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[suneelca]

Next into the pool ...

Posted about MD shrink 'doctors that prescribe Baclofen for addiction' thread. Thanks for nudging!

Would it be useful to create a thread on strategies for using / titrating up on Baclofen without SEs? Is that really covered in the SEs and adverse reactions thread? I understand that each of us finds our own path, but obviously the experience of others is invaluable (which is this board's raison d'etre, non?).

I've seen Dr. L's titration schedule on another thread, for instance, but is he now advocating a set schedule, or titrating up based on stabilizing at a given dose before moving up? I understand your experience, Ne / Neva, and sort of get your husband's ... I think I whine about SEs more than most on this board, so not going to generalize, but would find a thread where positive (and negative) examples / experiences are congealed.

[Ne/Neva Eva]

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Thanks, Sun! I am nothing if not a nudge, I suppose. oy.

Yes, that thread would probably be useful. It exists of course, in many forms. But I think I've finally figured out that the old threads are useful as a baseline, and as 'research' for those of us who can't resist that kind of thing. But bringing the information up to date and with fresh people seems like it would be a really good step... What do you think?

Dr. L has changed his titration schedule only a little bit since the very beginning. Which, in case your interested and from what I can tell, was here:
https://www.mywayout.org/community/f2...ight=Dr.+Levin
https://www.mywayout.org/community/f2...ight=Dr.+Levin

He'd already been mentioned several times, but those threads are what finally got me to call him. Also one by Cinders, who couldn't take bac, but is still (thankfully) around MWO.

So...Wanna start the thread? (Oh, and almost all of us feel like we whine the most about the SEs. Except of course the ones who suffer them in silence. Don't worry about that. Don't you feel like it's helpful that other people have experienced--and lived through --what you're experiencing. I know I did.)

:l
Ne

[Ne/Neva Eva]

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If there's something you want to know about my experience, or Ed's, just ask. I'll ask him for you. (He's not a MWO kinda guy. He has threatened to participate just to get my attention, though. :H)

[suneelca]

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For some reason am not seeing when threads get updated, so then respond like 12 days later -- so first, thanks, Ne! Maybe Ed could come on and start a thread about this experience, or since one can surmise that if he were to be on here, he already would be, if you could post his SE-free experience, that would be great. Or maybe I'll start the thread on strategies and you can post that there, if you're comfortable?

In terms of where I am, I have been battling a lot of somnolence lately. Which is perplexing to me as I have been near my current dose of 140 mg since, like, early November. This can be problematic for someone starting up a complex business with a lot of moving parts -- potential employees, partners, investors. Odd thing is that I can generally power through a meeting and be with it, more with it than I was pre-bac. Maybe it's a bit of adrenaline?

I have tried a variety of strategies -- I'll get into those on the new thread (not that they've worked -- the only thing predictable about bac to me, in terms of this SE, is its unpredictability).

That said, I am holding at 140 mg plus two other meds that had been prescribed for bipolar (although now sure that diagnosis was wrong), plus l-tyrosine and a Valerian root-based sleep mix. May also try melatonin tonight. I'd like to ditch the seroquel, as per only convo with Dr. L, that may be contraindicated with the bac in terms of somnolence. But getting off may induce transitional insomnia.

Oh, the humanity!

But I continue to be extremely happy with the gains, and don't have a huge amount of reason to titrate up further. I was hoping to mod rather than abstain. Can't say I've hit indifference per se, but have had maybe 10 drinks over the past week, which puts me in the safe zone, finally. Been off cigs for three months, and smoke pot once a week, instead of daily, mainly to get me in the mood, so to speak (although it might be counterproductive ...).

I do experience a tug of war sometimes over drinking, so the strategy is to pour myself something. Most nights, I take two sips, it tastes awful, and I either pour it back into the bottle or throw it out.

Whatever works, right?

[MWOLady]

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Hi all, can I just jump in here to make a comment about anxiety, then jump back out again? I noticed a comment back at the beginning from someone that resonated with me. When I started taking Topamax, with GABA and 5HTP I immediately noticed a "spaciness" that sounds quite like some describe feeling on Bac, that has reduced my anxiety. This mild to medium anxiety, I feel, has caused my drinking over the years. So I can report that the combo of Topa, GABA and 5HTP has done for me what Bac has been doing for you. My point is that I sure wish I had not wasted so much time and money on Naltrexone and TSM because it did nothing for my anxiety. And although I did have some success on TMS and thought I was "cured" I continued to drink through Nal until eventually I stopped taking it, ended up looking here, and found Topa.

I don't know if I've added anything to this discussion...over, and out. P.S. I'm 20 days sober with NO cravings. And very little anxiety.

[suneelca]

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Many paths to the same truth, eh, MWOLady? This segues into a conversation with my MD shrink the other day in which we were talking a bit past each other. Fancy that!

I was trying to make a point about Baclofen being a miracle drug that has been the controlled variable in seeing:
- ALL of my addictions being snuffed out -- alcohol use down from a bottle-plus per night to no more than two bottles per week, smoking cigarettes, smoking pot, impulsive Amazon shopping
- All sort of prescribed psychiatric drugs offloaded
- Marriage mostly repaired after wife nearly ready to divorce around time started taking Baclofen
- Relationship with kid very close and getting better all time
- Business is moving ahead increasingly rapidly and recruiting great team

I also asked her whether she'd ever seen this happen with any of her other patients. She said a couple -- one on Baclofen, and another on another set of meds -- but I guess Benzos? Can any of you imagine getting those kind of results on a benzo? Amid shrinks also not liking sustained use?

She then attributed it to having cut down on the drinking. I contended it was about alleviation of high baseline anxiety -- how else do you explain effect on other addictions? Also that while the initial reduction in drinking was immediate, it was down to three to four a night level, and only recently to zero to two (with three as an outlier)?

She then wondered if it could be sustained. I then pointed out that my wife and I had our last major conflict four months ago, at the point just after starting Bac and found out she was threatening to divorce me. There's no way I could sustain a front for four months, and if one is tense and anxious, the tension and anxiety, in my experience, is palpable.

Net, I've come to believe in Baclofen as a cure all for a misfiring Amygdala. She still thinks she prescribed it to me for alcohol dependence. Why, oh, why, am I having this kind of argument with someone trained as an empiricist? (Not that I'm going to persuade her to question years of training in occasional 50 minute sessions.)

And she did prescribe Bac for me, on her own recommendation. In that sense, it does not matter whether the cat is black or white ... except she now has alc dependence on her bill, and not going to submit that to an insurance company!

In any case, I had been wanting to yank Seroquel because Dr. L had indicated that it doesn't go well with Baclofen. I didn't tell her that I had cheated on her with Dr. L, but she agreed, as sustained Seroquel use isn't good (now she tells me!). So transitioning off Seroquel with help of Ambien / Lunesta. Lunesta didn't work -- took two (which I think is 2x more than one should) and got two solid of hours of sleep and was a zombie yesterday. Took one Ambien last night and got four solid hours of sleep, and feel like a million bucks today.

She had also diagnosed me as bipolar and has me on 300 mg of Lamictal. I don't think I have BSD as Bac is the only thing that has stabilized my mood. I think I have become convinced by Ne's posts and others that Bac works best in isolation. Is the clarity I'm experiencing today because the Seroquel is gone? I'm also want the diagnosis expunged so I can get life insurance. So I want off the Lamictal as well. She's very cautious about that -- I guess she's worried about a manic episode. I'm not, but I get it.

The insomnia does worry me, and I don't want to become dependent on Ambien (although she won't let me stay on it anyway). She won't do Xanax, and neither would I, as I don't want to be on a Benzo. But I have mostly been able to get past temporary somnolence ... the SEs do pass?

Currently stable on Bac at 140 mg per day. Per previous posts, hanging out here as have no reason to move up or down, the light pangs for alcohol notwithstanding. I have light pangs to smoke cigarettes -- but doesn't mean I do it!

Life is great! God, I hope this lasts ...

[suneelca]

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Two last things:

- Am exercising 40 minutes to an hour a day. Might be helping with somnolence?
- My talk therapist told me that if I were to present to him today, he would say, 'why are you here?" My wife and I went to see him together last week, and he pointed out that the stuff we were bringing up is normal occasionally squabbling couple stuff.

[suneelca]

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And yet one more thing -- have lost 15 pounds!

[Cassander]

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[suneelca]

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Update: The attempt to quit Seroquel totally crashed and burned. The Ambien worked one night, but then didn't (even after doubling up). So back on to the Seroquel. Did say to shrink what Ne / Neva said in one of her posts -- take away alcohol, and that might help induce some insomnia. In my case, four other things have been offloaded.

My only concern now is that Seroquel and Bac don't interact well, per Dr. L. But shrink doesn't want me on Ambien or Lunesta long-term (and neither do I).

Back to the strategy of living with where I am and making the best of it, rather than constantly struggling with it. Where I am is so much better than where I was four months ago, so what's a little sleepiness matter?

[Ne/Neva Eva]

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omg. I love your most recent updates.

I'm right there with you. But it's 9pm. My husband made and has been keeping dinner warm for an hour, so I could finish my "homework".
Thank you.
Gotta run.

[suneelca]

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Things have been going reasonably well lately, at least since I went back up to 50 mg a night of Seroquel and down to 100 mg of Baclofen. Sleep is much better - between five and seven hours per night. Some somnolence at times during the day, but I guess that just goes with the territory. More of an internal dialogue than I would like some nights around having a drink, but between zero and two a night, so also trying not to stress about it. But on other nights am indifferent, and last Tuesday even felt indifferent about being indifferent.

Find am having some more situational anxiety lately, or am noticing more lately. Maybe the honeymoon is over? Been a bit more crabbing with my wife lately, although we don't go into the ditch like we used to. One of many hangovers from My Heretofore Anxious Life is being a conflict avoider, so even the crabbing can bother me. But we were watching Modern Family the other night, and two of the characters were crabbing with each other, snd my wife pointed out the obvious - that's not just life, that IS life!

You get me?

Am knocking on wood about much of what's above.

[Ne/Neva Eva]

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suneelca;1252554 wrote:

I was trying to make a point about Baclofen being a miracle drug that has been the controlled variable in seeing:
- ALL of my addictions being snuffed out -- alcohol use down from a bottle-plus per night to no more than two bottles per week, smoking cigarettes, smoking pot, impulsive Amazon shopping
- All sort of prescribed psychiatric drugs offloaded
- Marriage mostly repaired after wife nearly ready to divorce around time started taking Baclofen
- Relationship with kid very close and getting better all time
- Business is moving ahead increasingly rapidly and recruiting great team

I also asked her whether she'd ever seen this happen with any of her other patients. She said a couple -- one on Baclofen, and another on another set of meds

...

Life is great! God, I hope this lasts ...
Love this update, thanks. I have sort of similar conversations with my therapist. She was one of the therapists I had for group therapy when I was in a state-funded intensive outpatient program. (I did ~40 or so days inpatient and then started outpatient 6hrs/day, 5 days/week in 2005.) Point is she knows the disease well, and knew me pretty well. (Of course, I started drinking within the month after my 'release' from self-imposed isolation. And of course I lied about it. I think it really hurt her feelings to find out that I was drinking that summer. Sometimes I want to shake her. "BETH, it's what we DO!!!" But she knows this, so no antagonism needed on my part. What she still doesn't quite get is bac...But she will.)

I finally decided to table the whole discussion, because the evidence is in ME, and what I say is not as convincing as my actual life. She's going to believe what she sees. And hoo-boy, is there a lot to see. Bac in action is nothing short of miraculous.

And so last week I mentioned some concerns about long-term HDB and not having a local shrink and blahdy-blah, (all of the things I've been whining about for a year and done nothing to fix.) And she said, "But it works for you. Like nothing else has. Why change it?" ha! good point, right?

suneelca;1252555 wrote: Two last things:

- Am exercising 40 minutes to an hour a day. Might be helping with somnolence?
- My talk therapist told me that if I were to present to him today, he would say, 'why are you here?" My wife and I went to see him together last week, and he pointed out that the stuff we were bringing up is normal occasionally squabbling couple stuff.

Yep. Same here. Though I am so thankful that I have a therapist to talk to when things are not quite so clear. There are moments when I still revert, still get mired in fear and indecision, still...get into that old dried husk of skin. (God it's tight and bloated and uncomfortable.)
Plus, the evidence shows that therapy can make or break the search for wellness. So despite the fact that we are mostly "well", I hope we'll keep going.

suneelca;1255863 wrote:
Back to the strategy of living with where I am and making the best of it, rather than constantly struggling with it. Where I am is so much better than where I was four months ago, so what's a little sleepiness matter?

That first part is so much harder in some ways than struggling to get and stay sober. What to do with oneself when there isn't this huge pressing burden? It helps me to reflect on how much has changed from a year ago. But even that's not enough most of the time.

I'm trying to be very careful about what my diversions are now. I have always been, I suppose. My Intro to Psych professor (whom I love, despite his religiosity and the fact that he is profoundly anti-medicine. :H Little does he know. But he will!) said something about an empty vessel. You take away the problem, whatever that is, and it has to be replaced. We get to decide what to fill it up with. (Finally!!!)

suneelca;1260790 wrote: Maybe the honeymoon is over?

...
snd my wife pointed out the obvious - that's not just life, that IS life!

You get me?

Am knocking on wood about much of what's above.

OMG, I GET it.
Every time I think the honeymoon is over it starts again. I don't know if this is because I'm working diligently to create...contentment/wellness/whatever. Or if it's just the magic of long-term-ish sobriety with baclofen. Or if it, too, is just life.

I will tell you that I freak out a little bit every time something goes awry. (Is it over? Do I have to go back? Is the other shoe dropping from that really, really high place? Good God, if it does, it's likely to leave a huge crater!!!)
But here's the thing. I've had a premature, and sudden, death in my family. My husband and I are profoundly and amazingly communicative, even in our crabbiness. I got a speeding ticket last week. I was going fast enough that it's reckless driving. I also got a speeding ticket last summer. I am so screwed. I might even have to hire a lawyer!!! I have celebrated and mourned and lived every single day. Without being addicted to booze or having it define my life in any way. Those are all things that would have sent me into a frenzy before, abstinent or not.

It also took me a while to quit drinking altogether. I have also gotten drunk, and been very, very, very hungover. (omg. Please do not try this. And it was less than I used to drink in four hours--over a period of about 8 hours. It was also a result of not taking enough baclofen. Consider yourself warned!)

So. I'm going to just keep taking the pills. If one level doesn't work, I'll go up or down a bit. If I were in your shoes I would worry much less about the seroquel for now. (Not a doctor, don't know jack, but this makes sense to me.)

Much more to say, of course...But long enough from me today! Thanks again for the updates.

[suneelca]

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Wow, Ne -- thanks for all of that! I think that my MD shrink and my therapist have been impressed enough by what's happening to take more notice of Baclofen and to start to spread the word to their peers. To the degree that individual practitioners in private practice actually continue to talk to their peers.

Enough of this $#!t. Baclofen needs to go viral! Storm the battlements of the rehab industrial complex! Occupy AA!

In any case, gratifying to hear that the honeymoon doesn't end, or can seem to end, only to start up again. I re-read the FAQ on Dr. Ameisen's site the other night, and he talked about how his good experience was going strong four year later -- and assume he hasn't updated that in a while. And then read the new self-report by the UK physician today that reiterated a sustained effect. Although was wondering where he came up with the state that only a quarter of people with alcohol dependence would benefit from Bac. Where did he come up with that number?

Took Seroquel early last night and was asleep by 10:30, and slept straight through to 7:30 this morning. Longest stretch of sleep since last October, when went above 100 mg or so of Bac. All in all, one of best days since I started Bac, and thus one of the better days of my life, period.

No joke.

Thanks again, Ne. Can you elaborate on some of the things in your life (i.e. is the going to class stuff new, and how is that working with your ADD, for instance?) on your thread? So we have it all in one place?

[Ne/Neva Eva]

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suneelca;1261390 wrote:
Thanks again, Ne. Can you elaborate on some of the things in your life (i.e. is the going to class stuff new, and how is that working with your ADD, for instance?) on your thread? So we have it all in one place?
I wish I could. My life has been transformed. Revolutionized. By baclofen. By taking it all the way up to indifference and by being willing to take what I need to in order to stay well. I have tried to write that so many times in the last week, and I have yet to come up with anything shorter than several word-document-pages.
plus, I think people will not believe me. Or be mean to me. Or think I'm bragging. Or point out all of the ways that I am still so fallible.

My life is not just good in comparison to where I was a year ago, it's good relative to just about everyone I know. wow.

What you wrote here:

suneelca;1261390 wrote:
All in all, one of best days since I started Bac, and thus one of the better days of my life, period.

No joke.

Just wait, Sun. It just keeps getting BETTER AND BETTER AND BETTER. You will not believe. (Well, except that if you're like me, you'll take it completely for granted and forget and then have to have a rude awakening to how life could actually be. And THEN, holy shit, the rest of that day is amazing. But it only lasts a day. :H If you do get there, and then you forget, check in here.)

Oh. And it takes work. Bac does the initial heavy lifting, but lots of us get there and are still unhappy, or quit taking the medication, or whatever. Hard friggin' work. And money. And huge amounts of time. Time is the only thing I haven't figured out how to manage/make more of.

Sorry for the tome on your thread! It just comes spilling out...Imagine what my own post would be like.
(Oh. And the ADD? It's a pain in the ass. No solutions yet.)