ECT might not have been enough. Now I'm getting scared.

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I'm an aspie, diagnosed at age 43, and I'd never heard of it before. I've always felt something was very different about me, and that turned into self-loathing by the time I was a teenager. For decades I've thought it was depression, and that's what I'd always been diagnosed with and treated for. Turns out I'm an aspie with comorbid depression and anxiety disorder.

Finding out I'm an aspie was actually a wonderful experience, because I finally knew why treating my depression only seemed to scratch the surface. I finally knew the rest of the story. But my depression and anxiety remain very real, and knowing about Asperger's didn't make them go away.

In my life I've tried most antidepressants and most methods of talk- and group therapy, and recently I really started feeling hopeless. I decided it was finally time to try ECT (electro-convulsive therapy, or electroshock treatment). It's supposed to be super-effective - more effective than anything else (like 80%), yet it's only for patients who didn't respond to other treatments because it involves risk (associated with anesthesia) and cognitive side-effects (temporary memory loss, temporary cognitive slowing). I had a series of 6 treatments from Feb 16 through 29.

I feel like I went through a good period until maybe a week ago. Now I feel as depressed as I felt before the ECT. I feel really awful - powerless, pessimistic, frustrated, sad, non-creative, and anhedonic. (That last word means I get no joy out of things that used to bring me joy, or anything else for that matter.)

I'm starting to feel desperate. I'm starting to feel scared. I know I need to talk this over with my therapist tomorrow, and I know I might simply need a few more treatments, but I don't know how I can go back into the hospital now that I'm committed to several outside projects. (I'm a composer and I do theatrical sound design, and I'm working on 3 plays, one with a signed contract and partial payment in my bank already for the first composition - lacking creativity is really a serious problem). But even if I can make the additional treatments happen, they still might not do the trick. I might very well be looking at the rest of my life being as miserable as it's already been, with relief not possible.

And there's a mouse racing circles around my bedroom - loving the mess I live in.

I'd sure appreciate any supportive comments. I'll check back after therapy tomorrow & give you an update. I know it's hard for caring people to do, and I know you guys really do care a great deal and you understand these things so well, but for now, I'd really prefer if you don't try to solve my problems for me. I'm expressing some pretty awful feelings, and I just want to be heard. I hope that makes sense. If not, thank you anyway for just hearing me out.

One thing that will certainly NOT be helpful is posts describing how bad you think ECT is for a person. We can have that discussion another time if you like, but I've already made that decision (after very careful and thorough study) and done the procedure. I'm in a really scary position, and I don't have the heart to argue that point. I think I really just wanna hug or something...

Thanks all

*hugs*

I hope things improve for you.

I think I've realised over the years that I'll never be free of depression, but I have found life more livable at some times than others.

Give moderate exercise a try. It releases mood boosting endorphins. Reading funny stories, and watching funny shows does that, too, so give that at try, also. If you didn't already sound so busy, I would also suggest volunteering, as that can boost your mood by making you feel good about yourself. Since you have been so busy, it's possible you haven't been getting enough sleep. Being too tired can make depression worse, so get some rest.

The mouse in the house brings back memories. I have a spotty work history and health problems. A relative kicked me out because I was unable to get a job while living with him and pay rent. Also, his fiancee, who lived elsewhere, wanted me out. Other family members finally talked him into at least letting me live in a decrepit fixer upper he owned. I shared it with mice, and all kinds of bugs. Also, there was no toilet, the shower didn't work, and there was no tub, the kitchen had no sink, stove, oven. Only one room had carpet, the rest had plywood flooring, and the windows, and screens were broken. What fun! NOT! But it was a roof over my head until my parents were able to help me out with a place to live. They bought an old run down trailer for me to rent from them, with money I got from gov assistance, once I qualified. They couldn't afford better, and even run down, this place is really a lot nicer than the fixer upper was. It's also a lot better than the month I spent at a homeless shelter until I got to move into the fixer upper. The shelter was in excellent shape, but most of my roommies left a lot to be desired. Add to that, that Aspies don't do so good with strangers. Ugh! I do appreciate the housing they provided for that month, but one thing has always puzzled me about them. They have a one month limit for staying there, unless you are able to get a job during that month. In that case they will let you stay longer--until you have earned enough to rent an apartment. What I don't understand is where are people supposed to go when the month is over if they haven't landed a job in that time? I wasn't able to land a job in that time, so I would have been sleeping in my car after that if I hadn't been able to camp out at the fixer upper. That one month rule just doesn't make sense to me.

I hope your doc is able to help you out, but I do think you should get some rest and some moderate exercise, too. These are natural medical aids that are safe and free. Good luck with your treatment.

what works somewhat for me is to take everything strictly one day at a time. don't dwell on bothersome things of tomorrow or from yesterday, just think about what is in front of you NOW. only think about things that you can do something about, and ignore the rest. your health has to take priority over everything else. this means that your clients, if they have an ounce of humanity in them, will just have to understand that you need to take care of your issues. if they don't then it is THEIR bad karma, not yours. another thing that i resorted to, in the depths of my despair, is to force myself to go out and run myself ragged on the running track. i would run for miles and miles as fast as i could go, figuratively running away from what was bugging me, and when that was insufficient, then i'd jump in the pool and swim for miles. at the end of it each day, i was usually too tired to be feeling anything disturbing, and/or it might've been endorphins that were making me feel better. either way, it worked for me and it may help you as well. i'll tell ya one thing, it enabled me to sleep soundly all through the night 'til morn, with none of my usual insomnia and night worries. just a suggestion. too bad i can't reach through the phone lines and give you a hug.

hi dcs002
Really sorry your'e going through this. Here's a virtual hug through the strange medium of computers and internet.
I have had similar feelings and problems as you describe, for many years. I stay away from doctors though because I don't trust them. Not that I recommend that. I totally agree with questor and auntblabby as to exercise. I have used it very successfully, but have a very hard time sticking with the discipline required. Any amount helps. I find going out the door while it is dark and no one can see me helps very much because I don't like people's reactions - or what my mind perceives as "their" reactions. Being out, in the air, without worrying about people and get a sweat worked up for a few minutes at least - this gets good stuff started in the body. The physical pain alleviates the mental and emotional pain. It sounds too simple, but it can get one over the edge into a bit more light, if you know what I mean.
You're not alone in struggling with this.
Adding: I find that my mess often makes it worse for my state of mind. Over the course of a couple years I've done away with it, getting rid of it was painful, but in five or ten or fifteen minute work sessions at a time.

I am very sorry that you are going through this. I am going through a depressive episode myself. Right now I can't stand how everything's great in the world and its not affecting us in anyway shape or form. I am very sorry. I am terrified of everything. Are you sure that you don't want to see a psychiatrist or psychologist? By the way the economy is very, very strong and the Dow is going to hit 14,000! My dad invests in Intel stock since he works there and even that has gone UP. Google and Apple stock will surge to record highs. I have been depressed on and off since I was 12-13 along with psychotic episodes. This means world peace is near but sadly someone said otherwise. I take a lot of poisons (psych meds) and they don't help in time of stress along with making me fat and ugly. I break scales now. I used to be thin. Cows roam the streets out here in the year 1812. We are 200 years behind the cities. Real high tech, eh? I truly understand what its like to be hopeless. I am very hopeless myself because there is a very dark future ahead of me with no bright sun. Just storm clouds.

Thank you all for the cheerful words!

Here's the update I promised: My therapist wants me to see my psychiatrist again (appointment made), and she had a few ideas for things I could do with her, like making a schedule for every day, no matter what I put on it, even if it includes 3 hours of watching Rocky & Bullwinkle on Netflix and 20 minutes of lying in bed feeling sorry for myself, as long as it's scheduled. She had a few other ideas too, but my social worker came over today too for her regular visit, and she asked me if I'd considered EMDR (eye movement desensitization and re... something or other), which I'd thought about before, and I might try it now. I'm also going to start back in a day treatment program (part of my discharge program from the hospital on 3/1), but I couldn't even get an intake appointment until 3/28. Who knows when I'll be able to get into the program.

Today was (and still is) very difficult. I also had to attend a read-through of one of the three plays I'm working on this evening. My self-care has been atrocious, so I haven't showered in a week, and I didn't have any clean clothes to wear. Then, of course, the room we were in was warm and HUMID. After about an hour I became acutely aware that I smelled pretty bad. I was sitting between the director (great) and my assistant sound designer. As a sound designer, I've never had an assistant before. I just met her tonight. She's acting as my assistant because she wants to do sound design herself at this theater, and the guy in charge of us tech people and designers thought it would be a good step for her. She already knows a great deal about sound design, but I didn't know that until after I had carried on (and on) about a lot of the basic stuff. I asked her if she was familiar with Schubert and Chopin, because I'd heard some of their stuff at some point, and I thought the feel of the music that I'd heard would work well in our play (an Agatha Christie murder mystery). She told me she was a classically trained musician. Great. Now I'm intimidated. I'm intimidated by the only assistant I've ever had, and I'm sitting between her and the director, all sweaty and stinking. The good thing that came out of this is that she is VERY familiar with Schubert and Chopin, and she's agreed to go through her collection of their music and find examples of the kind of music I described to her. That will literally save me many hours, because honestly I'm not very familiar with their work, and I wouldn't know where to begin. (I'd just use part of my tiny budget to buy a bunch of their CDs and start listening.) That really is a good thing. I'm even thinking about asking her to play the music herself in the theater's recording studio while I record her. That way we can just use whatever little phrases we want from the music and piece them together in a way that suits the play. I hate that I felt so intimidated when her expertise is already so helpful, but being instantly intimidated by people is a life-long habit that is SO hard to break.

I've gotta say that I've been looking forward to reading your comments and writing this post. I was really stuck in my shame at the theater thing, being all dirty, sweaty, and smelly, but I knew I could talk about it here and you guys would understand where I'm coming from, or you would try very hard. I know self-care, especially hygiene, is a particular challenge for me. I really need to work on it. I don't know why I find it so hard to even think about that stuff. I know it's not ok for me to go around all stinky. That's clear. People don't like that. (I can relate, because I want to vomit whenever I smell someone's perfume or after-shave, or worst of all, air "freshener." My b.o. is, I'm sure, probably just as nasty to most people as Glade is to me.) But I don't understand why I have such a problem with cleaning myself and washing my clothes.

I am trying to be active. I joined a band because when I play rock music I jump around constantly and work up quite a sweat - even when we're just practicing. But we've got our show all worked out and don't practice anymore, and we took some time off from gigging. We've got one gig booked this Saturday, but that's the first one since early January, and we don't have anymore future gigs booked. We're only doing one refresher practice before Saturday's gig. (The solution to this is obvious, but it's hard to work up the nerve to audition for new bands when I'm in such a funk, and I don't perform very well when I'm like this either.) My social worker has also suggested that we meet once a week and go for a long walk. It's so hard to get up and do anything that's not immediately necessary when I'm depressed, though I know I'm in a serious condition right now, and I need to pull out all the stops.

FireBird, I hope you understand that fat is a very different thing from ugly. I've always found it heartbreaking when I hear people thinking of themselves as ugly because they're fat. (And btw, anyone who's obese knows it, and can't hide it, so I use the word fat because I don't think it's a bad word or something we should tip-toe around or try to hide from. It's like tall. I'm 6'5", and I can't hide that either. It's just a description without a judgement. Reclaim the word, reclaim the power. Rock the body you have!) As far as other people's impressions, there are a lot of fat-admirers of both sexes - way more than most people think. As for who you are inside, well, only you know who you are inside, but you really don't sound very ugly to me. And your post was full of good news! That actually perked me up a little. So much of what people talk about online is how the world is falling apart - when it's really not. I had no idea the Dow was that high! I almost never watch TV, and I don't track the markets because I'm not invested in them, but I understand that's a very high number for the Dow! Now if only we could do something about gas prices...

I guess that's enough writing for now. I think I write long posts like this because I like spending time here. Time spent here is time not spent worrying and obsessing about all that's wrong. But I think it's time for some sleep. All in all, although today was a serious challenge, I do feel much better going to bed than I did last night when I wrote that previous post.

About the hygiene thing - I also have problems with this, and don't understand why... You are not alone! It's not a sensory problem, it just ... doesn't happen.

Sometimes I would go up to 3 weeks without a shower or a bath. Which is ridiculous. My "solution" to this - and not washing my clothes - has been to schedule it. I guess like your therapist was saying about making a timetable for yourself. So now part of my getting up routine is to put on a load of laundry and I have scheduled evenings when I take a bath (3 a week).

I'm still struggling with brushing my teeth - there is a bit of a sensory issue with that which makes it more difficult. It is in my schedule but I do it sporadically and rather badly when I do because of the sensory stuff.

Not trying to solve your problems just saying you are not alone.

Thanks YellowBanana! A dentist once asked me why I don't brush my teeth very often (meaning usually once every few months), and the honest answer was that I didn't know. For some reason I told him I hated toothpaste. He suggested I brush my teeth without toothpaste because 80% of the benefit of tooth brushing comes from the brush and the water. The toothpaste only accounts for 20%. Not something the people at Colgate want widely known, but I've recently confirmed that with my current dentist. I don't know if the toothpaste is the major sensory problem you have with tooth brushing, but maybe others here do have that problem.

As for me, I'm gonna give the schedule thing another go. Showering, laundry, and tooth brushing will be on it. So will practicing (by myself) for Saturday's gig, dedicated time to work at home on each play, grocery shopping, karaoke, and Rocky & Bullwinkle! A regular lights-out time will also be on the schedule (haven't decided when yet), but wake-up will only be on it if I have to set my alarm to get up early for something. I don't sleep very well, and if my body needs to sleep until 2:00 PM, that's what I'm doing.

I know a lot of us have the hygiene problem. It's so embarrassing, and it feels so much worse because I can't explain it. I'm not afraid of water, I use unscented soap... I really dislike being wet, but that only feels like part of the reason. I'm glad the scheduling thing helped you, YellowBanana. I lived in an adult foster home a few years ago, and I scheduled two showers per week (which was not much, but it felt difficult for me, and it was meant to be a starting point), and the couple who ran the place were pretty good at helping me stay on that schedule. Now that I live on my own, my old schedule stuff is all gone. That happened after sitting in a production meeting at the theater while we were scheduling tech rehearsals for the play. I had Microsoft Outlook open. (I schedule EVERYTHING on Outlook - it's been a huge help.) I was talking to the stage manager about dates and times, showing her my schedule, and I was suddenly aware that every Wednesday and every Saturday in the month we were looking at had a reminder for me to take a shower. I tried to hide my shock, but I kept thinking what she must think of me that 1) I only took 2 showers a week, and 2) I needed to be reminded to take them! She acted like she didn't notice, and in fact maybe she didn't notice, or if she did, maybe she just didn't care. But it's like my problem with being easily intimidated by people - I'm also easily ashamed, and I usually assume the worst first. Anyway, after that meeting I erased all references to laundry, showers, and anything else related to self-care. I know there's a solution for that. I can put them back in Outlook, but I can use code. "Wardrobe meeting" could mean laundry, "Mtg with Moen" or "Ivory" could mean shower. There are solutions...

And today I'm feeling a lot closer to those solutions! Friday through Monday were very difficult for me, but today actually went quite well! I went to a rehearsal for a different play than the one I talked about yesterday, and I got a really good sense of direction from the playwright (who is working with us) and the director for where I need to go with the music. (I'm the composer for this play.) I'm so glad this depression isn't staying as deep as it's been lately!

Good night all!

I'm glad you told posted this - was worried/thinking about your previous post earlier today.
Also, thanks for that info. about tooth brushing - for me, the awful burny tasting toothpaste has always been a problem.

Thank you for thinking of me! My depression was frighteningly bad over the weekend & especially on Monday, but Tuesday was a genuinely good day, all day, and yesterday was kinda so-so. At least that tells me that the really bad days are not gonna happen every day, and I think I can handle that.

Here's some more info about tooth care that also might be helpful - maybe not. Use it or ignore it as you see fit:

I know there are also toothpastes that don't have that burn... I can't think of any now. I use Biotene Sensitive (whenever I get around to brushing) because several of my meds (psych meds and blood pressure meds too, I think) give me dry mouth, and that's what Biotene products are for. It has far less minty burn than others. My sister also turned me on to this vanilla-flavored toothpaste a few years ago that I don't remember having that burn either. She just gave me a tube because she tried it and she thought it was gross. I really liked the stuff!

I've also noticed that "tartar control" formula toothpastes have a super-mega-burn, in the unlikely event you haven't noticed that yourself yet.

One other tip: A former girlfriend used Act mouthwash. It's alcohol-free (the stuff she used anyway), and therefore it doesn't burn. I don't feel a burn at all, but that's not one of my hypersensitivities - your mileage may vary. (Scents and some noises are what really get me.) I found it really easy to use a cheap electric toothbrush with just water, and then rinse with Act mouthwash. Whether you rinse with mouthwash or water, rinsing thoroughly is more important if you don't use toothpaste, because brushing with water alone only loosens the live bacteria from your teeth. If you don't clear them out of your mouth with a good rinse, they just land back on your teeth again right away.

mntn13, you've really cheered me up at the start of my day! I just wanted you to know that. I write these long posts that I doubt anyone is reading, and then I found out that not only did someone read that post, but you also got something useful from it! That makes me smile!

Have a great day all, and I'll do my best to do the same!

thanks, and I'm glad, dcs002.
I really wish there was no such thing as depression.
Today was an up and down day for me. I got work done. Too much on my mind. But all in all, o.k. :)

That thing that smiles while convincing you that it is definitely not going to be better.

I'm 72, I survived 15 years of practicing psychiatry.

We had one doctor who did the ECT between 1971 and 1974.
He was normally a Rogerian therapist, which is about the furthest thing from ECT you might think.

But I don't think I would be doing him a disservice to say that he did it because no one else would (it doubles your malpractice insurance so you have to do a certain number just to break even, you need a certain sized "market").

I think he also did them for the reason that most of us go into medicine, he actually wanted to help people heal if possible. Look at the history of ECT and you will see it went through a long period of observation that convinced the doctor/scientist type to do as good a scientific experiment as possible.

You can draw your own conclusions I think from the evidence. It should be easy to find on the net, but if you have trouble perhaps I can help.

Anyway, I'm an as pie who is cyclothymic and have spent lots of time thinking it would be simpler and reasonable to not exist. Maybe that is too existential a way of saying it, but, like Kafka it is a matter of preference. There are many times when I prefer to not be existing. At 72 I'm getting closer to getting my preference.

I pretty much need to find a reason to get up every morning and have put myself in a place where there is usually something to be done, chores - you know, life on the farm sort of thing.

caveman2, thanks for your post. I'm also a doctor, but I took the research track instead of the professional track, and I became a research neuroscientist. I wanted to do science because it was so cool to understand the cutting edge of things, and to actually push that cutting edge out a little further. I'm not enough of a people-person to be a clinician. I would love to participate in healing patients, but I don't have the patience to deal with them.

I'm incredibly grateful for people like you who found clinical work rewarding because I have relied heavily on clinicians for many years now. I imagine how frustrating I'd be as a patient - I'm sedentary with terrible dietary habits, so my primary care physician is constantly fighting a losing battle with me and my diabetes, I rarely brush or floss, so my dentist (a truly wonderful man) cleans up my mess every year and doesn't really bother trying to get me to floss anymore. I have baffled every psychotherapist I've seen before I was diagnosed with Asperger's, but I hold most of them somewhat accountable for not knowing enough about the autism spectrum to recognize it in me. (They say insanity is trying the same thing and expecting different results, but CBT has such a stranglehold on the field of psychology these days it seems to be all anyone does, again and again. Go ahead and try to talk an aspie into seeing things differently when you don't know how we see things in the first place. See how that works.)

I know I'd be awful in clinical practice, and I'd be miserable. (I realized that after shadowing three physicians when I applied for medical school. I nearly made a massive career mistake.) Research was a better fit for me, but that didn't exactly work out either. I only made it 8 years in research and 5 in teaching (only 2 were full-time, non-adjunct). I haven't been able to work for 4 years now, and my last research and (adjunct) teaching employers didn't renew my contracts.

But no one can take away the education, and it's still serving me quite well, especially the research methodology and critical thinking. I read a lot of journal articles before deciding to go ahead with the ECT. One was a review of the molecular biology research related to ECT, and it concluded with a hypothesis of some of the molecular mechanisms that might account for the efficacy of ECT. I felt particularly confident after reading that one. It didn't add any new data to the literature, but it was a really good review that spoke in the language of my field, so it was an easy read. It also demonstrated clearly the evidence concerning neural damage resulting from modern methods of ECT (ultra-brief pulse and right unilateral ECT) is essentially non-existent. All that's out there are side effects (temporary cognitive slowing and memory problems) that some say indicates brain damage, but that's not a logical conclusion from the evidence. Brain damage is not the only possible explanation for those symptoms, and it's a rather unlikely one at that, given the temporary nature of most reported side effects and the lack of gliosis. (Those are my conclusions, not the author's.) Even the methods used by your colleague in the 1970s had an excellent safety record, the primary concern (as I'm sure you know) being the risks related to general anesthesia. (I wonder if malpractice insurance got even more expensive for those who provided ECT after the release of One Flew Over the Cuckoo's Nest?)

I wrote a thank-you email to the corresponding author because I know it's extremely rare that a basic scientist has a direct impact on a patient, and I wanted to let him know I appreciated his work.

I really think I'm incapable of writing comments of a reasonable length!! ! Good night all!

I'm not a doctor, but just based on what you seem to be experiencing there is a possibility Strattera might help. I took it for awhile and it increased my mood, and ability to cognitively relate/experience and logically solve problems, oh and boosted my memory. It works by increasing dopamine and adrenaline. It's a risk factor for people with Bipolar/Schizoaffective, which is what I have and since it caused some problems I had to quit, & my psychiatrist won't prescribe it to me.

It's all relative. Good luck!