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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 18 of 18. This is the beginning of the thread.
Posted by Adam on November 16, 2000, at 20:51:57
Hi, folks,
It's been quite a while since I posted here, so some of you may not know me.
A little less than two years ago, after a 10+ year battle with depression, it got so bad I wound up hospitalized, and received electroconvulsive therapy during my stay. This was rock bottom for me, and I can hardly describe how truly awful it was. I had, prior to that, tried about every class of antidepressant available, some in combination, except an MAOI. Roughly six months after that I enrolled in a research study (one of many of its kind) at McLean Hospital, near Boston, MA, where they were testing the efficacy of the Selegiline Transdermal System (STS) for major depressive disorder.
After completing the double-blind, placebo-controlled portion of the study, I was then allowed to use the active STS, at a dose of 20mg/day, for six months. I responded almost immediately, and, in quantitative terms, experienced a change in Hamilton Depression Scale score of about twenty points over the course of a month. In qualitative terms, it was indescribable. After the study ended, I switched to oral selegiline, and have maintained the therapeutic benefit on a relatively low dose (15mg b.i.d.).
I am quite literally moved to tears at times by things I had written in journals or scraps of poetry before I was sucessfully treated, not so much because these musings were in any way brilliant, but because they were so thoroughly bleak, hopeless, and tortured. I'm not sure I could have lasted another year, much less another ten. I'm fairly certain I would have taken my own life, despite my own personal objections to such a choice, eventually. A halfhearted and aborted attempt had already opened the door to that corridor, so to speak, and it began to seem like a sensible lesser of two evils.
I can’t say, in retrospect, whether or not I was deserving of such a change, if it was my time to experience something new, if my mind tricked me into thinking I was healed, if my biochemistry was out of whack before...I simply don't know, and probably never will.
What I do know, quite certainly, whatever I believe to be the mechanism that helped me, is that I am greatly relieved of depression, and it appears that I might stay that way. I knock heavily on whatever chunk of wood I can find whenever I think such a thing, that this could be (dare I say it?) permanent. I do certainly hope so. I nearly catch myself praying so, despite a powerfully secular humanist mindset, largely because the past is so terrifying, the present almost ineffably better, and the change like a bolt from the blue.
All I can say is that it can happen, and I do so very much hope it may happen to you someday if you are still suffering from depression. I beleive the odds may be in your favor if you keep working at it. It was very hard for me. I wound up at so many dead ends, and in such dire trouble at times. I hope you believe me when I say all of this is true, what happened to me, and what could happen to you. It might not be so quick or stark, but it does happen to people. They do get better, and it can last. My girlfriend is a bit like me in that regard, and we both share a certain amazement at the contrast between past and present. We both are coming to terms with the idea that we may very well have to stay medicated for the rest of our lives to maintain this quality of life, and that we are essentially the victims of a chronic illness that will never be completely cured, just controlled. So we have to be careful.
I'm far from perfect. I'm still a bit impulsive. I'm not so organized as I'd like to be. I'm a bit obsessive (in the clinical sense), and that can be a challenge. The drug can still make me a bit jittery at times, it causes insomnia, and I have to watch my diet and what medications I take beause of the potential for life-threatening interactions. I sometimes get a bit hypomanic, which is actually kind of fun, but I’m given to "odd" behavior at such times, mostly in the form of late-night writing sprees like this one, and a rather uncharacteristic effusiveness. I usually keep it under control, though :-).
Since I'm not sure if "the patch" as the STS was often referred to, will be approved, it may mean these problems/quirks will be with me for the duration. They are, fortunately, relatively inoccuous, and a more-than-equitable trade for relief.
I hope you hang in there, and that some day you can experience some joy. Again, I really believe that you can, as small a consolation as that seems right now. I can't fool you, or talk down to you. You and I both know how badly it hurts, and how impossible any real improvement seems. Nonetheless, I do not think I was merely lucky. A brief reflection on my life does not bring to mind words like "lucky". Just better now than before, after a very long fight. Keep fighting. All the best to all of you.
Adam
Posted by SLS on November 16, 2000, at 22:01:21
In reply to Just thought I'd check in..., posted by Adam on November 16, 2000, at 20:51:57
Thanks.
Stay well.
Sincerely,
Scott
Posted by Bradley on November 16, 2000, at 22:07:13
In reply to Just thought I'd check in..., posted by Adam on November 16, 2000, at 20:51:57
Your words really touched me. I'm a long term depression sufferer(maybe 40 yrs)and I many times lose sight of the light at the end of the tunnel.Your story encourages me. Wish you continued success and all the best.
> Hi, folks,
>
> It's been quite a while since I posted here, so some of you may not know me.
>
> A little less than two years ago, after a 10+ year battle with depression, it got so bad I wound up hospitalized, and received electroconvulsive therapy during my stay. This was rock bottom for me, and I can hardly describe how truly awful it was. I had, prior to that, tried about every class of antidepressant available, some in combination, except an MAOI. Roughly six months after that I enrolled in a research study (one of many of its kind) at McLean Hospital, near Boston, MA, where they were testing the efficacy of the Selegiline Transdermal System (STS) for major depressive disorder.
>
> After completing the double-blind, placebo-controlled portion of the study, I was then allowed to use the active STS, at a dose of 20mg/day, for six months. I responded almost immediately, and, in quantitative terms, experienced a change in Hamilton Depression Scale score of about twenty points over the course of a month. In qualitative terms, it was indescribable. After the study ended, I switched to oral selegiline, and have maintained the therapeutic benefit on a relatively low dose (15mg b.i.d.).
>
> I am quite literally moved to tears at times by things I had written in journals or scraps of poetry before I was sucessfully treated, not so much because these musings were in any way brilliant, but because they were so thoroughly bleak, hopeless, and tortured. I'm not sure I could have lasted another year, much less another ten. I'm fairly certain I would have taken my own life, despite my own personal objections to such a choice, eventually. A halfhearted and aborted attempt had already opened the door to that corridor, so to speak, and it began to seem like a sensible lesser of two evils.
>
> I can’t say, in retrospect, whether or not I was deserving of such a change, if it was my time to experience something new, if my mind tricked me into thinking I was healed, if my biochemistry was out of whack before...I simply don't know, and probably never will.
>
> What I do know, quite certainly, whatever I believe to be the mechanism that helped me, is that I am greatly relieved of depression, and it appears that I might stay that way. I knock heavily on whatever chunk of wood I can find whenever I think such a thing, that this could be (dare I say it?) permanent. I do certainly hope so. I nearly catch myself praying so, despite a powerfully secular humanist mindset, largely because the past is so terrifying, the present almost ineffably better, and the change like a bolt from the blue.
>
> All I can say is that it can happen, and I do so very much hope it may happen to you someday if you are still suffering from depression. I beleive the odds may be in your favor if you keep working at it. It was very hard for me. I wound up at so many dead ends, and in such dire trouble at times. I hope you believe me when I say all of this is true, what happened to me, and what could happen to you. It might not be so quick or stark, but it does happen to people. They do get better, and it can last. My girlfriend is a bit like me in that regard, and we both share a certain amazement at the contrast between past and present. We both are coming to terms with the idea that we may very well have to stay medicated for the rest of our lives to maintain this quality of life, and that we are essentially the victims of a chronic illness that will never be completely cured, just controlled. So we have to be careful.
>
> I'm far from perfect. I'm still a bit impulsive. I'm not so organized as I'd like to be. I'm a bit obsessive (in the clinical sense), and that can be a challenge. The drug can still make me a bit jittery at times, it causes insomnia, and I have to watch my diet and what medications I take beause of the potential for life-threatening interactions. I sometimes get a bit hypomanic, which is actually kind of fun, but I’m given to "odd" behavior at such times, mostly in the form of late-night writing sprees like this one, and a rather uncharacteristic effusiveness. I usually keep it under control, though :-).
>
> Since I'm not sure if "the patch" as the STS was often referred to, will be approved, it may mean these problems/quirks will be with me for the duration. They are, fortunately, relatively inoccuous, and a more-than-equitable trade for relief.
>
> I hope you hang in there, and that some day you can experience some joy. Again, I really believe that you can, as small a consolation as that seems right now. I can't fool you, or talk down to you. You and I both know how badly it hurts, and how impossible any real improvement seems. Nonetheless, I do not think I was merely lucky. A brief reflection on my life does not bring to mind words like "lucky". Just better now than before, after a very long fight. Keep fighting. All the best to all of you.
>
> Adam
Posted by JohnL on November 17, 2000, at 3:59:50
In reply to Just thought I'd check in..., posted by Adam on November 16, 2000, at 20:51:57
Hi Adam!
Yes indeed, very nice to hear from you. It has been a long time. I always wondered how the Selegiline was going since switching to the oral version.It's kind of weird when a babble regular just disappears. It means things must be either real bad or real good. I'm relieved things are good. Even a touch of hypomania at times? That's pretty cool. I experienced a touch of the same with Amisulpride+Adrafinil and loved it.
Back when you were in the study I located an overseas compounding pharmacy that said they would custom make a Selegiline patch prescription for me if I had a doctor's prescription. I don't remember the price quote, but it was very very expensive. Since then I deleted my bookmark and have no idea what the name of the pharmacy was or even how to go about finding it again. I think it was some place I just stumbled onto while searching the web. But even if I could remember, it was too expensive to consider.
So glad you're well! Welcome back!
John
Posted by Noa on November 17, 2000, at 6:55:01
In reply to Just thought I'd check in..., posted by Adam on November 16, 2000, at 20:51:57
Adam, thanks for dropping by and leaving us with hopeful words.
Your name came up recently when someone asked about the selegeline patch, and some of us were wondering how you were doing on the oral selegeline. Good to hear you are doing well.
I hope the patch is approved soon.
Take care.
Posted by dove on November 17, 2000, at 14:33:47
In reply to Re: Just thought I'd check in..., posted by Noa on November 17, 2000, at 6:55:01
Dear Adam,
I cannot express my gratitude for your update, it moved me to tears. I think of you often, your messages always touched me deeply. Your stories, experiences, music preferences, and even your struggles made me laugh, write, agonize, and feel like I was with kindred souls.
One of my favorite stories ( http://www.dr-bob.org/babble/20000112/msgs/18948.html ), even though it was a horrible experience for you, was when you had the flu and passed out in the shower! I related so well to that experience, having done it myself on many occasions, and your blow-by-blow narration had tears streaming down my cheeks and laughter tumbling from my mouth. When I was a newbie at Psycho-babble, I was intimidated by all the knowledge and experience, and I waited a long time before actually posting my lame-brained newbie question. But the courage I garnered in order to post that first query came from the warmness shared by a couple people, one of which was you.
I am completely overjoyed by your continued good health, and so appreciative of your blatantly stellar update! You made a lasting impression upon me and you will *always* be in my thoughts! You enabled me to laugh even when the darkness enclosed me, and you took my mind off the void awaiting my soul; all through sharing your life, your struggles, and even the "little" things like music preferences so generously and honestly. And all I can give you in return is my eternal and *enormous* gratitude for your honesty in everything you shared and gave to make this place a real community. I feel extremely encouraged by your progress, and I truly hope that you can find the time just to check-in, even a mere once-a-year update would be more than welcomed :-)
Forever, you will remain in my thoughts and prayers.
dove
Posted by Noa on November 17, 2000, at 14:42:43
In reply to Re: Just thought I'd check in..., posted by dove on November 17, 2000, at 14:33:47
Wishing I could express myself like Dove can, I would like to add.....
"what she said--ditto"
Posted by shellie on November 17, 2000, at 18:35:06
In reply to Re: Just thought I'd check in..., posted by Noa on November 17, 2000, at 14:42:43
>
Posted by JohnB on November 18, 2000, at 1:35:28
In reply to Just thought I'd check in..., posted by Adam on November 16, 2000, at 20:51:57
Adam,
Nice to hear from you. That's the best post I've ever read on this board. A bit of hypomania does have it's uses! So many folks here are struggling; it's nice to hear a happy ending.
Selegiline is definitely on my list of possibles; seems to be mentioned here a lot lately.Best wishes to you and your girlfriend.
Posted by Janice1 on November 19, 2000, at 18:27:27
In reply to Just thought I'd check in..., posted by Adam on November 16, 2000, at 20:51:57
hi Adam,
I always loved your posts, especially the one where you went to the hospital. The quality of writing on this sight is really great, and you are a great story teller (I know your story is true). I'm glad to hear things are going so well for you. Janice
Posted by allisonm on November 20, 2000, at 22:03:17
In reply to Just thought I'd check in..., posted by Adam on November 16, 2000, at 20:51:57
Adam,
It's good to see your post. I've missed seeing your posts, but am extremely glad you're doing so well. It gives me hope.
Thanks again.
Allison
Posted by Judy on November 21, 2000, at 10:31:57
In reply to Just thought I'd check in..., posted by Adam on November 16, 2000, at 20:51:57
Adam~
How nice to hear that you're doing so well! I've thought of you many times and your beautiful Thanksgiving post last year that made me weep.
Happy holidays and my very best wishes for your continued success.
Judy
Posted by Noa on November 21, 2000, at 11:06:51
In reply to Re: Just thought I'd check in..., posted by Judy on November 21, 2000, at 10:31:57
>I've thought of you many times and your beautiful Thanksgiving post last year that made me weep.
> JudyIn case anyone wants to read it---the thread starts at:
http://www.dr-bob.org/babble/19991123/msgs/15903.html
There are actually two major posts by Adam in the thread.
Posted by Adam on November 21, 2000, at 16:02:34
In reply to Just thought I'd check in..., posted by Adam on November 16, 2000, at 20:51:57
My goodness.
I had no idea I had made such an impression. I must confess I have forgotten much of what I had posted here in the past, and the fact that others remember the posts cited above is quite humbling.
Thank you all, as well. You are better than me by far at giving praise, and I must confess part of my absence here has been a result of my mixed feelings in regards to many posts I have made that, in retrospect, I rather regret making. These are posts where a more contentious and ideologically inflexible side was manifest. It is interesting that I tend to remember these more.
You know, though, some of those old posts ARE good, aren't they. It's mostly because I'm being generous with my genuine (and original) thoughts, rather than being snide or a bit of a pedant. Any generous post is, by that virtue, good and worthy of remembering, whoever offered it.
But, again, thank you all. Things HAVE been good, by and large, though there's much work to be done still. I suppose there always is. Selegiline HAS treated me well, and if you are opting to give it a try, I hope it can help you. I've posted plenty on that drug, too, much of which is, hopefully, accurate.
Take care of yourselves. I am grateful for your warm feelings, and hope you stick around. I will be around too, from time to time. Best wishes,
Adam
Posted by Noa on November 21, 2000, at 16:30:32
In reply to Re: To all, posted by Adam on November 21, 2000, at 16:02:34
Adam, would you be interested in creating a "selegeline" folder at psycho-babble-tips/links at egroups?
Posted by Adam on November 22, 2000, at 10:46:53
In reply to Re: To all, posted by Noa on November 21, 2000, at 16:30:32
Yes, I would be glad to, if you can provide some brief instructions. It may take me a little while to compile all the information, but I think it is a good idea.
Adam
> Adam, would you be interested in creating a "selegeline" folder at psycho-babble-tips/links at egroups?
Posted by AndrewB on November 24, 2000, at 12:04:46
In reply to Just thought I'd check in..., posted by Adam on November 16, 2000, at 20:51:57
Adam,You take a total of 30mg./day?
I would be curious if an add-on low dose antipsychotic (i.e. zyprexa, amisulpride) would reduce jitteriness and mood instability of selegiline. It is a pet theory of mine that these med.s can, at least sometimes, accomplish this.
I presume the insomnia is caused by night time release of the amphetamine metabolite that selegiline produces. Counter with a short acting D2 blocker at bedtime? Mirapex, a D2/D3 agonist, seems to last about 6 hours and at low doses blocks D2 activity. There are other options too along this line but I just thought I would bring the idea to your attention.
I also wonder what your p-doc thinks the effect would be of slightly lowering your selegiline dose and adding on a COMT inhibitor (i.e. talcopone)?
Best Wishes, glad to hear from you again,
AndrewB
Posted by Adam on November 27, 2000, at 10:49:41
In reply to Adam, posted by AndrewB on November 24, 2000, at 12:04:46
Hi, AndrewB,
>
> Adam,
>
> You take a total of 30mg./day?
>
Yes. I tried lower oral doses, and didn't feel they worked as well as I wanted.> I would be curious if an add-on low dose antipsychotic (i.e. zyprexa, amisulpride) would reduce jitteriness and mood instability of selegiline. It is a pet theory of mine that these med.s can, at least sometimes, accomplish this.
>
Others agree with your pet theory. There are at least a couple published reports of the used of risperadol as an antidote to selegiline-induced psychosis in Parkinson's patients, and it is reasonable to conclude that other atypical antipsychotics with similar mechanisms of action would also serve to ameliorate selegiline's negative side-effects. Risp. is one I looked at closely because it has also shown promise as an adjunct to SSRIs in refractory OCD patients.> I presume the insomnia is caused by night time release of the amphetamine metabolite that selegiline produces. Counter with a short acting D2 blocker at bedtime? Mirapex, a D2/D3 agonist, seems to last about 6 hours and at low doses blocks D2 activity. There are other options too along this line but I just thought I would bring the idea to your attention.
>
> I also wonder what your p-doc thinks the effect would be of slightly lowering your selegiline dose and adding on a COMT inhibitor (i.e. talcopone)?
>
I think all of these are reasonable options, and I have, as mentioned above, considered strategies essentially along these lines. Talcopone is one I hand't considered, and might be worth studying a bit. At any rate, I have opted to avoid polypharmacy for now, and rather try to deal with some of selegiline's negative effects without other drugs. Like I said above, the side effects aren't all that terrible (though admittedly, bothersome at times). If I change my mind, I'll share my experiences in this forum.Thanks!
Adam
> Best Wishes, glad to hear from you again,
>
> AndrewB
This is the end of the thread.
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