Dr Ameisen got addicted again

[jim65]

Dr Ameisen got addicted again

EXACTLY!!!

[jim65]

Dr Ameisen got addicted again

desperados, please be easy. I have put out something that I think should be of importance to all of us and I hope it stays on subject. Your views and opinions as are others are of great importance. Jim

[StuckinLA]

Dr Ameisen got addicted again

Hi again, Jim,

Red has a great point. Dr L said he wanted to talk with me weekly as well, but it isn't really the case. The good doctor is very set in his ways, in a lot of ways, but he will help you obtain legal bac here in the US. Which is much cheaper than ordering online. It's also kinda nice to have a script, for sanity's sake, ya' know?

So, I'm too sleepy at the moment to read your first post, and I apologize for that. But are you on bac now? What is your goal? Indifference or craving reduction? Abstinence or moderation? What dose are you on now? How are your SEs?

I again have to second Red, and say that the nonexistent drama between L and A is far less important than what you can do for yourself right now, and over the upcoming weeks/months/however long. Would we like more direction from Dr A? Hells yes, I'm sure a lot of us would. He has posted here a few times, but his attention is directed elsewhere. From what I can tell he's happy that we have each other, but he's leaving us alone.

Wow, guess that gets us into pretty religious territory, all of a sudden. Is God just the watchmaker who assembles all the pieces but then leaves it to run on its own? Er, sorry again, like I said I'm just tired.

Point is do what you gotta do, but read a lot of what's here. Don't necessarily count on Dr L, and don't wait for the clouds to part, and the trumpets to sound, for Dr A's return. 'Cause that doesn't look like it's gonna happen.

[Ne/Neva Eva]

Dr Ameisen got addicted again

I'm not going to weigh in on the whole drama that seems to be an undercurrent here. I can share my personal experience.

I have been a 'patient' of Dr. Levin's for more than two years. I put it in quotation marks because what that means for me is that I get regular refills for my legally prescribed baclofen from Walgreens or Rite Aid or whatever.

I patently disagree with any suggestion that we stay at the switch dose, or anywhere close to it. My personal experience, and the experiences of others that they've shared here or off of the public forum, would indicate that taking that much baclofen for an extended period of time is not really possible or conducive to a productive life. There are only a couple of people I know who have been able to maintain anything close to their highest dose, and those took a loooooong time to get there.

My "switch" dose was 320mg. I had lots of side effects, though less at 320mg than in the high 200s. I have titrated up and down since then. I found a comfortable, contented place at 140mg. I don't have any side effects and I don't crave or even think about alcohol. Even when I drink it. (very rarely and not very much. Because I don't care about it anymore.)

I would humbly suggest that though it seems alarming that Dr. L has a very different perspective than we do around here, it could just be that he doesn't know and doesn't want to know. He wouldn't be the first (and goodness knows, not the last) psychiatrist who is not in touch with what his patients are experiencing.

I tried to tell him my experience, and I've tried to tell him that we (meaning the people I know on MWO) experience SEs. I've also tried to tell him that staying at the switch dose is counterproductive. This is not a humble opinion. It's a strongly held belief. But how and why to argue with the man? I, like most of us, have no interest in biting the hand that feeds...A legal supply of baclofen, the fact that he is willing and able to help so many of us and at so little cost to us, means more to me than anything else related to this discussion.

The conclusion I've come to is this: Many of us not only don't make it up to a 'switch' dose, most of us titrate down from that when we do because we have no choice in the matter! The option of baclofen (a lousy drug for the purpose, but an highly effective one) is life altering, in the most profound and beautiful way there is. I spent more than 20 years addicted to alcohol, and decades trying to get free from it's grip. I have been to rehab three times, counseling since my early teens, seen specialists, been 'saved' at revivals and tiny little churches, tried nutrition and exercise and everything else I could think of to get well.
In March 2010 I found Ameisen's book in the library. In October 2010 I started taking baclofen for the third time. On February 3 2011 I had my last compulsive drink.
My husband started baclofen shortly after that. (April? I can never remember.) And by July he had stopped drinking alcoholically. (I don't exactly remember that either! sheesh. We should have celebrated or something. But considering we can't keep track of our wedding anniversary...:H Not that these particular anniversaries aren't WAY more important than a wedding. They are. Not being defined by alcohol anymore is the single most important thing in our lives. Bar none.)

I hear irregularly from or about Dr. A. He seems to be doing fine. He is apparently working on stuff related to baclofen and alcohol addiction/dependence. The last email I got from him was a blanket email and it was in French! I don't read French and have yet to have google do a poor job of translating it. It's irrelevant to where I am and what matters to me. I wish the best for him, credit him for giving me a life I could never have dreamed of, and hope he reaps incredible rewards for his discovery and more importantly his courage.

I could not care less whether or not he relapsed. (It's the nature of the disease!) But there was a time when I was obsessed with the concern, so I understand your consternation. He's just a man, Jim. Just a guy with a brilliant mind and a willingness to take a lot of a medication in the hopes that he could get free of his own addiction. Then he was willing to write a book and take the wrath of all of the medical community, not to mention the very entrenched and often belligerent recovery community. The things people say to and about him are shocking. Poor guy.

Not to mention, of course, the angry drunks who lash out at every opportunity because they are still in hell. You will find them here, occasionally. Just be aware that we are all in different places, okay? You will find many reasons, and many people who will go to great lengths to tell you it is a foolish pursuit and it will not work. I feel for them. But they're wrong. It worked for me, and for mine. That's enough for me.

I'm still here because the support and friendship I found here is what got me through all of that fear and anger, and I'm trying to pay it forward. I have no intention of "spreading the word" as it were. Baclofen is one of a kind, everyone should know about it as an option. But it is up to each of us to choose our own way out.

When and if you're ready to try it, we'll be here to help and support and laugh with. There are also many other routes to freedom that can be found on MWO. Whatever you do, Don't Give Up.

~Ne

[COSGringo]

Dr Ameisen got addicted again

Desperados. Stop lurking. You sound like a trouble maker.
Please add some input instead of just commenting.

jim- Dr. L is just a tool. You need to make this happen on your own. It does work but the SE's are there and not everyone can deal with them. No doctor is perfect and cannot tell you how everything will be. They have faults like everyone else. Levin seems to ignore the SE's. That's him and there's no way he has not had more failures. Hang in there.

[LibraryGirl]

Dr Ameisen got addicted again

Great post Ne. You are articulate and wise, my friend.

[jim65]

Dr Ameisen got addicted again

No I haven't started baclofen yet. If I do, I have the good to go from Dr. L. I guess The only people I can trust are you.

[COSGringo]

Dr Ameisen got addicted again

Well I don't know your history but bac works for a lot of folks. It sure helps me.

I think it's a discovery process. Everyone is different. Dr L means well and is right about some things.

Maybe it will work exactly how it says it will for you.

Don't sweat the small stuff. Just be armed with a lot of info and don't over analyze the data.

Good luck!

[redhead77]

Dr Ameisen got addicted again

I'm not in the know anymore, if I ever was. I've been around here for a little while, and I started bac in February 2011. I've had phone appts with Dr L and seen him in his office a number of times. We would spend the times in his office usually discussing bac.

The "stories" I was referring to were specific things you mentioned, Jim, after your conversation with him: Dr A's visit to Chicago, a radio show, and relapse. Since I haven't had an appt with him in at least 6 months (he writes me generous refills and I've gone down, so I haven't had a need to see him), things could have changed. There could have been a different trip to Chicago, a new radio show, ect. The last I heard, and this was over 6 months ago, Dr A was on a dose of like 70 mg or something. That's what he wrote here. He also stated he doesn't believe in staying at one's switch dose. As Ne has mentioned, relapse is the nature of our disease. If that were the case with Dr A, at least he had the option to go back up.

Here's what I do know for sure. Dr L has provided me with a script for bac for the last 18 months. I'm sure he'll continue to do so. I've talked to him about my SEs and I've had plenty. He hasn't denied them. Most don't seem to surprise him. He listens and responds in a kind and gentle manner. Early on, when I started taking bac, I decided to quit my job because I was having so many SEs. I decided to titrate up more quickly than he recommended, and shoot for the switch. I had to take out catastrophic medical insurance. This insurance didn't cover routine doctor visits, it only would pay for hospitalization. I told him I didn't have insurance and little extra money. He told me it was ok, and he wouldn't bill me during that time. I had a number of appts both on the phone (I actually did talk to him regularly for a period of time, it wasn't weekly, but it was often) as well as office visits. He didn't charge me a penny for months. When I got my new insurance, he started billing that insurance then. And he's careful to bill without the diagnosis of alcoholism to make sure the insurance companies don't get a hold of the info. I'm not the only person he hasn't charged, or has charged sliding scale rates to. People have reported it many times. He's clearly not out to make a bunch of money on us. Why he's determined to tell people there aren't SEs and report a success rate of 99.4%, I'll never know. I don't agree with it. But I don't think he's malevolent, either. I think he truly believes in baclofen.

Around the time Dr A came online and stated he did not believe in staying at one's switch dose (I think this was late last fall) I emailed him and tried to get to the bottom of the miscommunication. I'd just had an appt with Dr L, where he told me we should stay there, per Dr A's recommendation. Dr A never directly responded to any questions I had regarding the nature of their relationship and why there's miscommunication. He told me he didn't know why Dr L recommends that. It was obvious they've had, or do have contact (and he stated he helps him with his most difficult patients), but he never elaborated on the rest. I decided at that point, that I wasn't going to waste the energy trying to figure it out anymore. I had what I needed and the rest didn't matter...except with regard to staying at the switch dose.

I tried to stay at my switch dose (or the dose for me that really impacted my drinking) for a couple of months. I did it twice under the advice of Dr L. I couldn't function well, and eventually had to come down. I think that's what happens to most people, but it might also depend on the dose someone switches at. Some people do switch at lower doses. Mine was always in the 200s. If you decide to try baclofen, you can see what happens. If you tolerate the dose that impacts your drinking the most, then you could stay at it for a while. If you don't, you can always titrate down.

[AmyC]

Dr Ameisen got addicted again

Very well said Ne. I think you stated what most of us are feeling and best of all Bac works but its tailored different for everyone.

[jim65]

Dr Ameisen got addicted again

Your replies are defiantly welcomed and appreciated. Forgive me for bringing up a subject that brings about a lot of emotion. The choice to try baclofen is a big one and I do not take it lightly. Thank you all for being not only available, but wearing your honesty and courage on your sleeve. To come out and say to the world that yes I have a problem takes away the protectiveness of being vulnerable to the scrutiny that everyone must go thru if they are to try and conquer addiction and or mental illness. It seems for the most part they are like peanut butter and jelly. They mostly come together.(Mental Illness and addiction) but not always. I am so amazed at your successes because it seems to good to be true. How can someone like me ever change? Maybe you've been there. At times I can tell myself that All I need to do is use a little will power. (Will? What? Went away again!), but tomorrow will be different, right? Jim

[Ne/Neva Eva]

Dr Ameisen got addicted again

Thanks, peeps, for the props. Rock on yourselves!

Well said, Red!
Great summation, COS.

Hang in there, d.

Jim,

About trusting: Dr. L has proven himself incredibly trustworthy, in my book. He knows a lot of personal information about me. He would never divulge that, never share my info, never label or limit me based on the fact that he treats me (with medication) for alcoholism. He just doesn't know everything. It's enough for me that he knows that it works and HE is willing to trust ME. That is so huge isn't it? (EDIT: What's more, he's the only physician I know of in this country (and in most countries) that is willing to provide enough baclofen to get to the switch/indifference. While bac at lower doses may be effective to manage cravings, it seems pretty clear that bac at really high doses is what's needed to get to the point where one is no longer addicted...I am so grateful to Dr. L that words can't express it!)

There are many people here whom I implicitly trust too. I weigh everything I read here based on what I can find out about them by reading their posts. Or asking them directly in a private message (a PM).

Will plays a part in all this too, but not in the way that you might think!

Your last post pretty much sums up where I was a couple of years ago. It moves me!

I'm really glad that you asked the question before you made a decision! (I suppose any time would work, but man it is lousy to go into these big life changing decisions with fear and doubt and insecurity clouding them. Bad enough that booze makes everything that much more challenging!)

Ask away. Read a lot. Those two things alone will get you that much closer to being done with addiction. I know it's hard to believe, but it's what I did and I'm healthy and free for the first time in my life. Literally.

Keep in touch and let us know what the plan is!

[YouKayBee]

Dr Ameisen got addicted again

I personally think no-one knows. I don't dispute that Baclofen is useful and can help in the battle against alcoholism BUT I also know it's not the perfect cure. There isn't a perfect cure and Baclofen comes with a lot of other complications and problems. I also have a good idea that Ameisen drank so much before he discovered Baclofen that he has more than likely permanently damaged his brain.

Aside from this Drs are shooting in the dark. Yes baclofen addresses parts of alcohol addiction but it's not an exact science (just as alcoholism isn't an exact disease).

My lifestyle and my physiology wasn't compatible with HDB one bit, so I went for another option which fits better however even that isn't perfect - far from it.

We are all human beings, fallible and to hold anyone up would be wrong. Perhaps one day there will be the perfect cure, I actually doubt it very much so in the mean time we have to make do with the tools and medications available.

[LibraryGirl]

Dr Ameisen got addicted again

I have never tried baclofen, but the fact that I deeply respect some of the members here who are enthusiastic about it's benefits means that if I ever feel I need (to) and cannot control AL on my own, it will be definitely something I would consider.

[TexasAg]

Dr Ameisen got addicted again

I just got off the phone with Dr L for our weekly call. I was kinda freaked out because of the title of this discussion and the first few posts. I probably should have read through all the posts before I spoke to the doc, I would have calmed down. It's probably best to heed the Bac Veterans advice and not waste more energy on who said what but I asked Dr L direct questions about Dr A and dosage. Hopefully it'll allay some fears. I'll try not to misquote him but I just got off the phone and will try to be as accurate as possible.

Q: There are rumors that Dr A fell off the wagon and is addicted again.
A: Dr A is fine. He tested going down in dosage years ago like any good doctor researcher would but found himself in trouble and quickly titrated back up.

Dr L didn't go into detail of what trouble meant and I didn't ask. I trust the good doctor would not talk about my details and I'm sure he respects Dr A and won't give out his details. I forgot to ask if he titrated back up to his switch dose.

Q: There is a lot of confusion about whether to stay at the switch dose or titrate down.
A: You should stay at your switch dose.

I haven't hit my switch dose, I'm only at 80mg, so I can't comment on whether that is feasible or not. But I agree with the Vets that this is not an exact science and you should listen to your body. I do know that I look forward to hitting the switch (God willing) and having to make that decision.

Up until a few days ago I didn’t have any side effects except when I went up in dosage I would feel tired. But by the next morning I’m fine. I have noticed that my brain is calmer, I don’t feel as stressed anymore. I don’t get the feeling of wanting to disappear. I know it is working because I’m going through a very stressful situation at home and I’m dealing with it in a more rational manner. I’m not getting so many extreme irrational thoughts. I’m not obsessing on things as much.

Dr L is aware of SE's. The past couple of days I haven't been able to sleep more than 3-4 hours a night. This could be from Bac, but it I'm sure it also has to do with the complications at home. He said I need to get through this and JKTTDP. I'm also gonna get a prescription of .25mg of Alprazolam (sp?) to help me push through this insomnia.

I trust the veteran posters. They have helped me tremendously. Baclofen is helping and I would suggest taking the plunge as scary as it seems.

Cheers!

Day 28 on Bac - 80mg
AF - 8/8/12
BBF (binge beast free) – 8/8/12