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[TracyA]

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Welcome, Mema! Bleep's right (as usual). It's a good place to be.

[Bill Gorton]

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Lowcountryman;1070765 wrote: Mema:welcome:,

I find it hard to believe that when somebody new is actually scared to start Baclofen, scared for this, scared for that, other members start almost hijacking her/his thread by posting one horror-story of one exception in a case that was not typical for the way Bac is used by members of this forum.

Mema, Getting Serious,

Baclofen IS safe! It has been safe for many many years! It's prescribed for little children. NObody ever died taking Baclofen, not even when trying suicide with it.


That is what you should remember. And that is what all the posts below should be all about, but people got carried away.

Mema, GS,

Try to read as much as you can about this stuff. Don't let one weird case trouble your mind here. It works, you'll experience some SE's, but you if you will be able to handle them, you'll be okay.

Low

The posts in this thread should include the risks as well as the benefits of taking baclofen or of any treatment option. One of those risks is death if you stop taking the pills. People on this forum aren't dying because they aren't suddenly discontinuing the drug. Paul's wasn't the only case of someone almost dying because of bac WD. Someone else posted a similar story of being admitted to the ER and having the docs refuse to give him baclofen. Loop said he almost died because he ran out. Someone else posted about miscalculating how much they needed to make it to their next order, and having to taper off much faster than they wanted to. If you are going to start high dose baclofen, you must make sure that you have enough on hand at all times to safely taper down to zero. If you cross that threshold, you must start tapering your doses immediately. You should not count on your order arriving on time (one of mine took over 30 days.) You should not count on your doctor to continue prescribing. Dr. L could have his license suspended. Your GP could have a change of heart after a talking to by his superiors. We've already seen at least two cases here (Paul/c0ffee and the guy/gal I can't remember) where ER docs refused to administer baclofen out of principle (while knowing that it will save the patient's life). If you have private health insurance, it could be canceled if you are prescribed any anti-craving medication.

GettingSerious, dixon, Mema: you must be your own advocates. You cannot count on anyone else to do what is best for you. You are addicts. You are expendable, a liability, a nuisance in the eyes of society. Learn all you can and make the best choice for you. For me, the side effects of baclofen have been a curiosity and, at times a minor annoyance, but not a show stopper. In my opinion, I'm still able to drive safely, perform my job, and get an adequate amount of sleep. If after reading the success stories here and/or Dr. A's book, you feel like you want to try baclofen, I strongly encourage you to do so.

[bleep]

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Jesus Bill.

Whilst I am the first to agree that the risks as well as the rewards should be disclosed, I do feel that you have gone about it in entirely the wrong way. Perhaps a simple message, saying what you said above, "If you are going to start high dose baclofen, you must make sure that you have enough on hand at all times to safely taper down to zero. If you cross that threshold, you must start tapering your doses immediately." would have delivered your point.

The way you introduced the topic made it look like people were dropping like flies from baclofen, and we know this isn't the case. Baclofen is regarded by the AMA as a "safe" drug to take, and they don't stick that label on drugs that routinely kill people, something you neglect to mention.

You also neglect to mention that the someone who ran out and tapered down ended up being fine. I too can't remember who it was, but I didn't bring them up. If you are going to bring these horror stories out for newbies to examine, you should at least research them so that they can make a clean decision.

Further, that research would show that the risk of a sudden cessation of baclofen at high doses (which is not something a newbie need concern themselves at this point, seeing as how they start at 15mg's) is a seizure, something quite dissimilar to death. For reference, I point you to the French Forum, where a GP very experienced in baclofen administration and withdrawal has clearly stated this, based on vast experience with baclofen. To my knowledge, nobody has yet died from from it.

Point out the dangers Bill, but do it in a clean and friendly manner, not one calculated to strike fear into the heart of an already cautious beginner. Use your brain man. You clearly have no compunction about deleting posts, perhaps this would be a good place to practice, and then let's move on in a more rational manner.

[Bill Gorton]

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My first, horrible, horrible post in this thread that has caused so much heartache for so many people (sarcasm) was in response to Tracy's post downplaying the risk of baclofen withdrawal. You stated that you've never had a problem with withdrawal. Well, good for you. Many of us have. Be glad that you've never had an open-eye visual hallucination while withdrawing from alcohol. Those of us who have (and there are quite a few) are scared to death of withdrawal. The reason I'm willing to risk physical dependence on a drug like baclofen is because of these experiences with alcohol.

I will not delete any of my posts in this thread. I will continue to inform "newbies" of the risks of high dose baclofen whenever someone downplays the risks (and whenever I am so inclined). Deal with it.

[I-want-to-be-sober]

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It's right that no one has died because of withdrawal from oral baclofen. But there are reports of delirium which is a life-threatening condition and manufacturers write warnings about this and other very serious W/D symptoms in the package insert which they clearly don't make up. One person with spasms and no epilepsy developed status epilepticus after being aprubtly withdrawn from oral baclofen (80mg) in a hospital and suffered brain damage because of it despite aggresive treatment in an ICU. Delirium has been reported from withdrawal of high and low doses of baclofen..

So it's correct that "just" several people died because of W/D from intrathekal baclofen resulting in a black box warning of the FDA, but nevertheless oral baclofen W/D sympoms can be very dangerous.

[bleep]

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Fine Bill, then at least get your facts straight.

Firstly, lets not bring alcohol withdrawal into the debate, it is completely separate from baclofen withdrawal and has no bearing on the matter. I don't know why you bought it into the equation in the first place?

Secondly, please point me to ONE documented case of death by baclofen withdrawal that wasn't caused by an intrathecal pump malfunctioning. Just one case, you seem to think people die all the time from this, that should be quite easy.

I can't find one, and I won't accept your "remembering a thread somewhere" as evidence. By all means, post your warning, but back them up with facts, particularly if you want to make them so dramatic.

[bleep]

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Cross-posted there Sober - I'm not denying it's dangerous, and should be avoided if at all possible. I am, however questioning Bill's very dramatic introduction of the subject unsupported by facts.

[Murphyx]

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Whilst at around 150mg of baclofen I had a semi-permanent erection. This was extremely dangerous and could have resulted in several smashed vases and traumatised family pets had the beast escaped from its cage.

I will not delete any of my posts in this thread. I will continue to inform "newbies" of the risks of high dose baclofen whenever someone downplays the risks (and whenever I am so inclined). Deal with it.

[Bill Gorton]

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bleep;1071646 wrote: Fine Bill, then at least get your facts straight.

Firstly, lets not bring alcohol withdrawal into the debate, it is completely separate from baclofen withdrawal and has no bearing on the matter. I don't know why you bought it into the equation in the first place?

Secondly, please point me to ONE documented case of death by baclofen withdrawal that wasn't caused by an intrathecal pump malfunctioning. Just one case, you seem to think people die all the time from this, that should be quite easy.

I can't find one, and I won't accept your "remembering a thread somewhere" as evidence. By all means, post your warning, but back them up with facts, particularly if you want to make them so dramatic.

Bleep, IWTBS said it better than I could have. Oh, but you wanted someone to actually die. Abrupt withdrawal of Baclofen isn't something that happens often because most people have the sense to keep taking their meds. Most cases seem to be people admitted to the ER. Ironically, the hospital is a very dangeros place to be for someone on high dose bac without a prescription. Maybe you could volunteer. Be sure to give someone your password first so we can hear about it.

Okay, don't actually do that.

I want to apologize to anyone who might have been scared off or offended by my insensitive post. I had no idea it was going to cause so much trouble.

[Bill Gorton]

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Murphyx;1071651 wrote: Whilst at around 150mg of baclofen I had a semi-permanent erection. This was extremely dangerous and could have resulted in several smashed vases and traumatised family pets had the beast escaped from its cage.

I will not delete any of my posts in this thread. I will continue to inform "newbies" of the risks of high dose baclofen whenever someone downplays the risks (and whenever I am so inclined). Deal with it.

Cute. Maybe one of you would like to give me a swirly and shut me in a locker.

[Ne/Neva Eva]

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I call kerfuffle.
Even with the best of intentions, it's still kerfuffle.
Take it. Don't take it.
Risks run great either way. I was willing to test the limits and face my own, not trivial, fears about the whole thing.
If you're not, likely you won't make it.
If you are, do it with forethought and planning. And don't be a dumbass.
Yep. I said it.
xo, peeps.
Keep taking the pills. Listen to Low. His eyes are glistening.

[redhead77]

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I just wrote a very long response and lost it all. I'll try again.

Bill,

I believe what your trying to do here is positive. I want you to know that you got me really thinking about if something were to happen to me, and I was unconscious. I don't have anyone I can tell about this. What I've decided is I'm going to put a high dose bac alert card with the name of my MD and the need for immediate notification of him, on treatment advice. I'm going to put it right behind my ID.

What if I can't take PO, though? When one is critically ill, often the gut shuts down. Bac can only be taken orally. Everything needs to be changed to IV when this happens. Since oral bac wouldn't be an option, I would most likely be intubated, treated with high dose benzos, possibly paralytics, and antiseizure meds. Some people might call that a drug induced coma. That's if I started to have status epilepticus from bac withdrawal. Absolute worst case scenario. Yes, you really have me thinking. I wonder if this is why benzos and other methods were used on Paul. Maybe they didn't trust his gut or he was so agitated he was pulling out his feeding tube over and over. The trauma it would cause to continually replace it might not have been worth it. Medicine isn't black and white.


Most newbies that come to MWO to learn or start bac aren't going to just read one or two threads that illicit paranoia. I think most newbies that get this far, myself included, have either already researched this or have an IQ high enough not to base all their decisions on a fews opinions or negative experiences. There has been far more positives than negatives here. I'm not sure if one is that easily influenced that they should be doing the bac journey, anyway. Taking bac may be a cure or a way out, but it's definately not easy. It takes sheer grit, determination, and a good measure of logic and reasoning. It takes research and reading and in my personal experience FAITH. Even with all of these qualities some people aren't going to make it. The SE's are very real and we all have lives to live.

One last thing. Not to compare apples to oranges but remember there is a very real (undoubtedly proven), risk of seizure and death from alcohol abuse. I would rather take my chances with bac.

[Lowcountryman]

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Getting Serious,

I feel a need to apologize here. You're new here, you thread is Hijacked for a lame discussion by members who are not helping you at all, but 'talking' to each other and making their own point.

Hereby I invite you to pm me if you want to. I will tell you all I know, direct you to who I know and together we'll make this thing work for you.

Oohoh..., I feel an itch....a twitch..Could this be the beginning of a seizure?? Been reading a lot about that lately....oh no, it's gone. Phew!! Close call.

Anyway, pm me I you want to be helped.

Not a doctor.
Low

[I-want-to-be-sober]

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bleep;1071646 wrote:
Secondly, please point me to ONE documented case of death by baclofen withdrawal that wasn't caused by an intrathecal pump malfunctioning. Just one case...

The person with oral baclofen withdrawal leading to status epilepticus and resulting severe brain damage remained unresponsive (in deep coma) for six months and then died of infection. He took 80mg daily for spastic quadriplegia and had no epilepsy.

[bleep]

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Thanks Sober.

I stand corrected. Not sure what came over me, don't normally react so vehemently. Bill, I'm sorry, let's leave this alone and let Serious get on with her thread.

Serious, sorry for getting so sidetracked! On with the baclofen discussion.