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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 13 to 37 of 52. Go back in thread:
Posted by linkadge on June 29, 2005, at 20:19:12
In reply to Re: Trileptal is pooping-out on me., posted by SLS on June 29, 2005, at 7:00:39
It seems to me that you're getting a lot on the catecholamine side of the ballpark, with the parnate and the nortryptaline. Doesn't seem like you are getting enough on the serotonin side. Too much dopamine and not enought serotonin leaves you blue.
Can you think of any tweeking that would give you more serotogenic neuotransmission ??
Have you tried Nardil ?
Maybe simplification would yield results.
Have you tried the Nardil / Depakote combination ?
I have a **million** other cool ideas, if you want some for your next doctors apointment. I have no power to get a doctor who will listen to my ideas. But I cannot horde them for myself forever. I don't know what kind of efficacy they would have in your predicament, and/or which ones you may have already tried.
Linkadge
Posted by Phillipa on June 29, 2005, at 22:00:23
In reply to Re: Trileptal is pooping-out on me., posted by linkadge on June 29, 2005, at 20:19:12
Scott what can I say. I don't have the knowledge you do. I just want it to work for you. I really do. You're still a hunk! Fondly, Phillipa
Posted by 4WD on June 29, 2005, at 22:09:56
In reply to Trileptal is pooping-out on me., posted by SLS on June 29, 2005, at 6:18:26
> This is no fun.
>
> I know it is still early. I have been at 900mg for less than two weeks, but the pattern is all too familiar. Things have definitely plateaued, and I feel that I have lost ground this past week.
>
> If I were to increase the dosage to 1200mg, I would anticipate that the same thing would happen. I'm not a pessimist, but my experiences in the past indicate that a pattern seems to have developed, and that any improvement that Trileptal produces will quickly disappear.
>
> This is no fun.
>
>
> - ScottI am so sorry to hear it Scott. But when you up the dose maybe you again see an improvement. Maybe it' slike Lamictal where you lose the improvement until you get to the right dose?
Marsha
Posted by Mr.Scott on June 30, 2005, at 0:20:02
In reply to Trileptal is pooping-out on me., posted by SLS on June 29, 2005, at 6:18:26
Maybe not...Sometimes you just need to saturate the brain completely. Its a tremendously stubborn organ. What it thinks is homeostasis may be wrong, but it sure tries hard to get back there. I stopped developing tolerance to Adderall at 40mg...but was worried for a while I was just digging myself into a hole.
Maybe you are a fast metabolizer. Some docs have speculated I am a slow metabolizer, because if I was taking what you are I'm be a side-effect encyclopedia!
btw...Have you considered lithium in this particular cocktail, investigated ALL thyroid options, had a recent liver enzyme profile?
-The Other Scott
Posted by SLS on June 30, 2005, at 17:32:15
In reply to Re: Trileptal is pooping-out on me., posted by linkadge on June 29, 2005, at 20:19:12
> It seems to me that you're getting a lot on the catecholamine side of the ballpark, with the parnate and the nortryptaline. Doesn't seem like you are getting enough on the serotonin side. Too much dopamine and not enought serotonin leaves you blue.
I don't suffer from sadness or depressed mood. It is more of a loss of interest and motivation, anergia, anhedonia, psychomotor retardation, impairments in concentration and memory, and reduced libido. I eat too much, sleep too much, feel best in the morning - reverse vegetative symptoms. However, there is no mood-reactivity. Hypomania and mania have occurred only in association with antidepressant treatment.
> Can you think of any tweeking that would give you more serotogenic neuotransmission ??
>
> Have you tried Nardil ?Nardil produces more of a mood-brightening effect than does Parnate. However, it does poop-out.
> Maybe simplification would yield results.It has taken quite a bit of time to arrive at this combination. I think simplification will be the goal once remission is achieved. In the meantime, the only thing about the combination that creates problems is the use of an MAOI. It is possible that Effexor or Cymbalta could replace the Parnate eventually, but optimizing the Trileptal is the priority at this juncture.
> Have you tried the Nardil / Depakote combination ?No. However, the addition of Depakote to Parnate or clorgyline has not yielded adequate results. Funny, though. When I first start Depakote, I do experience a mild antidepressant effect. Thereafter, it tends to make me feel worse.
> I have a **million** other cool ideas,
It only takes one. :-)
I am very interested to hear your ideas. I have a great deal of respect for the scope and depth of your knowledge and understanding, as well as the intelligence with which you synthesize your own ideas. I would consider any input you would offer me as being very valuable.
I'll turn on my Babble-Mail if you would like to correspond directly.
If Trileptal doesn't work, mifepristone is the next stop for this train.
I only wish that you could more easily profit from your own ideas. I can't fully appreciate the frustration you must experience for not being able to have access to the drugs that you feel might work. I can only say that you have my best wishes for the attainment of health, regardless of where you find it.
Thanks.
- Scott
Posted by linkadge on June 30, 2005, at 23:28:50
In reply to Re: Trileptal is pooping-out on me. » linkadge, posted by SLS on June 30, 2005, at 17:32:15
You're like my mother indeed. Antidepressant induced mania. Most of Dr. Manji's work shows that certain family history of unremitting bipolar depression is associated with some pretty hefty shrinkage in the subgenual prefrontal cortex. Proper prefronal cortex activity is *key* to maintaining an anhedonia free life. Manji's work seemd to show that lithium/depakote (even when used it what seemd to be almost homeopathic doses) protected, and revered many prefrtal cortex shrinkage. Unfortunately carbamazapine had no effect. It is good on the temporal lobes, but not as neurotrophic/neurorestorative as lithium/depakote.
One idea of mine was to increase NGF, and BDNF content in the frontal cortex. Lithium & Depakote increased frontal cortex NGF and BDNF, unfortunately carbamazapine did not share this effect. Again, single injects of BDNF and NGF will grow new brain cells in this region.
Get vitamin D ! It increases NGF/NT-3 in the frontal cortex and hippocampus. Omega 3/vitamin D show some nice synergy in reviving frontal cortex activity.
Mifesteprone *may* help, but are cortisol issues a biggie for you right now? This drug seemed to help AD's work better when cortisol was an issue, but didn't seem to help in other circumstances.Nortryptaline seems like a good choice. Bipolars with prefronal issues seem to repsond well to Nortryptaline. I read a study that shows that it does have a nice frontal cortex catecholamine effect. (probably aided by its 2a blockade)
>Nardil produces more of a mood-brightening >effect than does Parnate. However, it does poop-out.
> I have a **million** other cool ideas,
For my last doctors visit, I was really trying to find a "focus on the frontal cortex" approach to helping myself.People with anhedonia and apathy show lots of prefronal hypofunction. It just keeps turning off, for various reasons. For any AD treatment to produce a result, there needs to be an activation of the frontal cortex.
First I wanted to have the right circutry, so I was going to take a low dose of depakote, and augment that with loads of fish oil, which has great activity in the frontal cortexs' dopamine/serotonin networks. Infact, a high intake of omega 3 in lab rats doubled their frontal cortex serotonin/dopamine content in a month.
After I worked on the circutry, I wanted to maximize activity there through all available means. Which would include 5-hta/c antagonism which increase frontal neurotransmitter output, plus 5-ht1a agonism (frontal cortex loaded with 5-ht1a receptors), some direct/indirect noradrenergic activity.
I was thinking (for my case)Remeron, Buspar, Fish Oil, depakote, and maybe
a little celexa.Doctor wouldn't hear of it.
-------------------------------------------------
Other combinations I have thought of are. Although the following are more just interest than anything else.
Buspar + Pindolol:
Lithium + Pindolol:
-------------------
(dual 5-ht1a/b autoreceptor
antagonism for a most robust
serotonin releaseBuspar + Mirapex:
-----------------
Clean, sweet, dopaminergic and
serotogenic stimulation.Stimulant + Periactin:
----------------------
Coffee + Periactin has
a powerful anti-anhedonia
effect.Remeron + Buspar:
-----------------
More intrinsic 5-ht1a a
5-ht1a agonism. Perhaps
more agression.Depakote + Selegeline + Omega 3
-------------------------------
Frontal cortex repair and activationSelegeline + Omega 3
--------------------
Frontal cortexAlphaLipoic Acid +
Acetyl-L-Carnatine +
Selegeline
-------------------
Live forever, feel good too.
Rebust mitochondial repairation.
Buspar + Selegeline
-------------------
Pharmachological KAVA KAVA
Ie MAO-B + 5-ht1a agonist.Pindolol + Amisulpride + Yohimbine
----------------------------------
5-ht,NE,DE autoreceptor
antagonism. No mans landSelegeline + Periactin:
-----------------------
Anti-anhedonia.Buspar + periactin
------------------
5-ht1a agonistm, 5-hta/c
antagonism.-----------------------------------------
Try more trileptal if you think it will help. Don't loose hope if it doesn't. Focus on the frontal cortex, thats how to beat bipolar depression IMHO.
Linkadge
Posted by SLS on July 1, 2005, at 9:00:53
In reply to Re: Trileptal is pooping-out on me., posted by linkadge on June 30, 2005, at 23:28:50
Hi Link.
> Proper prefronal cortex activity is *key* to maintaining an anhedonia free life.
I think you are absolutely right about the involvement of the PFC in my case of bipolar disorder. I experience something similar to the deficit syndrome seen in schizophrenia.
> Most of Dr. Manji's work shows that certain family history of unremitting bipolar depression is associated with some pretty hefty shrinkage in the subgenual prefrontal cortex.
Wonderful.
> Manji's work seemd to show that lithium/depakote (even when used it what seemd to be almost homeopathic doses) protected, and revered many prefrtal cortex shrinkage.
I'll keep that in mind. For me, dosages would have to be very small as both drugs, when taken chronically, makes me feel worse.
> Unfortunately carbamazapine had no effect. It is good on the temporal lobes, but not as neurotrophic/neurorestorative as lithium/depakote.
It will be interesting to see where Trileptal takes me. If I respond robustly to it, I think it might give you another clue as to how the pieces of the puzzle fit together. The subgenual cingulate region (Brodmann area 25) is metabolically overactive in treatment-resistant depression. Perhaps the white matter in this adjoining region becomes hyperactive for lack of information processing in the hypofunctional subgenual gyrus gray matter. Sodium channel antagonists like Tegretol and Trileptal might reduce the activity in the cingulate white matter in depression. That sounds pretty stupid, actually. Never mind. I was just trying to bring into the equation the successes seen in the use of DBS for severe depression, but that might be something that is applicable only to unipolar depressives who experience sadness. Maybe DBS doesn't work for bipolar depression.
Crap. I wish I could read more than just a few sentences before having to stop. My cognitive slowing is another reason to believe that I have a deficit in executive function in the PFC.
> Mifesteprone *may* help, but are cortisol issues a biggie for you right now?
I don't know. In the past, I have tested positive to dexamethasone suppression test and salivary cortisol. I go out of my way to keep my level of stress to a minimum. I've been doing that for years. I avoid anxiety-provoking thoughts and situations.
> Nortryptaline seems like a good choice. Bipolars with prefronal issues seem to repsond well to Nortryptaline. I read a study that shows that it does have a nice frontal cortex catecholamine effect. (probably aided by its 2a blockade)I also glean mild benefit from atypical neuroleptics. More 5-HT2a blockade. As for catecholamines, I experience about 3 days of improvement from taking amphetamine and bromocriptine.
> For my last doctors visit, I was really trying to find a "focus on the frontal cortex" approach to helping myself.
> People with anhedonia and apathy show lots of prefronal hypofunction. It just keeps turning off, for various reasons. For any AD treatment to produce a result, there needs to be an activation of the frontal cortex.
I agree. There also seems to be a need for a reduction of activity in the cingulate. This might be secondary to subgenual PFC hypoactivity. Perhaps my idea wasn't so stupid. I don't know. What an exciting time it must be in neuroscience and psychiatry. I wish I could experience it from the other side of the fence.
> First I wanted to have the right circutry, so I was going to take a low dose of depakote, and augment that with loads of fish oil, which has great activity in the frontal cortexs' dopamine/serotonin networks. Infact, a high intake of omega 3 in lab rats doubled their frontal cortex serotonin/dopamine content in a month.
> After I worked on the circutry, I wanted to maximize activity there through all available means. Which would include 5-hta/c antagonism which increase frontal neurotransmitter output, plus 5-ht1a agonism (frontal cortex loaded with 5-ht1a receptors), some direct/indirect noradrenergic activity.
> I was thinking (for my case)
> Remeron, Buspar, Fish Oil, depakote, and maybe
> a little celexa.
> Doctor wouldn't hear of it.Linkadge, I think for future visits, and prior to seeing a doctor for the first time, you send them a letter laying out your history, symptom profile, previous treatments, and your most immediate treatment ideas. Keep your comments organized and focused rather than rambling and thinking out loud. Give the practicioner a little time to digest your case and develop a respect for your knowledge and intellect before they ever meet you. He will also need time to engage his humility circuits.
> Other combinations I have thought of are...
> Try more trileptal if you think it will help. Don't loose hope if it doesn't. Focus on the frontal cortex, thats how to beat bipolar depression IMHO.
My doctor came up with the same conclusion independent of any input on my part. I got lucky.
I will. Sometimes if you throw enough sh*t against the wall, some of it is bound to stick.
THANK YOU SO MUCH, LINKADGE!!!
- Scott
Posted by linkadge on July 1, 2005, at 17:17:48
In reply to Re: Trileptal is pooping-out on me. » linkadge, posted by SLS on July 1, 2005, at 9:00:53
>It will be interesting to see where Trileptal >takes me. If I respond robustly to it, I think >it might give you another clue as to how the >pieces of the puzzle fit together. The subgenual >cingulate region (Brodmann area 25) is >metabolically overactive in treatment-resistant >depression. Perhaps the white matter in this >adjoining region becomes hyperactive for lack of >information processing in the hypofunctional >subgenual gyrus gray matter. Sodium channel >antagonists like Tegretol and Trileptal might >reduce the activity in the cingulate white >matter in depression. That sounds pretty stupid, >actually. Never mind. I was just trying to bring >into the equation the successes seen in the use >of DBS for severe depression, but that might be >something that is applicable only to unipolar >depressives who experience sadness. Maybe DBS >doesn't work for bipolar depression.Maybe a simple pet scan could guide treatment for you?? It is known that different AD's and different mood stabalizers have effects on different areas of the brain.
I failed to see the logic in the DBS though. If the subgenual cingulate is overactive in depression, what good is done by electrically stimulating it ???
>Linkadge, I think for future visits, and prior >to seeing a doctor for the first time, you send >them a letter laying out your history, symptom >profile, previous treatments, and your most >immediate treatment ideas. Keep your comments >organized and focused rather than rambling and >thinking out loud. Give the practicioner a >little time to digest your case and develop a >respect for your knowledge and intellect before >they ever meet you. He will also need time to >engage his humility circuits.
Things are extrordinarily tight here in canada. I waited 8 months for *any* opening for *any* psychiatrist in the area. They know they have the upper hand since they are in so much demand. I feel that if I ventured to write a letter like that, chances are good I'd never hear from them again. It's almost like an "accept what you get" type of situation. It's pretty bleak unfortunately.
Linkadge
Posted by 4WD on July 1, 2005, at 21:18:14
In reply to Re: Trileptal is pooping-out on me., posted by linkadge on June 30, 2005, at 23:28:50
>
>
> I was thinking (for my case)
>
> Remeron, Buspar, Fish Oil, depakote, and maybe
> a little celexa.
>
> Doctor wouldn't hear of it.
>
>
Linkadge,
You need another doctor. Like you don't know this but really. Will you at least try going to a GP? And/or set the wheels in motion to switch pdocs? I feel like I want to go to my GP and ask for scripts for the meds you want to try and mail them to you!Does your doctor give any reason why he won't let you try the Remeron Buspar Depakote regimen?
marsha
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Posted by 4WD on July 1, 2005, at 21:23:34
In reply to Re: Trileptal is pooping-out on me., posted by linkadge on July 1, 2005, at 17:17:48
>
> I failed to see the logic in the DBS though. If the subgenual cingulate is overactive in depression, what good is done by electrically stimulating it ???Shock it into a normal rhythm, like a defibrillator for a heart that has stopped beating normally and is quivering instead?
Posted by SLS on July 2, 2005, at 7:15:51
In reply to Re: Trileptal is pooping-out on me., posted by 4WD on July 1, 2005, at 21:23:34
> >
> > I failed to see the logic in the DBS though. If the subgenual cingulate is overactive in depression, what good is done by electrically stimulating it ???
>
> Shock it into a normal rhythm, like a defibrillator for a heart that has stopped beating normally and is quivering instead?
>
>I think the idea is to actually turn the area "off" by blocking normal neural activity, perhaps by keeping the area in a constant state of depolarization by applying voltage. I guess I should look it up.
- Scott
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
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