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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 15 of 15. This is the beginning of the thread.
Posted by scatterbrained on March 2, 2006, at 20:30:48
I have seen the same people on this board(myself included) for years searching and searching for that one perfect drug and nothing works for many of them. At what point do we just accept that we have an illness that is refractory? I don't want to spend my whole life going from one medication to another, having that false hope that it will work and then getting let down again and again and again.I don't want to spend my whole life on this board. And I'm tired of dealing with the absolutely horrific side effects that I tend to get for whatever reason, all for the sake of "maybe this one will work". I'm absolutely pro medication but I'm not pro denial. And I'm not pro torturing myself with these side effects. I guess it's one thing if the medications didn't cause terrible side effects with me and just didn't do anything. If that were the case I would perhaps be more interested in trying all the drugs and combinations I haven't tried yet(which are limited). But for me I am super sensitive to the medications and just because i don't have a lasting positive response *anymore* from them doesn't mean that I'm not feeling the drug. I'm feeling it, it's just not doing what it's supposed to do and instead I'm getting terrible side effects.
What I have decided to do for the time being is to accept that I'm treatment reisitent,give my body a break and not try anymore drugs(I have been off medication for about three months, excluding omega 3). I want to find ways to compensate instead of getting rid of this debilitating disease, since getting rid of it seems to be an impossibility for me. I'm going to start neurocognitive rehabilitation pretty soon( which will hopefully help with the cognitive problems) . If it can help rehabilitate people suffering from strokes I don't see why it wouldn't help with other forms of cognitive impairment(depression is certainly a form of cognitive impairment, especially the anhedonia variant). Anyway, I don't expect it to do anything profound but I guess that's the point. I am begining to accept that I have to live with this disease, I can't get rid of it, I have to find ways to deal with it.This is not a hopeless discovery, it would only be hopeless if I wasn't looking into ways to compensate for it.
This message isn't for people who have had a good response to medications(don't stop taking your medications) or who are just starting out going through all the drugs. But for us who have done this for a while I think acceptance is a good idea.
Posted by Phillipa on March 2, 2006, at 21:25:20
In reply to Acceptance...at what point, posted by scatterbrained on March 2, 2006, at 20:30:48
Finally saw a therapist today and I start CBT. Cognitive Behavior Therphy. It requires hard work and changing the way you think. And it's okay to take with meds. Fondly, Phillipa
Posted by scatterbrained on March 2, 2006, at 22:56:38
In reply to Re: Acceptance...at what point » scatterbrained, posted by Phillipa on March 2, 2006, at 21:25:20
> Finally saw a therapist today and I start CBT. Cognitive Behavior Therphy. It requires hard work and changing the way you think. And it's okay to take with meds. Fondly, Phillipa
Yeah I have tried CBT before. It only works for me when I'm able to think straight enough to go through the steps needed for the therapy, i get confused what I'm thinking about half way through
my thought process.I haven't been able to think straight in a long time and the medication only tends to make it worse. That is why neurorehabilitation might help me because it works on rehabilitating cognitive processes that are not working as well as they used to for whatever reason.People with stokes use it as well as other brain disorders. unlike CBT,i neurorehab the psychology is secondary to rehabilitating lost abilities. but again, it can only do so much. I have realized that what I am dealing with is mainly two things...anhedonia and severe confusion. So I don't even know if depression is the right word for what I have, I'm not sad. I think i may have something neurological although once you have a history of an affective illness nobody takes you seriously(aka stigma)
Ohh well, I'll keep truckingOhh yeah, good luck with the CBT, it will work for you because you don't have a cognitive problem. it's the best psychological treatment out there for depression. What I have is different but when I just had depression it worked like a charm. And the best thing is that it creates autonomy between you and the therapist because he/she gives you exercises that you can take with you and use for the rest of your life unlike other forms of therapy where you're dependent on the therapist. It's short term therapy and the work is done in your own head, not on the couch.
Posted by Phillipa on March 2, 2006, at 23:16:53
In reply to Re: Acceptance...at what point » Phillipa, posted by scatterbrained on March 2, 2006, at 22:56:38
Thanks I needed to hear that. Love Phillipa
Posted by SLS on March 3, 2006, at 6:58:40
In reply to Acceptance...at what point, posted by scatterbrained on March 2, 2006, at 20:30:48
Hi.
I guess each person will have a different point depending on any number of variables.
I think your approach towards dealing with your illness is extraordinarily positive, constructive, healthy and adult, and should yield an improved quality of life.
One of my former "brilliant" doctors told me that I should stay as clean as possible between trying novel treatments. I do wonder sometimes if going drug free for a few years wouldn't make me again responsive to the Parnate + desipramine combination that once got me well. Unfortunately, the severity of my illness has increased greatly compared to what it was back then. I don't think I could maintain my independent living without the small improvements that my drugs currently afford me. I really am trapped. You are fortunate if you can survive without drugs and take that doctor's advice. You might want to give rTMS a try when it becomes generally available. According to a researcher I spoke to the other day, it might be approved for the treatment of depression within two years. Perhaps sooner. I just hope insurance companies elect to cover it. I don't think they have been too quick to cover VNS.
Acceptance of your situation? It might be time to retreat from the current battle and choose others to fight. It will be a battle to just survive without drug treatment. It will still be a fight. Choosing other modalities to improve your quality of life demonstrates that you have not given up the fight. The war may yet be won in your lifetime. Never give up the dream. I hope I never do.
Good luck.
- Scott
Posted by ClearSkies on March 3, 2006, at 9:05:50
In reply to Re: Acceptance...at what point » scatterbrained, posted by Phillipa on March 2, 2006, at 21:25:20
> Finally saw a therapist today and I start CBT. Cognitive Behavior Therphy. It requires hard work and changing the way you think. And it's okay to take with meds. Fondly, Phillipa
Phillipa, that is good news! I hope that you find CBT a helpful tool. My pdoc won't see a patient unless they are also seeing a therapist. She thinks that medication and therapy works best for my situation (bipolarII and anxiety). So far I have to agree. And also I have found that just as medications have been trial and error, so has been finding the right therapist. Don't be afraid to talk to a few of them if the fit does not feel right with the first choice.
Good luck!
ClearSkies
Posted by scatterbrained on March 3, 2006, at 11:55:37
In reply to Re: Acceptance...at what point » scatterbrained, posted by SLS on March 3, 2006, at 6:58:40
sls wrote...I don't think I could maintain my independent living without the small improvements that my drugs currently afford me. I really am trapped. You are fortunate if you can survive without drugs and take that doctor's advice.
The thing with me is that the drugs don't give me any improvement, in fact they can make my cognition worse. It's not so much that I can survive without drugs, it's that I have no choice. I'm living a very minimal existence because of all the cognitive problems. You are lucky in the sense that you get some positive response, anyway thanks for your kind words
Posted by SLS on March 3, 2006, at 13:11:21
In reply to Re: Acceptance...at what point » SLS, posted by scatterbrained on March 3, 2006, at 11:55:37
I guess the grass is always browner on my side of the fence...
:-)
For me, it is the lack of mental and physical energy that gets in the way most. Sure, I couldn't think my way out of a paper bag, or even remember what one looks like, but at least I can get myself dressed and go out to buy groceries and do laundry. I hate doing laundry.
- Scott
Posted by honeybee on March 3, 2006, at 15:31:51
In reply to Re: Acceptance...at what point » SLS, posted by scatterbrained on March 3, 2006, at 11:55:37
What is this neurorehabilitation that you're talking about? What do you do/what does it do?
Thanks for sharing. Good luck to you. And I hear you about the frustration about the cognitive problems and seeing your previously tidy house, with excellent memory and linguistic agility become a labyrinthine sty with glue on the walls and the floor. Navigation, at that point, becomes preposterous, and extremely difficult.
I'm having some luck, by the way, with acupuncture. It's very early to tell, but I'll be honest that I thought my life was over in December last year and things have improved markedly. Not having had much experience with it, or the herbal preparations that they give, I can't speak more extensively. But the approach--with its questions of diet and lifestyle, down to the consistency of your stools and your sleep patterns--differs so much from psychiatry and seems, to me, so much more sensible, holistic and informed. You may be done with all of it (I understand), but since it's helping me I wanted to pass along the cautious endorsement.
Posted by addinbc on March 3, 2006, at 17:27:45
In reply to Acceptance...at what point, posted by scatterbrained on March 2, 2006, at 20:30:48
Hi "Scatterbrained";
I'm sorry to hear of your struggles. You sound like a very strong person, and your approach is very humbling. Thank you for sharing your thoughts!
This might sound like it's coming from left field, and I'm new here, so I don't know if this has been mentioned before....but looking at your description of your cognitive difficulties and even the 'pen name' that you use, I'm wondering if you have looked into Attention Deficit Disorder?
I was mis-diagnosed with depression and anxiety for over 10 years, and tried all the AD's (mostly the SSRI's) to little or no avail. Then I started looking into ADD, and was recently diagnosed in June of 2005.
The thing is, Attention Deficit Disorder (inattentive subtype) can mimic depression in many ways - instead of being hyperactive as in ADHD - hyperactive subtype, inattentive ADDers tend to be 'hypo'-active (under-active). My diagnosis makes ALOT of sense to me now, but nobody ever picked it up before I brought it to their attention.
As I said, this may seem to be coming from left field, but I thought I'd mention it anyway. Best of luck to you!!
Posted by pseudoname on March 4, 2006, at 11:25:43
In reply to Acceptance...at what point, posted by scatterbrained on March 2, 2006, at 20:30:48
> I don't want to spend my whole life going from one medication to another, having that false hope that it will work and then getting let down again and again and again
I once burst into tears in a pdoc’s office when she asked me why I hadn’t taken the med she prescribed. I sobbed, “I don’t want to go through all that again!” Try, hope, fail. Try, hope, fail.
That was 13 years ago and I did “go through all that again” with about 6 different docs and many more tears — AND I went many years without drugs, just living with the depression, not trying to get better or do things I couldn’t. But I finally have (for now?) found a med that actually does work. So, it can happen, even on Babble. ;-)
Acceptance can be very powerful but also kinda tricky. If you’re considering it, can I suggest looking at "Acceptance and Commitment Therapy"? There’s now a self-help book about it (which I haven’t read) called "Get Out of Your Mind and into Your Life". They say that acceptance doesn’t have to follow failures but frees you to design & achieve different types of success. This sounds like what I thought you were moving toward in your post. Their key is *mindful* acceptance, which separates “you” from the illness.
Also, acceptance of a refractory illness doesn’t necessarily preclude continuing to try medications (etc) to get rid of it. It can just free you from being overwhelmed by feelings of failure if the meds don’t work.
And props to you for considering such a creative approach! I’d really appreciate hearing about your neurocognitive rehab and how it goes. Best of luck with it.
Best wishes.
Acceptance and Commitment Therapy thread on Psycho board: http://www.dr-bob.org/babble/psycho/20060211/msgs/611694.html
Posted by scatterbrained on March 4, 2006, at 22:45:00
In reply to Re: Acceptance...at what point, posted by honeybee on March 3, 2006, at 15:31:51
" What is this neurorehabilitation that you're talking abut? What do you do/what does it do?"
>
Neurorehabilitation is mainly done with people who have suffered a stroke, or other "organic" brain disorders. Most major hospitals have a center for rehabilitative medicine where they work on exercises to retrain the brain. Unfortunatly this method is seldomly used with affective illness even though depression is known to cause major cognitive decline to the point of psueudodementia. I personally believe that any illness that causes cognitive decline regardless of it's cause,should be treated in part with neurorehabilitation.
" I'm having some luck, by the way, with acupuncture. It's very early to tell, but I'll be honest that I thought my life was over in December last year and things have improved markedly. Not having had much experience with it, or the herbal preparations that they give, I can't speak more extensively. But the approach--with its questions of diet and lifestyle, down to the consistency of your stools and your sleep patterns--differs so much from psychiatry and seems, to me, so much more sensible, holistic and informed. You may be done with all of it (I understand), but since it's helping me I wanted to pass along the cautious endorsement."Thanks for the heads up about acupuncture, I'll look into it
Posted by scatterbrained on March 4, 2006, at 22:54:30
In reply to Re: Acceptance...at what point » scatterbrained, posted by addinbc on March 3, 2006, at 17:27:45
I agree that a lot of my symptoms are ADD like but the only problem is that with the stimulant medication, I build up a tolerance to the drugs super fast and when they wear off I literally can't speak. If there was an ADD medication that I didn't build a tolerance to and that worked around the clock instead of wearing off at the end of the day then perhaps a diagnoses of ADD would mean more to me.
For me, it's not that the drugs don't work, it's that they don't contiunue to work after a few days. Maybe there is something wrong with the way I matabolize psychotropics.
Posted by scatterbrained on March 4, 2006, at 22:58:30
In reply to Acceptance » scatterbrained, posted by pseudoname on March 4, 2006, at 11:25:43
What is the medication you are on now that is finally working for you?
Posted by pseudoname on March 5, 2006, at 11:21:31
In reply to Re: Acceptance » pseudoname, posted by scatterbrained on March 4, 2006, at 22:58:30
> What is the medication you are on now that is finally working for you?
Since late November, I have been taking buprenorphine (Subutex), a mild synthetic opioid, for my unipolar depression.
This is the end of the thread.
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