all and she is sliding into a deep black hole of worse depression, racing intrusive thoughts and severe anxiety. I can't see why a break from it wouldn't hurt. She was only meant to have 6 treatments anyway. I really want to speak to her pdoc. Why continue at this point when it's gone pear shaped in my eyes.
Posted by ruby on September 29, 2010, at 8:04:56
In reply to Re: 5th treatment » ruby, posted by weatherfreak on September 29, 2010, at 7:15:13
I'm so very sorry your sister is so bad off right now. It just plain old stinks--that is what my sister and I say to each other when it gets bad--it just stinks. I really do hope you get to see her pdoc tomorrow and that you are able to get questions answered and perhaps a change in meds. The weeks after my treatment are all a blur to me; it was really good my sister was there for me. It is so good you are there for your sister, even as hard as it is.
About a month after I finished my treatments, my mom died and I HAD to "come to"--for many reasons, I was the one to head up funeral arrangements, take care of my dad who is 84. My sister was so worn out from taking care of me (plus her husband chose to tell her at that time that he was divorcing her...gggrrrrrrr). Anyway, all of this to say, recovery does take awhile--for me at least a month and even more. It will take a while for your sister to recover--and yes, she'll need good, supportive meds during that time.
Continuing to think and pray for you both...
Posted by twinleaf on September 29, 2010, at 9:28:19
In reply to Re: WOW!, posted by mogger on September 28, 2010, at 23:58:24
Very encouraging to hear. That was my experience with it.
Posted by weatherfreak on September 29, 2010, at 17:14:51
In reply to Re: WOW! » mogger, posted by twinleaf on September 29, 2010, at 9:28:19
Thanks guys but I'm not sure if it's widely practiced here yet. I'll have to look into it as an alternative, or get my sister to.
> Very encouraging to hear. That was my experience with it.
Posted by weatherfreak on September 30, 2010, at 18:24:45
In reply to Re: WOW! » twinleaf, posted by weatherfreak on September 29, 2010, at 17:14:51
Well now, something has changed. Her 6th treatment has done something for the better. Her mood is really good, but it's finally really effecting her memory now. Don't get me wrong, she has a memory like an elephant and her long term memory is still amazing but her short term memory is starting to go. Just little things like asking the same question twice but that's about it, for now.
She's seeing her pdoc today as he want to give her 2 more treatments next week. I'm allowed to go in but all I want to stress is that she needs better meds to control her anxiety until this passes. I just don't see how anyone can let someone suffer like that until I found out she hasn't told him about it.
Thank you for all you kind words and support, I'll keep you updated.
Posted by ruby on September 30, 2010, at 21:56:32
In reply to No 6, posted by weatherfreak on September 30, 2010, at 18:24:45
> Well now, something has changed. Her 6th treatment has done something for the better. Her mood is really good, but it's finally really effecting her memory now...
>-->So glad to get this news--yes! The memory will improve with time, bit by bit. So glad her mood has improved, so glad you'll get to see her pdoc too. Such a good sister you are, wonderful!
Posted by weatherfreak on October 1, 2010, at 0:35:49
In reply to Re: No 6 » weatherfreak, posted by ruby on September 30, 2010, at 21:56:32
LOL, I'm her brother :)
I didn't have to go with her today, she has decided to tell her pdoc about her terrible anxiety and that she doesn't want to have anymore for now as she is finally feeling better mood wise. She wants to see how she feels now before going any further. We had a really good chat and she came to these decisions herself. I'm so happy for her especially that she has chosen to wait.> > Well now, something has changed. Her 6th treatment has done something for the better. Her mood is really good, but it's finally really effecting her memory now...
> >
>
> -->So glad to get this news--yes! The memory will improve with time, bit by bit. So glad her mood has improved, so glad you'll get to see her pdoc too. Such a good sister you are, wonderful!
Posted by weatherfreak on October 1, 2010, at 4:15:58
In reply to Re: No 6 » ruby, posted by weatherfreak on October 1, 2010, at 0:35:49
I didn't go with her as she was super confident about her pdoc appt, in regards to getting a suitable anxiety med and refusing more treatments. He totally railroaded her in 2 mins, gave her nothing for her now chronic anxiety and is making her have 2 more treatments next week. Then kicked her out. I'm so angry I didn't end up going with her. He has been so amazingly good to her over the last 3 years and today he did this??????
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