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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 19 of 19. This is the beginning of the thread.
Posted by SLS on June 3, 2005, at 10:13:36
How is it that I can take so much medication and feel such little improvement?
Damn.
I guess I should not take for granted the 15% improvement I glean from my present medication regime. I would be near motionless with it.
- Scott
Posted by yesac on June 3, 2005, at 12:06:14
In reply to How is it..., posted by SLS on June 3, 2005, at 10:13:36
What meds are you taking?
I don't know how it's possible to take so many mind-altering drugs and feel no different, but it's happened to me so many times!
And I think you're right about not taking the 15% improvement for granted. What I mean is that, well, I have taken so many drugs and not had any improvement at all. Some have been worse than not being on them. Now I am on lithium and I think there is this ever-so-slight improvement in a few of my symptoms, and I'll take that over nothing. I'm still in pretty bad shape, but at least I'm not quite as bad as before.
I think some of us maybe just have to settle for whatever minimal improvement we can get. That's my conclusion anyways.
Posted by TamaraJ on June 3, 2005, at 13:09:17
In reply to How is it..., posted by SLS on June 3, 2005, at 10:13:36
(((Scott)))
D*mn is right!!! I don't know how that is, and I really wish I did. It is not only incomprehensible, but completely unfair. I have wondered if perhaps the body sometimes needs to be completely purged and be med-free for about a month, and then have meds re-introduced, one at a time. I know it probably sounds crazy, but maybe the body gets confused and conflicted when one med is stopped with another being immediately started, and all the while others are continued. There has to be a better way, and I guess we can only hope that it happens in our lifetime.
Have you ever considered having the rEEG procedure done that others here have talked about?
> How is it that I can take so much medication and feel such little improvement?
>
> Damn.
>
> I guess I should not take for granted the 15% improvement I glean from my present medication regime. I would be near motionless with it.
>
>
> - Scott
Posted by SLS on June 3, 2005, at 14:22:55
In reply to Re: How is it... » SLS, posted by yesac on June 3, 2005, at 12:06:14
> What meds are you taking?
Currently:
Lamictal 150mg
Parnate 80mg
nortriptyline 100mg
Abilify 10mg
Trileptal 300mg> I think some of us maybe just have to settle for whatever minimal improvement we can get. That's my conclusion anyways.
I guess all we can do is keep trying to get better while endeavoring to accept and work with our current limitations.
Hope keeps me going. I'm not always sure where that hope comes from, but I feel blessed to be able to retain it despite the pain of the illness and the frustration of many treatment failures. At least I know what remission feels like. I spent 9 months feeling 100% well on a combination of Parnate + desipramine. Sweet memories. They keep me going.
- Scott
Posted by SLS on June 3, 2005, at 14:31:39
In reply to Re: How is it... » SLS, posted by TamaraJ on June 3, 2005, at 13:09:17
Hi Tamara.
> (((Scott)))
:-) Thanks.
> D*mn is right!!! I don't know how that is, and I really wish I did. It is not only incomprehensible, but completely unfair. I have wondered if perhaps the body sometimes needs to be completely purged and be med-free for about a month,
This has been suggested to me by a few people.
> I know it probably sounds crazy,
No crazier than half of the other brilliant ideas people have come up with.
> Have you ever considered having the rEEG procedure done that others here have talked about?
No. I still have some research to do on it. My knee-jerk reaction when I first heard about it was that it sounded like a nice idea, but that the databases that serve to relate the results must be too small for such a new field of diagnostics.
Thanks for the wonderful "crazy" suggestions. I think I should look closer at rEEG.
- Scott
Posted by Maximus on June 3, 2005, at 15:41:21
In reply to How is it..., posted by SLS on June 3, 2005, at 10:13:36
> How is it that I can take so much medication and feel such little improvement?
>
> Damn.Scott, which meds are you taking?
Posted by Maxime on June 3, 2005, at 15:42:02
In reply to How is it..., posted by SLS on June 3, 2005, at 10:13:36
Here's a hug for starters ((( Scott ))).
Scott you would be a perfect candidate for DBS. Have you given it any thought?
I wish you could feel much better. But you are a very special person to be thankful for the 15 percent relief you do get. Most people want complete normalcy (not possible IMHO as no one is normal).
Maxime
> How is it that I can take so much medication and feel such little improvement?
>
> Damn.
>
> I guess I should not take for granted the 15% improvement I glean from my present medication regime. I would be near motionless with it.
>
>
> - Scott
Posted by Maximus on June 3, 2005, at 16:17:57
In reply to Re: How is it... » SLS, posted by Maxime on June 3, 2005, at 15:42:02
> I wish you could feel much better. But you are a very special person to be thankful for the 15 percent relief you do get. Most people want complete normalcy (not possible IMHO as no one is normal).
I do agree with the above statement. Although i'm not pessimist, i think we can reach a "certain" quality of life, but i know we will never be like we were before. Pure logic.
So the question is: what should be our "new" normalcy? I'm not sure i can answer this question...
Posted by Mr.Scott on June 3, 2005, at 21:07:13
In reply to How is it..., posted by SLS on June 3, 2005, at 10:13:36
My thoughts and empathy are with you. It's a bad *ss disease. If anyone can pull it off its you. Your gratitutde by the way in the face of adversity or rather poor efficacy is truly admirable and evidence of your character. One of these days you'll get your prize so long as you don't take your eye off of it.
I have some further thoughts on the matter therapeutically speaking, but I'll reserve those unless asked.
Scott
Posted by SLS on June 3, 2005, at 21:12:59
In reply to Re: How is it... » SLS, posted by Maxime on June 3, 2005, at 15:42:02
> Here's a hug for starters ((( Scott ))).
Thanks, Maxime. :-)
> Scott you would be a perfect candidate for DBS. Have you given it any thought?
I have only given it cursory consideration. I am still reluctant at this point to have the surgical interventions that have been proposed and are still experimental. I haven't heard of any great success with VNS. I think DBS makes more sense, but I just don't want people drilling holes in my skull and going fishing. When they get it right in Parkinsons, though, it is truly amazing.
I would like for the investigators of DBS to identify and better understand the anomalous physiology that would serve to have predictive power of treatment success.
I guess I have a handful of drugs I want to investigate first. Then, maybe rTMS. Then, maybe DBS. Although I am afraid of it, DBS might yet end up at the top of my list of things to try by this time next year. It's hard to know.
- Scott
Posted by SLS on June 3, 2005, at 21:14:28
In reply to Re: How is it... » SLS, posted by Mr.Scott on June 3, 2005, at 21:07:13
> I have some further thoughts on the matter therapeutically speaking, but I'll reserve those unless asked.Consider yourself asked...
:-)
- Scott
Posted by 4WD on June 3, 2005, at 23:11:23
In reply to How is it..., posted by SLS on June 3, 2005, at 10:13:36
> How is it that I can take so much medication and feel such little improvement?
>
> Damn.
>
> I guess I should not take for granted the 15% improvement I glean from my present medication regime. I would be near motionless with it.
>
>
> - ScottScott,
It sounds like you are feeling discouraged. I wish I could help. I can't suggest meds or treatments - I don't know enough. I do want you to know (and I hope this won't offend you) I pray for you on a fairly regular basis. (Along with several others on this board --and myself of course.)
Marsha
Posted by KaraS on June 3, 2005, at 23:22:18
In reply to How is it..., posted by SLS on June 3, 2005, at 10:13:36
> How is it that I can take so much medication and feel such little improvement?
>
> Damn.
>
> I guess I should not take for granted the 15% improvement I glean from my present medication regime. I would be near motionless with it.
>
>
> - Scott
(((Scott)))I don't know the answer but I will echo the other comments in this thread and say that it is so terribly unfair. I have been living with some degree of depression for the last 25 years now but I have not been as brave and aggressive in treating it as you have. I marvel at your attitude and your courage.
I have been corresponding with someone who has gone through the rEEG process. Her story, and those of two of her friends, have convinced me to go for it. Her two friends were helped right away but the person I corresponded with needed further follow-up visits and adjustments. She also wasn't completely "fixed" until she saw an MD with holistic orientation who gave her a thorough testing. I think this doctor determined that she had a problem utilizing vitamin B6 as well as hormonal problems. Both of her doctors were working together on her case. She's now getting vitamin B12 shots, taking other vitamins, hormones, amino acids and supplements and is using a light box along with her medications. She said that she feels 100% "cured" at this time.Anyway, I have my rEEG intake appointment next Friday. I'll post here about my experience with this. If the rEEG doesn't end up providing me with enough relief, then I'll go for the full holistic MD testing. Don't know if that will help either but I feel I have to try to start being braver and more aggressive. Honestly, I often think of you and some others here and it gives me more of a push to keep trying things and not give up. I hope that my rEEG experience will end up helping other people on the board. If you were one of them, I'd be so happy.
Kara
Posted by sabre on June 4, 2005, at 1:53:04
In reply to How is it..., posted by SLS on June 3, 2005, at 10:13:36
Hi Scott
When you take all these medications, do you get side effects or are these minimal too?Do any of them counter the effect of others?
Have you tried combining them with exercise? I have read about how it can heighten the levels of drugs in blood plasma eg beta blockers.
I suppose the other possibility might be that changing serotonin, NA or GABA isn't the answer for you.
You'd think that researchers would have taken all the extreme reactors and extreme non reactors and looked at what makes them different. I don't know if any studies have been done to ascertain the range of reactions to psychoactive drugs?
Are there any new drugs in the pipeline that you are hanging out for, Scott?
I hope you find an answer soon.
Sabre
Posted by blueberry on June 4, 2005, at 5:38:05
In reply to Re: How is it... » yesac, posted by SLS on June 3, 2005, at 14:22:55
That is one of the most powerful drug combinations I've ever seen here. Why only 15% improvement is a painful puzzle. I have thought about your situation and came up with a few theories. Just opinions, and just theories.
Contrary to what most people believe, I believe that the closer a med is to targeting whatever is wrong, the lower the dose is required to do that. The further away a med is from targeting the real problem, the higher the dose needed. If that theory was true, then it would indicate to me that increasing serotonin and NE levels a lot is not targeting the actual underlying problem in your case.
You clearly have the bases covered in terms of increased serotonin, NE, and DA. But that doesn't seem to be helping much. What has been left out? The GABA system is left out. The opioid system is left out. I've known people in your situation who experienced quick and almost miraculous recovery with either a benzo or an opioid after failing everything else. If there is a malfunction in one of those circuits, the meds you are currently taking will only affect them slightly and indirectly.
Your current meds are creating a huge buildup of serotonin, NE, and dopamine. But that isn't helping much. Think of a dam blocking a river...it results in a huge buildup of water. But what if that river is only a trickle? It won't matter how large the dam is, there won't be enough buildup in water at the dam because there is hardly any water coming in. With that in mind, maybe some meds that will stimulate neurotransmitter production and release. Like stimulants. Maybe the huge buildup of neuros from your current meds has shut down production, or maybe production has been the actual problem all along.
Basically, no matter how I look at it, I tend to feel that your symptoms are not directly or even indirectly related to low serotonin, NE, or DA levels. It's something else. In your shoes, I would be very suspect of any neurotransmitter circuit that has not already been addressed, like GABA or opioid. Going forward, I would toss out all theories you have been going on for years, because they are clearly off base. The clues and the evidence are striking. At least, to me anyway.
Just my thoughts. Psychiatry is so hard. Symptoms can be caused by any malfunction in any one of the brain's circuits. Trying to figure out which one of those circuits is primarily at fault is difficult, because only trial and error of different meds will give the needed clues. In your case, and it is just my opinion, all the clues seem to point to something else besides serotonin, NE, or DA. My top theories for your situation would be the GABA circuits, opioid circuits, or neuro stimulation and production. I could be way off base, but those are my thoughts.
Posted by SLS on June 4, 2005, at 8:01:38
In reply to Re: How is it..., posted by sabre on June 4, 2005, at 1:53:04
> Hi Scott
Hi Sabre.
> When you take all these medications, do you get side effects or are these minimal too?
That's the scary part. When I first began taking these drugs 20 years ago, their side effects were significant and persistent. With what I'm taking now, I might as well be on sugar pills for all the side effects I get. My central nervous system has accomodated to these drugs too well. If it can now reject the negative side effects, I can't help but to think that it can now reject the positive therapeutic effects with the same efficiency. Perhaps most scary is that the Parnate no longer suppresses REM sleep as I always dream. When Parnate + desipramine did work for me in 1987, I didn't have a single dream in the entire 9 months I took it.
> Do any of them counter the effect of others?
That is always a good thing to look at. Right now, I don't think so.
> Have you tried combining them with exercise?
Yes. Exercise does very little for me, regardless of intensity or duration. I plan to pick up with regular exercise again soon. It can't hurt. Maybe it will help keep my body running until my brain catches up - even if that is at age 90.
> I have read about how it can heighten the levels of drugs in blood plasma eg beta blockers.
I didn't know that. Thanks.
> I suppose the other possibility might be that changing serotonin, NA or GABA isn't the answer for you.
It would appear not. :-(
> You'd think that researchers would have taken all the extreme reactors and extreme non reactors and looked at what makes them different.
Good idea. This is only now being studied.
> Are there any new drugs in the pipeline that you are hanging out for, Scott?
There are a few. One that interests me is a drug called agomelatine. It is a potent agonist at melatonin receptors and an antagonist at serotonin 5-HT2c receptors. The pipeline is relatively empty on the output side. There are a bunch of things being looked at near the beginning of the pipeline. However, these things wouldn't see the pharmacy shelves for another 10 years. You never know when we will be surprised by something that sneaks through without much notice, though.
> I hope you find an answer soon.
Thanks, Sabre. If I do, you can bet that you guys will be the second to know (I'll be the first).
- Scott
Posted by SLS on June 4, 2005, at 8:27:38
In reply to Re: How is it..., posted by blueberry on June 4, 2005, at 5:38:05
Hi Blueberry.
Thanks for your concern and such a well thought-out post.
> That is one of the most powerful drug combinations I've ever seen here. Why only 15% improvement is a painful puzzle. I have thought about your situation and came up with a few theories. Just opinions, and just theories.
It's a good a place as any to start. I'm betting that someone other than me will come up with the answer. My track-record isn't too good. :-)
> Contrary to what most people believe, I believe that the closer a med is to targeting whatever is wrong, the lower the dose is required to do that.
The further away a med is from targeting the real problem, the higher the dose needed.
There have been very few people whom have acted under this premise. There is (or was) a doctor Martin Jensen who thought exactly the way you do.
> If that theory was true, then it would indicate to me that increasing serotonin and NE levels a lot is not targeting the actual underlying problem in your case.
> You clearly have the bases covered in terms of increased serotonin, NE, and DA. But that doesn't seem to be helping much. What has been left out? The GABA system is left out.
Interesting. Both Neurontin and Depakote can produce perceptible transient improvements that I can trigger by abruptly changing dosages either up or down. I have tried Depakote at a steady dosage for several months at dosages between 1500-3000mg. I don't remember what other drugs I was on at the time. Unfortunately, both of these drugs can worsen my depression at therapeutic dosages. Although Neurontin has lost the favor of most psychiatrists, I believe it still has therapeutic potential in mood disorders that should not be abandoned.
> The opioid system is left out.
Yes, it is. I once took some Vicadin that a friend had hanging around to see what it would do. Since I didn't feel the immediate improvement that many people report, I sort of shelved the idea. If I had had more of the stuff to work with, I think I would have persisted beyond two days. I haven't ruled out opioids. I guess I'll run it by my doctor at some point.
> I've known people in your situation who experienced quick and almost miraculous recovery with either a benzo or an opioid after failing everything else. If there is a malfunction in one of those circuits, the meds you are currently taking will only affect them slightly and indirectly.
Exactly.
> Your current meds are creating a huge buildup of serotonin, NE, and dopamine. But that isn't helping much. Think of a dam blocking a river...it results in a huge buildup of water. But what if that river is only a trickle? It won't matter how large the dam is, there won't be enough buildup in water at the dam because there is hardly any water coming in. With that in mind, maybe some meds that will stimulate neurotransmitter production and release. Like stimulants. Maybe the huge buildup of neuros from your current meds has shut down production, or maybe production has been the actual problem all along.
This is what I took at one time:
Parnate 120mg + desipramine 200mg + Dexedrine 40mg + thyroxine (T4)
Parnate 120mg + desipramine 200mg + bromocriptine
Parnate 120mg + desipramine 200mg + Lamictal
I really should have pushed the desipramine to 300mg, but I doubt it would have helped.
> Basically, no matter how I look at it, I tend to feel that your symptoms are not directly or even indirectly related to low serotonin, NE, or DA levels. It's something else. In your shoes, I would be very suspect of any neurotransmitter circuit that has not already been addressed, like GABA or opioid.
There's nothing like pure logic...
What circuits would you focus on if you were in my situation? What drugs would you suggest?
> Going forward, I would toss out all theories you have been going on for years, because they are clearly off base.
I have always suspected dopamine as having a role in all of this, but I grew from believing it the primary site of dysregulation to believing it is just a secondary site; a downstream consequence of a primary problem located elsewhere - much as you have suggested so eloquently.
> The clues and the evidence are striking. At least, to me anyway.
I wish there were more clues to what the problem is than what it is not. Right now, I plan to play with antiglucocorticoids to manipulate the HPA. I wish those CRH antagonists were closer to making it to market.
> Just my thoughts. Psychiatry is so hard. Symptoms can be caused by any malfunction in any one of the brain's circuits.I even looked at Lyme disease and took a course of doxycyline for a few months.
> Trying to figure out which one of those circuits is primarily at fault is difficult, because only trial and error of different meds will give the needed clues. In your case, and it is just my opinion, all the clues seem to point to something else besides serotonin, NE, or DA. My top theories for your situation would be the GABA circuits, opioid circuits, or neuro stimulation and production. I could be way off base, but those are my thoughts.
Thanks. You gave me some more food for my own.
:-)
- Scott
Posted by Maximus on June 4, 2005, at 13:45:28
In reply to Re: How is it... » yesac, posted by SLS on June 3, 2005, at 14:22:55
> > What meds are you taking?
>
> Currently:
>
> Lamictal 150mg
> Parnate 80mg
> nortriptyline 100mg
> Abilify 10mg
> Trileptal 300mgHi Scott,
Some clues:
1- Did you verify if your meds can have a bad interaction between them via the enzyme P450?
Norp -------> 2D6
Lamotrigine -> 3A4
Parnate -----> 2C9, 2C19, and 2D6
Abilify -----> 2D6 and 3A4
Trileptal ---> 3A4 and 3A5However, i can not tell you which one is inducer or inhibitor, sorry. Nevertheless this is a huge load on your liver, no doubt. Moreover the accumulation of the side effects can mimic a depression.
To be honest i don't know very well Abilify. However i made a very good search on newsnet (google news) and it appears that Abilify often cause flatness and/or depression. Do you really need it?
Here i go with a mix of intuition and logic; i would reduce Abilify and increase my Parnate.
Wishing you all the best!
Posted by Mr.Scott on June 4, 2005, at 18:34:47
In reply to Re: How is it... » Mr.Scott, posted by SLS on June 3, 2005, at 21:14:28
Scott-
I will say that your presentation (best I can tell over the web!) seems similar to mine, but correct me if I'm wrong. Mine has been Fairly chronic. Mostly dysthymia/atypical. Never get beyond moderately severe which is usually in the winter and I consider that a double depression. Where I suspect I differ is that I have a great deal of anxiety as well, and you don't seem too anxious. I too have responded temporarily to meds even for significant periods. Nardil & Prozac were what made me realize their was hope, but that was temporary as in a few years, then a few months. I also began to experience neurological side effects from ssri's which make them virtually intolerable at this point (ie. 12.5mg zoloft and no more or I have myoclonic jerks and akathisia.) You seem to be more tolerant now, whereas I was able to take lots of anything but no longer can. I am highly functional despite my depression. By that I mean I somehow manage to have a decent life that others seem to even envy at times, but that I have trouble enjoying. So thats my deal. My next question is whether or not you've had any experience with ECT. If you want I'll share my personal experience with it in depth, and how I use it once a month to keep most of my depression at bay. Put it this way...Its made all the difference in the world, and when I get up on those early mornings once a month anxious as hell and trying to convince myself how insane this is because I'm not even depressed and don't need this, I just try to remember those days when I'd think of jumping in front of train as it approached the platform. My girlfriend picks me up. We go to the hospital where surprisingly a large number of folks are doing this. I go to sleep, I wake up with a headache take some advil and she takes me to work. I have virtually no cognitive or memory impairment whatsoever other than feeling a bit loopey from the thiopental.
Unfortunately, It hasn't helped too much with my obsessiveness...for that I'm seeing a therapist. And my time limit for the day perusing the internet is up! I'm also looking to knock off a klonopin dependence (not addiction).
I'll be happy to detail further, but I certainly understand how people get weirded out by the idea. I waited a full year from the time we talked about it, to the time I decided to give it a try.
Scott
This is the end of the thread.
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