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The End of my Addiction

Titrating down


Molly78
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After 3 years & 3 months of sobriety i have decided to titrate down my baclofen.  All things being equal, I would carry on taking 180 mg daily for the rest of my life.  Unfortunately I am finding that my back problem is worsening despite my efforts with Pilates & yoga.  I have a lumbo-sacral scoliosis which, although it is a common problem for the over 55s to some degree, I fear I have progressed it by injudicious use of bac plus alcohol during my initial (failed) attempts at sobriety in 2011.  And I am concerned that continuing with HDB might be allowing the condition to progress even faster.

Anyway.  I thought I would go down by 10 mg per week, which would take me 18 weeks or 4 and a half months to get down to zero.  Which seems a reasonable timescale after 3+ years, but what do other people think?  Your advice/thoughts/experiences would be very welcome.

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@Molly78  That's the schedule that both @Jetsman32 and I are following.  I've only been doing that for about a month.  If you're going to go down to 0, are you planning on being AF?  I'd like to go to 0, but that's the only way I'd take the chance... if I was planning on remaining AF forever.  Alternatively, I was thinking of adding naltrexone if I do drink occasionally, and maintain a decent level of Bac. 

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4 hours ago, Mom2JTx3 said:

 If you're going to go down to 0, are you planning on being AF?

I'm not AF now, just drinking about 14 units a week.  Guess I might try to stick at that.

Not sure about going down to zero - will see how I feel as I go down, like you say, based on craving and anxiety levels.

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Hi Molly. I was having bad hip/back problems that I had questioned whether the Baclofen had created/contributed to. I titratted down (currently at 10mg at day). I have been at this level for a few months now. I see a physical therapist and chiro -- though I have had to cut back significantly on both due to work schedule. I say that because even with a dramatically reduced regime of care, my issues seemed to have almost completely resolved from lowering the Baclofen dosage.

Now for the rest of the story... I am drinking a shit ton. Still functioning and all... but I'm drinking probably 2 beers and a third of a fifth of vodka a night. Not sure how many ounces or units that breaks out to be. I don't even seem to get drunk. Just feel fairly normal. It does not feel "healthy" however. I just upped the baclofen this morning by 10mg. I'm going to inch up and see if I can get relief at a lower level, then go for AF for a while and try and calm the drinking beast down. Yikes.

My back and hip relief is major, though. The good news for me is that the pain/issue seems reversible with the lowered dosage. Good to know if I have to ramp back up for a bit to stop drinking. 

I went down 10 mg every 3 to 5 days unless I hit a snag (anxiety). Then I'd either bounce back up by 10, or stay steady. 

 

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Hi,

   Hope everyone is well. Thought I'd chime in as well. This is week two of my slow taper down. I have done 10mgs per week and will go down to 280 next Monday.

    So far no cravings at all so that is a good sign. How do I know how low to go though? I have no idea what my permanent dose will be and don't want to taper to low. Any advice?

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Thanks @DunDrinkn & @Jetsman32.

I am really pleased to know your back problems resolved, Dun.  I don't expect mine to resolve as such - a scoliosis is not reversible - but I would be happy with less pain, it's the discomfort that makes me uneasy that the deformity is progressing.

Jets, I don't know what to advise re permanent dose, but judging by Dun's experience, & the experience of others who have posted here, I would be concerned about going right down to zero.  I plan to get down to about 90-100 mg daily ( half my present dose) & see what happens.

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It's almost six months AF for me and I'm thinking of titrating down, currently at 100mg/day and want to go down to see if the depression resolves/abates at all.  I think baclofen contributes to my depression somewhat and prevents ADs from being as effective as they could.  I might go  even slower, like 5 mg per week.  

@Jetsman32I would just keep reducing each week until you feel cravings get out of hand.  Then go up by 10 mg until cravings go away and stay there.  Almost everyone needs a maintenance dose, from  what I've read. Are you having any SEs from reducing? 

I'm looking forward to your and @Molly78posts as you titrate down . 

 

@Mom2JTx3 I've often thought of titrating completely off bac and restarting  TSM.  I like that it's not a lifelong commitment to medication. I'm too afraid right now.  Maybe when I'm more stable mood-wise.  

Good luck to everyone titrating down. 

 

 

 

 

 

 

 

 

 

 

 

 

 

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@Mom2JTx3 thank you - I also had never read that.  It makes a lot of sense & is very reassuring.

I think I have needed the 3 years I've been on treatment to "unpick" the addictive pathways, but now I'm ready to reduce down.  Interesting that the maintenance dose for some of the people in those trials was quite low, less than 100 mg.  That's what I'm going to aim for, say 80 mg.

By the end of May I will be down to somewhere round that level.  Then will come the real test.  I'm booked in for an all-inclusive holiday in Lanzarote with 2 of my grandsons - that includes free alcohol available all day.  I went the same week last year under a similar arrangement but on 160 mg bac.  We shall see.  If necessary I can go back up again when I get home.

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I have been titrating down with the intent of eventually going back up while AF to see if I can take better aim at the switch. At times I've gone down a little too fast, and can say that the main SE I've noticed is anxiety/depression, which are not usually a problem for me. The kicker is that it doesn't really hit you until a couple days after you've made too big of a step, so you can feel like things are going fine and then it suddenly catches you off guard.

For example: A few days ago my daughter chipped her front tooth in a swimming pool, and it really got to me. I mean, she's only 7, and it's an adult tooth that was barely a year old, and now it's chipped for life... kind of a bummer, but totally something cosmetic that can be fixed. Nevertheless, I was depressed and tearing up all evening. (Which is not my usual way of dealing with random, unavoidable setbacks.) I would say 10mg/week is conservative, but better to be on that safe side!

But that experience does make me wary, for the first time, about being on BAC at all, since I now see how even small drops can have a pretty significant emotional effect. If you somehow lost your whole supply and couldn't get another for a few weeks.... I can't imagine.

Regarding the muscular problems mentioned by @Molly78 and @DunDrinkn, I do think there is something there. I mean, BAC is supposed to be a muscle relaxant, right? And yet I've experienced a noticeable increase in my TMJ (jaw popping) symptoms. Usually, my jaw pops once in the morning and that's it, unless I am hungover, or didn't sleep well, or stressed out for some reason, in which case it might crack throughout the day. But now it is cracking all day, every day. It's even tight right now. Sleep hasn't been great and I thought it was because of that, but after hearing about the musculoskeletal problems of others, I think maybe there is something else going on. It relaxes some places, but tightens others? I'd love to hear other examples.

Edited by EraserHead
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@EraserHead I'm not aware bac tightens" anything - but I think for me it relaxed the core muscles of trunk stability which help keep your spine in alignment, so that a mild age-related scoliosis has got a lot worse.

Could the same be happening with your jaw?  I don't know much about temporo-mandibular joint dysfunction, but I'm guessing that if your jaw muscles are too relaxed then maybe the joint pops out of alignment more easily?

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Yup. That was what happened for me. Relaxed core muscles to the point that hip/SI joint went too slack. And muscles were not firing efficiently so when I would do something that would stress them, they didn't contract enough, or quickly enough to keep me from injuring tissue/muscles/ligaments. I have been on Baclofen for 4 years now, so it may be a cumulative issue. I had nerve pain issues prior, but this issue in particular has only been an issue in the last 6 months or so.

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I've been reading around on MWO and the french forum about titrating down.  There seems to be opinions all over the place.  I ran across this on MWO and am thinking about staying where I am for awhile.  I'm down from 310 to 270.  I had 2 glasses of wine last night and woke up with a raging headache.  I would have continued to drink but that was all there was.  See the second post by Lo0p.

http://www.mywayout.org/community/medication-research-and-support/40585-tapering-baclofen.html?highlight=titrating+down

 

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On 4/2/2017 at 0:06 PM, Molly78 said:

Could the same be happening with your jaw?  I don't know much about temporo-mandibular joint dysfunction, but I'm guessing that if your jaw muscles are too relaxed then maybe the joint pops out of alignment more easily?

Maybe! I really don't know. In the past, I always felt like my jaw got "tighter" and started popping more when I was under some kind of stress. I'm looking into finding a dentist that specializes in it, so I'll be sure to share whatever I learn. 

I just got into doing pilates, so I'm hoping that maybe that can stave off the effect on core muscles you and @DunDrinkn experienced. But it sounds like maybe there are a few long-term effects of high doses that remain undocumented.

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47 minutes ago, EraserHead said:

But it sounds like maybe there are a few long-term effects of high doses that remain undocumented.

Not surprising really as HDB treatment is in it's infancy.  It will be a while before find out what effects high doses have on otherwise healthy adults, previously high doses have only been used in people with disabling conditions such as MS or cerebral palsy.

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  • 2 weeks later...

Update so far.

Down to 120 mg daily (60+60) from 160 mg.  No craving or anxiety so far.  Relationship to alcohol remains the same.  I look forward to a drink at certain times of the week (decades of conditioning refuse to go away), enjoy the first drink but the enjoyment is psychological rather than chemical, if that makes sense.  Sometimes pour a second drink, but usually just a sip & then I really don't want it.  Strange, it feels like an actual aversion, really can't get it down.

Big change I've noticed is that I've started to sleep right through the night!  My sleep has been messed up for a long time, but for a while in the early stages of sobriety I was doing really well with just 25 mg quetiapine. Then it stopped working, & I now think that coincided with me increasing my dose of bac.  I was at about 100 mg daily for quite a long time & I think that was the time I was sleeping well.  Not sure now why I put the bac up further - I think I was looking for complete abstinence & thought I could get there by increasing the dose.  Actually habit & conditioning were the problem rather than craving alcohol.

I have added all sorts of stuff to the 25 mg quetiapine, not wanting to increase the dose.  Currently take 3 gm l-tryptophan which makes me fall asleep but wake an hour later.  Added 600 mg gabapentin which takes me through the night, but weird dreams & multiple awakenings to look at the clock, go to the loo etc. until this week.  Now looking to reduce the gaba.

Interesting the sleep thing.  It must be the reduced bac as I haven't changed anything else.  And I take the bac as 2 doses morning & lunchtime, so you'd think it would be out of my system by evening.  But as we have discussed elsewhere, long term the half life seems unimportant.

Happy Easter to everyone!

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Well I got up to 250mg with no switch,baring in mind my switch last summer was 160mg.This is the second time this year that I've tried to go down to zero and titrate up again but hadn't worked.So my plan was to go right down again and leave it a whole month before going back up again.

Funny thing is when I got to 200mg last week I had the feeling I didn't want to drink that evening and in 6 days I've drunk once and I'm now down to 100mg(yes I come down very fast),it's not indifference but I find it much easier to resist the wine and loosing weight is my biggest motivation because I lost over 3 stone last summer but want to loose one more.

Im starting to re evaluate this whole thing.Not sure if I should try the Bac again or naltrexone that I have.I know when I'm indifferent I love it and have no desire to drink but now I'm not idifferent it seems daunting to never drink again.

Anyway,I will go down to zero and use Natrexone for a month and see where I go from there  

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2 hours ago, Nicnak said:

t's not indifference but I find it much easier to resist the wine and loosing weight is my biggest motivation because I lost over 3 stone last summer but want to loose one more.

Silly question I know - but why not stick at 200 mg & keep resisting the wine??  And enjoy losing weight?

Can't help thinking people can get a bit obsessed with these ideas of "the switch" & "indifference" when actually maybe bac could just help you behave like a normal person.  That's all I hope for anyway & it's working for me, in that I'm no longer certain to die of cirrhosis.

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For one I've had total indifference twice and anything else just won't do if I'm on Baclofen.Im not sure how long it would last and although I only drank one day from thurs to tues the day I did drink I drank over 1.5 bottles of wine 

So it's on with this experiment again 

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Really interesting discussion. Much appreciated. I know most of you know my story. I titrated down from indifference at 320mg. I never had a 'switch'. I made a decision, which was fairly effortless as the obsession/compulsion was gone. Indifference means to me that I drank like a 'normal' person, though much less often, a little like what Molly describes. I didn't drink at home, mostly, and went most weeks without drinking anything. However, when I drank, even to excess (very, very rarely) I didn't have the rebound desire to drink. If anything, I was averse to drinking more. Kinda like normal? I guess. Who knows? I was indifferent from 2011-~2015. 

After a very short time at 320mg in 2011, I titrated up and down ridiculously quickly and inconsistently for the first year or so. Finally settled around 220/240mg for a couple of years. Titrated down, at 10-20mg/month in 2013. Life happened and lots of things went wrong. Deaths, workload, money worries, other uncontrollable and unforeseeable events. Stress increased exponentially in 2014. By the end of 2014, early 2015, after being on 80mg for about a year, I was drinking alcoholically (against my will) again. (These dates are not fixed. I'm bad with dates and time. I do know it took 7 months to get from 220mg to 80mg.) After that, no amount of baclofen made the difference in my ability to choose not to drink. Call it lack of will power, lack of commitment, too much stress/misery/depression. I don't know the answer. What I do know is that it got bad, y'all. If I had to do it over again, I never would have titrated down. That was a huge mistake. I couldn't foresee the stresses, I couldn't see the anxiety or increased drinking in the moment, and there wasn't a way to combat it when I was finally desperate enough. At this point, I'm not sure that I'll ever try drinking again. Too risky, even if I could drink "normally". I mean, if I really care that much about it, then I'm clearly not indifferent or normal. Right? Though I'm definitely being left out of some of the events one of my best friends is making for her wedding. Not that she isn't inviting me, but with the caveat that it's going to be boozy. I'm feeling left out, regardless. 

So. To titrate down or not? Of course, I guess. BUT. Be very, very wary. And if life starts to get crazier than normal crazy, well, consider going up. Also, I wonder if the body acclimates to baclofen for some of us. I found some research I probably couldn't find again without more diligent searching, that suggested that some people using intrathecal baclofen have it become less effective or ineffective. In those cases, a bolus may have helped, or a period of abstinence with a different antispasmodic, followed by introduction of baclofen again. I tried both those approaches last year. Didn't work for me.

On 4/3/2017 at 10:10 AM, Mom2JTx3 said:

Sunnyvalenting actually did titrate down to zero. She relapsed hard, with pretty devastating repercussions. Got into AA and found God. Have no idea what happened after that. Just FYI. 

On 4/18/2017 at 6:16 PM, Nicnak said:

For one I've had total indifference twice and anything else just won't do if I'm on Baclofen.Im not sure how long it would last and although I only drank one day from thurs to tues the day I did drink I drank over 1.5 bottles of wine 

So it's on with this experiment again 

I responded to your comments on Checking In, Nicnak. Sorry for my many repetitions. 

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Forgot to mention that it's very annoying to read that so many of you have had muscle issues, especially back problems, that may be attributable to bac. But thanks for sharing the info.

When I started baclofen, and certainly during and for the first year after, I was lifting weights and exercising regularly. Fast forward, stopped all that, added g.d. antidepressant that made me gain, add a total of 40 pounds and my back and hip problems are pretty serious now. I dare not titrate down given how fresh this quit is. *sigh* I know quite a few bac users who benefited greatly from lifting (myself included) and really need to get back to that. Yoga, when I was fit, made my back problems worse, not better. Running (now) also exacerbates the issue. Not that I really run, given my cigarette-laden-lungs. 

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@Ne1 Great to hear your experience! And I'm starting to get a better idea of the vicissitudes people go through when it comes to going up and down, hitting indifference or not...

I have decided to titrate all the way down, probably for the remainder of the summer. It was a tough decision. I started back in November, and had titrated up to 360 (while continuing to drink normally) without hitting anything I would call indifference. Then I decided I would take it down for awhile, and then try to go back up without drinking. But when I experienced the emotional effects of going down too quickly, it made me really question whether I should go back up again or just go off, for the following reason:

I'm going to be traveling in Europe for most of June and July, which will involve many different countries, trains, planes, hotels, and a lot of social events. Hotel bars will beckon, "Come have a martini!" as I stroll through the lobby. It would have been great to be indifferent. But as scared as I am of being an out-of-control drinker, I at least know how to handle that side of myself... But what I experienced on the bac withdrawal, I honestly don't know how to handle, and don't want to risk going through that when I'm on the road and far away from the usual sources of solace & comfort.

I usually pack for these kinds of trips with the assumption that everything I have could easily get stolen. If I were to lose all the baclofen while trying to maintain 300-350 per day, and not have an easy way to get more shipped to me, I can't imagine how I would cope! 

So I decided, instead, to titrate all the way down and just be OK with being my old self for a few months... When I get back, it will be a good time to start up again, and see if I can make that indifference happen, this time with a modified approach (i.e., trying not to drink on the way back up)!

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@EraserHead, pilates scares me. Dunno why. Maybe because my core IS so weak. And it looks SO hard. 

I've read your posts and feel remiss that I haven't responded on the other threads. I'm glad you joined us, and appreciate your insight and wisdom. Been meaning to get back to the discussion about supplements. Will get there eventually. Maybe. ha. My pDoc has me on a bunch, and wants me to take more, which is driving me crazy. But I'm trying this new thing called listening to her, in spite of my resistance to holism. ;) 

I totally understand your decision about the baclofen. Not about the fact that it might be stolen so much as that it might be better to go with the devil you know. The first time I titrated up was frankly pretty horrific. Granted, I was not at all disciplined about taking it regularly or reasonably. But still. It was tough. It doesn't have to be that way, and shouldn't. But it's hard to manage and more difficult coupled with compulsive booze consumption. And, well, time back on the sauce, and without the intention of abstaining, may give you some room to find extra motivation. It worked that way for me. Alas, it took rehab, too. Or at least that was the reasonable decision because I really wanted to arrest the progression without getting worse. I've been worse. (Made me smirk when the therapists in rehab or peeps in the rooms refer to "going to any length to use" or "having to hit rock bottom." I've been WAY worse than I was. Just didn't want to go there again. Not that it wasn't terrible. It was. It just wasn't devastating.) It always worries me, though, when people make the decision to go off of baclofen (or any other method) because I worry about the tailspin effect. You know the one. It starts with the f*ck its and gets worse from there. So be safe, please. @StuckinLA can verify the fact that I get more than a little nervous for my anonymous online friends. Not without reason! I know a lot of dead people. hmmm. Am I being hyperbolic? Annoying? sorry. 

I will tell you that one of the things that makes me nervous about this whole new-ish idea of Never Another Drink is traveling without enjoying local booze. My husband and I went to wine country for a week, stayed in Yountville and did the vineyards and wineries, when we were both contentedly indifferent. On the last day, I couldn't take even the idea of another glass of wine. Seriously. Fabulous restaurant for dinner, I ordered one of their fancy homemade-everything cocktails instead of a glass of wine, and couldn't drink that either. It was just too much. And I didn't get drunk even once, the whole week. (Hubs did, though, which was funny until it was annoying. ha.) 

@Nicnak wrote that settling for anything less than indifference is almost impossible to do. And I used to agree. Now? I know that I lived contentedly without drinking for a long time, and don't need to go to NoCal again, to do the same trip. But southern France? hmmm. I'd hate to miss out on that. I've read too many Peter Mayle books. I don't even like truffles, and prefer California wines, not that I'd admit that out loud. 

When's the trip?

(Obviously, it's feast or famine with me these days. Y'all might come to regret the rain we're expecting for the next few days.) 

 

 

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 The whole question about baclofen effectively treating muscle spasms for people with back problems is lost on me. I hit indifference at 310mg per day the same month I had back surgery. For the 4 months leading up to surgery I was titrating up (at a rapid rate). This makes me wonder if a lot of my pre-surgery pain was less than what it should have been due to the baclofen- which my surgeon and primary doctor did not know I was on! Since surgery I still have pain- but it is limited to sciatica in my right leg. This makes me wonder if the baclofen is in fact, helping to alleviate other post-surgery pain that I should be experience. I guess on this, I will never know.

    So far my taper down is going well. I am now at 270mg per day in 5 weeks. I am now going down 10mg every two weeks because I was noticing some slight anxiety in the afternoons. I still really have no interest in alcohol. Yesterday I had 2 drinks. I felt a little fuzzy but it didn't make me feel "good" like it used to. I am positive that baclofen has helped to erase that mind-body connection or euphoria that alcohol used to give me. I wonder if I am on baclofen long enough if that entire connection will be severed completely and I would be a "normal drinker" without baclofen? Don't worry though- I have no intention of trying!

     I also forgot to add  this but to @Ne1 point, I workout 5 days a week and tend to do fairly strenuous weight lifting. The sciatica in my right leg has basically stopped me from doing any form of leg exercises. No squats or running for me or the sciatica the next day is debilitating. The one thing I am doing is using the exercise bike to train hills so that my legs continue to get stronger. Anyway.  baclofen has not stopped or hindered that at all. The last two weeks I have kind of fallen off of my workout/diet plan. I've still tried to fast 5 days a week but I am a train wreck on the weekends. It bugs me because I was damn near perfect for 6 weeks. I think the problem is that my diet is restrictive. Because my goal is to lose fat and retain/gain lean muscle mass I need to eat a calorie deficit while eating 180g of protein a day. My meals have consisted of basically the same protein high foods over and over. I think I just slipped. Also, and I am being honest here, I might be overindulging in MJ. It seems like for the last two weeks I have vaped almost every night. In no way do I think I am addicted but I do know that it drains my motivation to get up at 6am the next morning and go to the gym. My plan now is to only have it on Friday and Saturday nights. The week nights are what is throwing me off. The problem is that I really enjoy it. It's so relaxing at night when the kids go to bed and it wipes out my anxiety completely. I don't get hang overs or rebound anxiety. Plus, it truly helps with the sciatica in my leg. 

     Last bit of news that I am super excited to share. My son was accepted into the Governor's School of Math and Sciences! He will live there for his 11th and 12th grade years. We are sad to have him moving out (in August!) but thankful that the school is only 40 minutes away so we will still see him on weekends. Getting into this school has been a huge stress on him so when the acceptance packet came on Friday it was like a huge weight was lifted. We are so proud of him! I don't know how he got so damn smart though. Other news- next week I start my final Master's class at Villanova. I graduate in June with my Master's in Human Resources Development. It's been a rocky 2 years and this last class (HRIS Statistics) almost killed me but the end is near!

 

Edited by Jetsman32
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18 hours ago, Jetsman32 said:

It's so relaxing at night when the kids go to bed and it wipes out my anxiety completely

Hmmm.  Didn't alcohol used to have that effect?  And look where that got you.  Just saying.:)

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@Ne1: Thank you for the kind words; that's very nice of you to say! This is certainly a great crowd, and I am really enjoying getting to know you all. 

I appreciate your concern. I'm also a bit worried about the tailspin effect, but I feel like things so far have been going OK. I've actually titrated down quite a lot (at 160 now), at a rate of about 20mg lower every 4-5 days. I know that might sound a bit steep, and I've been monitoring myself pretty carefully, mindful of the couple of scares I had when I started the whole going down thing. Some major anxiety reared its ugly head a few times, but I learned to keep it at bay by doing two things: (1) not drinking most evenings, and (2) taking the edge off with l-theanine and passion flower, which a post from @Jetsman32 turned me on to. In the meantime, I haven't felt any overwhelming urge to drink when I'm up alone at night (like I am now).

This week was a pretty good test: 3 concerts in one week, the first of which (on Friday night) I found exceedingly boring but had told a friend I'd go, and they had these big 20oz cans of Pilsner Urquell, which were the only thing that kept me afloat. After a few of those I was stumbling down the sidewalk on the way home (bac loves to screw up motor control), only to find no real urge to drink the next day. Monday night another show -- and this was a big one, during which I had quite a few beers & pinot noirs, as well as some friendly tokes of an MJ vape from some random stranger I let squeeze in by my seat (it was a good seat!). Stumbled out again, into a cab home, but then told him to stop outside my favorite restaurant so I could get a midnight burger and a few more glasses of wine... 

After these two indulgences, I was pretty determined I would not drink any more for the rest of the week, until a friend invited me to a show on Friday he had an extra ticket for. "I'll go," I thought, "But not gonna drink." Little did I know, my friend's plan entailed meeting up with some folks I'd never met at a brew pub beforehand and then sitting there ordering pitchers for 3 consecutive hours... When the second pitcher came, I was so friggin' BORED of my third iced tea, I was finally like, "OK, pour me some," and then just went with it for the rest of the night. It didn't get crazy, and no harm done. Have not had another drink since, and here it is Monday night. Half a bottle of whiskey sitting over there on the shelf... clean tumblers on the shelf above it... even got ice in the fridge... But all I had tonight was some green tea with that tiny orange spoon's-worth of l-theanine in it, and a Kevita... And this is all on 1/2 the dose I was on a few weeks ago, having never hit any switch!

I'm starting to develop a new theory about the whole mechanism of action for baclofen. Working it through...

Anyhow, we'll see what happens in Europe! My plan is to be down to zero by June 1, and I leave a couple weeks later. I think it will just be easier. And if I do start to tailspin, I will bring some bac, and it's always there, right??

Yountville! I hope you had that fabulous dinner at French Laundry?

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