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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 32 to 56 of 75. Go back in thread:
Posted by KaraS on February 18, 2005, at 2:06:43
In reply to Re: New psychiatrist is hopeless (Try VNS) » pseudonym, posted by jerrympls on February 18, 2005, at 0:33:39
> > I'm not certain where you live (Canada?), but I recollect you built your own TMS device so you'd likely consider this idea.
> >
> > I know that Vagus Nerve Stimulation was recently approved for those who have treatment resistant depression. Cyberonic estimates the availability of the device by May 2005. If I didn't know otherwise, you are good candidate, agreed?
> >
> > Surive and then live.
>
> YES - Try for VNS. I was in the d-2 study. It didn't work for me - but I think that was because they were constantly fooling with the settings to find the therapeutic range. I know of many others who were in the study here and VNS changed their lives - and it just might change yours for the better. Hopefully insurance will pay. Goto http://www.cyberonics.com to check it out. Email me or babblemail me for more info. I thought VNS was my last choice - but even tho it didn't work FOR ME - it opened new doors - I got to see top notch psychiattrists.
>
> Jerry
>Jerry,
How major is the surgery involved?Kara
Posted by jerrympls on February 18, 2005, at 2:37:59
In reply to Re: New psychiatrist is hopeless (Try VNS) » jerrympls, posted by KaraS on February 18, 2005, at 2:06:43
> > > I'm not certain where you live (Canada?), but I recollect you built your own TMS device so you'd likely consider this idea.
> > >
> > > I know that Vagus Nerve Stimulation was recently approved for those who have treatment resistant depression. Cyberonic estimates the availability of the device by May 2005. If I didn't know otherwise, you are good candidate, agreed?
> > >
> > > Surive and then live.
> >
> > YES - Try for VNS. I was in the d-2 study. It didn't work for me - but I think that was because they were constantly fooling with the settings to find the therapeutic range. I know of many others who were in the study here and VNS changed their lives - and it just might change yours for the better. Hopefully insurance will pay. Goto http://www.cyberonics.com to check it out. Email me or babblemail me for more info. I thought VNS was my last choice - but even tho it didn't work FOR ME - it opened new doors - I got to see top notch psychiattrists.
> >
> > Jerry
> >
>
> Jerry,
> How major is the surgery involved?
>
> KaraThe surgery wasn't so bad. It lasts about an hour. They implant the pocket watch sized implant under your skin right beneath your left collar bone and then tunnel the lead wire up under your skin along the left side of your neck. The other incision is about 2 inches long - usually in a crease on the left side of your neck - they open that up to get at the vegal nerve and connect the lead. I had mine done in the morning and was released in the late afternoon. There was pain of course - stiffness and soreness around the incisions sites. I was able to go back to work in under a week. You don't feel the implant at all because it's so light and small. If it doesn't work out or complications arise from the surgery - it is completely reversable. Some people with asthma have exasterbation of their symptoms when the device goes off (usually set every 5 mins for 30 seconds). Also, depending on the settings of the device, it can effect your voice because the vegal nerve is so close to the vocal chords. At one high setting they had me at, I sounded like I was talking into a fan - like a robot - when the device went off. Other times at different settings my voice would go a bit hoarse. It's hardly noticable to others - but for others the device doesn't have any "side effects." Again- it depends on the settings.
Also - scarring isn't an issue. I have photos of my incisions if anyone is interested in viewing them. Let me know and I'll post a link.
Jerry
Posted by Greenhornet on February 18, 2005, at 9:01:12
In reply to Re: Its over for me. New psychiatrist is hopeless, posted by linkadge on February 16, 2005, at 22:50:35
I am praying for you --dont quit five minutes before the miracle -- And while this is not much help, you have something called MANAGED CARE To thank for much of this situation
Posted by ed_uk on February 18, 2005, at 11:36:51
In reply to Re: Its over for me. New psychiatrist is hopeless, posted by Greenhornet on February 18, 2005, at 9:01:12
Link,
How are you?
Have you tried all the things that have helped you before?
a night of sleep deprivation, coffee and inositol, your TMS etc.
Ed.
Posted by linkadge on February 18, 2005, at 15:19:10
In reply to Re: Its over for me. New psychiatrist is hopeless, posted by ed_uk on February 18, 2005, at 11:36:51
Oh goodness, I'll have to go to plan B.
I know the SSRi's help some aspects of the depression, but they do make me more suicidal.
The akathesia is horrable. I think I have some sort of dopamine problem. Either to begin with or as a result of SSRI use.
Linkadge
Posted by linkadge on February 18, 2005, at 15:22:32
In reply to Re: Its over for me. New psychiatrist is hopeless, posted by ed_uk on February 18, 2005, at 11:36:51
I would liket to try a VNS implant, but the chances of a doctor allowing this are slim to none.
I know for a fact that they won't let me try anything interesting untill I have tried SSRI's at "corkscrew receptor" type doses.
I've been told that I don't know prozac until I've taken 120mg.
Believe me, I know prozac quite well at 20mg thank you very much.
Linkadge
Posted by ed_uk on February 18, 2005, at 15:29:41
In reply to Re: Its over for me. New psychiatrist is hopeless, posted by linkadge on February 18, 2005, at 15:19:10
Link,
What is plan B? Perhaps you should go to the hospital, at least you would be able to try new treatments if you were in hospital.
Ed.
Posted by KaraS on February 18, 2005, at 16:05:58
In reply to Re: New psychiatrist is hopeless (Try VNS) » KaraS, posted by jerrympls on February 18, 2005, at 2:37:59
> > > > I'm not certain where you live (Canada?), but I recollect you built your own TMS device so you'd likely consider this idea.
> > > >
> > > > I know that Vagus Nerve Stimulation was recently approved for those who have treatment resistant depression. Cyberonic estimates the availability of the device by May 2005. If I didn't know otherwise, you are good candidate, agreed?
> > > >
> > > > Surive and then live.
> > >
> > > YES - Try for VNS. I was in the d-2 study. It didn't work for me - but I think that was because they were constantly fooling with the settings to find the therapeutic range. I know of many others who were in the study here and VNS changed their lives - and it just might change yours for the better. Hopefully insurance will pay. Goto http://www.cyberonics.com to check it out. Email me or babblemail me for more info. I thought VNS was my last choice - but even tho it didn't work FOR ME - it opened new doors - I got to see top notch psychiattrists.
> > >
> > > Jerry
> > >
> >
> > Jerry,
> > How major is the surgery involved?
> >
> > Kara
>
> The surgery wasn't so bad. It lasts about an hour. They implant the pocket watch sized implant under your skin right beneath your left collar bone and then tunnel the lead wire up under your skin along the left side of your neck. The other incision is about 2 inches long - usually in a crease on the left side of your neck - they open that up to get at the vegal nerve and connect the lead. I had mine done in the morning and was released in the late afternoon. There was pain of course - stiffness and soreness around the incisions sites. I was able to go back to work in under a week. You don't feel the implant at all because it's so light and small. If it doesn't work out or complications arise from the surgery - it is completely reversable. Some people with asthma have exasterbation of their symptoms when the device goes off (usually set every 5 mins for 30 seconds). Also, depending on the settings of the device, it can effect your voice because the vegal nerve is so close to the vocal chords. At one high setting they had me at, I sounded like I was talking into a fan - like a robot - when the device went off. Other times at different settings my voice would go a bit hoarse. It's hardly noticable to others - but for others the device doesn't have any "side effects." Again- it depends on the settings.
>
> Also - scarring isn't an issue. I have photos of my incisions if anyone is interested in viewing them. Let me know and I'll post a link.
>
> Jerry
Jerry,
Do you feel that you didn't really give it an adequate trial since they weren't sure of what your settings should be? Would you check it out further in the future? Also, you said you did know others in the same study who were helped immensely? It probably costs close to $30k to try this, doesn't it? I think the cost would be prohibitive to most people.k
Posted by KaraS on February 18, 2005, at 16:12:14
In reply to Re: Its over for me. New psychiatrist is hopeless, posted by linkadge on February 18, 2005, at 15:22:32
Linkadge,
What about CES? There is an interesting thread about this on the board now and you can get your own devices which start as low as $295?
Also, is there any way you could come to the U.S. for treatment? There was a recent post from someone who had a lot of success at Mass General Hospital in Boston - in their treatment resistant depression department.
K
Posted by TamaraJ on February 18, 2005, at 16:27:01
In reply to Re: Its over for me. New psychiatrist is hopeless » linkadge, posted by KaraS on February 18, 2005, at 16:12:14
I had found this website (http://www.psycom.net/depression.central.resistant.html) on treatment resistant depression some time ago, which includes the following listing of psychiatrists experienced in treating individuals with resistant depression (http://www.psycom.net/depression.central.psychiatrists.html).
I have often wondered if a Canadian pdoc would be willing to consult with a U.S. counterpart with specific experience in resistant depression. Or even if a Canadian patient could contact a U.S. pdoc for a phone consultation? I guess never hurts to think about it or give it a try.
Tamara
Posted by KaraS on February 18, 2005, at 18:52:38
In reply to Re: Its over for me. New psychiatrist is hopeless » KaraS, posted by TamaraJ on February 18, 2005, at 16:27:01
> I had found this website (http://www.psycom.net/depression.central.resistant.html) on treatment resistant depression some time ago, which includes the following listing of psychiatrists experienced in treating individuals with resistant depression (http://www.psycom.net/depression.central.psychiatrists.html).
>
> I have often wondered if a Canadian pdoc would be willing to consult with a U.S. counterpart with specific experience in resistant depression. Or even if a Canadian patient could contact a U.S. pdoc for a phone consultation? I guess never hurts to think about it or give it a try.
>
> TamaraHi,
Yes, I've seen Dr. Goldberg's list. Dr. Bob has some info from him in the "tips" section of this website. I've contemplated contacting one of those doctors if I ever got health insurance. One of them isn't far from where I'm living right now.For Linkadge, the problem with getting a Canadian doctor to contact one of these specialists is that the Canadian doctor would have to think that he or she knows less than another doctor in his/her field. Their egos are usually so large that I can't imagine that happening. I suppose it's worth a try but it may also anger the doctor to have it even suggested to them that they might need another doctor's help.
The phone consultation idea is interesting but how would the doctor then be able to prescribe for a Canadian patient?
K
Posted by TamaraJ on February 18, 2005, at 19:01:17
In reply to Re: Its over for me. New psychiatrist is hopeless » TamaraJ, posted by KaraS on February 18, 2005, at 18:52:38
Ya, the ego thing might be a problem. I guess it would depend on how the subject was broached with the pdoc. If phone consultation was pursued, I guess the person could ask for a faxed copy of the recommendations to take to a new pdoc or even a family doctor. But, who knows. It would be nice for find a similar list compiled for Canadian pdocs. There is a very well-respected mental health hospital in the city where I live in Canada. Maybe I'll call to see if such a list exists, just for my own information.
Tamara
Posted by KaraS on February 18, 2005, at 19:12:11
In reply to Re: Its over for me. New psychiatrist is hopeless » KaraS, posted by TamaraJ on February 18, 2005, at 19:01:17
> Ya, the ego thing might be a problem. I guess it would depend on how the subject was broached with the pdoc. If phone consultation was pursued, I guess the person could ask for a faxed copy of the recommendations to take to a new pdoc or even a family doctor. But, who knows. It would be nice for find a similar list compiled for Canadian pdocs. There is a very well-respected mental health hospital in the city where I live in Canada. Maybe I'll call to see if such a list exists, just for my own information.
>
> Tamara
The faxed copy of recommendations might work - if it's tactfully brought up and shown to the Canadian doctor. (It's too bad we have to worry about dealing with the huge egos of these doctors!) But someone would have to spearhead any action for Linkadge now because he doesn't appear to be up to it.Maybe you could e-mail Dr. Goldberg to request that he add doctors outside of the U.S. to his list.
K
Posted by TamaraJ on February 18, 2005, at 19:19:51
In reply to Re: Its over for me. New psychiatrist is hopeless » TamaraJ, posted by KaraS on February 18, 2005, at 19:12:11
I'll do that and I will also call the hospital I mentioned. I got the impression from Linkadge's posts that he will, and feels he should, give this new pdoc a chance before pursuing other options (sorry Link, I don't mean to speak for you). If he ever needs help, though, I will certainly do whatever I can.
Oh the joys of health care in Canada!
Posted by KaraS on February 18, 2005, at 21:18:31
In reply to Re: Its over for me. New psychiatrist is hopeless » KaraS, posted by TamaraJ on February 18, 2005, at 19:19:51
> I'll do that and I will also call the hospital I mentioned. I got the impression from Linkadge's posts that he will, and feels he should, give this new pdoc a chance before pursuing other options (sorry Link, I don't mean to speak for you). If he ever needs help, though, I will certainly do whatever I can.
>
> Oh the joys of health care in Canada!
Health care is worse here if you don't have money!Linkadge is lucky to have you helping him out.
k
Posted by linkadge on February 18, 2005, at 21:19:13
In reply to Re: Its over for me. New psychiatrist is hopeless » KaraS, posted by TamaraJ on February 18, 2005, at 19:19:51
Yes I am going to return to this doctor to at least see what he decides might be wrong.
Doctors are big fans of Paxil and zyprexa around here. Waterloo, Ontario is paxil and zyprexa town. In all likelyhood I will be titrated up to 80mg of paxil over the course of 6 months.
After this, any complaint will be responded to with "You know, it takes time to work!"After 6 months of this, the doctor might say, "have you tried zyprexa?" And when I say yes he will ask how much. I will say 2.5 mg. He will say thats nothing, and prescribe me 10mg of zyprexa to take with my 80mg of paxil.
After this, when I say I'm a zombie, he will ask. When are you taking your medications? I will say the paxil in the morning, and the zyprexa in the evening. He will tell me to take the paxil in the evening and see how that goes for a month.
I will come back a month later, and will tell me that maybe we should try prozac instead.
Does anyone understand the wall I'm up against?? Does anyone know the type of doctor which I am talking about? The type of doctor that thinks the reason the paxil didn't work in the past was because "they" weren't the one that prescribed it.Linkadge
Posted by Phillipa on February 18, 2005, at 21:36:55
In reply to Re: Its over for me. New psychiatrist is hopeless, posted by linkadge on February 18, 2005, at 21:19:13
Yes, I've had a few. My heart goes out to you Link. Fondly, Phillipa
Posted by TamaraJ on February 18, 2005, at 21:38:11
In reply to Re: Its over for me. New psychiatrist is hopeless, posted by linkadge on February 18, 2005, at 21:19:13
Linkadge,
I know what you are up against and the frustrations of what one can only describe as overly conservative, uncreative and anal doctors in Canada. The pdoc I see has switched me from one AD - one at a time - to another, and has, until recently, refused to even consider an augmenter. I have trialed 5 ADs in a year. I finally got assertive (and, I have to admit, had as much of a fit as I am capable of) and he relented grudgingly and prescribed Provigil to augment my current AD. I struggled with suicidal thoughts and urges for months, but I worked so hard to keep this to myself because I was so afraid I would be hospitalized. That's not to say that my pdoc did know I was severely depressed. I just wanted everything to be ok. But, it was like talking to a brick wall sometimes (you know, the usual, let's talk about your father, let's talk about your mother, let' talk about why you internalize everything including your anger. Sure, when I am thinking more clearly, we'll do just that. Get with the program doc!).
Please take care of yourself. Please know there are people who care. My thoughts are with you.
Tamara
Posted by Ritch on February 18, 2005, at 21:56:36
In reply to Re: Its over for me. New psychiatrist is hopeless, posted by linkadge on February 18, 2005, at 21:19:13
> Yes I am going to return to this doctor to at least see what he decides might be wrong.
>
> Doctors are big fans of Paxil and zyprexa around here. Waterloo, Ontario is paxil and zyprexa town. In all likelyhood I will be titrated up to 80mg of paxil over the course of 6 months.
>
>
> After this, any complaint will be responded to with "You know, it takes time to work!"
>
> After 6 months of this, the doctor might say, "have you tried zyprexa?" And when I say yes he will ask how much. I will say 2.5 mg. He will say thats nothing, and prescribe me 10mg of zyprexa to take with my 80mg of paxil.
>
> After this, when I say I'm a zombie, he will ask. When are you taking your medications? I will say the paxil in the morning, and the zyprexa in the evening. He will tell me to take the paxil in the evening and see how that goes for a month.
>
> I will come back a month later, and will tell me that maybe we should try prozac instead.
>
>
> Does anyone understand the wall I'm up against?? Does anyone know the type of doctor which I am talking about? The type of doctor that thinks the reason the paxil didn't work in the past was because "they" weren't the one that prescribed it.
>
>
>
> LinkadgeMaybe you are going to have to tell them what's *off the table* for use. Just tell them that there is NO WAY you are going to take an SSRI or an antipsychotic. You WILL BE NONCOMPLIANT. I have had to tell at least two pdocs that I WILL NOT TAKE ANY ANTIPSYCHOTIC - DO MORE HOMEWORK PLEASE. If you can communicate to them what you will NOT do, then they have to come up with something else. I *did* see a pdoc once that told me NOT to revisit meds that don't work (make you a zombie or feel worse), and wished I would have stuck with that one.
Posted by Maxime on February 18, 2005, at 21:57:39
In reply to Re: Its over for me. New psychiatrist is hopeless, posted by linkadge on February 18, 2005, at 21:19:13
It's the type of PDOC who will prescribe anything different because he does not feel safe doing so because he doesn't use other meds. He hasn't seen depressions like yours.
BTW there was an article in the Montreal Gazette about how SSRI can make you suicidal (I know this isn't a new theory). UK journal will be releasing the results of a ten year study.
Maybe if you make a log of everything you have taken and your response to the cocktail he will listen to you or refer to someone who knows how to treat you.
I wish I could help you.
Maxime
Posted by TamaraJ on February 18, 2005, at 22:05:40
In reply to Re: Its over for me. New psychiatrist is hopeless » TamaraJ, posted by KaraS on February 18, 2005, at 21:18:31
> Health care is worse here if you don't have money!
-- I have heard. I can only begin to imagine how stressful that must be. We complain about our health care system here (the biggest problems being the waiting times and shortage of doctors), but I think we are still fortunate to have a public health care system that is accessible to all regardless of their tax bracket.
> Linkadge is lucky to have you helping him out. >
-- I haven't done anything. I have just let him know if he needs or wants any help, I will do what I can.Take care Kara.
P.S. Any decision on a new AD?
Posted by TamaraJ on February 18, 2005, at 22:16:02
In reply to Re: Its over for me. New psychiatrist is hopeless » linkadge, posted by Ritch on February 18, 2005, at 21:56:36
> Maybe you are going to have to tell them what's *off the table* for use. Just tell them that there is NO WAY you are going to take an SSRI or an antipsychotic. You WILL BE NONCOMPLIANT. I have had to tell at least two pdocs that I WILL NOT TAKE ANY ANTIPSYCHOTIC - DO MORE HOMEWORK PLEASE. If you can communicate to them what you will NOT do, then they have to come up with something else. I *did* see a pdoc once that told me NOT to revisit meds that don't work (make you a zombie or feel worse), and wished I would have stuck with that one.
-- That's good advice. And, don't let the pdoc patronize you because you are young. You know what does not work for you based on past experience. And, you have done a lot of research and have become quite knowledgeable about psychotropic meds.
Tamara
Posted by KaraS on February 18, 2005, at 22:21:15
In reply to Re: Its over for me. New psychiatrist is hopeless » KaraS, posted by TamaraJ on February 18, 2005, at 22:05:40
> > Health care is worse here if you don't have money!
>
> -- I have heard. I can only begin to imagine how stressful that must be. We complain about our health care system here (the biggest problems being the waiting times and shortage of doctors), but I think we are still fortunate to have a public health care system that is accessible to all regardless of their tax bracket.The flipside is that if you have the money, you can get some great care here - assuming you are very proactive and seek out the best.
> > Linkadge is lucky to have you helping him out. >
> -- I haven't done anything. I have just let him know if he needs or wants any help, I will do what I can.
>
> Take care Kara.
>
> P.S. Any decision on a new AD?
>Nothing definite yet. I'll keep you posted in another thread.
k
Posted by KaraS on February 18, 2005, at 22:25:45
In reply to Re: Its over for me. New psychiatrist is hopeless, posted by linkadge on February 18, 2005, at 21:19:13
> Yes I am going to return to this doctor to at least see what he decides might be wrong.
>
> Doctors are big fans of Paxil and zyprexa around here. Waterloo, Ontario is paxil and zyprexa town. In all likelyhood I will be titrated up to 80mg of paxil over the course of 6 months.
>
>
> After this, any complaint will be responded to with "You know, it takes time to work!"
>
> After 6 months of this, the doctor might say, "have you tried zyprexa?" And when I say yes he will ask how much. I will say 2.5 mg. He will say thats nothing, and prescribe me 10mg of zyprexa to take with my 80mg of paxil.
>
> After this, when I say I'm a zombie, he will ask. When are you taking your medications? I will say the paxil in the morning, and the zyprexa in the evening. He will tell me to take the paxil in the evening and see how that goes for a month.
>
> I will come back a month later, and will tell me that maybe we should try prozac instead.
>
>
> Does anyone understand the wall I'm up against?? Does anyone know the type of doctor which I am talking about? The type of doctor that thinks the reason the paxil didn't work in the past was because "they" weren't the one that prescribed it.
>
>
>
> Linkadge
>Maybe you should print out this post of yours and show it to your doctor if he starts down this path. I can't think of a better way to express your frustration and to let him know that you're tired of retrying the same things that haven't worked in the past. It would save you a lot of trouble and frustration in trying to explain things to him.
k
Posted by up'n'down on February 19, 2005, at 2:39:23
In reply to Re: Its over for me. New psychiatrist is hopeless, posted by linkadge on February 16, 2005, at 22:50:35
> I understand that it can take time. I know they need to gather information, but I feel so helpless when they ask so few important questions.
>
> They don't seem to understand the suffering.
>
> If a person is in a car accident, and they are writhing in phsical pain, the first thing the doctors do is give them morphine no questions asked. They don't sit there for days, weeks, months, years and ask them questions like. Hmm "how long before you noticed the car was going off the road" or what do you think was the main cause of the accident".
>
> They don't do that because they can see the pain that the person is in. They know that every second of that pain is pure hell.
>
> I'm in the same pain. It doesn't end. I just can't sit around while they ask me questions and don't even offer the slightest glimmer of hope.
>
> Pain and waiting just don't mix.
>
> Thanks for your help Tamera, but I can't put you through that. I've got to wait longer. Wait to see this guy again. No doctor will see me if I don't give this one a fair chance.
>
> I'm just so depressed. I can't understand why God even permitted this kind of experience. I don't think I could ever have restored faith after all of this.
>
> Its a nightmare. Nothing else can explain it. The pain I have is unbelievable.
>
> Sometimes I think I am in hell already. I just don't know why there isn't somebody who wanted to see me better. Somebody who said to me "I am not going to leave you untill you feel better". God hasn't been that person. He has left me. That is why people kill themselves, because dispite their pain their creator does nothing.
>
> This is terrable. I've never felt so much pain. I cry so hard. But it doesn't help. Its the futility I feel. Why can't god be more merciful?
> Why is it every man for himself in this cruel world? Why must hope be so fleeting. Why was I born? Why can't I just die?
>
I heard on National Public News that we are now outsourcing medical care-people are choosing to go to places like Thailand to state-of-the-art hospitals with U.S. trained drs. and it costs a fraction of what it would over here. So far, the emphasis is on surgeries, but maybe we better check out mental health care in foreign lands.
Trouble is, I can't afford to travel. Also, I am very pleased with my highly trained and nice pdoc.
I have had some unpleasant experiences, however, with some very tunnel-visioned physicians.
Keep hanging on, and things will get better. U'D
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