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[Ne/Neva Eva]

How about a place for people who have found that they did not have an easy time with baclofen?

A place to share, without hyperbole or drama, the things that can go wrong.

I'm putting it here because I think some people think that by extolling the virtues of this very important medication, we ignore the possible downsides. Or worse, that we deny that they exist.

The side effects that people struggle with can be found on just about any thread there is, since many of us have some side effects. I'm thinking specifically about the threads (or people) who have really awful experiences and feel the need to share them in order to warn other people about it.

Please keep in mind a couple of things: Very often the people who share this kind of information are in a place where they think that baclofen is the root of all evil. Not true. Pay attention to the way in which people take it (or don't take it) when everything goes to hell. And then...Don't Do It.

It's not rocket science. But it is neuroscience, and if you're a dumbass about it, it can be painful. just sayin'

[Ne/Neva Eva]

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I was looking for a thread that I thought Terryk started related to this subject but can't find it. Here's an excerpt from a different thread. Hope he doesn't get annoyed that I copied and pasted it. If he does, I'll have to erase it.

terryk;1085364 wrote: I had a bad experience with rapid titration (I posted a bit of it here before). It involved complete detachment with reality, constant visual/auditory hallucinations, rapid pulse/high bp, and severe electric shocks to my hands that caused me to drop anything I was holding for more than 15-20 seconds (many broken dishes and glasses). This was a jump from 150 to 235+ in a day or two and the SE were still increasing after 5 days when I eventually wound up in the ER, wrestled down and strapped to a gurney by 5 security guards (head/each arm/each leg). Admitted to the hospital for 5 days, my baclofen dose was restricted to 80mg/day and dosed sporadically. Then the real fun began and I had my partner smuggle in more baclofen to counteract my withdrawal unbeknown to my doctors . I was ready to give up and titrate down at that point, but realized I had to stabilize at 150 before I could do anything else. After 10 days, things calmed down a bit and I switched from a loaded dosing scheme of 8/12/6 40/40/80 to an even 8/4/12 60/60/60. Things improved and the side effects lessened, so I decided to start back titrating up. Upon each increase, I would notice my side effects would peak on the 2nd or 3rd day after the increase. So if I increased one day and didn't feel anything the 2nd day, I came to learn that *another* increase would bite me in the ass with even more hallucinations, shocks to the fingers and somnolence. Even at an increase of 10mg/5-7 days I would get more shocks for 2 days, the typical "slide show/color" hallucinations, a really terrible feeling sleepiness, and the most disturbing part: upon waking up from micro-naps, 25% of the time I would be greeted by the image of someone standing right over my face about to *kill?* me. Every single time I would scream and lunge across the bed or couch at this apparition and try to tear it apart with my fists. Very disturbing for me and more so for my girlfriend who learned very quickly to stay far away from me if she had to wake me up.

Maybe 3-4 months later I reached my switch (9/26/10 - after 7 months total) at 280mg/day and have floated around there: 240mg/day 8/2/7/12 60/60/60/60 today. My side effects peaked around 2 weeks *after* my switch, but are 99% completely gone now. PRN doses *really* screw me up entirely (I can't take them), missing a dose and waiting until the next is FAR better for me than trying to double and catch up (LeVin agrees here).

So there you have it. I had quite a severe drinking problem to combat - 15-24+ units a day + benzos for years. 4 trips to the ER, 2 outpatient and 2 inhouse detoxes. I had to keep my titration slow and steady. I'm a big guy who's been around the block a few times I'm pretty sure about where I stand in the world - I'm much more stoic rhinoceros than whiny bitch (used in a non-gender specific way here), so I know the side effects are very real and can be difficult for anyone.

Just my take. -tk

[kronkcarr]

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Ne, this is a great idea. Thanks!

Baclofen, heat and exertion are a terrible combination for me. The first time I learned this was when I mowed my lawn in the middle of a sunny hot day. I had to rest in the AC and drink LOTS of water. My hands had the shocks that terryk mentioned and I had hallucinations like a camera shutter closing my vision. The second time I learned this was today. I'm in a town in Switzerland and everything is up here. I wanted to go somewhere up so I started walking. The road had lots of switchbacks and it was steep. I was following my GPS and still got lost. I was over an hour going up before I gave up and started back down. I'm in pretty good shape, but my legs were so fatigued they were shaking, my hands were buzzing, my heart was pounding and I felt like crap. It took hours for most of the symptoms to disappear.

So, ok, ok, I get it now! I am at a maintence dose of 60 mgs.

[spiritwolf333]

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Hi Ne -I second Kronk on the great idea part. And thank goodness it is a senior member like your self bringing this issue forward -for credibility's sake and your direct-indirect approach. I don't imagine you will get a whole lot trollers-lol- but perhaps, just maybe, we could see a single thread where only legitimate negative concerns and experiences are posted. And, btw, you did a great job re-trolling the troller; I don't think he had any idea he was receiving a dose of his own medicine.

[Colin]

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spiritwolf333;1528742 wrote: And thank goodness it is a senior member like your self bringing this issue forward -for credibility's sake and your direct-indirect approach.
Some people don't see MWO as a suitable vehicle for credibility:-

Ne/Neva Eva;1425432 wrote:
Reduces the credibility of MWO? :H As a whole?

This is not, believe it or not, a resource for intellectual research, or even a greater understanding through diaries such as yours. Nor is it a place to fulfill the curiosities of newcomers.

Let's hope that opinions have changed.

[Blue79]

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People should not be driving cars under the influence of a baclofen titration schedule.

[Xadrian]

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Blue79;1529057 wrote: People should not be driving cars under the influence of a baclofen titration schedule.

And that statement would be based on what ??
Facts please, not just jabber.

[COSGringo]

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Xadrian;1529069 wrote: And that statement would be based on what ??
Facts please, not just jabber.

I will say I had some difficulties but those are long gone thankfully. Everyone is different.

[caro]

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Hi,

When I went up to 160mg I felt very hyperaware of everything and especially anxious. When I titrated down (too quickly, my own fault) I went into a severe depression and had suicide thoughts. I also went into a complete meltdown about real (and imagined) health problems. I was ok until I got to 130mg then (my emotions) became a bit surreal and I can only say I was not really myself.

My mental health has been terrible these last few months and I have had a few visits to A&E with panic attacks. This behaviour is very out of character.

The suicide thoughts have been very powerful and even to the extent of making real plans and getting my financial affairs in order. I told my GP, (about the suicide thoughts) asking for help and was told that there was no money in the NHS I would have to arrange therapy myself!!!!! This after telling her my plan was to drive my car off Beachy Head.

I went to see Dr Chick today (psychiatrist) and told him all. He thought the 160mg has more than likely been the catalyst for my on going meltdown, he said 'no wonder you went doolally'. He also was sceptical about the 'switch' happening and did not feel that we had to go to such high doses to achieve what we want (indifference from alcohol). He said 80mg was more than enough for somebody my size 7st 10lb, 5 foot and that he does not really think that what Dr Ameisen did (high dose) was a good plan.

The good news out of all this is that I do not want to drink (baclofen does work for me) and he has prescribed it for me. He advised me to continue on it at 80mg for the time being.

The very thing I wanted to avoid (outing myself as an alkie) has backfired spectacularly but at least now I can try to move forward in a more honest way. And try and live my life with more joy and the ridiculous shame I have felt because of my drinking. I could has destroyed so many lives if I had carried out my plan when my mind has been so scrambled.

So Ne thanks for starting this thread because if you think about it self prescribing (for me at least) can be a dangerous plan. So if any Newbie's are reading I can only suggest that don't do what I did and get some medical input.

Caro

[MaryGoRound]

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My advice is do not expect Bac to do everything for you. You must have a real understanding of what you are trying to accomplish. It is my experience that I will drink even if I don't "need" to drink.

From my recent experience on bac I can go to a high level and not have a single thought of drink but the rest of life is horrible (depression, disrupted sleep, etc). I can't live like that.

I am trying for a maintenance dose that I can live with.The SEs do diminish when I am on a steady dose.

Use Bac as a tool. It is a strong drug that effects people differently. Some people just cannot tolerate it. Please do not assume you are a failure if it doesn't work for you. There are other options.

[Cassander]

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caro;1529920 wrote: So if any Newbie's are reading I can only suggest that don't do what I did and get some medical input.

Caro

Hi Caro

Your advice to newbies is well-taken. The bad news, as you well know, is that medical input for baclofen treatment is in short supply and hard to come by.

As one who has read virtually everything there is to read about baclofen for alcoholism, I am still highly optimistic that baclofen will be demonstrated to be effective for the treatment of alcoholism -- if not for all at least for many. It works for too many people to be a chimera.

What is also increasingly apparent is that side effects, interactions with continuing alcohol use and other drugs, titration issues and individual reactions to titration, not to mention the question of withdrawal, as well as undiagnosed and untreated co-dependencies and co-morbidities are common and not exceptional. It is also increasingly apparent that some of these issues can not only defeat successful baclofen treatment for some people, but can also be dangerous and even life-threatening.

The recent article in the British press about the suicide of an alcoholic who had extensive difficulties and complications at a fairly high dose of baclofen underscores the need for professional supervision of baclofen treatment, as in the case of any meaningful drug therapy.

So, medical input is mandatory. However, it is still widely unavailable.

My belief is that at this stage in the development of baclofen treatment for alcoholism, over five years after the publication of Olivier Amiesen's discoveries in English, it is absolutely inexcusable that neither the government health authorities nor the medical profession in the United States have taken a position on baclofen, and the medical profession, to an overwhelming extent, is still not involved either in treating individuals or developing protocols for baclofen treatment.

It has been reported in the French press that sales of baclofen have increased substantially since 2008. There is very little likelihood that the explanation for this is anything other than increased sales for treatment of alcoholism. Several respected French physicians have issued a treatment protocol which has been publicized in France and is available to any French GP, family doctor, psychiatrist or addiction specialist who wants to inform himself or herself about best practices. Several double-blind placebo-controlled randomized clinical trials are also under way in Europe.

The situation in the US is not nearly as encouraging. There is one doctor, a psychiatrist, well-known to many on this board, who will take patients over the telephone and prescribe anywhere in the country. After that there is virtually no well known medical resource for alcoholics who believe baclofen may be helpful for them.

So far as I can tell, the US government agency responsible for research on medical treatment for alcoholism, The National Institute on Alcohol Abuse and Alcoholism, has taken no public position on baclofen and its website is silent on baclofen treatment for alcoholism. While it appears that the NIAAA is sponsoring a clinical study of baclofen for "anxious alcoholics", this does not excuse its otherwise total silence on the subject. Perhaps it makes it more inexcusable.

The website of the American Society of Addiction Medicine is silent on baclofen. The website of NAADAC, the Association for Addiction Professionals, which represents more than 75,000 addiction counselors, educators and other addiction-focused health care professionals in the United States, Canada and abroad, is silent on baclofen. The American Medical Association has published a Clinician's Guide to Helping Patients Who Drink Too Much (="http://www.ama-assn.org/ama/pub/physician-resources/public-health/promoting-healthy-lifestyles/alcohol-other-drug-abuse.page">Alcohol and Other Drug Abuse), but it, too, is silent on baclofen treatment. Not only is the Guide silent regarding baclofen treatment, but it also gives the clinician no guidance in assisting a patient in evaluating the risks of embarking on a course of baclofen treatment on his or her own. There is no advice regarding treatment of baclofen withdrawal. Given the increasingly wide-spread self-treatment of alcoholism with baclofen (as witnessed on this site), how can the medical profession simply ignore the treatment of baclofen complications and withdrawal?

I am reminded of the many stories on this forum of members who have gone to their GPs or family doctors seeking treatment for alcoholism, including with baclofen, only to be pushed away with a refusal to treat. Many are unaware that baclofen exists. Isn't that tantamount to going to your doctor with chest pains (however induced) and being told, sorry, we don't treat chest pains?

I am also reminded of my own experience when I asked my highly-regarded and very experienced psychiatrist about baclofen treatment for alcoholism. He said he had never heard of baclofen treatment for alcoholism. His first reaction was: baclofen? That's a narcotic...which of course was totally untrue and misinformed. I said, yes, its true, hundreds, if not thousands of alcoholics are finding that baclofen treatment can result in suppression of craving for alcohol, essentially curing the addiction. I gave him a copy of Dr. Amiesen's book and asked him to read it. He said he would, but I was so disgusted I never went back.

There is absolutely no excuse for this silence and ignorance. Not only must the medical profession proactively inform itself regarding everything there is to know about the potential for baclofen to cure alcoholism, in order to better treat alcoholics, it must also understand and inform itself regarding the side effects, interactions, titration and withdrawal issues and individual reactions of patients as well as undiagnosed and untreated co-dependencies and co-morbidities that are common in alcoholics.

Anything less is gross negligence on the part of the medical profession. Are there no doctors out there who get it?

Cassander

My screen name, which I have been using here for two years, is derived from that of Cassandra, in Greek mythology the daughter of King Priam and Queen Hecuba of Troy. She was granted by Apollo the gift of foresight. Her gift was tragic, however, because although she could see the future, no one believed her. Cassandra foresaw the destruction of Troy and warned the Trojans about the Trojan Horse, the death of Agamemnon, and her own demise, but she was unable to do anything to forestall these tragedies. The use of baclofen as a treatment for alcoholism exists, as surely as alcoholism itself exists, and yet the medical profession stands aside, wilfully ignorant and disengaged. This, too, is an unfolding tragedy.

[Ne/Neva Eva]

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Reggie;1530439 wrote: Never Ever ever listen to this horrible disgusting demeaning to all women song.
http://www.youtube.com/watch?v=yyDUC1LUXSU[/video]]Robin Thicke - Blurred Lines ft. T.I., Pharrell - YouTube

Aside from that for those that are like me that still feel a underlying dysphoria symptoms once dealing with a sober life and decide to to take a Anti D or SRRI type solution watch what it does to the resurfacing of the "hunger like craving" we all know its equivalent, it is like a starving for food or water..a.. survival like craving. You need to up dose to counter act otherwise do seek psychological help ..I have a lot to deal with i wanted to be a priest (seriously) I was so confused about my sexuality and life in the pubescent years. This shit is hard to deal with. but under the influence of alcohol its impossible. Baclofen Works in conjunction with other support ..in my case ..I have to be dragged screaming to this conclusion..I thought I could do stuff on my own....bugger

Because it should stay.

[Diver]

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A couple Don't Do This, that I learned from accidently double dosing myself.

Number one Don't ever ever double dose yourself. I had been writing down each dose as I took it, but has I became more comfortable after a couple of months I stopped recording. Stupid ... Stupid ... Stupid.

I was at 330 and on this day I took 440! I woke up early in the morning praying to the porcelain god with some serious tremors and unable to think clearly. My wife freaked out and insisted that I go to the emergency room. Which brings me to my second Don't Do This

Don't Think that the ER Doc is going to have a clue about HDB. The compassionate doctor's whole demeanor changed to Queen Bitch, when I mentioned alcohol and Baclofen. She told me that it wouldn't help and immediately checked my liver which she said was "enlarged" and ordered a CT scan. She then assumed that I was having withdrawals from alcohol and treated me for that. Even though I told her that I just had completed 5 days AF, and had 4 glasses of wine the night before. I had my liver scanned, however she never came back to tell me the results. Obviously my liver was fine, so she couldn't come in and lecture me and my wife. She sent a nurse in to release me with orders to go to a Detox Center. Which I had no interest in doing since it was bullshit, but my wife insisted and since she is a medi-phobe to begin with I went. During my interview there I told them I was taking baclofen for alcohol cravings, and to my surprise they understood. They told me properly that if I wanted to stop taking Bac that I needed to titrate down slowly and offered me inpatient to help me or outpatient where a doctor could supervise. Of course I told them outpatient and left. I wasn't about to stop baclofen, but I did contact Dr. Levin to get a legitimate prescription and also for him to talk to my wife to get her back on board. A side note here, I was due for my annual physical so I went two weeks ago and my liver panel was within the normal range. I am thinking about getting a copy of the CT scan and report from the ER hospital and if as I suspect it is normal, lodging a complaint against that Bitch Doctor.

That was a month ago and I continue to take 330 and baclofen has changed my life. If anyone is interested in the gory details you can read about it on my progress thread.

[Fred_The_Cat]

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Do not be impatient- both for safety and motivational reasons.

Dosing up too fast is both unpleasant and unsafe. Many of us can recall some near miss car accidents from baclofen somnolence. There are also workplace issues that could result from the pharmaceutical ass-kicking you are subjecting yourself to. One morning at my last job my phone died, meaning I had no alarm clock. My bac induced coma of a sleep made me two hours late, and since it wasn't the first time that had happened I was grilled as to why- they were on the verge of firing me on the spot. I lied and said that my antianxiety medication was causing me to oversleep. I thought they bought it- until two months later when my contract ended and I was let go.

Do not think that bac alone is going to end your drinking problem. It sounds cliche to say that addiction is a complex problem with chemical, behavioral and social aspects, but this fact is underscored by the issues that remain once the chemical aspect is solved. You have to go into it with a plan of how to modify your behavior- otherwise you will be facing down a void so overwhelming you will be running back to alcohol for relief. For me it was only circumstantial that I rented a room in the country where I couldn't walk to bars and got a girlfriend who doesn't drink. Without those external factors I would still be in my old habits. Commit to NOT doing things for a while- say no to bars, say no to parties, say no to wasting time doing whatever you did while drinking. Their importance to you will quickly fade.

DO be patient- your recovery will build like compound interest- you won't realize how far you've come until things get overwhelmingly positive in light of the past.

[skullbabyland]

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Fred_The_Cat;1532332 wrote: Do not be impatient- both for safety and motivational reasons.

Dosing up too fast is both unpleasant and unsafe. Many of us can recall some near miss car accidents from baclofen somnolence. There are also workplace issues that could result from the pharmaceutical ass-kicking you are subjecting yourself to. One morning at my last job my phone died, meaning I had no alarm clock. My bac induced coma of a sleep made me two hours late, and since it wasn't the first time that had happened I was grilled as to why- they were on the verge of firing me on the spot. I lied and said that my antianxiety medication was causing me to oversleep. I thought they bought it- until two months later when my contract ended and I was let go.

Do not think that bac alone is going to end your drinking problem. It sounds cliche to say that addiction is a complex problem with chemical, behavioral and social aspects, but this fact is underscored by the issues that remain once the chemical aspect is solved. You have to go into it with a plan of how to modify your behavior- otherwise you will be facing down a void so overwhelming you will be running back to alcohol for relief. For me it was only circumstantial that I rented a room in the country where I couldn't walk to bars and got a girlfriend who doesn't drink. Without those external factors I would still be in my old habits. Commit to NOT doing things for a while- say no to bars, say no to parties, say no to wasting time doing whatever you did while drinking. Their importance to you will quickly fade.

DO be patient- your recovery will build like compound interest- you won't realize how far you've come until things get overwhelmingly positive in light of the past.

I'll agree with all of Fred's points, here- all good advice, at least in my experience.