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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 16 of 16. This is the beginning of the thread.
Posted by allisonm on October 24, 2000, at 21:52:56
My doctor changed my meds last week because the combo I had wasn't working (nothing has completely). I am now starting up another drug to augment the AD I am taking. When he was describing the new drug last week, he said it has worked with refractory OCD and refractory depression. My head was spinning a little bit because this change came unexpectedly.
So this week, I asked him whether he considered this refractory depression. He said yes, but it's also chronic depression: I have had it so long and it went untreated for so long that this makes it even more difficult to treat, so he's inclined to call it chronic and refractory.
The more I think about it, the more I feel as though I have just been given a death sentence.
Posted by Ted on October 24, 2000, at 22:50:18
In reply to labels, posted by allisonm on October 24, 2000, at 21:52:56
Allison,
> The more I think about it, the more I feel as
> though I have just been given a death sentence.Not at all! Hang in there. Chronic just means long lasting and refractory just means difficult to treat. Nowhere is there a hint of "fatal". Some of us just have a harder time than others, myself included at times.
One thing I recommend is that you keep a log of every med/combo you have tried and see if there is anything you might have overlooked in terms of combos or alternatives.
Don't give up! Eventually, someday, you will get at least *some* relief, and new drugs are coming out all the time. The magic bullet for you might be just around the corner.
Take care of yourself, and avoid those negative thoughts.
Ted
Posted by allisonm on October 25, 2000, at 11:37:04
In reply to Re: labels, posted by Ted on October 24, 2000, at 22:50:18
Ted,
I know it's not fatal, unless I decide it should be. The words chronic and refractory give me the impression that I will never be rid of this and that I will be dogged by it as I am now for the rest of my life. Even if I get rid of it, because it is chronic I would assume that there is a very good chance that it will come back. Having to live the way I am now for the rest of my life may as well be a death sentence. I suppose it would be more accurate to call it a "life sentence with no chance of parole."
Yes, there are lots and lots of drugs out there. I have tried several. None has worked completely. I have kept hopeful that the right one will come along. The next stop after the current trial is MAOIs. My depression restricts me enough as it is without having to watch everything I eat as well -- possibly for the rest of my life.
Sorry for the negative thinking. It's just where I am right now.
Allison
Posted by Noa on October 25, 2000, at 15:24:35
In reply to Re: labels » Ted, posted by allisonm on October 25, 2000, at 11:37:04
I can relate, but I agree with Ted. I have felt what you describe--feeling it will never end, but it is possible to get past that feeling and see hope. The way I view my chronic depression is that I may have some episodes from time to time, but they don't have to be horrible, if I can learn not to catastrophize every depressed mood, and learn to guage the mood changes more sensitively and quicklym, and do what I need to do to take care of myself.
Keep searching for the treatment combo that works for you--"Leave no stone unturned."
Posted by Ted on October 25, 2000, at 23:22:23
In reply to Re: labels » Ted, posted by allisonm on October 25, 2000, at 11:37:04
Allison,
> I know it's not fatal, unless I decide it
> should be.Well DON'T! OK? Just don't. 'nuff said.
> I suppose it would be more accurate to call it
> a "life sentence with no chance of parole."You never know... you might get a reduced sentence for good behavior. :-)
> Yes, there are lots and lots of drugs out
> there. I have tried several.Noa is the one who said "leave no stone unturned." If you have tried only "several" then try them all! And try some of the good combos, like SSRI+wellbutrin and Effexor+wellbutrin.
> None has worked completely.
Neither does Microsoft software, but we put up with it every day, right? Maybe you will never be out of depression *completely*, but does that really matter? Isn't it good enough to be much better 100% of the time and completely free, say, 20% of the time. I would go for that.
> Sorry for the negative thinking. It's just
> where I am right now.It's ok -- BTDT. Just take care of yourself and don't give up hope. I know -- easier said than done, but you owe it to yourself to *try*.
Ted
Posted by allisonm on October 26, 2000, at 18:55:43
In reply to Re: labels » allisonm, posted by Ted on October 25, 2000, at 23:22:23
< < You never know... you might get a reduced sentence for good behavior. :-) > >
I **have** been on good behavior. It doesn't matter what I do.< < If you have tried only "several" then try them all! And try some of the good combos, like SSRI+wellbutrin and Effexor+wellbutrin. > >
I tried SSRIs. They drove me up the wall. Then I tried Effexor XR. I hung on for what seemed an eternity waiting for the side effects to lessen, but they also drove me up the wall and I had to discontinue. Then I got on Remeron, then Remeron with lithium, then Remeron alone again, then Remeron with Wellbutrin, then Remeron with more Wellbutrin, then Wellbutrin with Remeron, now Wellbutrin (400mg) with Neurontin (600mg). If W&N don't work, it is on to an MAOI, which will require a 2-week washout. I cannot imagine trying to work in that time. I am having difficulty right now just waiting for the Neurontin to start working. I have been snapping at people or biting their heads off all day today.< < Maybe you will never be out of depression *completely*, but does that really matter? > >
Yes. It does.< < Isn't it good enough to be much better 100% of the time and completely free, say, 20% of the time. I would go for that. > >
Sorry to nitpick, but how does one define "much better"? 1. Much better -- feeling good most days with the occasional dark spell when something runs amok? 2. Much better -- not thinking about suicide for the most part, functioning at work (ie, being able to concentrate and get some work done), but not often being able to really laugh, not feeling like doing much most of the time and still generally avoiding people?For various, often external reasons, since I started drugs and therapy in January of 1998, I have not been "much better" (my definition is somewhere around #2) for more than even 6 months, much less 100% of the time and I cannot recall the last time in the last 10 years when I was completely free -- it might have been as long ago as 1985-86.
< < It's ok -- BTDT. > >
Sorry, what does BTDT mean?Allison
Posted by pullmarine on October 26, 2000, at 19:59:01
In reply to labels, posted by allisonm on October 24, 2000, at 21:52:56
There are serious debates among MHCP about the labels that shrinks use, and the dangers of labelling people: for one, the labels and list of symptoms have no scientific basis (see They Say You're Crazy by caplan). Furthermore, there are many shrinks who consider labeling dangerous, because patients tend to hold on to these arbitrary construct, and center their lives around them, define themselves. It becomes almost a definition of whom they are. Most people, in my experience are far more than labels. Male, female, gay, black, jewish , depressive, schizoid, or whatever, says nothing about a person, their feeling, their history, intelligense, sensitivity, or anything else. If i were you, i'd fire him and get a shrink who is very critical od DSMIV and labelling.
JOHN
Posted by allisonm on October 26, 2000, at 20:19:07
In reply to The problem with labels, posted by pullmarine on October 26, 2000, at 19:59:01
He's never come out and told me my "official" diagnosis. While I first went to him with complaints/symptoms of depression and he confirmed that that is what it was, he never volunteered what my Dx was. I got it off the invoice for the insurance company and looked it up on the internet. And when he changed the Dx number, I looked it up again, but he's never told me what it is or why. I suppose it is my own fault for asking him whether he considered this refractory depression. He is not one to coddle, hide or avoid giving information. When asked, he tells the truth in plain terms.
Posted by Ted on October 26, 2000, at 23:40:33
In reply to Re: labels » Ted, posted by allisonm on October 26, 2000, at 18:55:43
Hi Allison,
> I tried SSRIs. They drove me up the wall....
Sounds like you really have been through the whole pharmacy. Have you tried things like lithium? Neurontin is a good idea. Perhaps lamictal, zyprexa, or one of the other antipsychotics will help. I have read that these are good for some people. Keep off the MAOIs until the very last minute.
I can tell you are very angry and desperate to end your pain. We have all been there at one time or another. This is the place for support. Is it possible for you to really relax and de-stress? Sometimes exercise helps (but it ain't no cure). Do you get any support from those around you? What I did in the distant past was just go to where lots of people were, like the park or library, and just read. I felt better just being out and about instead of hiding in my apartment.
> < < It's ok -- BTDT. > >
> Sorry, what does BTDT mean?Been there, done that.
Take care of yourself and keep posting. I have found groups like this one to be very helpful.
Ted
Posted by pullmarine on October 27, 2000, at 0:36:26
In reply to Re: The problem with labels, posted by allisonm on October 26, 2000, at 20:19:07
Doctors often use labels that are not acurate for insurance purposes.
John
Posted by noa on October 27, 2000, at 6:50:50
In reply to Re: The problem with labels, posted by pullmarine on October 27, 2000, at 0:36:26
> Doctors often use labels that are not acurate for insurance purposes.
>
> John
I agree---either not accurate or only approximate.I think of labels in terms of their usefulness. I think a lot of shrinks use them for insurance purposes, and may use them differently for diagnostic purposes to drive decisions. For therapists, I think the labels may be used for insurance, but how they think about the patient may not even conform to the DSM system.
Remember that any diagnostic system of labels is man-made and is only as good as its usefulness. It does not define us.
Posted by allisonm on October 27, 2000, at 7:00:13
In reply to Re: labels » allisonm, posted by Ted on October 26, 2000, at 23:40:33
Ted,
Yes I tried lithium for 6 months to augment Remeron. It hated it. I could not stop the weight gain no matter how much I exercised or watched what I ate. I had diarrhea every day at 11 a.m. and in the afternoon. I could set my clock to it.I have not tried lamictal, zyprexa, or the other antipsychotics.
< < Is it possible for you to really relax and de-stress? Sometimes exercise helps (but it ain't no cure). > >
Work has been difficult and stressful for the last 8 months or more. About the only thing that helps with stress is taking a day off. weekends don't do it.< < Do you get any support from those around you? > > Not much. My mother died of her alcoholism two years ago and within two weeks of when my husband left me. I am an only child. My father doesn't think I should be taking these drugs or going to a doctor because I'm the most "level-headed girl" he knows, so I can't talk to him. I have a friend I email a lot who has depression who has been a great help. My best friend is supportive but she is meeting with HR today(at their request) to see if she still has a job because her boss doesn't like her and she's pregnant unexpectedly after losing her baby last March, so she's under a TON of stress and I don't want to burden her. My other best friend does not understand depression, doesn't see why I'm on drugs and just thinks I should think positively. That's my support system. I used to talk to my boss because she's had depression, but she just tried to get me to take a medical leave because she didn't like the way I was reacting to her ridiculous projects and management, so I don't dare mention anything -- especially difficulties. She's afraid for her job right now, too, so her energies are going into keeping employed, not helping others. My weekly sessions wiith my psychiatrist are the best support I have. It's sad when you have to pay someone to listen to you.
< < What I did in the distant past was just go to where lots of people were, like the park or library, and just read. I felt better just being out and about instead of hiding in my apartment. > >
When I am feeling bad I stay away from people -- even friends. I feel dark and self-conscious and reluctant to interact. When I do I am prone to biting their heads off.Allison
Posted by ksvt on October 27, 2000, at 22:11:55
In reply to Re: labels » Ted, posted by allisonm on October 27, 2000, at 7:00:13
Alisonm - for me the worst thing about really being depressed is that it has such a permanent feel. We also have had such bad experiences, that we're constantly looking over our shoulders waiting for that next episode to hit, and not knowing how long it will hang around. The first time my shrink used the term "chronic" I pretty much freaked because, like you, I felt that it was sort of a life sentence. I try to stay away from those labels when I can because I think they really are scary and not particularly helpful. I'm far better off when I'm not thinking and speculating about my long term prognosis. Over time, I've learned that even if depression is a part of my daily life, there are degrees of depression. Sometimes it feels pretty debilitating, but sometimes it's there in the background but I'm able to handle it better. When I'm real depressed, I try to remember that the most acute feelings do go away, regardless of how permanent they seem at that moment. I also sometimes try to think of it like a wave I've been caught in. I just have to ride the wave until it hits shore - I may not be able to control it alot, but it will hit and I will be able to come up for air. I feel really bad for you because I can identify so well with everything you are writing about. Try to hang in there because I know you won't feel exactly as you do now forever. ksvt
Ted,
> Yes I tried lithium for 6 months to augment Remeron. It hated it. I could not stop the weight gain no matter how much I exercised or watched what I ate. I had diarrhea every day at 11 a.m. and in the afternoon. I could set my clock to it.
>
> I have not tried lamictal, zyprexa, or the other antipsychotics.
>
> < < Is it possible for you to really relax and de-stress? Sometimes exercise helps (but it ain't no cure). > >
> Work has been difficult and stressful for the last 8 months or more. About the only thing that helps with stress is taking a day off. weekends don't do it.
>
> < < Do you get any support from those around you? > > Not much. My mother died of her alcoholism two years ago and within two weeks of when my husband left me. I am an only child. My father doesn't think I should be taking these drugs or going to a doctor because I'm the most "level-headed girl" he knows, so I can't talk to him. I have a friend I email a lot who has depression who has been a great help. My best friend is supportive but she is meeting with HR today(at their request) to see if she still has a job because her boss doesn't like her and she's pregnant unexpectedly after losing her baby last March, so she's under a TON of stress and I don't want to burden her. My other best friend does not understand depression, doesn't see why I'm on drugs and just thinks I should think positively. That's my support system. I used to talk to my boss because she's had depression, but she just tried to get me to take a medical leave because she didn't like the way I was reacting to her ridiculous projects and management, so I don't dare mention anything -- especially difficulties. She's afraid for her job right now, too, so her energies are going into keeping employed, not helping others. My weekly sessions wiith my psychiatrist are the best support I have. It's sad when you have to pay someone to listen to you.
>
> < < What I did in the distant past was just go to where lots of people were, like the park or library, and just read. I felt better just being out and about instead of hiding in my apartment. > >
> When I am feeling bad I stay away from people -- even friends. I feel dark and self-conscious and reluctant to interact. When I do I am prone to biting their heads off.
>
> Allison
Posted by quilter on October 28, 2000, at 1:41:31
In reply to Re: labels » Ted, posted by allisonm on October 26, 2000, at 18:55:43
Have you tried any of the tricyclic ADs? I would go through several of them before trying a MAOI. There are also several augmentation strategies that you don't mention trying. Have you tried seeing an endocrinologist to be sure that your thyroid is not a factor in your depression? Are you seeing a therapist? This part of depression can be helped by a frank discussion of the hopelessness these labels have evoked in you.
One of the most encouraging things for me was having a pdoc point out that when combinations of meds are considered, there are thousands of possibilities that things can get better. As you said "better" is a relative term. Depression will wax and wane over the months and years. I hope you will try to think of diagnoses as snapshots describing how you are now, not solid predictions of what lies ahead.
Oh dear... I'm preaching again, forgive me. Quilter
Posted by allisonm on October 28, 2000, at 9:25:09
In reply to Re: labels, posted by quilter on October 28, 2000, at 1:41:31
Quilter,
Thanks, you're not preaching. I guess I haven't tried any of the tricyclics. I thought Remeron was something like a tricyclic, but maybe it isn't. I have not seen an endocrynologist, but have had my thyroid tested and that has been ruled out.
My psychiatrist also is my therapist. I see him weekly for medications and for psychotherapy. I like this arrangement because he can see from week to week how I am and how the meds are working (or not working). He's younger, not brand-new, but young so I think he's current, and old enough to have had enough experience to know what to do (I would guess late 30s, early 40s). He is an assistant clinical professor in the psychiatry department of the university here. He's very compassionate. He always returns my phonecalls, usually within a few hours or by the next morning if it is late in the day and he responded immediately when I called once with an emergency. He's punctual. He doesn't rush me out of his office. I value that a lot. He often asks whether I have any questions and he answers them without hesitation, patronization, or bravado. My only regret is catching him with this question about refractory depression as I was literally getting up to leave. He answered frankly, but we had no time to discuss it further.
Posted by allisonm on October 28, 2000, at 9:27:18
In reply to Re: labels, posted by ksvt on October 27, 2000, at 22:11:55
This is the end of the thread.
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