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Dr. Bob is Robert Hsiung, MD,
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Posted by linkadge on July 2, 2005, at 18:39:03
In reply to Re: Trileptal is pooping-out on me., posted by 4WD on July 1, 2005, at 21:23:34
The fact is, that nothing gets done. I can barely start the sentence "I wonder if we could try a combination I've been thinking of...." before the subject is changed to how I should be spending more time with friends.
The doctor *repeately* tries to reinstate the notion, that *he* is in controll, and *he* makes the decisions.
Linkadge
Posted by 4WD on July 2, 2005, at 21:56:04
In reply to Re: Trileptal is pooping-out on me., posted by linkadge on July 2, 2005, at 18:39:03
> The fact is, that nothing gets done. I can barely start the sentence "I wonder if we could try a combination I've been thinking of...." before the subject is changed to how I should be spending more time with friends.
>
> The doctor *repeately* tries to reinstate the notion, that *he* is in controll, and *he* makes the decisions.
>
>
> LinkadgeAll the more reason to switch. He's so caught up in his ego he's not going to cede any power to you. God forbid that your ideas work out where his haven't.
That said, I wonder what would happen if instead of saying "I wonder if we could try..." you said: "I want to do a trial of xxx. I believe that will work for me." Then he says "you should spend more time with friends." Then you say, "yes, that's a very good idea but I also want to try a trial of xxx." Don't approach him as a supplicant. Go in and tell him what you want. You are paying him! He is working for you.
Of course, you still may not get anywhere if he's as big an ahole as some I've met. But sometimes bullies (and that's what he sounds like) respond differently if you approach them from a position of strength. I know that's hard to do when you feel like your life is in his hands. And there's the tendence to approach it sideways instead of directly because you figure that asking directly for what you want will result in outright denial. But asking sideways isn't getting you anywhere so what have you got to lose?
Marsha
Posted by linkadge on July 3, 2005, at 2:44:54
In reply to Re: Trileptal is pooping-out on me., posted by 4WD on July 2, 2005, at 21:56:04
Thats the thing, I am not paying him, the Govt is here in canada.
If I said, "I am leaving because you won't give me what I want" then he'd say "goodbye"
I tried that approach once with a similar doctor, and he said "in my line of buisness, it is not coustomary for a patient to tell a doctor the name of the sickness"
I know, I know, I am not trying to drag myself down. I'm really just trying to play my cards right, and find the best thing to say.
Another thing is that, I think it got writtain in my chart that I "asked for a certain drug"
That chart gets passed from doctor to doctor. They know, I know my meds. To them, that is all the reason to make it clear to me from the "get go" that they are incharge.
I just wish I could start with a clean slate.
Linkadge
Posted by KayeBaby on July 4, 2005, at 3:06:14
In reply to Re: Trileptal is pooping-out on me., posted by linkadge on July 3, 2005, at 2:44:54
>
> I just wish I could start with a clean slate.
>
>
>
> LinkadgeAnd i thought it was bad here in the US! I had to keep trying which was traumatic emotionally (bad enough!) but at least I could go to a different Dr. once I mustered up the courage.
God! Can you change your name or borrow one from a friend? No possibility of moving or visiting a friend across the border every few months? I am sure you have thought of every possible way already.
I took matters in to my own hands when I could not get anyone to listen to me and went to Mexico-not recommended but it made me feel like I had the ability to help myself if I needed to and not feel so desperate.
I now have a great Dr. but it was not easy and took till I was 36 to find him. I am still not where I would like to be but I am sooooo much better. Alot of it is the peace of knowing that there is someone who will help me if they can.I don't know what sort of limitations you are working with (financial etc.) but your life is very valuable and your suffering needless. It would be worth the world for you to simply get to a decent Dr.
I feel for you and your situation just pisses me off!
There has got to be a way for you to get proper care!
Kaye
Posted by linkadge on July 4, 2005, at 18:26:12
In reply to Re: Trileptal is pooping-out on me., posted by KayeBaby on July 4, 2005, at 3:06:14
I hate to steal your thread SLS !
But yes, money is a big factor. I need to save for school. I am just trying to get ideas here, I guess.
Linkadge
Posted by 4WD on July 5, 2005, at 22:19:56
In reply to Re: Trileptal is pooping-out on me., posted by linkadge on July 3, 2005, at 2:44:54
> Thats the thing, I am not paying him, the Govt is here in canada.
>
> If I said, "I am leaving because you won't give me what I want" then he'd say "goodbye"
>
> I tried that approach once with a similar doctor, and he said "in my line of buisness, it is not coustomary for a patient to tell a doctor the name of the sickness"
>
> I know, I know, I am not trying to drag myself down. I'm really just trying to play my cards right, and find the best thing to say.
>
> Another thing is that, I think it got writtain in my chart that I "asked for a certain drug"
>
> That chart gets passed from doctor to doctor. They know, I know my meds. To them, that is all the reason to make it clear to me from the "get go" that they are incharge.
>
> I just wish I could start with a clean slate.
>
>
>
> Linkadge
My God, how I hate bureaucracy and sanctimonious S O Bs.Sorry, Linkadge
Marsha
Posted by Phillipa on July 5, 2005, at 22:53:10
In reply to Re: Trileptal is pooping-out on me. » linkadge, posted by SLS on July 1, 2005, at 9:00:53
Scott, ls the trileptal working at 900mg? Fondly, Phillipa
Posted by SLS on July 6, 2005, at 5:47:11
In reply to Re: Trileptal is pooping-out on me., posted by Phillipa on July 5, 2005, at 22:53:10
> Scott, ls the trileptal working at 900mg? Fondly, Phillipa
I really can't tell anymore. I think there is some residual improvement, but it is subtle at best. I see the doctor tomorrow. I'm not as optimistic about things as I was last week.
- Scott
Posted by Phillipa on July 6, 2005, at 18:58:42
In reply to Re: Trileptal is pooping-out on me. » Phillipa, posted by SLS on July 6, 2005, at 5:47:11
Scott, I'm really praying for you that this works. You are a magnificent person with so much to offer others. You're always there with your knowledge to help others when you feel awful yourself. I hope the doc appointment goes well. please let me know. Either here or by Babblemail. Fondly, Phillipa
Posted by SLS on July 8, 2005, at 23:52:11
In reply to Re: Trileptal is pooping-out on me. » SLS, posted by Phillipa on July 6, 2005, at 18:58:42
OK.
Here we go.
Going from 900mg to 1200mg.
I am not optimistic, but what the heck!
- Scott
Posted by Phillipa on July 9, 2005, at 0:17:41
In reply to Re: Trileptal is pooping-out on me., posted by SLS on July 8, 2005, at 23:52:11
Just keep posting. That way we'll know you're still trying and not lying in bed or in some hospital. love you Scott! Fondly, Phillipa
Posted by ed_uk on July 9, 2005, at 7:17:48
In reply to Re: Trileptal is pooping-out on me., posted by SLS on July 8, 2005, at 23:52:11
I hope it helps :-)
~Ed
Posted by SLS on July 9, 2005, at 7:51:03
In reply to Re: Trileptal is pooping-out on me. » SLS, posted by ed_uk on July 9, 2005, at 7:17:48
> I hope it helps :-)
>
> ~Ed
There is just no way.I'll try it anyway.
Damn. I was so sure that I was on my way there for awhile. Life was worth living.
I guess mifepristone is the next stop on this train. I just hope the FDA grants me full approval to take it. There was one last hoop they wanted us to jump through. I just hope that my doctor is eligible under this last requirement.
- Scott
Posted by ed_uk on July 9, 2005, at 8:16:38
In reply to Re: Trileptal is pooping-out on me., posted by SLS on July 9, 2005, at 7:51:03
Hi Scott,
>There is just no way.
Well.....you're still on a low dose. Plenty of room for increases.
>I guess mifepristone is the next stop on this train.
Any idea when you might be able to start taking it?
~Ed
Posted by SLS on July 11, 2005, at 6:50:37
In reply to Re: Trileptal is pooping-out on me. » SLS, posted by ed_uk on July 9, 2005, at 8:16:38
Hi Ed.
> > There is just no way.
> Well.....you're still on a low dose. Plenty of room for increases.I raised the dosage a few days ago from 900mg to 1200mg. I can tell already that there won't be any remission with this drug. All I ask for is 50% to go back to work. It won't happen. I am fortunate that I am currently getting 15% from the other drugs I am taking. However, I have been sad and demoralized that this stuff won't work.
> > I guess mifepristone is the next stop on this train.
> Any idea when you might be able to start taking it?Not entirely sure. The FDA is asking that my doctor have an institutional review board (IRB). The agent responsible for dispensation of the drug tells me that many of the cases she has handled have not required this. Otherwise, all the paperwork is done. It would be about a month before I could actually be swallowing pills.
- Scctt
Posted by ed_uk on July 11, 2005, at 13:04:06
In reply to Re: Trileptal is pooping-out on me., posted by SLS on July 11, 2005, at 6:50:37
Hi Scott,
>It would be about a month before I could actually be swallowing pills.
I believe you were thinking of trying Keppra.... might you try Keppra in the mean time?
~Ed
Posted by Phillipa on July 11, 2005, at 18:38:32
In reply to Re: Trileptal is pooping-out on me. » SLS, posted by ed_uk on July 11, 2005, at 13:04:06
Ohhhh Scott. I am truly sorry, really I am. I wish I could pass a magic wand over your head and it would all go away. I guess I'm starting to sound like I believe in magic what with the magic pill Thread but I don't. I know how hard your're working at getting better. Please don't give up I know you won't. Fondly, Phillipa
Posted by SLS on July 11, 2005, at 20:26:56
In reply to Re: Trileptal is pooping-out on me. » SLS, posted by ed_uk on July 11, 2005, at 13:04:06
Hi Ed.
> > It would be about a month before I could actually be swallowing pills.
> I believe you were thinking of trying Keppra.... might you try Keppra in the mean time?Quite rightly, my doctor would like to see me reach a stable baseline to be able to interpret the results of a mifepristone trial and give it the best chance of working. He is not too enamored of Keppra. He has seen it make people feel worse instead of better. If mifepristone were not to produce a robust improvement, I suppose Keppra would be next. He is not averse to trying it, just not now.
- Scott
Posted by 4WD on July 11, 2005, at 22:12:40
In reply to Re: Trileptal is pooping-out on me., posted by SLS on July 11, 2005, at 6:50:37
> Hi Ed.
>
> > > There is just no way.
>
> > Well.....you're still on a low dose. Plenty of room for increases.
>
> I raised the dosage a few days ago from 900mg to 1200mg. I can tell already that there won't be any remission with this drug. All I ask for is 50% to go back to work. It won't happen. I am fortunate that I am currently getting 15% from the other drugs I am taking. However, I have been sad and demoralized that this stuff won't work.
>
> > > I guess mifepristone is the next stop on this train.
>
> > Any idea when you might be able to start taking it?
>
> Not entirely sure. The FDA is asking that my doctor have an institutional review board (IRB). The agent responsible for dispensation of the drug tells me that many of the cases she has handled have not required this. Otherwise, all the paperwork is done. It would be about a month before I could actually be swallowing pills.
>
> - Scctt
>Scott, I am so sorry. I will redirect my praying to the mifepristone trial.
Have you ever had a period of being off all meds? I know you've said your depression isn't the deep sad kind, more of a constant dysthymia and psychomotor and cognitive slowing. What if you stopped everything (except maybe a mood stabilizer) for a few weeks and then restarted a trial of Parnate and desipramine? Might it work again after a break? Or retry Nardil after a break? Or even try Symbyax? What did Zyprexa do for you? Anything?
Marsha
Posted by SLS on July 12, 2005, at 10:11:11
In reply to Re: Trileptal is pooping-out on me. » SLS, posted by 4WD on July 11, 2005, at 22:12:40
Hi Marsha.
> Scott, I am so sorry. I will redirect my praying to the mifepristone trial.
Thank you.
> Have you ever had a period of being off all meds?
Not in a very long time.
> I know you've said your depression isn't the deep sad kind, more of a constant dysthymia and psychomotor and cognitive slowing.
It is really more of a severe depression than a moderate dysthymia. Loss of interest and motivation, loss of mental and physical energy, impaired memory, cognitive slowing, psychomotor retardation and anhedonia predominate. There is very little dysphoria, melancholy, sadness, or depressed mood.
> What if you stopped everything (except maybe a mood stabilizer) for a few weeks and then restarted a trial of Parnate and desipramine?
I think I would need more than just a few weeks off of medication to bring about a renewed responsivity.
> Might it work again after a break? Or retry Nardil after a break?
I'll tell you what - I think I'm going to think more seriously about doing this. Perhaps if I can tickle the brain often enough in a relatively short period of time, I would gain some responsivity. I will probably wait until I get through the mifepristone trial and perhaps Keppra.
> Or even try Symbyax? What did Zyprexa do for you? Anything?
Here's another one: The addition of Zyprexa to Parnate yielded an improvement that lasted for about a week. In fact, I was almost hypomanic there for awhile. The response plateaued and then faded by the end of the second week.
Thanks, Marsha. I appreciate the time and energy you spend thinking about my case. I find your ideas worth pursuing.
- Scott
Posted by ed_uk on July 12, 2005, at 12:53:09
In reply to Re: Trileptal is pooping-out on me. » ed_uk, posted by SLS on July 11, 2005, at 20:26:56
Hi Scott,
>He is not too enamored of Keppra.
Which other meds are on your list (of things to try)?
~Ed
Posted by Ron Hill on July 12, 2005, at 12:55:00
In reply to Re: Trileptal is pooping-out on me., posted by SLS on July 11, 2005, at 6:50:37
> I raised the dosage a few days ago from 900mg to 1200mg. I can tell already that there won't be any remission with this drug. All I ask for is 50% to go back to work. It won't happen. I am fortunate that I am currently getting 15% from the other drugs I am taking. However, I have been sad and demoralized that this stuff won't work.
> - Scctt
I'm sorry Scott. Don't give up. I know it's hard. Through it all, remember Winston Churchill's admonition; never give up, never give up, ... , never give up!I love ya friend.
-- Ron
Posted by SLS on July 12, 2005, at 16:16:03
In reply to Re: Trileptal is pooping-out on me. » SLS, posted by Ron Hill on July 12, 2005, at 12:55:00
> > I raised the dosage a few days ago from 900mg to 1200mg. I can tell already that there won't be any remission with this drug. All I ask for is 50% to go back to work. It won't happen. I am fortunate that I am currently getting 15% from the other drugs I am taking. However, I have been sad and demoralized that this stuff won't work.
> I'm sorry Scott. Don't give up. I know it's hard. Through it all, remember Winston Churchill's admonition; never give up, never give up, ... , never give up!
Ron, I can't tell you how angry I am right now. Frustrated and angry. I feel like punching things. Good thing my coordination is affected by something (probably Lamictal). I went to punch a picnic table yesterday, but missed. It was an impulse. I thought Trileptal was supposed to reduce anger and afford better impulse control. I guess I'm really, really p*ssed. At least my right hand remains intact for doing other things.
- Scott
Posted by SLS on July 12, 2005, at 16:29:30
In reply to Re: Trileptal is pooping-out on me. » SLS, posted by ed_uk on July 12, 2005, at 12:53:09
Hi Ed.
> Which other meds are on your list (of things to try)?
I need to update my list. It doesn't contain some of the new contenders that are in Phase III that Shawn T. has generously provided us with.
Right now, I am too upset to bother picking from my list the ones that I would want to try next. I would like to try sibutramine, but I wouldn't be able to get it through insurance if at all. You have to be eligible to use it according to body mass index (BMI) and be followed every eight weeks or so. There's a doctor in Princeton, NJ who likes to use it. He must know how to work around the system.
Since creating the list, I have used up a great percentage of items it contains. To look at the list now is scary and depressing.
What do you think of using Lyrica as a mood-stabilizer or antideprssant augmentor?
- Scott
Posted by ed_uk on July 12, 2005, at 17:53:55
In reply to Re: Trileptal is pooping-out on me. » ed_uk, posted by SLS on July 12, 2005, at 16:29:30
Hi Scott,
>What do you think of using Lyrica as a mood-stabilizer or antideprssant augmentor?
I suppose that depends on how you responded to gabapentin. I think you said it made you feel better for a few days and then worse.......or perhaps that was someone else?
>To look at the list now is scary and depressing.
I'm sure we can make some thoughtful additions. A long list is comforting :-)
Kind regards
~Ed
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