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

[c0ffee]

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[PbarE]

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

Thanks for sharing that story. I have been contempalting doing this on my own if I can't find a doc, and this strengthens my resolve to find one.

I think you hit upon something - patience is the key. We didn't fry our brain chemistry overnight. What is a few months?

Do you mind if I ask you how much you were taking?

[_serenity_]

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

Paul,

That's the scariest fucking thing I've ever heard. I cannot IMAGINE what it was like to go through. I am so very, sincerely glad you're OK. :l :h

That said, I'm also glad you're willing to go with Dr. Levin's advice and titrate up at a slower level. I'm still on my "reached the switch" high, and I can say without a shred of a doubt that this stuff works if you let it (and you take it slowly, with patience).

I send my most sincere gratitude that you are still with us. The future holds a lot in store for you.
:h --serenity

[redhead77]

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

Coffee,

I read your story three times. I had to be sure I got it straight. Be very careful with bac, I know you already know this. If you have a chance, look at Beatle's thread, questions for Dr L. There is a titration schedule on there. No more than 20mg a week for you for sure!! Be safe. We care for you, and want the best.

[bleep]

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

Jesus. What a story.

I wonder how much baclofen withdrawal had to do with it? 375 is a hectic dose.

Whatever, that story is unreal, glad you came through it okay. Well done on deciding to start baclofen again, can't have been an easy decision in light of all this...

[ignominious]

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

Sometimes it can seem almost heretical to post something bad about baclofen on these boards. Also I admire your insight that baclofen can work under the right conditions and your courage to try again. Thank you for writing about this.

I agree totally that everyone should have medical supervision when taking high dose baclofen, unfortunately this is not always possible and therefore would still urge people to self prescribe if a sympathetic Dr is not available.

I believe there is adequate information on these boards to self prescribe but gathering the relevant pieces can be a chore. Titration schedule, drinking whilst titrating, withdrawals is all here. For the umpteenth time I call upon the management of MWO to dedicate a forum to baclofen, this would be a step in the right direction to organising the combined wisdom that is available here.

I suspect that the horrors of what you experienced were exasperated by the effects of baclofen withdrawal. This is about as dangerous as Bac can get. It has been suggested that we carry a card, to this affect, addressed to medical personnel for situations when we may be unable to explain things clearly or at all. Were you tapered off baclofen in any way when you were in ER?


I think the moral of the story is that baclofen should not be taken lightly. I am happy (inadequate word) that the consequences were not worse and applaud your resolve. Lastly and not least I wish you luck with your continued journey.

[prancy]

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

Many people have left this world combining prescription drugs and alcohol. I am glad you are not among them. This is a lesson for all of us.

[Lo0p]

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

I can't find the words to adequately speak to the horrors that you've endured. If I could I would. My heart goes out to you.

I just have to say two things:

1: One day doctors will more fully understand our plight. On that day, it'll be common knowledge that to try to withdraw from high dose baclofen with anything other than baclofen is, to put it bluntly, archaic and dumb. On that day, it'll be common knowledge that you might not need to withdraw from it completely.

and

2: I am humbled :bow by the clarity of mind that you must possess in order to try again. I am trying to be as genuine as I can here, I hope that you can hear me and trust me when I say this: I know it certainly doesn't feel like it right now, but your mind and will are made of something much, much stronger than tempered steel my friend.

This tells me that, without a solitary doubt in my mind, you will succeed. I know this. You will find your way out.

[Guest]

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

Well done for posting that. At the moment I'm experiencing really bad side effects. I know most say ride it out, but it's so bad I'm getting muscle twitches that if I didn't concentrate 110% during the day, and fight the somnolence every minute then I'd collapse in a twitchy heap. I've been at this level for a while now and SEs don't appear to be abating at all. Too scared to go down in case I drink(which I have ended up doing anyway), too scared to keep on.

Anyway thanks for your input.

[Seethepony]

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

Holy smokes, what a nightmare. I only have to go to the dentist to crap my pants, so I can't even begin to imagine the horrors you've been through. Really sounds like a horror movie.

A thousand thanks for sharing this - given the success rate we're seeing with baclofen, it's hugely important that we (and "newbies" especially) remain aware that it is a heavy-duty drug we're taking, and not entirely risk free. Nobody should be under the illusion that this is like swallowing Smarties with miraculous results guaranteed.

[coverto]

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

That is a helluva story!

I hope more studies and more acceptance will make it unnecessary for self-medication. I think it good to keep in mind that this cautionary tale - whose legitimacy I have no reason to question - represents more of an exception than a norm.

As addicts, we are especially prone to over-doing things. We should rightfully be suspicious and self-conscious about any self-medication. But, remember the fact that even doctors who prescribe Baclofen at all may not be open to higher doses, and Ameisen's open frustration that low-dose studies are doomed to undermine the drug's efficacy... and we are left with a conundrum in taking matters into our own hand.

I think I speak for most on this forum in saying that self-medication is not the preferred option - but the time has come - and the general safety of Baclofen adequately demonstrated - that we be bold, take our fate into our own hands, and demonstrate to the medical community what it refuses to study.

This cautionary tale should inform all of us who might self-medicate: Too much of a good thing can present problems. Treat yourself with due care. Have a friend or loved one monitor your progress if at all possible. And hope for a day when proper research might fill in the grey areas in which we roam...

[Bruunhilde]

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

C0ffee, thank you for sharing your trauma with us, as has been said by other here, we need to hear all of it, and to remind ourselves that bac may be considered a "safe" drug, but at these high doses, with Al, who can say what is safe? I'm so sorry you had to go through this nightmare. You have doubled my resolve to call Dr. L.

UK, hang in there. L0op, couldn't have said it better.

Regarding the detoxing you off bac with high doses of valium, then pheno and propanol, wow. And the addiction doctor sounds like he's not really understanding the high dose bac protocol. Good for you for not quitting the fight after gonig through all of this. You and your family have been through hell. Keep posting so we can see how you're doing.

[prancy]

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

I think it also bears repeating that drugs are not one size fits all. I had been taking bac last year and was experiencing too many side effects before I hit any switch and so I quit taking it. Now it is a year later and I am once again struggling to stay AF. I started taking it again about 10 days ago. I feel weird, wired, and anxious. My stomach burns and I have cramps. My sleep is tortured by strange, intense dreams and I wake every two hours. And then in the middle of the wired feeling, I almost drop off to sleep. My brain feels scrambled as I try to work. And my work requires me to write so this is not good.
Several years ago when I was undergoing chemotherapy, I had an almost psychotic reaction to a nausea drug that is the gold standard for chemo. The doctor and pharmacist discovered I was allergic to it and switched me to something else. It is not that it wasn't a great drug. It just wasn't the right one for me.
I know bac does wonders for a number of people on this site and that is STUPENDOUS! But I do think we have to use caution with all strong drugs and remember that everyone is different.

[help4me]

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

Wow! What a horror story. So sorry you were faced with that coffee

The first time I tried BAC I stopped as the SE's were crazy out of control mind blowing awful for me. However I kept reading and reading the success stories of how to do it right (slow steady titration) and when I started again in Jan I did just that. I did hit my switch recently and it is just amazing. Undeniable and something I cannot even begin to tell you is nothing slight of a miracle..... worth every SE I ever faced.

Anyway, I digress... what I was going to say is that when I first went to my Dr. about my issues, she ended up prescribing me Campral... which did NOT work for me and... lead to my health insurance being cancelled. I'm not kidding you. They dropped me when our reviews were up because of this. I have since found new health insurance and a new Dr. I will never ever ever again divulge my alcoholic worries to my new Dr. Watch out people when opening up fully to your Dr. Just saying.....

[Bill Gorton]

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

C0ffee, have you considered talking to a lawyer about suing the hospital? Rather than treat your condition (combined baclofen/alcohol withdrawal) with baclofen, they treated you with drugs so extreme that you required respiratory assistance? And then they kept you in this state for weeks, and, technically, let you die twice. You should have been home in a few days at most. And all because the hospital wanted to follow protocol and avoid liability. After all , if you'd died (permanently), they could have claimed it was the result of your self-inflicted drug addiction, not due to their undermedication. Your case should be a rallying cry for sanity in the treatment of addictdion.