A Meta-Discussion on Baclofen

[coalfire]

A Meta-Discussion on Baclofen

Ukblonde;1101870 wrote: We also need to realise that Baclofen isn't going to be for everyone. I was told yesterday by a leading UK addiction expert that Baclofen isn't suitable for me, in fact it would be a waste of time and further misery with side effects if I were to continue
.

Have you decided to stop it then? Just as an aside is he anti Baclofen or anti Baclofen in your case?

[coalfire]

A Meta-Discussion on Baclofen

Greg;1101832 wrote: Many alcoholics don't have the luxury of sitting back and drinking for years and years more until something perfect comes along for them. A perfect treatment may never arise, or it may only come too late for many people. What about the many years of life wasted away as a person gets older while still living in an alcoholic fog? Some may not be lucky enough to live through the hell of drinking 10-15-25 or whatever drinks each day/night for years if they don't do something to try and stop or moderate.

:applaud:

We owe it to ourselves to try ANYTHING and I mean ANYTHING that might help us. Rehab/AA/meds/alcohol substitutes -the lot.Keep going until something hits.Nothing is perfect but something or some combination of something has your name on it.(LO for me)

[Guest]

A Meta-Discussion on Baclofen

I went to see Dr Chick who is the leading specialist in alcoholism in the UK. He isn't for or against Baclofen and in fact Otter has said here that he prescribes for his wife. Dr Chick has read all the research available very carefully, and is very interested in its use - he is the author of Alcohol & Alcoholism journal and is an internationally respected expert in this field. I went to see him expecting him to prescribe for me. After careful questioning, he has told me baclofen will not work for me. He also said that another sign was when the side effects didn't dissipate after 3-4 weeks at 180mg. Every single day was hell for me, he said if it had been working for me they would have eased within days.

He has strongly indicated that ODAT, and some of the principles AA follow would be more successful.

As far as I can see I have been to the highest person I can with this, someone who is interested in using Baclofen and he has told me I'm wasting my time, and suffering needlessly.

I may use Baclofen occasionally for restful sleep but from today I am no longer baclofen.

[Guest]

A Meta-Discussion on Baclofen

A bit more clarification about the Doctor I saw yesterday, here is an excerpt from an newspaper article published about Dr Ameisen and his baclofen discovery. Below the main article is this;

One of those persuaded by Dr Ameisen's findings is Dr Jonathan Chick, consultant psychiatrist at NHS Lothian Alcohol Problem Services and chief editor of the journal Alcohol And Alcoholism.

Dr Chick was the first to publish Dr Ameisen's discovery. 'While this is a controversial area, we believe the research into baclofen in treating alcoholism is merited,' he says.

'We know baclofen can't help every alcoholic; but in normal treatment programmes, two-thirds of patients relapse within three months. On baclofen, only half of them did.'

Read more: Could this pill cure alcoholism? Doctor drinking himself into an early grave tells of his 'fairy tale' recovery | Mail Online


This appeared in a national newspaper in 2009. I'd say he isn't an 'anti', he merely said it won't work for me. Considering how I've struggled with the SEs I'm not going to continue torturing myself.

Seems it works for some, but not for others.

[coalfire]

A Meta-Discussion on Baclofen

Well you wont get higher in the UK than Dr Chick. I am sorry it didnt work out for you. You must be so disappointed. Have you decided what to do next? Whats your history with other meds eg Naltrexone?

[coalfire]

A Meta-Discussion on Baclofen

cross post. No I know who he is. He is not an anti.

[Cinders]

A Meta-Discussion on Baclofen

UKB,

I am glad you went to see him and discussed this.

You have been suffering. Horribly. You have felt badly about yourself because Baclofen wasn't working for you, you have given it your all. Titrate down and let it go.

I suffered the same kind of angst because of my inabilty to take Topa and Campral. It threw me into a tailspin.

Do not go there.

Please, I ask of you, do what you need to get well.

You are worth it and you deserve it.

I sent you a pm saying the same thing and I say it here.

Let it go and do whatever it takes.

Love,
Cindi

[Guest]

A Meta-Discussion on Baclofen

Coalfire I am not dissappointed in fact I am completely and utterly relieved. At last I have some proper guidance, and I can see the way forward. My friend who went with me (he advises this) said he could see the way in which I changed and started to blossom again when we came out of the appointment. I had struggled so long with it you see.

Dr Chick asked me about things I've used in the past and suggested I go back to living ODAT, also he spoke in high regard about AA. He didn't tell me to go back but said that there is a lot of wisdom in the rooms, and to ignore the tub-thumping "You must go to 90 meetings/get a sponsor/do what we say" gang if I do.

I have gotten my life back and feel great. I am sad I lost those months because I put my neck on the line, lost direction and became isolated.

Can only look forward now. I've got a prescription for naltrexone, and may use that to see if it helps but I am going to be concentrating on other areas from now on.

[Cinders]

A Meta-Discussion on Baclofen

Darn,

I am so sad you lost so much time because of trying Baclofen.

It is a testament to your spirit that you did. Most would have just quit and done something else.

The athlete in you, the warrior, wanted to make it work.

You will beat this, UKB. I have complete faith. You are a warrior.

Cindi

[Otter]

A Meta-Discussion on Baclofen

Ukblonde;1101938 wrote: A bit more clarification about the Doctor I saw yesterday, here is an excerpt from an newspaper article published about Dr Ameisen and his baclofen discovery. Below the main article is this;

One of those persuaded by Dr Ameisen's findings is Dr Jonathan Chick, consultant psychiatrist at NHS Lothian Alcohol Problem Services and chief editor of the journal Alcohol And Alcoholism.

Dr Chick was the first to publish Dr Ameisen's discovery. 'While this is a controversial area, we believe the research into baclofen in treating alcoholism is merited,' he says.

'We know baclofen can't help every alcoholic; but in normal treatment programmes, two-thirds of patients relapse within three months. On baclofen, only half of them did.'

Read more: Could this pill cure alcoholism? Doctor drinking himself into an early grave tells of his 'fairy tale' recovery | Mail Online


This appeared in a national newspaper in 2009. I'd say he isn't an 'anti', he merely said it won't work for me. Considering how I've struggled with the SEs I'm not going to continue torturing myself.

Seems it works for some, but not for others.

Yes, UK, your are right. And since you have decided to draw me into this, it deserves a response.

We first met Dr. Chick in his Edinburgh office in April 2010 to get his help in prescribing over 100 mg per day. He started the session by breathalyzing my wife. He had none of my wife's medical records so he was advising blindly. We had an hour for ?180. He said he did not prescribe over 100mg per day. He said he had not had any experience with anyone who had hit the switch at over 100mg and said it was not good for those who suffer from bi-polar because it caused detachment from reality at high dose. He then met with my wife privately and told her she should go to AA and said he would arrange for someone to take her. This without any knowledge that she had been seriously assaulted by a fellow AA member, left for dead, and he received a jail sentence for it.

She went along with this, was driven to an AA meeting by a woman who did not know why my wife was taking Baclofen and that it was being prescribed for alcoholism. She never went back.

I asked Dr. Chick whether there were any doctors closer to us who prescribed Baclofen. He said there were none. He gave no instructions on how to take Baclofen through the day and there was no discussion about its effects at all.

This then confirmed our GP's view that she should not prescribe over 100 mg so we were in a desperate situation. My wife was sober for periods but relapsed. She continued to hide drink around the house and was drinking moderately without telling me, so I now discover. This went on until July when we went on holiday. Various mega stressful events then occurred and she relapsed big time. Her family were totally unsupportive and I felt like a fraud because even the top doctor in the UK was not supporting us so I MUST HAVE BEEN WRONG!!!!

So, I got in touch with my MP, wrote to the Home Office,forced my way into the local drug advisory center without an appointment and collared one of their staff, started a web site, got heavily involved here, engaged with Phill and Danielle F, sent emails to Dr. A.

The result:

Shock!

There is a doctor here using Baclofen, on the NHS, he works with Dr. Chick, he uses it over 100 mg, it does work, Dr. Chick treats a different type of patient.

By the time we got going with the treatment two months later the relapse on low dose, wrong dosage Baclofen seemed irreversible and combined with a serious concussion from a fall, stroke, onset of a Merina coil induced peri menepause, sound sensitivity, woman next door with three brats screaming all day but with political connections, my wife got herself into trouble by...banging doors in our house and stomping up the stairs out of frustration over the noise coming from next door. I took her to A and E at our new doctors hospital for a detox and in-patient Baclofen treantment and admission to a psychiatric hospital, all supported by a senior consultant within the hospital. An A and E doctor phoned me and told me to come an pick her up, did not know our consultant, was not interested... my wife was an alcoholic, get out. I spent the next week trying to stop the drinking, high dose Baclofen stopped a 2 mongth binge of up to a litre of Vodka a day within hours.

Just think about what you are left with, a chronic, dry alcoholic, not craving, drinking lots of soda pop. Nothing left of her brain though. No idea what was going on around her. When I and our doctor tried to get her a pshychiatrist for some haloperidol and I tried to get her into hospital again when she stopped taking Baclofen, still not understanding how to take it, she was taken to the wrong hospital where they don't use Baclofen and allowed to sit long enough to flip out and think a nurse was trying to attack her. So there, that is what bad medicine does for you.

Once she was home again, we got in touch with Phill and she has never been better; but for what when no one wants to recognize what she has done? She has had a drink because she at one point was so depressed about her situation she said she wanted to die, stopped the Baclofen and went down the plug hole. She pulled out of this with Baclofen and then wondered what the hell she had done. I am in trouble over this as well because I don't have any understanding of the effect of alcohol on our family. Not knowing what I have done about it, they would say that.

In the meantime, the old school social workers descended on us. Never heard of Bac, told us to get traditional help from doctors with no experience with alcoholism, let alone Bac. Set us up for failure and we have been warring with them ever since. The success my wife has had and that there are now doctors in our area who are actively seeking out advice on how to prescribe Baclofen for their patients has meant all the non Bac professionals who were foisted on us have now run for the hills.


No, Baclofen is not for everyone and after all this is a forum for any alcoholic and any treatment. Look at the other forums here and judge for yourself how successful the other methods are.

That is the dark side; alcoholism untreated, ignorance, unwillingness to accept change, prejudice, incompetence of doctors, misunderstanding of dosage even when prescribed, on-line purchasing of Baclofen without medical supervision and the complete hypocrisy of governments who say they are interested in reducing alcoholism but have not spent a penny on looking into any medical advances in this field, whether that is in relation to Baclofen, Nal, Topa or anything at all.

I heard something on the radio the other day "first they ignore you, then they laugh at you and then you win".

They have stopped laughing.

[Guest]

A Meta-Discussion on Baclofen

I thought the misunderstanding of dosing was simply because enough trials haven't been run. They really do not know what they are doing, as neither do we.

[Otter]

A Meta-Discussion on Baclofen

Yes, there are few people who fully understand its use.

Having said that, our doctor does and so does Phill, whatever anyone may think of him.

[redhead77]

A Meta-Discussion on Baclofen

Ukblonde;1101949 wrote: Coalfire I am not dissappointed in fact I am completely and utterly relieved. At last I have some proper guidance, and I can see the way forward. My friend who went with me (he advises this) said he could see the way in which I changed and started to blossom again when we came out of the appointment. I had struggled so long with it you see.

Dr Chick asked me about things I've used in the past and suggested I go back to living ODAT, also he spoke in high regard about AA. He didn't tell me to go back but said that there is a lot of wisdom in the rooms, and to ignore the tub-thumping "You must go to 90 meetings/get a sponsor/do what we say" gang if I do.

I have gotten my life back and feel great. I am sad I lost those months because I put my neck on the line, lost direction and became isolated.

Can only look forward now. I've got a prescription for naltrexone, and may use that to see if it helps but I am going to be concentrating on other areas from now on.

I'm glad your okay with it UKB, and you have a new plan in place. There is no question, you have worked for it. It's affected your career, and you've suffered hideous side effects (including depression, suicidal ideation, and isolation). Those alone are enough to say game over with baclofen.

Baclofen is a powerful drug. Like with any other drug, it won't be tolerated by everyone. Everyone won't find success with it. Whether it be 50% or 20%, who don't. That's one of Dr L's greatest downfalls. There is no drug that has a 99% success rate. Plus, his constant statement that there should be NO side effects. I don't know of anyone who has done this without any side effects.

We all have to find our own way, and then put what we can into it. If one thing fails, get up and try the next. Keep on keeping on.

Which you my friend continue to do.

I can't wait to hear about you and naltrexone. I was going to try naltrexone before I tried baclofen. I hope this is the answer for you.

[Otter]

A Meta-Discussion on Baclofen

Florieanne;1101695 wrote: You're a brilliant and gifted person Winks.
Very brave too.
There are quite a few of us who think that whatever it is " something here is just not right" ( it's gotten even much worse on the French forums in France)

And we're not the only ones to think there's somthing wrong.
A quote from DG on Ne's thread:


Thanks for posting Winks.
Florie

Florie, and Winks, if you want to join in.

It seems you think that this is a debating forum so I would like you to put your position on this issue:

It is a matter of statistics that about 2 million people will die from the effects of alcoholism next year.

Question: How do you feel that this thread and your spreading of doubt about the efficacy of Baclofen and information about its side effects which is already widely known will prevent the deaths of any of those people? What is it that you are doing here that is going to stop even one of those people who are not engaging in this debate, from dying of the illness?

I ask this because you seem to be using the word "brave" very loosely. Brave to do your own thing regardless of the consequences to this treatment of your disparaging it when it has the potential of saving other people's lives? Brave to encourage people NOT to use it because it causes mental confusion to you so that you cannot do your dissertation while others cannot even get out of the house from one week to the next? Brave because you mock people who are "desperate" because someone they love is dying in front of their eyes. I don't see how it is brave to tear people down who are trying to save their own lives and others?

To me you are both the victims of your own inverted snobbery. The people who have devoted their professional lives to finding a cure for this are somehow disingenuous because they are making a career of it, helping others to stay alive, while you are "brave" either because you are abandoning it because it has side effects or because you think that this forum is for the "average Joe" who just wants a bit of help without getting all bogged down in the science of it. If it doesn't work for Joe then that is just fine because average Joe can probably get well some other way. Maybe average Joe has a good plumbing job too. Well there are a lot of people who are not average Joe, don't own a computer, don't have any of your advantages in life.

This pill can help them. What are you doing about it Florie, Wink? Or are you not interested in down and out alcoholics. Not in your league?

The emperor has no clothes? Neither do you.

[coalfire]

A Meta-Discussion on Baclofen

Uk you sound very positive. I am glad that you have a plan in place. You are to be congratulated for not letting this setback defeat you. When something didnt work for me I tended to go into a slump for ages.

You have been through the wars Otter,there is no doubt about it.Is there an end in sight for you? How long before you think this legal hoo-ha will draw to a close? Does your wife feel secure in our sobriety now(well as much as anyone does?) I really hope that you are going to be able to move on with your family life soon. This level of stress would kill an ox.