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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 14 of 14. This is the beginning of the thread.
Posted by Bob on September 11, 1999, at 16:44:50
(I'll try to keep this short ... not easy for me!)
I have no idea how to recognize when the way I am feeling is "good enough".
Explanation: To sum what I've said elsewhere or not ... I've been depressed for all that I can remember of my life -- from 8 yrs old and for the next 29 or so. I finally started getting therapy about 4.5 years ago and on meds about 2.5 years ago. My GP started me on Zoloft and, after two months or so, I was literally flying! It seemed like everything in the world gained an extra dimension -- colors were brighter, smells more intense, objects more solid and with greater depth. My mind was working at a level I had never before experienced. Then, after six months, my GP suggested that I go off the zoloft, since it was working so well (yeah, I know, put that way and in retrospect, it seems like the STUPIDEST thing to have done!). A month later, I seriously crashed ... falling farther down than I had been before meds.
Since then, zoloft simply hasn't had the same effect for me. I've been on ten or so combinations of meds since. While all (except paxil! ack!) raised my baseline mood and helped keep me stable, I feel like I've been several different people during the last 2.5 years, depending on what parts of me were accentuated or inhibited by what I was on at the time.
I used to think that none of those people were the real me ... that maybe no such person exists. More lately, and somewhat confirmed by reading An Unquiet Mind, I have accepted these as different versions of me, like the way I described it in the last paragraph.
That first time on zoloft was perhaps the only time I've ever really felt happy. What terrifies me is that there are all sorts of indicators that I may have been going through a manic reaction to the zoloft. In being happy, for instance, I racked up more than $10g in credit card debt, a good portion of which I simply can't account for (that is, other than going through my statements with a fine toothed comb ... the sort of thing that provokes a panic attack for me! ack!).
About a month ago, I put together a little chart on all the meds I've taken and at what times. When I finished, I just sat there staring at my computer, stunned at it all. My girlfriend saw me and asked what was up, so I told her about the chart. Her response (which may seem reasonable from the point of view of someone who doesn't need meds to function) was that I should be thankful that I've found a combination that works as well as it does (zoloft, nortriptyline, klonopin). At the time, I was rating myself at about a 4-5 on a scale of 10. That comment dropped me to about a 2. I sw my pdoc a few days later, and he said almost the exact same thing!! The next few weeks, I was closer to being suicidal than any other time since the one time I tried and failed, when I was 20.
I've stepped back from the brink and I'd put myself back at a 4, but the issue still haunts me somewhat. I've never been "normal" -- I have no time prior to being depressed to have as a goal. So, how do I tell -- how does anyone tell -- when things are good enough?
Posted by dj on September 11, 1999, at 17:24:59
In reply to I need a reference point!, posted by Bob on September 11, 1999, at 16:44:50
> I've never been "normal" -- I have no time prior to being depressed to have as a goal. So, how do I tell -- how does anyone tell -- when things are good enough?
>>>
I relate to your story in many ways and are as puzzled as you. I have gone through feelings of being normal and in flow, usually without meds., though they have often been part of what helped get me there. The best I can answer is that when I am not obsessing, sitting in indecision or suffering from confusion and fear and am just doing or being that's as good as it gets for me, which unfortunately is not often enough. And when I have a sense that my present is alright and so were my past and future. I don't get there enough unfortunately...
Others???
Posted by Noa on September 11, 1999, at 18:37:41
In reply to Re: I need a reference point!, posted by dj on September 11, 1999, at 17:24:59
Wow, when I read your post, Bob, my heart nearly stopped. This is such an issue for me. I don't know if I have ever been "euthymic" but this is something I am only realizing/accepting now. I am starting to conceptualize my illness as "Double Depression" a term first used, I think, by Akiskal, who, by the way, is an author you will see a lot of if you do a search of abstracts on depression, bipolar, cyclothymia, or personality disorders. Dysthymic is probably my highest state. On top of the dysthymia, I have a cyclical major depression similar to the kind of depression in bipolar disorder. I think that over time, the cycles have gotten more rapid. I used to think of my depression as something I would get rid of, and that someday I would not need medication anymore. Now I am beginning to accept the illness as chronic. If I can control the major depression part of it and achieve a stable state of dysthymia, that would actually be a major accomplishment. My therapist thinks that my experience of the dysthymic moods would be a lot different if I weren't constantly in fear of falling back into another episode of major depression. That might free me up to be able to build some changes into my life, or as I put it, to begin to have a life at all. I was reading Jamison/Goodwin textbook the other day on manic depressive illness, and they say that a lot of people with bipolor spectrum disorders have the same types of self doubt you describe--how do I know what is the right way to feel? It is so complicated too, because like the zoloft reaction you initially had, your feeling good seemed to be tipping you into a hypomania, or at least your doctor thought so. This is a self doubt a lot of people have. YOu feel so relieved to be out of the depression, but anxious about becoming hypomanic, which contaminates any good feelings. I have also heard that starting and stopping a med and then starting it again makes people less responsive to it the next time. I don't know if this is true.
Can you say more about why you were so devasted by your girlfriend's and your pdoc's comments? I think I understand but I'm not sure.
Posted by JohnL on September 11, 1999, at 19:21:12
In reply to I need a reference point!, posted by Bob on September 11, 1999, at 16:44:50
Very cool topic, Bob! It sounds like a bit of mania was happening back then, huh? Sorry to hear about the debts. Mild hypomania isn't such a bad thing as long as someone takes away our ability to get our hands on money! :) Anyway, like you I have a 1 - 10 scale. 1 is trying to be dead. 2 is thinking about being dead. 3 and 4 are lousy dark days. I've spent too much time in the 2 to 4 range. I'm at a 5 or 6 which is functioning OK, able to fake my way through anything, but not wanting to do anything. No fun. No joy. My goal is a 10. A 10 to me is "I feel like playing my guitar". "I feel like throwing a ball with the kids." "I feel like listening to some music." "I can't wait to do XYZ tomorrow." Those are all 10s. That's my reference point, simply to enjoy normal everyday activities and hobbies. Nothing special. I just want to want to play my guitar. I just want to want. That's a 10.
Posted by Bob on September 11, 1999, at 19:33:59
In reply to Re: I need a reference point!, posted by Noa on September 11, 1999, at 18:37:41
dj -- I check on some of the same sorts of things. Am I afraid of facing the people at my office? Does the crush in the subway make me jittery? Can I keep my thoughts on one topic for more than half a minute? When I have a tough or unpleasant task to do, do I do it anyway or do I realize half an hour (or five hours) later that I'm in the rut of some compulsive act (like sitting in front of my computer playing Civilization! ;^)? If I've got good answers to all of those questions, then I can start looking at my baseline mood and seeing where I'm at. Fortunately, all of those complications are pretty much in control, but my mood is pretty low.
> Can you say more about why you were so devasted by your girlfriend's and your pdoc's comments? I think I understand but I'm not sure.
Hi Noa!
The reason these were so devastating is related to something you talked about. One of the many reasons I avoided therapy for so long was because I was convinced this was something I could fix--that one day I'd be done being depressed. I think one of the milestones in my therapy was the day about one year into it that I said to my therapist, outloud and with conviction, that I needed her help. I think more recently another milestone was admitting to myself that while my condition may have been exquisitely complicated by my environment, there is a genetic countermelody to this (maybe its the main melody) that I will have to cope with for the rest of my life. I don't think I can ever be healed ... only that I can try to manage it as best I can. That line of thought still makes me tremble. It can make the future terrifying. It makes my past look like a wasteland that could have been avoided if I or my parents had only gotten me the help I needed anytime in the last 30 years.I was trying to cope with all of that shit landing on me at once when my girlfriend and pdoc hit me with how lucky I was to find this combination. It was like, "you mean THIS is what I have to look forward to? if I'm LUCKY?"
I've heard the same about dropping a med then picking it back up. I was hypomanic (probably) on just 10mg/day of zoloft. When I crashed, I started seeing my pdoc ... he said with my history, I should have been kept on meds for at least a year before any consideration of going off. My doc and my therapist at the time I went off suggested it because they thought it had worked--that I had been through some acute episode and now they could focus on my panic disorder, the symptoms of which were far more pronounced at the time. By the time I got back on zoloft, even 150mg/day was doing little more than keeping me from sinking any deeper. I've been a very poor responder to SSRIs since.
Back on your birthday thread, Noa, I remember you saying something about *never* having an up cycle or something like that, in response to a comment from someone who is BP ... with the "gallows humor" we tend to have around here, sometimes the difference between comments from BPs vs. UPs can be amusing ;^) .... I used to know how you feel. When I read An Unquiet Mind, toward the end I got downright jealous of Jamison because there she was, saying how if she had the choice to do it all again she'd still want to be BP because of how wonderful those highs were. I had a taste of that, and I'm jealous as hell about it. Not only do I have rotten genes, I have the *wrong* rotten genes!! 8^P
I guess it gets back to one of my favorite lines from Boorman's Excaliber--when Arthur takes a drink from the Grail and is healed. he says something like, "I had never known how empty was my soul until it had been filled." It's a feeling I'm terrified of regaining and just as terrified that its gone forever.
Posted by Bob on September 11, 1999, at 19:57:51
In reply to Re: I need a reference point!, posted by Bob on September 11, 1999, at 19:33:59
> I've heard the same about dropping a med then picking it back up. I was hypomanic (probably) on just 10mg/day of zoloft.
10?! Oops! I was sure I typed "100".
Yeah, the 1-10 scale is a nice quick thing that others tend to grasp quite easily. Of course, never being satisfied with the easy, I had to go and make a complicated one. The 1-10 scale just doesn't give me enough information for keeping track of how my meds are working in my journal. For those of you who prefer to obsess about the details, here it is:
I give two ratings to the following mental attributes-- joy, sadness, mental acuity, social inhibition, mindfulness (as opposed to forgetfulness), assertiveness, motivation, libido. Yes, I think you can be sad and joyful at the same time ... I think they're somewhat independent and therefore deserve their own ratings. Of course, this is still a fairly new instrument, so any suggestions on other things to include are welcome.
The two ratings are for Presence and Importance. Each is a scale to 5. Presence is how stronglyt tuned in am I to this chunk of my mental life--(1) abnormally low, (2) low, (3) on target, (4) high, (5) abnormally high. Importance is how critical this chunk is--(1) not at all, to (5) my life revolves on it.
Here's an example, rated PG-13 for you kids out there, but I'm picking this one because its probably an issue a lot of us having difficulty explaining to our partners. Right now for libido, I'm at about a 2/1. It's practically non-existant for me, and due to a complex of pharmacological and psychological factors, I really don't care that its almost non-existent. Well, my girlfriend still can't accept it all ... but it does give me some extra ammunition for the inevitable arguments.
Cheers,
bob
Posted by Janice on September 12, 1999, at 1:03:11
In reply to Rating scales (where's that missing 0?!), posted by Bob on September 11, 1999, at 19:57:51
Hi Bob,
I have two methods of determining my baseline. One rating scale, and I'm not sure if it's for everyone. I've never had suicidal impulses, but at the end of each day I ask myself, 'would i have rather been dead today or alive?'. Simple, effective, but if you have suicidal feelings or impulses probrably not good.My other one. I check my memories and my ideas about my future. When I feel okay, my memories are okay (sure alot of shitty things happened in my past, but I can handle it, I can work on my self-esteem). Sometimes when I feel okay or good, I will even spontaneously have a decent childhood memory. My future looks good.
Depressed - if I think about my memories, I'm filled with anger and rage. I feel bitter and pissed off. Future - pretty bleak.
I've never felt normal in my life.
It was hopelessness you felt when your girlfriend made that comment. That's terrifying!
Posted by JohnL on September 12, 1999, at 8:04:06
In reply to Rating scales (where's that missing 0?!), posted by Bob on September 11, 1999, at 19:57:51
Bob, that's a very cool and creative scale you use. I guess I do the same except never thought about it in terms of numerical measurement. Very clever system you have. It would help to measure other things I am constantly aware of. For example, do I care to answer the phone? Do I care to visit a friend? Do I cringe when there's a knock on the door? Do I want to be left alone at work? Do I feel comfortable communicating at work today? Am I procrastinating about whatever? Do I care, or don't I? Those are hard things to measure, but your system makes it easy. Your system adds a whole new perspective that my 1 - 10 scale doesn't. Thanks for the tip.As I was pondering this thread last night, I realized that when you're "there", you'll know it. No reference point needed actually. You'll just know. When I reach a point where I actually "want", rather than just "wanting to want", I'll know I'm there. Untill then, your system Bob makes it easier to take a snapshot of where I actually am in the journey.
Posted by Bob on September 12, 1999, at 11:33:08
In reply to Re: Rating scales (where's that missing 0?!), posted by JohnL on September 12, 1999, at 8:04:06
Janice -- yeah, I guess you're right about that. I keep trying to kill off any sense of hope because, when it creeps back in, something always seems to happen to sabotage it. The disappointment and despair are too much to take. I really wish that I could stop hoping completely -- then, maybe, I could focus on actions and goals.
JohnL -- glad you like it =^). Me, with my training in psych, I have to resort to all sorts of individual difference constructs, but your list of lifetasks is probably better for a lot of people.
As for finding "the spot" through serendipity, I think that you're right -- that one way of knowing it is recognizing it's already where you're at after you've arrived. Noticing you're smiling, that you're looking at the sky instead of your feet, for no particular reason. I wish I could relax into accepting that. I was pushed so hard academically by peers, teachers, and advisors (of course, my parents had little to say ;^) that its hard not to look for a target to shoot at.
Looks like I need to reread (again) the Tao Te Ching and study up on the virtue of not-striving (which is an oxymoron in itself!)
Cheers,
Bob
Posted by Noa on September 12, 1999, at 21:01:15
In reply to Buddha smiles ..., posted by Bob on September 12, 1999, at 11:33:08
I relate to the idea of being wary of hope. After so many cycles, it is sometimes hard to enjoy the recovery and feeling better. I am afraid I will start to hope too much, and will be devastated by another depressive episode. Like being betrayed by oneself, or one's brain.
Posted by Riley on September 12, 1999, at 22:44:34
In reply to I need a reference point!, posted by Bob on September 11, 1999, at 16:44:50
This is a timely subject for me. Since the birth of my 4th child I have been doing the pharmaceutical merry-go-round. PPD turned into hormonal PMS and peri-menopausal depression that seems to be better described as dysthymia. So the last eight years have been my medical/pharmacy school training. Paxil/depakote put me at 100% better, and 70# heavier. Stupid me decided to try new combos; of course, nothing compared. So here I am now with SSRI's that don't work very well now. Latest treatment is 50mg Paxil, 200 topomax, and 25mg. Revia. PMS and dysthymia are my constant companions. I tried a new Dr. last week. His philosophy was, "If I can get a patient 80% better, then I have done my job." Obviously, he has never personally felt the destructive inner feelings of depression. So I am waiting to hear from the U of M to be scheduled for a second opinion on my current treatment. I am hoping for some new/novel ideas.
I am very sad and discouraged. I have had to die to the dream that I will ever feel the same as I did before my last child was born. Something must have permanently changed in my brain. I have done some therapy digging for any possible issue - all that seems to be there is just dealing with the illness. Comforting words welcome.
Posted by Bob on September 13, 1999, at 17:45:47
In reply to Is This Better??, posted by Riley on September 12, 1999, at 22:44:34
U of M? Michigan? If that's the M, then grrrrrrrrrrrrrrrrrr ...
I know that with the state of humanity's knowledge about brain disorders, psychopharmacology can seem more like psychopharmaroulette. But still, to have someone tell you "Hey! 80% function is dandy by me!" is so ignorant and/or insensitive. How'd you like to hear from a heart surgeon, "Well, we're gonna try to get you back up to 80% of your heart function." zheesh!
Sorry 'bout the outburst, but I've had to deal with too many doctors who see their patients as machines. Worse, as simple machines ... as if there's only one factor that needs to be considered. ACk!
Riley, trying something new after gaining seventy pounds is nowhere near stupid. Even 20-20 hindsight can't make a good argument for staying on that cocktail and just living with the extra baggage. For most women, that 70# is more than 50% of their original weight ... that sort of weight gain, particularly over long periods of time, can be far more deadly than depression, given the psychological and physiological implications of caring it. You can't blame yourself for wanting to try something different because doing so put you on the psychotropic not-so-merry-go-round. I could have stayed on my first med, too, and who knows how long it would have worked for me. But I didn't. All the same, given the situation I think I'd make the same decision again, so I never let that eat at me.
If it helps any, here's what I try to do to force the hope and the dreams that are so easily shattered away, when I can. Right here, right now, there are two things I think about: who I am and where I'm heading. Being and Becoming. Of the two, Becoming is the more important. Find what direction you want to head, look to where you are right now, then find out what you can do today, tomorrow, maybe thru next week to get you where you want to go.
... just like in "What About Bob?" (Bill Murray playing a psycho-Bob ... too much fun for this one here! ;^)
.... baby-steps ....
Posted by Noa on September 13, 1999, at 19:14:44
In reply to Re: Is This Better??, posted by Bob on September 13, 1999, at 17:45:47
I'm in a funk. Had a rough tx session. I dealt with it by first going to the store to obsess over organizers and calendars, etc. That worked for a while to distract me, but after a while I felt like I was going to lie down and cry in the store. Then I came home and stuffed my face to numb the feelings, which worked for a little while. Now I am feeling them.
Posted by Riley on September 13, 1999, at 19:42:18
In reply to Re: Is This Better??, posted by Bob on September 13, 1999, at 17:45:47
Yes, U of M as in Michigan. Your words of encouragement are so appreciated. This chronic condition is really defeating at times. I have always been so independant and very determined. I feel as though I am beginning to lose my fight to want to continue this battle for the right medication. For so long, I have searched, certain that there must be something that would work, but the optimistic person I used to be is fading away.
Somehow, it doesn't seem to be even part of the organic part of the depression, but rather part of the emotional part of dealing with constant dysthymia and keeping up with my family and my life.But anyway, thanks Bob,I really felt validated by your comment about the Dr.'s 80% is "good enough" and that my attempting to change meds was a good move. Best wishes to all. Riley
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