starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

[Ne/Neva Eva]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

coffee, I'm so sorry for your experience. I can't imagine what that was like. I hate that there are so many alcoholics who are deathly (literally) ill. I can only imagine what your suffering must be like in order for you to set your sights on bac again, but I understand and commend you for it.

I've thought a lot about you in the last month. The last time I *saw* you here was in chat. You were fairly freaked out, taking huge amounts of bac, but sober.
I was very worried about you after that evening, though.

I hope you'll expand and expound on your experience. It's a frightening one, to be sure. In order that others avoid a similar outcome I wonder if there are other factors that played a part? To be completely clear, I'm not belittling that experience and understand it has a place here on this forum. And definitely understand that baclofen played a huge role for you in this. It would simply help to know what could be done differently, since many of us have taken the quantities of bac that you were on. Without the horrific results.
I am so sorry for your experience. I hope Dr. L can help, but I also know for sure that there are docs in NYC that use high-dose-bac for addiction treatment. I just don't know who they are!
I wish I could offer more in the way of support for you and your family. (Your son was visiting, right? Ugh. That must have been excruciating for him, as well.) I'm so, so sorry.
:l
Karen

[Otter]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

The treatment for Baclofen is Baclofen.

[_serenity_]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

Otter;1062929 wrote: Yes, quite a horror story. My wife went through the same thing. It went on for months and ended in utter disaster. I started the Dosage and Frequency Thread to get help getting her out of the horrific situation she was in. Without our new doctor I seriously wonder if she would be alive today, sitting watching TV with our little boy.

The consequences of incorrect dosage of Baclofen can be catastrophic.

The saving grace is that with our new doctor she is now stable and getting the right dosage.

The treatment for Baclofen is Baclofen.

Otter, is there a thread you can direct me to which tells your wife's story? I came onto this forum rather late in the game. I would really like to read her story.

[Seethepony]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

The problem is, of course, that doctors who will prescribe baclofen for alcoholism are like dogs that speak Danish - exceedingly rare. (To mutilate a phrase from Blackadder.)
If the only route available is the D.I.Y one, well, not much choice, is there. Better to take a slight risk than face certain oblivion.

[Otter]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

_serenity_;1062934 wrote: Otter, is there a thread you can direct me to which tells your wife's story? I came onto this forum rather late in the game. I would really like to read her story.

Hi

Here is the thread: https://www.mywayout.org/community/f2...ncy-45440.html

I have not re read it as the whole thing was so disturbing. It is not exactly my wife's story but followed her treatment.

It was pulled and much of what was on it was removed by posters out of fear. Paul and my wife got well. I was on the phone and sending PMs to his sister and we still keep in touch.

When I first came to this forum it immediately struck me how dangerous it is to be doing DIY brain drugging. That is why I set up Home - Baclofen UK. I wanted to get help from somewhere with prescribing because we had no advice on dosage. The site allowed us to get the doctor we now have through our Member of Parliament and some government officials who took the site quite seriously and the next I knew we were given the phone number of our new doctor by Danielle, the film maker.

At first Baclofen seems a bit of fun because it makes you have a good sleep but after a while you realize you are changing how your brain functions, becoming a different person, perhaps better, maybe depressed, but then these horrors can hit and some pretty scary stuff happens. No, not pretty scary...effing horrifying.

Brain chemistry is about very small levels of chemicals, minute, microscopically small levels. I read somewhere that the hormones which cause monthly periods are smaller in amount that the head of a pin and think what behaviour that can cause. Now think about dosing 50-60 mg in divided doses. It is like having half a bottle of vodka in the morning, followed by withdrawal at lunch time, then another half a bottle and so on followed by a big withdrawal through the night. Then, if you decide with any of these big withdrawals that you don't want the SEs of the big hit of Bac, you reach for a half bottle of Vodka, so you have two set of peaks and valleys, one caused by big Bac doses, the other by big swigs of Vodka, and then there is the interaction of them....

Then you cannot get out of it.

The dosage and frequency thread was about taking small amounts at regular intervals. Dosage level is about not getting side effects or craving. Frequency is about absorption and elimination. Some people metabolize drugs more quickly than others. You have to keep the levels low to avoid SEs but high enough to avoid craving. Titrate up slowly. No matter how low you are starting, spread the doses evenly through the day and night. Take an extra dose at night and in the morning and in the night if you wake up. Keep it even and take it like clockwork. Listen to your body. Total daily dosage is not important. It is the regularity of the dose so as to keep your brain swimming comfortably in the stuff but not drowning. If you feel side effects, cut back and look at how often you are taking it and how much the doses are. Get the doses up to about 20 mg at a time, a couple of hours apart. If it is not stopping the craving make the doses closer together, don't take big doses.

Do this under the supervision of a doctor and do not stop taking Baclofen abruptly!


Best wishes

[Greg]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

I don't post here much but would like to give my opinions on this topic if that's ok:

1) Baclofen is a very serious medication which includes central nervous system depressant properties, as does alcohol of course. Abrupt withdrawal can cause severe symptoms. Taking huge doses of something like this, sometimes with alcohol, would normally be a huge medical issue and should normally be done under medical supervision...but...

2) There are virtually no doctors in most locations who are willing to prescribe this treatment. People who are alcoholics, and who have not responded to the various other treatments for alcoholism, therefore have no alternative but to either keep on drinking themselves to death or try high-dose baclofen treatment without medical supervision. That's the plain and simple fact for anyone who is not able to physically visit a willing doctor to be under supervision.

Edit : Glad to hear there is now a Dr in the UK willing to help people....also I'd agree with the need to keep baclofen levels as steady as possible, due to its short half life.

[Ne/Neva Eva]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

This thread caused me more than a bit of consternation in my waking moments last night.
If I read this thread when first coming to MWO I would have despaired. But the things posted here are extreme examples of what can go wrong. And the protocols for taking bac were also extreme.
I am in no way suggesting that it doesn't have a place here. On the contrary, I think these cautionary tales are EXTREMELY important.

That said, I know the backgrounds of the people involved, but I worry that others don't and the stuff written here is just effin' scary, to borrow from Otter.

Otter, I think you would agree that your wife's situation is different than many who log on here. You've done an admirable job looking for answers and posting really informative information. The path that she's followed, and the things she's dealing with are rather extraordinary, I hope you'd agree. And the bac protocols that she's followed are also extraordinary.

As was c0ffee's experiment.

Greg, I appreciate your thoughtfulness as well. But I don't think bac is particularly dangerous if it's done in a controlled and thoughtful way. (Control doesn't have to be in a restricted environment, as has been repeatedly proved here.)
We have Dr. OA to thank for the research to prove that it really is a relatively safe medicine. Like all medicines it should be taken with forethought and planning. (You wouldn't want to take too much insulin, for example, in order to achieve controlling your diabetes more quickly.)
We have some protocols here that may not be exactly 'right' but many of us have found sobriety and suppression of the disease with those protocols.
I'm curious as to the CNS stuff you cited. Also curious about the bac/AL combination you alluded to. In The End of My Addiction I don't think I found reference to either of those things, exactly, but I'll look again today, more closely. At both the research and the book itself.
Best to all!

EDIT: There are doctors. We just haven't found them. But several of us have had success convincing our doctors or finding a doctor to help with high-dose-bac treatment. From New Zealand to Zimbabwe. The UK and the USA. There are certainly some in France! One in particular! KOKO as Dabhar would say. There IS hope.

[Otter]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

Hi

The vast majority of people here have no problem with Baclofen.

If you see part of the reason for the posts on this forum being to encourage Baclofen use, it is equally important to tell the horror stories.

The reason for that is this: People are going to take Baclofen because it offers them a way out of alcoholism and other addictions. Soon its success will become apparent and so will the potential dangers. Once it gets to that stage, the public health issue of allowing people to use without medical help will make doctors start overseeing this. It will become a potential public health issue and it will become very politically sensitive to try and suppress use of it when people are curing themselves of addiction.

[Guest]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

I think it's good that these stories are posted here. I was once considering lazer eye surgery. All I could find were the success stories, and the sales-hype I could not find anything about procedures going wrong. I found this quite disturbing. I had the same feeling when I saw everyone insisting that Baclofen is safe. It is safe taken in the right circumstances, in the right way however for some people it can go wrong. It also is contraindicated with certain medications. Nothing is ever safe, well hardly anything anyway.

I've since learned of stories of the eye surgery gone wrong, but only by word of mouth. And now it's good that we are seeing what can happen with baclofen too.

[Bruunhilde]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

I guess the danger of not being under Dr supervision is that things like this can happen. That's the problem with us all being guinea pigs.

I'm so glad MWO is here to help me watch for issues, like my hypertension. Over the past 25 years, I've come to know that my BP will be fine if checked just now and then, because I'm at a med level now where at the weight I'm at, my BP should be fine.

When I saw the posts here about hypertension (thanks Grommet), I measured mine and it was off the charts, which scared me.

Often my HBP shows itself to be out of control with facial flushing, but I was getting that from GI upset, so it was hard to tell.... Thanks again MWO.

[Greg]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

From the rxlist site, baclofen section:

"The central nervous system depressant effects of baclofen may be additive to those of alcohol and other CNS depressants."

Notice that is says "may be additive". It's a general precaution that is nearly always applied to any drug that can have sedating effects, not just on the rxlist site but also in texts about drug action. A general rule is that drugs having depressant properties add to each other's depressant effects.

Plenty of people are able to take baclofen while still drinking, as did Dr Ameisen. I would still recommend this treatment to personal friends who are alcoholics and unable to stop drinking by any other treatment methods, and it's less risky (in my opinion) that continuing to drink heavily, especially when there is already damage done by the alcohol.

I guess that anything in medicine has risks, and a decision always has to be made to weigh up the risks and benefits of any treatment. In this case the benefits of baclofen treatment would seem to nearly always outweigh the risks of not trying the treatment.

P.S. Yes NE I was surprised that Dr A's book doesn't include anything about combining bac with al, but he can't have considered it a major barrier to treatment by the look of it.

[bleep]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

Coffee was under medical supervision for this disaster, that's the scary thing. The medical supervision didn't have a clue about high dose baclofen though.

[Greg]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

bleep;1063517 wrote: Coffee was under medical supervision for this disaster, that's the scary thing. The medical supervision didn't have a clue about high dose baclofen though.

Hopefully, in cases where hospital staff know about a patient taking large doses of baclofen, they would administer baclofen as a first option rather than diazepam or phenobarbital.

[c0ffee]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

thanks for the replies guys. after I posted my experience I had a bit of regret in doing so because a felt that maybe I had no business posting anything bad about bac here. I replay the tape in my head every single day about all that happened to me and now that the dust has settled a bit, and I can think a little clearer, I can in a way see the positives along with the negative. I paid a huge price both monetarily and physically for what happened in this past episode and over the years. People that know what happened tell me that that I'll be okay; I'm young and I can bounce back. Anyway, I searched this site in and out looking for cases where people had a bad experience with bac hoping I would find something to explain what I was going through and found nothing. This was at a time when I was taking like 300mg's/day and experincing EXTREME anxiety and insomnia and was looking for a reason as to why this was happening.
Some would say that I'm crazy to even consider touching baclofen again but I still have to believe in something that seems to have worked for so many people. I don't think that I drink because I have a spiritual malady and I'm dishonest and need discipline. I think that I am dealing with a genetic predisposition coupled with a learned behavior. There is just too much evidence to support that it is a medical condition. I just think I rushed the bac protocol toward the end and not really sure if I needed doses that high and that fast.

btw Bill, I have called a few different malpractice firms and they all say I don't have a case. Its probably b/c of the nature of the circumstances for which I came to the ER to begin with however, this could NOT have been just AL withdrawal. It had to have been baclofen.

I have not had a craving or alcoholic thought since I left the hospital. People that know, which is very few, say that this episode was the turning point and must have scared me straight. This may definitely be a huge piece of the equation but in the past I have faced some other severe consequenses (job loss, girlfriend, friend & family loss, legal issues; etc) but oddly enough the cravings still returned within a few days, sometimes hours or even minutes or seconds, and I succumbed and fell victim once again. I do not have to fight off cravings right now. Even with the bouts of anxiety and insomnia, I never once have the thought of a drink being the quick fix to it all like I did in the past. I don't know what to make of it. maybe something happened to me in that coma or maybe I took so much f'ing baclofen beforehand that it triggered that threshold respnonse or maybe it's only been a few weeks and I would be a fool to think anything after such a short period of time... maybe this all did just scare me freakin' straight but why no cravings? I'm not worried about the anxiety and insomnia. I don't think that I would be human if I didn't have it. Now I have some serious things to be anxious about and any person on the planet would lose sleep over them. I need A LOT more time to be able to make any kind of summation at all.
I'm taking between 50 and 70mg's of bac/day and plan on talking to Dr. L in the next few days. I really don't see any reason to go up on the dose at the moment b/c it doesn't make any sense right now but I'll see what he says. Definitely taking things slow right now all around though. Need to minimize the stress levels as much as possible.

[Topsy-Turvy-Tracy]

starting over- IMHO, baclofen should be monitored by an MD and not taken upon oneself

I've long worried about going up to a high dose and suddenly having to go without and suffering withdrawal. Then it occurred to me: I've driven drunk many times, and really nasty things might have happened (gosh, what if I killed somebody). If I have to choose between two nightmares, I'd choose risking the withdrawal - at least then I'm not likely to kill somebody in the process.

I thought having medical supervision would be helpful too, and it was, until my NP bailed on me to treat disabled vets. I'm happy for them, because she's a great provider - but I'm back to square one. I don't have the energy or willingness to try to engage the first-year resident that I've been assigned to (he wants to immediately review my meds before refilling them - ARRRGG).

Glad to hear that you're taking it slow, Coffee. Maybe you really did hit the switch somewhere during the trauma. Congrats on the lack of cravings! You sure earned the prize.