[Edgar's Mom]

Hi there:

This is my first post here on this forum. I belong to another one as well, but almost everyone there lurks, and almost no one ever posts, so it has been of very limited value in terms of support.

I have some questions/concerns and I'm hoping some of the members here can give me some insight and/or share personal experiences with me.

Brief history:

Since childhood I've had problems with depression, wanting to die, extreme outbursts etc. Teen years were hell with lots of drug use, mood swings, self harm, suicide attempts etc. Early 20's devoted to alternative healing, but problems persisted. Mid 20's period of great turmoil. Problems were always attributed to the chaos that was my life (broken relationships, drug abuse etc) rather than any underlying issue I might have. I was however put on anti-depressants (Luvox and then Effexor) as I would have episodes where I couldn't answer the phone or leave the house for weeks.

Late 20's GP recognized that while I'd been treated only for depression, I was likely bipolar and started me on Valproic Acid. I was better than before meds but still had crippling depression, and still had episodes where I would have what I would describe as panicky rage. These happened once or twice a year and usually resulted in having to replace several hundreds of dollars of electronics and replace walls. During these episodes I would become violent with myself and my hubby would often have to restrain me.

Early 30's I got pancreatitis from meds. Was taken off one then the other. GI specialist told me not to take psych meds as I could die from them. I stayed off for months and had a depression that was so severe I was almost catatonic for months.

Got a pdoc who started me on Lamotrigine and Seroquel. I improved significantly but still had episodes with violent outbursts, still had hypomania and still had severe depression. As the depression wasn't nearly as severe as what I'd had in the past I thought the treatments were working.

I'll be 46 this summer and I've been on those meds since 2006. They've been increased and my last doc added lithium into the mix. I've had Olanzapine prescribed for the episodes of rage/panic that I get. I am still depressed to the point of not wanting to leave the house for several months of the year. Since the lithium I hardly ever get hypomanic and so am now depressed for most of the year.

My new pdoc increased my Lamotrigine a few months back, then added Wellbutrin. As neither has seemed to have any effect at all, he said he doesn't want to keep increasing my meds if they aren't working. He pointed out that I've been on meds all these years (19)and it hasn't worked. He suggested ECT.

The only thing I was worried about was memory loss (or any damage to cognitive function) and he told me that won't happen. I've read some posts here that allude to just that though... I didn't know that there were different types (unilateral and bilateral)

My questions are for people who have had ECT or for people who've observed loved ones through the process. Does it help? How do you feel after? Are you able to go off of some of your meds (my pdoc hopes for this)? Do you have memory loss? How likely is memory loss, how severe, and is it permanent? Overall, would you say it helped? I'm guessing it must because there seems to be quite the waiting list at the hospital and I will have to wait a couple of months for treatment.

Is there anything you wish you'd known before you went?

Lisa

[Nix]

I can't really give you much information on ECT except to say that I've had it, and there was no memory loss. They told me there might be a small amount of short term memory loss that would eventually clear up, but I don't recall having any problems. It might be something you want to discuss with your medical professionals, but I don't think long term or severe memory loss is really a risk.

You will get a wide variety of responses about people's experiences with ECT.

I have had ECT treatment twice. My husband has had it once. Two very good friends of mine have also had ECT. Each of our experiences was a bit different.

For me, ECT was life-saving. Both times I was in the hospital, extremely suicidal, not responding to meds, and facing long-term hospitalization. ECT turned things around for me pretty quickly actually, allowing me to go home to my family within a few days as opposed to the prospect of being sent away to a long-term facility for perhaps a few months. It was well worth it for me. I did experience the pretty typical short-term memory loss during the course of treatment. Much of what occurred just prior to and during treatment is pretty much not in my memory, but it probably wasn't pleasant to remember anyway so I don't particularly consider that a loss. I had no long-term memory loss. Never forgot my personal history, never lost skills for work, etc. No cognitive problems. My pdoc was very protective of my memory, honoring my request for unilateral treatments only, and he prescribed meds to help perhaps lessen any memory loss I might experience. I was able to return to work as scheduled and saw no problems returning to my usual work abilities. I still needed to take medications, although I would say the number of meds was reduced somewhat and they were more effective after ECT.

My husband had bilateral ECT. His memory loss was a bit more pronounced, particularly his level of disorientation during the time of treatments was greater. We had to watch him pretty carefully during treatment because he would not have been safe driving or going off on his own. But the treatments were effective. His depression, which also was extremely severe, did lift. His confusion and memory problems took a bit longer to recover from, but only by a few weeks. He also was soon able to return to work at full functioning and has had no long-term residual effects from the ECT.

One of my friends has ECT way back in the 1970's. Things were different then. She did have long-term memory loss and some cognitive problems, but she would have told you she had no regrets. ECT kept her alive and able to be with her family well into her 80's.

My other friend had ECT shortly after I did. We are in the same profession. She was also able to return to work at full functioning with no residual memory problems.

Some people do, however, experience more severe memory and cognitive problems. Unfortunately there is no way to predict who will and who won't, so you have to weigh the options and discuss the possible complications with the doctor who will do the treatments. You can make decisions ahead of time about type of treatment, etc. that can make a difference in the outcome.

Understand that ECT is only a treatment; it is not a cure. The effects are generally temporary, not long-term. Some people opt to have maintenance ECT treatments over a long period of time to maintain their mood level. Personally, I would not do that, but those are all things you need to learn about and discuss with the doctor who will actually be doing the treatments.

[wildflowerchild25]

I have to agree with the above poster. I've had ect twice and both times it was a life saver. One was after a near successful suicide attempt where I too was facing long term hospitalization (in a state hospital - hell on earth). The ect pulled me up and out. I was actually able to go off meds entirely for about six years before symptoms returned severely enough to affect my life functioning again. The second time I had ect was this past fall. Meds worked to keep me out of mania but were not touching the awful debilitating depression I was experiencing. Ect saved my life again. It took many sessions (21) to pull me out but it did and it made the meds I'm on much more effective. I was not able to go off meds this time and probably won't be able to for a long long time but at least they work now. I've been relatively stable for eight months. Had a couple of small episodes of depression and of course when my husband died I had a foray into severe depression but I bounced back and am doing quite well given my circumstances right now.

As for memory loss, I'm sorry to report that my memory was totally wiped out by both experiences. I had to have mostly bilateral treatments, and a LOT of them (36 total) to get me out of my depressions. So my memory took a big hit. I forgot how to get places I'd been going for years (including work!). I forgot the majority of my coworkers' and students' names. And unfortunately I've forgotten some important things. Likes and my husband took a vacation to Lancaster for our anniversary two years ago and I only know because I saw it in my timehop. I have no memory of the actual event. I have no memory except for one of taking my son to see the steam trains in PA. I don't remember my son's fourth birthday or anything that happened last fall at all, Though it was mostly bad so I guess that's not such a loss.

I do feel like my cognitive functioning is not what it used to be. I have much more trouble recalling things and unfortunately I've forgotten a lot of my teacher training so I'm basically relearning how to be a teacher.

However!!!!! I would do it all again in a heartbeat. It has saved my life twice. I guarantee I will have to do it again in the future. And I will. Even though it sucks, it has improved my quality of life so much that I'll take the memory loss and cognitive functioning issues over that horrific depression any day.

So basically you have to weigh your options and decide if it is worth a shot to relieve your misery or if you'd rather stay miserable and keep trying meds, since you may find a combo that works if you stick it out long enough.

Good luck! Pm me for more information if you like.

[Edgar's Mom]

I want to thank all of you for responding and for sharing your experiences and observations with me.

It would seem that even when there are negative side effects, these are far outweighed by the benefits of the treatment.

My depression has been debilitating for so long that I'm unable to have any quality of life and am very dependant on my poor hubby. It would be just awesome to be able to get up and function at all.

On my best days I'm able to drag myself around, but it's like my brain is full of mud, there's a weight on my chest and I'm never able to feel present or happy. I just endure. And on my worse days I sit and stare. Much of my time is spent between those two states though and I'm unable to make or keep any commitments.

Given all that, some memory loss is a pretty good bargain if I can have some relief. I find I'm excited about it and can't wait to get started. There is a long wait list though and I won't be able to start for a couple of months. My doc wants me to have about 9 tx at an interval of twice a week.

Lisa