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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 33. This is the beginning of the thread.
Posted by Lamdage22 on May 25, 2019, at 7:23:44
I am just frustrated to see so many people suffering. I only know of one success story here. That's ace. Maybe I'm just lucky because my meds work better for me than for most here. Also, I can afford a lot of good supplements which helps.
I have given up looking for the magic bullet. I don't think it exists right now. At least it doesn't exist in the psychiatric realm. I am sure that almost everyone here could be cured with things that already exist. But we don't have the knowledge. They happily spend 120 Billion to shoot people to the moon, but they don't care much about us. Is psychiatry interested in curing people? The way I see it is they are interested in people taking a lot of meds for a really long time.
If they want to help us so badly, why don't they study natural alternatives? Its always like "the safety of long term use has not been established". Why won't it be established for god's sake?
Sorry guys, this is in no way an attack on you. Just sharing my thoughts.
Posted by TH on May 25, 2019, at 16:36:02
In reply to It all seems pretty futile, posted by Lamdage22 on May 25, 2019, at 7:23:44
I guess this messageboard is really a very small subset of the population. It's such an obscure resource that to even stumble across it, I'd say someone would have to be searching fairly thoroughly on a tricky issue. It's also possible that any degree of success goes unnoticed, as many people may not think of this place in times of wellness.
Maybe it would be interesting to see a thread of any (even partially) positive outcomes, to see how far people have come.
Posted by rose45 on May 25, 2019, at 18:08:14
In reply to It all seems pretty futile, posted by Lamdage22 on May 25, 2019, at 7:23:44
Do you think the reason for this is perhaps meds work for a while and then stop working?
Many people seem to have had success with maois, but then become resistant after a few years. Noone ever told me this before about meds.I also wonder how many people on here are seriously ill. For instance, when the meds dont work, I am incapable of working or doing much, at all, whereas I get the impression that many people on these boards keep looking for the 'perfect' solution, and are still able to keep up their lives whilst they chop and change meds. Or am I wrong?
Posted by TH on May 25, 2019, at 23:07:47
In reply to Re: It all seems pretty futile, posted by rose45 on May 25, 2019, at 18:08:14
I think it requires a relatively high level of functioning for someone to be able to come here and have a discussion about medication and take an active role in determining their treatment plan, however I don't doubt that many if not most here have been in worse mental states in the past. This doesn't strike me as a place for rock bottom as such.
It's certainly true that a lot of people don't have the same difficulty with stopping and starting medication that you seem to, but I don't think that's necessarily a reflection on the severity of the illness.
Posted by Radish on May 26, 2019, at 16:10:13
In reply to Re: It all seems pretty futile » rose45, posted by TH on May 25, 2019, at 23:07:47
i hope most of the old users here have moved on because they feel so good that they are busy living and have no use for discussing treatment. Assuming thats true, I wish more users would post, and post frequently, about their experience and the treatment that works. It would be appreciated. Maybe some have moved on to other more active sites. I know I dont stay a member of any one site for too long; eventually I find some other diversion.
I guess the user base here is a feedback loop. The more posters leave, the less content there is, causing more people to leave. And I think the ancient forum style repels new users. Wish it were feasible to get the last several people here to relocate to a new board.
Sorry I really went on a tangent there. Having trouble being coherent.
Posted by Hugh on May 27, 2019, at 12:08:39
In reply to Re: It all seems pretty futile, posted by TH on May 25, 2019, at 16:36:02
> Maybe it would be interesting to see a thread of any (even partially) positive outcomes, to see how far people have come.
johnLA devoted a very detailed thread to his treatment with Deep TMS. He had been on numerous medications, tried ECT, enrolled in a Trigeminal Nerve Stimulation study at UCLA, did a ketamine infusion or two, tried medical marijuana. Deep TMS helped him far more than any of these. Here's his post about his last treatment:
http://www.dr-bob.org/babble/20140914/msgs/1071395.html
Posted by Lamdage22 on May 27, 2019, at 13:14:38
In reply to Re: It all seems pretty futile » TH, posted by Hugh on May 27, 2019, at 12:08:39
I need neuroleptics since dTMS.
Posted by TH on May 27, 2019, at 15:14:24
In reply to Re: It all seems pretty futile » TH, posted by Hugh on May 27, 2019, at 12:08:39
That's good to see something positive coming from all this!
I'd actually say I've probably had about the same degree of improvement since starting Tranylcypromine. The only challenge has been keeping the effect constant.
It really makes clear just how little is really known about mental illness, doesn't it? Some people will miraculously respond to a treatment that for others might as well have been a placebo.
Posted by rose45 on May 27, 2019, at 15:58:38
In reply to Re: It all seems pretty futile » Hugh, posted by TH on May 27, 2019, at 15:14:24
the maois work wonders, but in my experience you have to be so cautious re. changing the dosage. I just lowered the dosage of parnate slightly and now it doesnt work. Same thing happened with nardil, though it did keep working for 25 or so years. but any change of dosage was SO complicated to manoevre. Again, I wonder whether this was just my experience or that of others. Its very true that these meds affect us all in such different ways. I also found with maois that I became over positive, especially on nardil.... ie a bit too high, and others have posted similar experiences - which is quite dangerous, because if/when they stop working, it might be impossible to get that euphoric feeling with any other med, and that reaction will always remain as a target, though Im not sure if that is really the purpose of tanking an antidepressant, if that makes sense. Also when they stop working, I feel that I have 'brain damage' ie my brain doesnt work properly and I cant do simple tasks which is extremely frightening. I think they are much stronger drugs than we realise.
Posted by TH on May 27, 2019, at 17:12:20
In reply to Re: It all seems pretty futile, posted by rose45 on May 27, 2019, at 15:58:38
Given the point I was at before I began the treatment, I'm happy to take any period of wellness I can get. While I haven't found myself becoming "overly positive", I have noticed a return of passion for my interests. This could just about border on "overly positive", but this had always been my personality before the illness began.
It wouldn't surprise me if this "high" you felt was GABAergic (benzo-esque), seeing as Nardil in particular does also work on the same system as benzos.
I also think that it can be equally dangerous to obsess over whether any positive effects are justified or not. Quite possibly a hangover from our puritan views of days-gone-by, we are quick to demonize any substance, licit or otherwise, that causes any departure whatsoever from a perfectly sober state.
While I am somewhat concerned about any potential negative effects, both now and in the future, this illness has been so debilitating that I have little to lose if it eventually fails.
I can sympathize with your difficulty getting the medication to work consistently. After reading the previous thread about inactive ingredients in Nardil tablets, I'm starting to suspect that there may be more at play than just dose when it comes to effectiveness. I guess you've just got to play guinea pig until you get it right.
Posted by Ruuudy on May 27, 2019, at 19:53:50
In reply to Re: It all seems pretty futile » rose45, posted by TH on May 27, 2019, at 17:12:20
Placebo and nocebo are actual commonly-used terms; I'm not sure if I just made up hypercebo and hypocebo - I didn't actually "Google" them.
Let's assume that someone is calling it a "placebo effect" when taking an inert sugar pill. But what about when someone is taking an active substance and is receiving some noticeable benefit, but it's exaggerated due to somewhat of a placebo effect?
What would you call that?Or what about someone that is taking a drug that is doing something chemically in the brain but is not noticable by the patient? What do we call that?
So relating to the topic of the thread at hand,,,
Might you & I have tied or experimented with so many different medications, supplements, alternative treatments, voodoo that we have taken on a "nocebo" personality that just won't allow whatever treatment paths we try to work?Can I have been taking Prozac/Fluoxetine for so long (nearly 30 years) that, though it is still performing its intended actions inside my brain, I have adapted an attitude or feeling that it's no longer working for me?
This is definitely when & where I wish there were easily-accessable tests (blood or scans) that would show the medication is still performing.
Rudy
Posted by TH on May 27, 2019, at 21:04:41
In reply to Placebo, nocebo, hypercebo, hypocebo, posted by Ruuudy on May 27, 2019, at 19:53:50
I would hope that by the time we have a thorough enough understanding of mental illness to allow such testing to be done, that we would also have such effective medication that such a test isn't really required.
I guess that's the one hope to hold when all else has failed; that our understanding will only get better and medicine will continue to advance.
Posted by rose45 on May 28, 2019, at 9:23:06
In reply to Re: It all seems pretty futile » rose45, posted by TH on May 27, 2019, at 17:12:20
im not obsessing over the extra 'high'.While I was on nardil, I gambled a lot on the stock market and lost a lot of money.... I remember my mother did the same..... when she was alive, and I kept criticising her, never realising that it was the effect of the drugs she was taking, making one over-confident - so these are things you have to be careful about, because no doctor will warn you about this. I had no interest at all in the stockmarket before taking nardil
Posted by Lamdage22 on May 28, 2019, at 12:06:47
In reply to Re: It all seems pretty futile, posted by rose45 on May 28, 2019, at 9:23:06
I just don't have the desire to try everything and I am doing pretty okay. If you put this relentless energy into sports instead of medication, you WILL get results. This attitude towards meds here strikes me as kind of delusional
Posted by Lamdage22 on May 28, 2019, at 12:10:06
In reply to Re: It all seems pretty futile, posted by Lamdage22 on May 28, 2019, at 12:06:47
Maybe I am just in a different spot than most here and that's why I don't understand it.
Posted by SLS on May 28, 2019, at 12:48:27
In reply to Re: It all seems pretty futile, posted by Lamdage22 on May 28, 2019, at 12:06:47
Hi, Lamdage.
> I just don't have the desire to try everything and I am doing pretty okay. If you put this relentless energy into sports instead of medication, you WILL get results. This attitude towards meds here strikes me as kind of delusional
I can understand how one can come to feel that way. Certainly, feelings of futility can arise from repeated failure. I'm sure there were plenty of people who thought Wilbur and Orville Wright were delusional.
I'm glad that you are doing pretty okay. I have had a very rough time over the last 11 months. I have been taking Trintellix for about 8 weeks. There have been glimpses of improvement here and there. They were mild, but unmistakable. I am trying to remain optimistic, but feelings of hopelessness are invading. It has been too hard for too long. I guess I am fortunate that I had a few magical remissions as a result of drug treatment. They were enough to convince me that it is not delusional to believe that biological treatment can be effective for some types of depression.
- Scott
Posted by Lamdage22 on May 28, 2019, at 12:56:58
In reply to Re: It all seems pretty futile » Lamdage22, posted by SLS on May 28, 2019, at 12:48:27
Don't get me wrong, I am not symptom-free. But I can accept my life as it is. Trials of new stuff have the potential to make me worse, so I shy away from them. I am not in the mood for experiments. I settle for partial improvement. You have to admit that lasting remission due to meds is rare.
Posted by TH on May 28, 2019, at 15:23:09
In reply to Re: It all seems pretty futile, posted by rose45 on May 28, 2019, at 9:23:06
I am sorry to hear that. It sounds like an awful thing to deal with.
Posted by Lamdage22 on May 29, 2019, at 9:56:31
In reply to Re: It all seems pretty futile, posted by rose45 on May 28, 2019, at 9:23:06
Rose, I too had a bad reaction to Nardil. Its a really strong med. I wish I could take the gaba-t inhibiting metabolite.
Posted by rose45 on May 31, 2019, at 7:41:01
In reply to Re: It all seems pretty futile, posted by Lamdage22 on May 29, 2019, at 9:56:31
ive just been to see a private psychiatrist here in the uk. He has increased the parnate to 45mg and then 50 mg, which I am finding so hard to tolerate, but I suppose I will have to endure it for a few days to see if I can bear it.I have a really uncomfortable hyped up feeling. Does anyone else know whatI mean.
For sleep, he suggested part phenergan, an anti histamine and part zolpidem. But when I read the label inside the phenergan, it said not to take with maois, and I am so full of fear anyway, with all these drugs, that I didnt take it. I have no idea whether the higher dose of parnate will make it start working again, but feeling very ill and desperate and my mind is not working properly at all. When I told the psychiatrist, he said this is not a common symptom, but the same thing happened with nardil, both as I was getting on to it, and when it stopped working. Feels like brain damage. Am I the only one to have so much trouble with the maois ?
Posted by SLS on May 31, 2019, at 10:49:28
In reply to Re: It all seems pretty futile, posted by Lamdage22 on May 28, 2019, at 12:56:58
> You have to admit that lasting remission due to meds is rare.
I don't think any statistics for this exist. Doctors who have practiced for 30 years would be in a good position to know.
- Scott
Posted by Lamdage22 on May 31, 2019, at 12:23:39
In reply to Re: It all seems pretty futile, posted by SLS on May 31, 2019, at 10:49:28
I do read it sometimes but i estimate that 2 out of 3 of these remission reviews are not written by patients. Yeah some are lucky. I have met about 5 people.
Posted by Christ_empowered on May 31, 2019, at 12:43:03
In reply to Re: It all seems pretty futile, posted by Lamdage22 on May 31, 2019, at 12:23:39
i don't know. there's a line...cross it, you'll probably be on the miracle meds for the rest of your life and also invalidated, socially. and yet...
i cannot do much about being a non-entity, in my area and really the world at large, but 'standard treatment' plus vitamins plus my family plus my faith have all combined to result in...a quiet, meaningful life, one that is so far free from confinement, and largely absent the chaos and personal hell of my existence before.
'recovery' ? ok, fine. 'schizophrenia, in remission' does not even seem to be an available diagnosis/label. if 'recovery' is the best they're selling, i suppose i'll buy it.
Posted by rose45 on June 1, 2019, at 6:26:35
In reply to Re: It all seems pretty futile » rose45, posted by TH on May 25, 2019, at 23:07:47
I would never have tried drug treatment if I could manage without it. Suffered from depression for most of my life, but was very anti drugs. Practiced meditation and yoga. Then I had a complete breakdown at age 45, and had no choice and was put on nardil. Im still not sure why the breakdown happened - it was a combination of suffering from depression and insomnia for years, taking temazepan,although NOT every day, and insecurity about a change in my life. Doctors tell you you should treat' depression early but from reading these boards, I wonder whether many people on here would be better off not taking drugs, if they can somehow manage, rather than going on this roller coaster, which then seems to make you depend on meds for life which is scary.
Of course I cant put myself into anyone else's mind,but when the maois stop working, for me it is like hell... cant think clearly, feels like my mind is damaged and cant do anything much at all, and it is very painful coming on or off them. Maybe it is something about me? Most of you seem to be able to carry on with your jobs etc... I can barely go to the shops to buy food
'I become totally incapacitated, which is the situation right now, although Im still able to write on here.
Noone told me at the beginning that I would be dependent on drugs for life, and that I wouldnt be able to work without being on drugs.Am seeing a very old private psychiatrist now, who said one of his clients was on remission from parnate for a while. I dont know exactly what he meant by that.... and wasnt that interested, as I prefer to spend the precious time I have with him on myself. I think he was trying to encourage me. When ever I have decreased the dose of either maoi, ive landed in trouble. And when the maois do work, it feels like I become a different person, full of confidence, and energy and even slightly arrogant and over talkative, which is not really me at all. So in my experience, they help me to function, but give me another personality, which is not really ideal.
I would appreciate getting feedback from all of you on the above, if you feel like it. Thanks.
Posted by Lamdage22 on June 1, 2019, at 6:42:59
In reply to Re: It all seems pretty futile, posted by rose45 on June 1, 2019, at 6:26:35
I think it gets problematic when meds are the only course of action and nothing else is done. However small, people should make steps to get better aside from medication.
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