I almost didn't start this thread...

Postby LastGypsies » Fri May 28, 2010 12:11 pm

In fact, I haven't posted at all since I started a thread here a while back about mental illness in children, but I do read these boards often....even if I can rarely come up with anything of worth to say. So it feels selfish of me to only make a post when I want to gather opinions on things that affect my life, or if I need advice. But I'm at a loss as to where else to talk about this.

As I mentioned in the earlier thread I started, I've long suffered from mental illness....schizoaffective disorder is my "official" diagnosis, but there were many others before it. What it basically comes down to in my everyday life, though, is that when I am under-treated, I am consumed by violent thoughts of destruction, self- and otherwise. People tend to try to pigeonhole it either as being depression or psychosis, but I am not sure it's either, because only I know what I'm feeling and thinking, and any attempt to describe it generally winds up being far from my own intentions. At any rate, giving it a label doesn't make it go away.

I've been on every medication for my symptoms in the book, and the only two that even begin to take away the pain are Lithium (which I've been on for 13 years now) and Zyprexa (which caused me to gain so much weight they had to cut it to a minimum). The only thing that helped me, that is cleared my mind to a point where I might begin to feel normal, was ECT-ElectroConvulsive Therapy, or shock therapy. (Before I get any farther, I should point out to those who don't know that this is NOT as it appeared in One Flew Over the Cuckoo's Nest-I was under general anesthesia and injected with muscle relaxants to keep the physical convulsions to a minimum-but it was still scary).

And I should also add that for all its scariness, ECT was a miracle to me, and I don't deny it. There's a reason doctors still use it in spite of its barbaric sound, and that reason is it works in cases where nothing else has. After six rounds of ECT four years ago, it was like I'd regained a sense that I'd been without for years and years. It caused some memory loss-some of it permanent, most of it not, and most of it revolved around the two weeks I was being treated. Family members who had seen me very, very sick for such a long time were amazed at how obvious it was. I was a different person, a person that I don't even think I had been when I was between symptoms in the years preceding the treatments. It may have been the person I might have been had I not been born with this disease, it was like it was my personality, but in a pure, unadulterated form.

Unfortunately, this does not last. After a month and a half I was back where I started. Fear of the process of ECT itself kept me from going back for another year, though. And then it was the same thing, for by then my symptoms had become so severe and so lasting that whatever could be said about my personality, my core self, could not be said about me in that state of mind. Without those symptoms, I was a different person, as I said. I wish I were exaggerating.

I muddled through until five months ago, when things got so desperate that I went in for ECT again because I felt that I was in such bad shape I had nothing to lose. Five rounds later, I was out of the hospital and felt great...until two weeks ago. My doctor wanted me to have ECT again, once a month for an indefinite period to keep me from crashing again, as I did two weeks ago. I refused against my family's urging because I was so frightened by the process and so crushed by the memory loss that I thought I could afford some slippage. When you're in a good state of mind, it is impossible to understand how desperate things get when you are not in a good state of mind. Thus my tunnel-visioned insight.

So the sum of all this is that I am now in some rudimentary stage of accepting that ECT is the only thing that has ever helped me in a way that might make it possible for me to get a job or continue my education, or anything other than being disabled. But the memory loss from my last round of treatments was severe, and I know that if I have more treatments it can only get worse. But if it's the only chance I have, it means I have to accept that and move on. I'm not at that phase yet. It means accepting that I have to have shock therapy regularly indefinitely. Unless I just continue to deny it.

So I'm left with the choice between shock therapy and being stuck with violent, suicidal and paranoid delusions all the time. It isn't much of a choice, in my opinion.

I do have a support message board for this disease I go to and I've posed this same question to them, but I wanted to get a second opinion, even though I completely acknowledge that this is my decision to make, and that no one else can make it for me. Maybe I'm just buying myself time until I can totally accept this, but I think it helps to talk to people about it.

I guess I just needed to rant. Sorry if I was too self-serving or whatever. Thanks for giving me a place to do so.
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Re: I almost didn't start this thread...

Postby draque » Fri May 28, 2010 2:10 pm

Having read that, I have to say that I'm kind of stunned. The concept of memory loss to any degree is something that I personally find terrifying, and to have to face it on that scale is something I can't imagine. That you're able to make yourself return to a treatment with side effects like those is a testament to your determination. Have you thought of working on a "memory book?" When I was very young, my great aunt underwent a series of ECT treatments to try to help her with seizures that she was having at the time*. The doctors warned her that she was likely to experience memory loss after each of the treatments, so she put together a memory book before each, with pictures and thoughts about particular memories that she wanted to make sure were preserved in some way. Although her memory loss was not very severe, and very little was permanent, the books helped her through the periods of waiting before each treatment, while she was worrying about what she might forget.



*Before anyone else mentions it, I've tried looking that up, and know that's typically the opposite of what's done. Maybe my family was lying about her condition since I was a kid?
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Re: I almost didn't start this thread...

Postby LastGypsies » Fri May 28, 2010 2:21 pm

That's a good idea-if I do it again, I will try that. It seems it would be hard to pick things, though. One thing I forgot to mention in my initial post is that it wasn't just a matter of erasing memories, I'm almost positive it also changed the way my brain stores new memories-it seems like it's harder to learn things now. And I have a shadowy memory of hearing of at least one other person who had this problem, too. But obviously it does not do that for everyone. And indeed, I would tell anyone presenting the kinds of problems I have who has not been successful with medication that ECT can be a lifesaver. Which....makes me feel cowardly and phony because of my own fears about the treatment.

As for it causing spontaneous seizures....I seem to remember that I heard different things from different doctors about that. But I could be wrong-my meetings with those doctors are in the periods that were particularly vulnerable in my memory for erasure from the treatments...at least I can say I did not suffer from that.
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Re: I almost didn't start this thread...

Postby Coda » Fri May 28, 2010 4:00 pm

It's pretty common, actually. Amnesia is rarely purely retrograde; "anterograde amnesia" is inability or difficulty in forming new memories after a traumatic event (like ECT).
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Re: I almost didn't start this thread...

Postby Plasman » Wed Jun 23, 2010 6:31 am

Hey LastGypsies, sorry this reply didn't come sooner - I hope you've made your peace with your decision, if you've already made it by now.

I can't relate directly to your experience, but I know that my mother has gone through something very similar in regards to memory loss. It was most likely brought about by her suddenly developing a form of epilepsy. For nearly a year, she started suffering blackouts and "fadeouts" which were sudden and alarming, and often afterwards she would be sort of foggy and distant, as in "lights are on but...". After such a spell, she would have little to no memory of the event.
Eventually she was correctly diagnosed and treated, but as a result of the trauma she lost approximately six months of her memory - in other words, there are gaps in her memory, the largest of which came from the time of her (as yet untreated) seizures. She also has memory-loss issues brought on by the medication she is taking for the epilepsy, which doesn't exactly help matters any. :?

But the important thing here is this: How does the quality of her life now compare to how her life would be if she weren't getting treatment? Although it is occasionally distressing or at least embarrassing for her to forget things she "ought" to know, how much worse would it be if she weren't able to think clearly at all? In her case, losing *some* of her memory is a fair trade off in order to enjoy a comfortable, lucid life.

I don't know if you feel this applies to you, but I think this is worth considering. I know that it's unsettling to think you could lose your memories, but if ECT does offer you some relief (and by the sounds of it, you really do need relief from your symptoms) it might be a fair exchange.
And I would definitely follow the advice offered above, regarding making a "memory diary"; even if you're not entirely sure of what to put into it right now, in the end, at least you'll have something to start you off.

Whatever you choose, or have chosen, I wish you well. :|
If this last post seems ridiculous, please disregard it. Thank you. ;)
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Re: I almost didn't start this thread...

Postby LastGypsies » Wed Jun 30, 2010 9:33 am

You're very right-and if I'm to be honest in thinking long-term, the choice will be easier to make in the future (again, if I'm going to be honest about what being un-treated means).

But luckily, this time I told my doctor what I've told you guys, and he said that he didn't think ECT was warranted this time. He decided to go back up on the Zyprexa (the drug that made me balloon up to 350+ pounds) this time and to watch what I eat and at least *try* to work out an exercise regimin, since the weight gain comes from increased appetite, and thus can at least be theoretically controlled. But, it was a similar choice as it was with the ECT-my weight gain was unpleasant, but never directly life-threatening. My psychiatric symptoms were. So the choice was easier than I thought.

I don't deny that someday I will probably have ECT again, but at least I know that in a moment of clarity like now I can make a logical choice (what good that will do me when I'm NOT in a moment of clarity is a whole other story). Maybe it just takes going to the edge, or at least close enough to see how bad it can get. Hopefully I can break that pattern someday.

Thanks, I appreciate your concern and advice!
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Re: I almost didn't start this thread...

Postby Jennifer Diane Reitz » Mon Jul 05, 2010 3:42 am

All medicine and treatment has unwanted side effects.

The bottom line with all treatment, with all of medicine, is to decide whether or not the side effects are offset by some gain. If so, if the gain is of greater value, then the treatment, the medicine, is worthwhile.

If not, then medicine becomes just more trouble and, ultimately, not worth it - bad.

All of life is pretty much trade-offs. Is this gain worth that price. Life in a nutshell.

That said, it is always worthwhile to try to look for additional possibilities, if you can (deep brain stimulation, a 'pacemaker' for the brain, for example? There may be other emerging technologies to look into.)

But, if something works, and it is worth the price, then... it is worth doing. Pragmatism is a very valid outlook.
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Re: I almost didn't start this thread...

Postby LastGypsies » Wed Jul 07, 2010 3:52 pm

Yes, it is definitely a question of whether the positives outweighed the negatives. When I wrote the original post, I was unsure, but a big problem with that is that the negatives that were really scaring me (which I don't think came across too clear in my post) were the ones dealing with the panic I would feel as they were putting me to sleep (the medicine going into my veins, the smothering feeling of the oxygen mask, etc), it was a panic that almost by itself would scare me away from the treatment....but in addition to this, the memory loss (and the fact that the benefits don't last forever) made it too much for me on this particular occasion. Now, this doesn't mean that it always is...indeed, the last time I had ECT things were so desperate I didn't care at all about the negatives. THAT, I finally decided, needs to be my criteria...only to do it if things are so bad that I'll ignore the negatives. Which sucks, because things getting that bad can be inevitable if I haven't found anything else that helps. And luckily, for now I think medication alone will suit things just fine. But I'd be foolish if I'd say that there were no benefits at all from ECT.
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Re: I almost didn't start this thread...

Postby Shivers » Sat Jul 24, 2010 4:05 pm

This is why I wish it lawfull to use Stem cells on people.
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Re: I almost didn't start this thread...

Postby Sinosaur » Mon Jul 26, 2010 11:08 am

Shivers wrote:This is why I wish it lawfull to use Stem cells on people.

What is the exact purpose for stem cells in this application? They're not a magical potion, they don't just solve every medical problem as is. So, you know, don't go spending your tax rebate on them unless your friend is buying coffee.
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Re: I almost didn't start this thread...

Postby Shivers » Tue Jul 27, 2010 11:51 pm

These stem cells can maybe help people in wheelchairs walk, man. I know its a long shot, but its worth trying.
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