[Wild Coyote]

I am diagnosed with BPII and have what's considered "treatment-resistant" depression.

In a nutshell, I have been in treatment (both med trials and talk therapy) for the most of the past 30+ years. I either cannot tolerate the meds and/or I cannot get a good response, nor a response that lasts.

I am becoming increasingly sensitive to psych meds and have frequent dystonic reactions, which are very painful and require, at a minimum, an additional med(s) to help to alleviate some of the dystonia. I am having dystonic reactions to more meds than simply the 1st and 2nd generation APs.
For instance, I can no longer tolerate more than 100mg of Wellbutrin (bupropion), which used to be a "go to" med for me, without getting into severe dystonia. There are other examples, as well.

If I have not already, I do not want to develop a tardive dystonia and/or a tardive dyskinesia. (I am having daily dystonia as I write this. I am adjusting meds, hoping it goes away.)

My depression gets very severe. Often deadly.

My pdoc has urged me to consider ECT treatment.

(I'd first had this suggested to me over 30 years ago and I have always declined. However, things are changing now. I have exhausted meds and I am getting into dystonic reactions for meds which sometimes work temporarily.)

I have started to research this.

I thought I'd ask here if anyone has tried ECT and is willing to share their experience with me (either on this thread or privately in a PM)?

Have you tried ECT?
Is/was it helpful?
Did you complete a course of treatments and/or also stay on a maintenance regimen?
Do you regret having done ECT?
Would you recommend ECT to a loved one in need of care?
What else can you tell me about your experience with ECT?

I cannot thank you enough for sharing anything about your experience/concerns with ECT.


WC

[99fairies]

I have never had ECT, but if meds didn't work for me I would have it done in a heart beat.

[bizi]

I have never had the treatment before.
I feel very sorry and sad for you that the mes don't help you.
((((((HUGS))))))
bizi

[wildflowerchild25]

ECT saved me more than once. I had it the first time when i was 19. I had been in a perpetual mixed state for a year, had 7 hospital stays, and tried countless meds. I was terrified and wanted to say no but the hospital dr said basically it’s ect or state hospital. I knew I didn’t want to go to the state hospital. So I did ECT. It took a few sessions but I started to feel better after a a few weeks. I had 15 sessions total. And I was able to go med free for six years afterward.

But I do caution that for me at least, it’s not a complete cure. I’ve had to have it twice more. I still have to be on meds. I refuse to do maintenance treatments at this point but I might in the future if the need arises.

[Wild Coyote]

Originally Posted by wildflowerchild25

ECT saved me more than once. I had it the first time when i was 19. I had been in a perpetual mixed state for a year, had 7 hospital stays, and tried countless meds. I was terrified and wanted to say no but the hospital dr said basically it’s ect or state hospital. I knew I didn’t want to go to the state hospital. So I did ECT. It took a few sessions but I started to feel better after a a few weeks. I had 15 sessions total. And I was able to go med free for six years afterward.

But I do caution that for me at least, it’s not a complete cure. I’ve had to have it twice more. I still have to be on meds. I refuse to do maintenance treatments at this point but I might in the future if the need arises.

Thank you so very much for sharing!
I cannot tell you how much I appreciate your willingness to share!

I don't view it as a complete cure, either.
Right now, it has a higher success rate than TMS (transmagnetic stimulation); although I predict TMS, when further perfected, will one day be the "go to" treatment.

I am out of med choices. Either they: are intolerable, don't work or give me dystonia at low doses.

EVERY pdoc I have worked with over the past 30 years has encouraged ECT. I believe ECT has also changed a bit within those 30 years.

Thanks again!

WC

[Wild Coyote]

Originally Posted by bizi

I have never had the treatment before.
I feel very sorry and sad for you that the mes don't help you.
((((((HUGS))))))
bizi

Thank you, Bizi!
I am fond of you, too.

WC

[Wild Coyote]

Originally Posted by 99fairies

I have never had ECT, but if meds didn't work for me I would have it done in a heart beat.

Thank you!
I know you have a lot of compassion.

My current pdoc, whom I trust very much, told me he'd recommend ECT to a family member if it was indicated.


WC

[Daonnachd]

ECT saved my life.
I do not regret it and would certainly recommend it to a loved one if it were merited.

In 2015 I had an intensive series starting with 3 treatments per week for 4 weeks. After that it has continued on a tapering schedule of maintenance treatments until I have reached the frequency of once every 4 weeks, and a total of about 60, I think.

I must be honest, there was memory loss, especially in the beginning, but that has improved over time as the treatments have grown farther apart.

The whole procedure takes the better part of the day. Of course, that's no surprise in my case since I have to drive 2 hours each way when I have a treatment. It begins an hour before the treatment with the insertion of the IV which is used to rehydrate your body and administer anesthetic and muscle relaxant once you're on the gurney. (Aside: Rehydrating the body serves to reduce the gap the electricity has to travel from braincase to grey matter, thus improving the quality of the treatment.) Once on the gurney, they hook up monitors for heart rate, respiration, and EKG. See, the ECT is inducing a seizure in the brain. The muscle relaxant prevents it being a generalised seizure, though, with the exception of one foot which doesn't get the muscle relaxant due to a blood pressure cuff around the ankle. This allows the staff to watch the twitching of your foot to determine when the seizure has subsided. The seizure, itself, usually lasts a little over a minute.

After all this is done, you get wheeled into the recovery area where you slowly wake from the anesthesia. For me, this seems to take 60-90 minutes, but I'm not very sharp when I'm waking up, so I may have that wrong.

I'm happy to answer any questions you have in order to fill out the picture of the process. You can ask me here or send a PM.

My next ECT actually happens to be this Friday.

[Wild Coyote]

Again, I cannot thank you enough for sharing so openly.

I am learning a lot.


WC

[Daonnachd]

I didn't have my head straight. I should've included an EEG (electroencephalogram) among the monitors attached to you. This allows them to see the seizure as it is progressing in your brain. They can see not only the duration, but also the quality. Once I didn't have a very good seizure according to my doc, so she did a second round for me. I don't remember noticing any difference between that session and any others though.

[~Christina]

My Pdoc and I have talked about it at length last year. I had basically taken every psych med. only one I had not tried was Geodon and I tried that while in Florida. No way could I tolerate it.. and going off it was horrible.

If Latuda stops working or I have side effects that I can’t or won’t tolerate I would really consider ECT.

I saw many people over the years IP and they choose ECT , I could literally see a difference after a treatment or 2..

Only complaints that anyone mentioned was memory that day prior to treatment they could not recall and all complained of a pretty significant headache, which they were quickly treated, most would be going to dinner that day.

ECT of today is nothing like ECT even 5 years ago.

I hope you find some relief, you are a wonderful person and deserve to enjoy life more.

[Wild Coyote]

Originally Posted by ~Christina

My Pdoc and I have talked about it at length last year. I had basically taken every psych med. only one I had not tried was Geodon and I tried that while in Florida. No way could I tolerate it.. and going off it was horrible.

If Latuda stops working or I have side effects that I can’t or won’t tolerate I would really consider ECT.

I saw many people over the years IP and they choose ECT , I could literally see a difference after a treatment or 2..

Only complaints that anyone mentioned was memory that day prior to treatment they could not recall and all complained of a pretty significant headache, which they were quickly treated, most would be going to dinner that day.

ECT of today is nothing like ECT even 5 years ago.

I hope you find some relief, you are a wonderful person and deserve to enjoy life more.

Thank you for commenting! I value your observations and your opinions.
Yes, I believe ECT is very refined now. I believe TMS, once refined, will be the "go to" procedure, possibly before lots of drug trials. We need more money/funding for the TMS research/refinement. (At this point, I'd even consider the Deep Brain Stimulation" implant... and I hope that is also further developed.)

Thanks again!

WC

[annielovesbacon]

I have not had ECT, but I am a huge Carrie Fisher fan, and she talked about her ECT treatment in her memoirs "Wishful Drinking" and "Shockaholic."
In a nutshell, she described ECT as "blowing the cement out of her brain" and was a very effective treatment. The major downside she described was memory loss, and a smaller downside was having to take a full day off for treatment as it apparently takes a lot out of you.
I have heard from others as well that if you have run out of options re: therapy and psychiatry, it is a really recommended treatment. I of course cannot speak for that as I have not experienced it myself.
No matter what you decide, I hope you are well and are able to heal

[Zigy]

Originally Posted by vertigo

ECT saved my life.
I do not regret it and would certainly recommend it to a loved one if it were merited.

In 2015 I had an intensive series starting with 3 treatments per week for 4 weeks. After that it has continued on a tapering schedule of maintenance treatments until I have reached the frequency of once every 4 weeks, and a total of about 60, I think.

I must be honest, there was memory loss, especially in the beginning, but that has improved over time as the treatments have grown farther apart.

The whole procedure takes the better part of the day. Of course, that's no surprise in my case since I have to drive 2 hours each way when I have a treatment. It begins an hour before the treatment with the insertion of the IV which is used to rehydrate your body and administer anesthetic and muscle relaxant once you're on the gurney. (Aside: Rehydrating the body serves to reduce the gap the electricity has to travel from braincase to grey matter, thus improving the quality of the treatment.) Once on the gurney, they hook up monitors for heart rate, respiration, and EKG. See, the ECT is inducing a seizure in the brain. The muscle relaxant prevents it being a generalised seizure, though, with the exception of one foot which doesn't get the muscle relaxant due to a blood pressure cuff around the ankle. This allows the staff to watch the twitching of your foot to determine when the seizure has subsided. The seizure, itself, usually lasts a little over a minute.

After all this is done, you get wheeled into the recovery area where you slowly wake from the anesthesia. For me, this seems to take 60-90 minutes, but I'm not very sharp when I'm waking up, so I may have that wrong.

I'm happy to answer any questions you have in order to fill out the picture of the process. You can ask me here or send a PM.

My next ECT actually happens to be this Friday.

How deep is the anesthesia? Were you able to drive back or someone had to pick you up?

[Daonnachd]

Originally Posted by Zigy

How deep is the anesthesia? Were you able to drive back or someone had to pick you up?

You're completely under. You've got to have a driver to get you home. I often can't even stay awake for the drive home.

[Crook32]

I did unilateral ECT the first time. It worked for a few months and the side effects weren’t to bad. Minor memory loss and aches. The second time was bilateral. The memory loss with that was terrible. I needed gps to get everywhere. I stuck with it and did a few maintenance treatments. It took me over two years before I had most of my memory back. I had to do crosswords and memory games on my phone to help. I had even forgotten my kids birthdays. But symptoms and severity are different for everyone. It did help with the depression.

[Wild Coyote]

Originally Posted by annielovesbacon

I have not had ECT, but I am a huge Carrie Fisher fan, and she talked about her ECT treatment in her memoirs "Wishful Drinking" and "Shockaholic."
In a nutshell, she described ECT as "blowing the cement out of her brain" and was a very effective treatment. The major downside she described was memory loss, and a smaller downside was having to take a full day off for treatment as it apparently takes a lot out of you.
I have heard from others as well that if you have run out of options re: therapy and psychiatry, it is a really recommended treatment. I of course cannot speak for that as I have not experienced it myself.
No matter what you decide, I hope you are well and are able to heal

Thank you for your kind and thoughtful post!

WC

[Wild Coyote]

Originally Posted by Crook32

I did unilateral ECT the first time. It worked for a few months and the side effects weren’t to bad. Minor memory loss and aches. The second time was bilateral. The memory loss with that was terrible. I needed gps to get everywhere. I stuck with it and did a few maintenance treatments. It took me over two years before I had most of my memory back. I had to do crosswords and memory games on my phone to help. I had even forgotten my kids birthdays. But symptoms and severity are different for everyone. It did help with the depression.

Thanks so much for sharing!

Might I ask how much ECT helped the depression? Were you a new person? Were you able to get off meds? Did meds work better? Other?

I am very reticent to try the bilateral ECT for the reasons you have mentioned.

Thanks again!


WC

[Crook32]

Originally Posted by Wild Coyote

Thanks so much for sharing!


Might I ask how much ECT helped the depression? Were you a new person? Were you able to get off meds? Did meds work better? Other?


I am very reticent to try the bilateral ECT for the reasons you have mentioned.


Thanks again!




WC

It helped at first but the depression came back and I ended up in the hospital a few more times. Never got off meds. Now antidepressants don’t help at all they actually make things worse.

[Wild Coyote]

Originally Posted by Crook32

It helped at first but the depression came back and I ended up in the hospital a few more times. Never got off meds. Now antidepressants don’t help at all they actually make things worse.

Thanks for sharing more.
I am sorry the ECT wasn't more helpful to you.
I am in the same position with antidepressants -- they really mess me up.
now anything I could tolerate is giving me dystonia.

It seems like a major Catch-22.
Thanks again, so much!


WC

[Wild Coyote]

Originally Posted by vertigo

ECT saved my life.
I do not regret it and would certainly recommend it to a loved one if it were merited.

In 2015 I had an intensive series starting with 3 treatments per week for 4 weeks. After that it has continued on a tapering schedule of maintenance treatments until I have reached the frequency of once every 4 weeks, and a total of about 60, I think.

I must be honest, there was memory loss, especially in the beginning, but that has improved over time as the treatments have grown farther apart.

The whole procedure takes the better part of the day. Of course, that's no surprise in my case since I have to drive 2 hours each way when I have a treatment. It begins an hour before the treatment with the insertion of the IV which is used to rehydrate your body and administer anesthetic and muscle relaxant once you're on the gurney. (Aside: Rehydrating the body serves to reduce the gap the electricity has to travel from braincase to grey matter, thus improving the quality of the treatment.) Once on the gurney, they hook up monitors for heart rate, respiration, and EKG. See, the ECT is inducing a seizure in the brain. The muscle relaxant prevents it being a generalised seizure, though, with the exception of one foot which doesn't get the muscle relaxant due to a blood pressure cuff around the ankle. This allows the staff to watch the twitching of your foot to determine when the seizure has subsided. The seizure, itself, usually lasts a little over a minute.

After all this is done, you get wheeled into the recovery area where you slowly wake from the anesthesia. For me, this seems to take 60-90 minutes, but I'm not very sharp when I'm waking up, so I may have that wrong.

I'm happy to answer any questions you have in order to fill out the picture of the process. You can ask me here or send a PM.

My next ECT actually happens to be this Friday.

May I ask if ECT has gotten you off of meds? Or do you also take meds?
Did ECT help with lethargy? Suicidality?

I am , personally, open to taking meds if/when I can tolerate them, while also doing ECT. My depression is usually quite incapacitating and I deal with frequent suicidality.

Thanks again!

WC

[Daonnachd]

Originally Posted by Wild Coyote

May I ask if ECT has gotten you off of meds? Or do you also take meds?
Did ECT help with lethargy? Suicidality?

I'm still on meds.
The ECT helps combat lethargy and restore motivation. It seems to have had a cumulative effect. For a long time I had two good weeks after a treatment before slipping back into depression. With the maintenance over time I got to the point that I was going three weeks depression free. Now I can get nearly four weeks clear. My recent fight with suicidal thoughts came from withdrawals, so it's sort of the exception. For the most part, ECT has chased away thoughts of suicide. I would add, even when dealing with depression these days it's much less severe. The depression I fought before the ECT left me incapacitated, so it's a tremendous improvement.

[Wild Coyote]

Originally Posted by vertigo

I'm still on meds.
The ECT helps combat lethargy and restore motivation. It seems to have had a cumulative effect. For a long time I had two good weeks after a treatment before slipping back into depression. With the maintenance over time I got to the point that I was going three weeks depression free. Now I can get nearly four weeks clear. My recent fight with suicidal thoughts came from withdrawals, so it's sort of the exception. For the most part, ECT has chased away thoughts of suicide. I would add, even when dealing with depression these days it's much less severe. The depression I fought before the ECT left me incapacitated, so it's a tremendous improvement.

Wow! Thanks for answering these specific questions.
Yes, my depression has been a bear!
It's helpful to know all you've shared!

Thanks again!

WC

[tecomsin]

Hey WC,

I just noticed this thread so my post on the other one is out of date. What is your feeling? Are you going to try unilateral ECT? Sometimes it helps to make a list of the potential pluses and minuses and the relative odds.

[Wild Coyote]

I have read and appreciate your other posts very much.
You have been very helpful. Thank you.

I am doing some research and will be deciding with my pdoc.
I was also told I could opt for a consult with the M.D. in charge of the ECT program at this teaching hospital. I may do this.

I wonder how this works out for migraineurs? I happen to be one. Would like to get this guy's opinion on that and a few other matters-- to see if I am a good candidate or not?

Thanks again!

WC