Another note from Dr Ameisen

[alexan]

Another note from Dr Ameisen

Haha.. Look who joined us... I've been asking you for your titration schedule for days now LaAaZZZY :H:H --

[Cinders]

Another note from Dr Ameisen

Hi,

I did want to say in OA's defense, he tried Naltrexone. It didn't work.

I am quite sure he did not use the Sinclair method.

I am disappointed he has not researched Naltrexone to that point, though.

Cindi

[Lo0p]

Another note from Dr Ameisen

https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B6iv_Hs c2xEoMWZhOGU1YmUtY2Y3NC00ODU4LTk0YjQtMWY0MmFlYmQ1Y mU0&hl=en

https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B6iv_Hs c2xEoMjRlMjNhZjItYTk1NC00Y2Y1LTk4YTQtYzlhMGZjNTM1N TBj&hl=en

The actual studies are spottier that Eskapa would lead you to believe and sheds a lot of light on why the success rate isn't nearly what he claims, however, when it works, it works!

I've been interested in the OPRM1 results for a long time now.

Alexan and others, I promise (hate using that word because I can never follow through these days) to explain my experience with Nal + Baclofen here sometime soon. I already have, ftr, but I can't even figure out how to find it in my own posts.

[Otter]

Another note from Dr Ameisen

It may be that Naltrexone has some benefit but what sets Baclofen apart is that it affects a different Gaba receptor and it calms the amygdala. Nal is a Gaba A agonist, I think, so it just does not do the same thing as Baclofen.

I have to say that the preoccupation with side effects consistently misses the point.

Why don't people who feel this way write about the side effects of chemotherapy? We could have a thread devoted to a debate about whether it is better to be alive with no hair or dead with a full head of hair.

I just don't see why anyone would expect Baclofen treatment to be free of side effects. Why would or should it be and so what. They go away! Just like the alcoholism.

Naltrexone treatment involves taking Nal "before" you drink. Hey...Baclofen treatment results in you not drinking at all. Take Nal, keep drinking if that is what you want. We paid $200 for a three month supply of Nal, could not get it on prescription, it didn't work...

What a monumental waste of time. Nal is not interchangeable with Bac, nor is Campral or Topa or anything else. Baclofen replaces endogenous GHB. That is what makes it a "cure" for alcoholism. Nal does not do that. Read Ameisen's book and read his explanation of what Baclofen does. If Nal was a "cure" in the same way Baclofen is then you would see thousands of posts here about it.

Baclofen is the "better mousetrap" and people are beating a path to Ameisen's door.

[LittleLessBoozin']

Another note from Dr Ameisen

Hi all,

I've lurked here for a little while, and I guess it's a little sad that my first post is going to be a little controversial.

I have been contemplating starting the Baclofen regimen, and was more or less there, but one thing I really fear (much more than physical SEs) is the possibility of mental SEs.

Speaking frankly, the original post quoting Dr. A concerns me a great deal. It appears to be ill thought out: he starts off making one fair point and then degenerates into what looks like a rant- as a long time poster on UK discussion boards, it rather reminded me of the sort of thing that posters (including me!) blurt out when they are posting late at night and drunk.

Can anyone here who has been on Bac for a long time reassure me on this point (i.e. you still have a husband/wife, your career has gone forwards not backwards etc.)

Please don't think I'm popping up here as a knocker of Dr. A- I'm actually an admirer, I'm just very concerned with the fact that after writing a well written book, he now feels the need to communicate in this (seemingly) scattergun fashion, with ill structured posts.

Sincere thanks for anyone who can offer any reassurance on this point.

Paul.

p.s. to end on a positive note, I'd like to thank everyone who posts here- after years of defiantly doing absolutely nothing about my condition due to thinking that AA (which will NOT work for me) is the only solution- I think I'm ready to try to sort this out with science.

p.p.s. To single out one poster in particular, it was MurphyX's diary that really, really resonated with me- he's a veggie Welshman and I'm a highly carnivorous Englishman, but we're both (it seems) rogue-ish- and bald ;-)

[Otter]

Another note from Dr Ameisen

Winks;1096464 wrote: You gotta wonder about a guy who sets up an unknowing, loyal follower to spread fear in order to further his own agenda. I hear that Fox news has an opening. Maybe the doctor has missed his true calling.

Winks,

Yes, you are anti-you. You have just put a big target right on your forhead.

You have made 11 posts under this moniker. You have insulted Bleep by calling him "unknowing", which he certainly is not. Then you insult Olivier Ameisen by equating him to a loon off Fox. You say he is spreading "fear". He is not. He is pointing out a side effect of Topiramate which is an entirely legitimate thing to do and something you would probably say is ok when it comes to Baclofen. He is encouraging people to take a highly effective treatment for a deadly disease.

You probably haven't read the posts by Topsy Turvy Tracy but you should. She insulted huge numbers of people here until she was driven off the site. I am sure no one would want the same thing to happen to you!


Littlelessboozin'

Ultimately, who knows about Dr. Ameisen but himself. I think of myself as intelligent but I come on here and rant. I also rant at my family and my colleagues at work. I tell stupid jokes and post silly poems and stories about Shakespeare being a muthafukka. But I hold down a highly stressful, high profile public job. And...I don't drink. Baclofen does work, it has saved my family, my career. It makes me able to handle life and has given my wife her sobriety after 20 years of drinking. Who knows what next week, month, year will hold. Maybe I will have a heart attack and die. Maybe my wife will start drinking again. Maybe after several years on Baclofen the effects wear off. But we are only in the first few years of its widespread use and it is working for so many people that it just cannot be ignored.

Don't always assume that people who post things which are passionate, slightly looney etc. are drunk. Hiccup. Ooops

[LittleLessBoozin']

Another note from Dr Ameisen

Otter;1097090 wrote:

Littlelessboozin'

Ultimately, who knows about Dr. Ameisen but himself. I think of myself as intelligent but I come on here and rant. I also rant at my family and my colleagues at work. I tell stupid jokes and post silly poems and stories about Shakespeare being a muthafukka. But I hold down a highly stressful, high profile public job. And...I don't drink. Baclofen does work, it has saved my family, my career. It makes me able to handle life and has given my wife her sobriety after 20 years of drinking. Who knows what next week, month, year will hold. Maybe I will have a heart attack and die. Maybe my wife will start drinking again. Maybe after several years on Baclofen the effects wear off. But we are only in the first few years of its widespread use and it is working for so many people that it just cannot be ignored.

Don't always assume that people who post things which are passionate, slightly looney etc. are drunk. Hiccup. Ooops

Hi Otter,

I was not implying that he was drunk; merely drawing the parallel between his post and the classical late night post that I have made myself many, many times!

What I WAS pointing out is that he quite simply seemed to be in a confused state of mind- rather than being concerned about his sobriety, my concern is whether High dose Baclofen for a sustained period has a mental health effect- hence my soliciting success stories from any long(er) term users.

Apologies for any unintended offence caused to anyone, but as I stated this is a big worry for me.

Paul.

[Cinders]

Another note from Dr Ameisen

Paul,

There are many long term users of high dose Baclofen.

Google on MS and Baclofen. You will find them. There are some there that are at 270 mgs and have been for ages. It is because they have an excruciatingly painful and deadly disease that they take Baclofen.

So do we.

There was a wonderful woman on these boards for a long time. She never did sober up.

She is now in a nursing home, does not know her husband or children. She is in her 40s.

She destroyed her brain with alcohol. I cannot give you her name because her husband asked for privacy but it is true.

HTH,
Cindi

[Winks]

Another note from Dr Ameisen

Otter;1097067 wrote:
I have to say that the preoccupation with side effects consistently misses the point.

Why don't people who feel this way write about the side effects of chemotherapy? We could have a thread devoted to a debate about whether is better to be alive with no hair or dead with a full head of hair.

I just don't see why anyone would expect Baclofen treatment to be free of side effects. Why would or should it be and so what. They go away! Just like the alcoholism.

No, the side effects do not "go away" magically when you are overdosing on a muscle relaxant/central nervous system suppressant. They do not. It does not matter that Ameisen and you and whomever absolutely refuse to acknowledge that the side effects are the problem. The entire problem with Ameisen's program, the fundamental flaw, is horrendous side effects. Were it not for that, then Ameisen's program would indeed be a miracle that he claims it is. What it is instead is a protocol that the majority of people who try it cannot tolerate in the long term. Many people cannot even do it in the short term if they hope to work for a living during the process. Just this board, just this week, is proof aplenty, but if you go back a bit, you will indeed see a repeating pattern.

And I think that you, Otter, work very hard to ignore the fundamental flaw in Ameisen's program, just as he does, but that tired chemo argument really needs to go. I find it horrible and very disrespectful of the people who must undergo such a nightmarish treatment. Full dose chemo is nasty, the kind of nasty that leads to being in an ICU unit with massive internal hemorrhaging and zero ability to fight infection - you know, the side effects. The risks of such aggressive treatment have nothing to do losing hair. How dare you make that comparison?

At any rate, I think the people who have hopped on Ameisen's bandwagon with the hope of profiting professionally (and you have confessed that as your personal "agenda") are in for a very big disappointment. Deservedly so. What we see at MWO is what it will be: people will be unwilling/unable to deal with the tremendous side effects in the long term, no matter how much you insist that the SE's don't matter, no matter how much Ameisen refuses to acknowledge that it's a factor at all, no matter how many people here perform as cheerleaders for baclofen, no matter how many unwary newcomers the cheerleaders drag into it. Reality is not going to bend for any of them, will not bend for Ameisen's ambitions, and will not bend for yours either.

Really, what do expect will come out of the study in the Netherlands? Proof that Ameisen's protocol is fundamentally flawed? If not, then I think you will be disappointed. Deservedly so. I think most GP's will not prescribe high-dose baclofen because they already see the problem: the protocol is not sustainable; the side effects preclude it.

In the meantime, at least three people this week have bailed on bac as the one and only true way (and it's only Tuesday), and they are going to try what you describe as a "monumental waste of time." I hope they do anyway. I hope they are not put off by your or Ameisen's questionably-motivated posts.

I hope that those who have tried baclofen and found it wanting are not put off by posting the reality of those experiences too. It's a drug, folks! It either works or it doesn't. There should be no "faith" required. There should be no cult leader upon which followers heap praise and feel endless gratitude. There should be no cheerleaders. But, I think the combination of a big pharma conspiracy, the dealing with horrendous side effects (and, hence, the idea that one has "earned" sobriety through suffering), and the idea that people have outsmarted it all holds incredible allure. That "allure" won't stand a chance against reality though. I really hate that about reality - it's very tenacious. It doesn't bend for anyone.

But perhaps a good way forward might be to acknowledge the good effects that some people have on baclofen, acknowledge its fundamental flaw, and acknowledge the good effects that other meds have for some people and move along. Baclofen is no more or less important than Naltrexone. Baclofen should not need a cult, replete with a glorious leader, hard-working recruiters, loyal followers, hated enemies and those hangers-on who hope to profit from it. It's a damn drug. It works for you or it doesn't. Pretty simple. It's not an earth-shaking discovery, it does not cure anything, it is not a religion, and it most surely is not the end-all, be-all of recovery from addiction, mental illness or MS.

Perhaps newcomers who are being drawn here from the general MWO forums (the ONLY reason why these kinds of discussions have not moved to the new baclofen) would have a clearer idea of what Ameisen's project really looks like - what the results really look like - what the reality really is regarding this protocol. It would be good if those newcomers could make an informed decision without being drowned in the propaganda of cheerleaders, fearless leaders and loyal followers. You know, provided the well-being of newcomers means anything at all.

[gratitude]

Another note from Dr Ameisen

TROLL, do you work for big pharma? grat.

[Cinders]

Another note from Dr Ameisen

Winks,

I take it you couldn't handle the SEs? This makes you incredibly angry with others who are passoinate about Baclofen's possibilities? Because you missed out?

I take it you can handle alcohol's SEs? It seems to me you are suffering from one of alcohol's SEs right now.

Cindi

[Florieanne]

Another note from Dr Ameisen

LittleLessBoozin';1097107 wrote:
I was not implying that he was drunk; merely drawing the parallel between his post and the classical late night post that I have made myself many, many times!

What I WAS pointing out is that he quite simply seemed to be in a confused state of mind- rather than being concerned about his sobriety, my concern is whether High dose Baclofen for a sustained period has a mental health effect- .

I believe your perception about his being "in a confused state of mind" is quite accurate.
Fortunately, this time, it can't look like a nauseous rumor spread by someone from the French forums.
I'd prefer to know he posted drunk than to think he didn't.
Mental confusion /impairment are ones of bac's SEs as bac is a CNS depressant.
And we don't know anything about the importance of this SE when taking high bac on the long run.
Ameisen is the only person who could speak about that, but he won't.
He can't even stand dealing with the SE.

Really good posts Winks and everyone whose critical mind has not been impaired.

F.

[Murphyx]

Another note from Dr Ameisen

Winks;1097124 wrote: No, the side effects do not "go away" magically when you are overdosing on a muscle relaxant/central nervous system suppressant. They do not. It does not matter that Ameisen and you and whomever absolutely refuse to acknowledge that the side effects are the problem. The entire problem with Ameisen's program, the fundamental flaw, is horrendous side effects. Were it not for that, then Ameisen's program would indeed be a miracle that he claims it is. What it is instead is a protocol that the majority of people who try it cannot tolerate in the long term. Many people cannot even do it in the short term if they hope to work for a living during the process. Just this board, just this week, is proof aplenty, but if you go back a bit, you will indeed see a repeating pattern.

And I think that you, Otter, work very hard to ignore the fundamental flaw in Ameisen's program, just as he does, but that tired chemo argument really needs to go. I find it horrible and very disrespectful of the people who must undergo such a nightmarish treatment. Full dose chemo is nasty, the kind of nasty that leads to being in an ICU unit with massive internal hemorrhaging and zero ability to fight infection - you know, the side effects. The risks of such aggressive treatment have nothing to do losing hair. How dare you make that comparison?

At any rate, I think the people who have hopped on Ameisen's bandwagon with the hope of profiting professionally (and you have confessed that as your personal "agenda") are in for a very big disappointment. Deservedly so. What we see at MWO is what it will be: people will be unwilling/unable to deal with the tremendous side effects in the long term, no matter how much you insist that the SE's don't matter, no matter how much Ameisen refuses to acknowledge that it's a factor at all, no matter how many people here perform as cheerleaders for baclofen, no matter how many unwary newcomers the cheerleaders drag into it. Reality is not going to bend for any of them, will not bend for Ameisen's ambitions, and will not bend for yours either.

Really, what do expect will come out of the study in the Netherlands? Proof that Ameisen's protocol is fundamentally flawed? If not, then I think you will be disappointed. Deservedly so. I think most GP's will not prescribe high-dose baclofen because they already see the problem: the protocol is not sustainable; the side effects preclude it.

In the meantime, at least three people this week have bailed on bac as the one and only true way (and it's only Tuesday), and they are going to try what you describe as a "monumental waste of time." I hope they do anyway. I hope they are not put off by your or Ameisen's questionably-motivated posts.

I hope that those who have tried baclofen and found it wanting are not put off by posting the reality of those experiences too. It's a drug, folks! It either works or it doesn't. There should be no "faith" required. There should be no cult leader upon which followers heap praise and feel endless gratitude. There should be no cheerleaders. But, I think the combination of a big pharma conspiracy, the dealing with horrendous side effects (and, hence, the idea that one has "earned" sobriety through suffering), and the idea that people have outsmarted it all holds incredible allure. That "allure" won't stand a chance against reality though. I really hate that about reality - it's very tenacious. It doesn't bend for anyone.

But perhaps a good way forward might be to acknowledge the good effects that some people have on baclofen, acknowledge its fundamental flaw, and acknowledge the good effects that other meds have for some people and move along. Baclofen is no more or less important than Naltrexone. Baclofen should not need a cult, replete with a glorious leader, hard-working recruiters, loyal followers, hated enemies and those hangers-on who hope to profit from it. It's a damn drug. It works for you or it doesn't. Pretty simple. It's not an earth-shaking discovery, it does not cure anything, it is not a religion, and it most surely is not the end-all, be-all of recovery from addiction, mental illness or MS.

Perhaps newcomers who are being drawn here from the general MWO forums (the ONLY reason why these kinds of discussions have not moved to the new baclofen) would have a clearer idea of what Ameisen's project really looks like - what the results really look like - what the reality really is regarding this protocol. It would be good if those newcomers could make an informed decision without being drowned in the propaganda of cheerleaders, fearless leaders and loyal followers. You know, provided the well-being of newcomers means anything at all.
Hic!inkele:

[terryk]

Another note from Dr Ameisen

Wow, there sure are some spooky anti-baclofen black-ops going on around here... I agree, it *does* sound like big pharma trolling.

I'm not a baclofen cheerleader, but if I was it would be because I'm overjoyed that baclofen helped save my life and gave me a future worth living. Baclofen Works! And I had severe side effects during my titration, but managed to hold a job until (and after) I reached my switch and indifference to alcohol on 9/26/10 at 280mg/day of baclofen. Today I'm @ 240mg/day and 99% side effect free.

-tk

[Cinders]

Another note from Dr Ameisen

I am so sick and tired of hearing people say that NOBODY KNOWS about the long term effects of high dose Baclofen therapy.

Patients who suffer severe spasicity have been taking high dose Baclofen for years administered through an intrathecal pump.

Here is one link:
Intrathecal baclofen for intractable spasticity of spinal origin: results of a long-term multicenter study; Journal of Neurosurgery - 78(2):Pages 226-232

Intrathecal baclofen for long-term treatment of spasticity: a multi-centre study. -- Ochs et al. 52 (8): 933 -- Journal of Neurology, Neurosurgery & Psychiatry

Chronic intrathecal baclofen administration for control of severe spasticity; Journal of Neurosurgery - 72(3):Pages 393-402

NOTE THE DATES ON THOSE ARTICLES!! They are from the 90s. Note intrathecal Baclofen in HIGH DOSES has been around a long, long time. Some people's lives would be intolerable without it.

So, I am sick and tired of this, "no one knows" BS and I am sick and tired of people attacking OA. His English does not always come across well. My French would be worse.

Those who dare to say he is "in a confused state of mind" are just critics because they have some hidden agenda. OA's agenda is in your face. He is sober. I find it unlikely that Florie, Tracy/Winks are.

HOWEVER, I take great umbrage with

everyone whose critical mind has not been impaired.

Thank God for ignore. I am availing my critically impaired mind of it right now.

Cindi

ps I truly cannot stand "those who know better" than the rest.

pps I also cannot understand why when I have been posting about long term high dose Baclofen therapy being used for MS for many years, people just act like that is not a known fact. The links above should hopefully alleviate this discussion.

ppps I do know of those suffering long term affects from high dose alcohol. It appears a few are posting on this thread.