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[YouKayBee]

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I can't see how a baclofen trial can ever be blind, or double blind because the SEs are so noticeable.

[Ne/Neva Eva]

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That's great, hopeful. In the studies that have been done before, the outcomes are better when there is counseling.

YouKayBee;1654466 wrote: I can't see how a baclofen trial can ever be blind, or double blind because the SEs are so noticeable.

I know, right? But the studies that have been done, there are fewer side effects than what we experience when we do it on our own. (Apparently, there's a phenomenon where people under-report their side effects when they're involved in research projects. Interesting!) I have wondered for a long time if it's related to when/how they take the medication, or titrate up, or if it's just that the studies have mostly been on low doses. Or the comfort of having a doctor actually prescribe it and monitor the participants? (Self-medicating totally freaked me out when I started. Still does in a way.)

The bottom line, though, is that even if it becomes clear who is taking what, no one set it up to be that way. And baclofen works for a lot of people...I'm excited that another study is being done.

Anyway, thanks for the answer and best of luck, hopeful.

[hopefulinOz]

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I said the same thing to the trial nurse - that it will be pretty obvious I got the placebo if I get no side effects. She said not necessarily, because people who are reducing or stopping drinking may experience side effects too. But yeah - I think I'll know. Even if I'm on the placebo the counselling and diarising of anxiety, sleep, craving should help. It's something for me to be accountable to.

[hopefulinOz]

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Brief update.
I started the trial today. They wouldn't let me start yesterday as I was unsuccessful in abstaining over the weekend. Yesterday I had bloods done which returned normal. Today I filled my prescription at the hopital pharmacy. There are 3 groups: low dose baclofen (30mg a day), high dose baclofen (75mg a day) and placebo. I took one tablet today, I take one tomorrow, then 2 a day for the next 2 days, and then 3 a day thereafter. I am pretty sure I am NOT on the placebo. I have had a headache and felt light headed since I took it. This probably isn't ideal, but I bought a bottle of wine because I wanted to test myself. I bought one bottle rather than the 2 I usually buy, and I feel no anxiety about the fact that once the bottle is gone I don't have anymore.
Also, as part of the trial I am wearing like a watch type thing on my wrist every night for 14 nights to monitor my sleep. How long it takes me to get to sleep, how restless I am, when I wake up during the night etc.Next week I attend for most of the day for some monitoring where they hook me up to wires and monitors etc, hand me a drink of my choice (Sauvignon blanc) and observe what happens in my brain when I smell it, look at it etc.
I just feel really excited. I feel like I'm part of something bigger than just myself and my drinking problem. For some reason, that's helping.

[Ne/Neva Eva]

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hopefulinOz;1657820 wrote: Next week I attend for most of the day for some monitoring where they hook me up to wires and monitors etc, hand me a drink of my choice (Sauvignon blanc) and observe what happens in my brain when I smell it, look at it etc.
I just feel really excited. I feel like I'm part of something bigger than just myself and my drinking problem. For some reason, that's helping.

That is really interesting and neat that they're going to see what sort of brain response you have to booze. Will you fill us in on all the details?

I'm really excited for you and definitely think it's a benefit to all of us! :goodjob:

[Xadrian]

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I wouldn't call 75 mg "high dose baclofen", but hey, it's something.

Are you going to stay at the 3 pills, or is it increasing any further?

If you going to stay at the 3 pills, I guess you're in the 30 mg part. Titration to 75 mg in such a short time would be way too fast.

Success anyway. Keep us updated.

[hopefulinOz]

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Don't know. If they differentiate too much on a trial it would be a giveaway?

[hopefulinOz]

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Yeah I drank it. They have asked that I try to be abstinent, but I have to record how much I drink daily so I guess it's not a must, although obviously desirable.

[hopefulinOz]

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OMG I am so spaced out/sleepy on baclofen. I don't think I am on placebo.

[Xadrian]

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hopefulinOz;1660225 wrote: OMG I am so spaced out/sleepy on baclofen. I don't think I am on placebo.

Looks like you got the real stuff.

[Ne/Neva Eva]

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hopefulinOz;1658348 wrote: Don't know. If they differentiate too much on a trial it would be a giveaway?
I agree. They couldn't change the protocol without knowing which person gets what and that would mean it wasn't blind, much less double-blind.

hopefulinOz;1660225 wrote: OMG I am so spaced out/sleepy on baclofen. I don't think I am on placebo.

:H I bet you are!

Plenty of people have found success on less than 100 mg, by the way. I wish I'd been one of them, and I hope you are!

[hopefulinOz]

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Update so far:
I am convinced I'm on 75mg a day. If I'm on 30mg I have a lot of side effects, and if I'm on placebo I must be really susceptible to the placebo effect!
Side effects - brain zaps, similar to the feeling when you're going off anti-depressants. Weird feelings in my ears. Not ringing exactly, but that feeling you get when you yawn, except it happens when I'm not yawning. Extreme fatigue - feeling like I might fall asleep at the wheel or at my desk. I had to go sit on the toilet a couple of times at work just so I could close my eyes for a couple of minutes. I also feel extremely odd if I try to nap during the day. Like I'm high. Very weird and graphic dreams.
In terms of alcohol - yes, I probably feel a little less interested. But not uninterested enough to stop my habit of going and buying 2 bottles of wine. If I didn't have my responsibilities with the kids it would be easier - I could go to bed and sleep by 6pm.But I can't. So a big part of my problem is not knowing what to do with myself without booze. To be honest, I was expecting bac to be a magic bullet but it's not.
I honestly don't know how someone can take higher doses...I'm virtually comatose and the most I'm possibly on is 75mg. I will get a prescription at the end of the trial, and I'll ask for 80mg a day, but if they won't prescribe that I'll just order it online.
I did the cue-reactive testing last week. It was interesting and boring at the same time. I arrived and they took a blood sample, and then they have me take a pill and wait for an hour. Then another blood test. Then I went off with the neuro psych guy who hooked me up to these sensors. I watched a 4 minute nature video to classical music and then had to do a questionnaire rating my anxiety and craving at that moment. Then I had to do a 15 minute card game. They told me the aim was to see how alcoholics make decisions. Whatever. Then another questionnaire. Then another video...whales diving in the ocean blah blah. Later the guy told me the point of the videos was to give a baseline. Then they handed me a bottle of water and a glass. I had to pour the water into a glass and hold it for 5 minutes, smelling it, imagine what it would be like to drink it etc. Did that, then another questionnaire. Then they handed me a mini bottle of my favourite sauv blanc and a wine glass and I had to do the same (but not drink it). Then another questionnaire, and another bloody nature video and another blood test and I was done. I was told the blood samples are frozen and tested at the end of the trial.
I'm just wondering that now I'm on 3 pills a day and it hasn't really impacted my alcohol consumption if I can expect it to improve over time? Or have I already reached the peak of what I can expect?

[hopefulinOz]

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Update so far:
I am convinced I'm on 75mg a day. If I'm on 30mg I have a lot of side effects, and if I'm on placebo I must be really susceptible to the placebo effect!
Side effects - brain zaps, similar to the feeling when you're going off anti-depressants. Weird feelings in my ears. Not ringing exactly, but that feeling you get when you yawn, except it happens when I'm not yawning. Extreme fatigue - feeling like I might fall asleep at the wheel or at my desk. I had to go sit on the toilet a couple of times at work just so I could close my eyes for a couple of minutes. I also feel extremely odd if I try to nap during the day. Like I'm high. Very weird and graphic dreams.
In terms of alcohol - yes, I probably feel a little less interested. But not uninterested enough to stop my habit of going and buying 2 bottles of wine. If I didn't have my responsibilities with the kids it would be easier - I could go to bed and sleep by 6pm.But I can't. So a big part of my problem is not knowing what to do with myself without booze. To be honest, I was expecting bac to be a magic bullet but it's not.
I honestly don't know how someone can take higher doses...I'm virtually comatose and the most I'm possibly on is 75mg. I will get a prescription at the end of the trial, and I'll ask for 80mg a day, but if they won't prescribe that I'll just order it online.
I did the cue-reactive testing last week. It was interesting and boring at the same time. I arrived and they took a blood sample, and then they have me take a pill and wait for an hour. Then another blood test. Then I went off with the neuro psych guy who hooked me up to these sensors. I watched a 4 minute nature video to classical music and then had to do a questionnaire rating my anxiety and craving at that moment. Then I had to do a 15 minute card game. They told me the aim was to see how alcoholics make decisions. Whatever. Then another questionnaire. Then another video...whales diving in the ocean blah blah. Later the guy told me the point of the videos was to give a baseline. Then they handed me a bottle of water and a glass. I had to pour the water into a glass and hold it for 5 minutes, smelling it, imagine what it would be like to drink it etc. Did that, then another questionnaire. Then they handed me a mini bottle of my favourite sauv blanc and a wine glass and I had to do the same (but not drink it). Then another questionnaire, and another bloody nature video and another blood test and I was done. I was told the blood samples are frozen and tested at the end of the trial.
I'm just wondering that now I'm on 3 pills a day and it hasn't really impacted my alcohol consumption if I can expect it to improve over time? Or have I already reached the peak of what I can expect?

[Ne/Neva Eva]

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Hi, Hopeful. I have some thoughts. Hopefully they're helpful.

I had more side effects at 30 mg than I did at 90 mg. I'm not suggesting that you are *only* taking 30, just that the side effects vary by person and by dosage.

One of the recommended titration schedules would have people increasing by 10 mg per week. Which means that even at 30 mg you were already way ahead of that schedule.

It takes much more than a couple of weeks for the very vast majority of people to experience a difference in their craving and consumption. Even if your drinking history isn't as dramatic as some of us, and even if you're taking 75 mg, I would have been (pleasantly) surprised if you had already found some sort of dramatic change.

Without question, there is a correlation between dosage and cessation of craving and consumption. But there is also a correlation between time and cessation of craving/consumption. Remind me how far along you are and how long the study is?

Afternoon/evening somnolence is a very well documented side effect. It's really dreadful. Sorry. :l If you start a thread, people will surely offer suggestions/advice/support for dealing with it.

The testing you had to do sounds...frustrating to experience. (I think I would have lost it after the first nature video. Patience is not my forte.) BUT it's pretty cool to read about and I'm very interested to find out what they're looking for and what they'll find. So sorry. But yay! :H

Finally, please don't stop being Hopeful. This sobriety thing is a mind-game. (And a mind-f*ck sometimes.) If you focus your mind on being free, it will give your brain the room to get healthy. Really. I mean that. And science (that Holy Grail) bears it out. Watch your thoughts, stay focused on the positive aspects, find solutions to the daily grind, remember this: FREEDOM is yours and soon. :l:l:l

(P.S. I know this might be annoying to hear when you're in the thick of the fight, but it really is worth it.)

[beckty]

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Ne/Neva Eva;1662538 wrote: Hi, Hopeful. I have some thoughts. Hopefully they're helpful.

I had more side effects at 30 mg than I did at 90 mg. I'm not suggesting that you are *only* taking 30, just that the side effects vary by person and by dosage.

One of the recommended titration schedules would have people increasing by 10 mg per week. Which means that even at 30 mg you were already way ahead of that schedule.

It takes much more than a couple of weeks for the very vast majority of people to experience a difference in their craving and consumption. Even if your drinking history isn't as dramatic as some of us, and even if you're taking 75 mg, I would have been (pleasantly) surprised if you had already found some sort of dramatic change.

Without question, there is a correlation between dosage and cessation of craving and consumption. But there is also a correlation between time and cessation of craving/consumption. Remind me how far along you are and how long the study is?

Afternoon/evening somnolence is a very well documented side effect. It's really dreadful. Sorry. :l If you start a thread, people will surely offer suggestions/advice/support for dealing with it.

The testing you had to do sounds...frustrating to experience. (I think I would have lost it after the first nature video. Patience is not my forte.) BUT it's pretty cool to read about and I'm very interested to find out what they're looking for and what they'll find. So sorry. But yay! :H

Finally, please don't stop being Hopeful. This sobriety thing is a mind-game. (And a mind-f*ck sometimes.) If you focus your mind on being free, it will give your brain the room to get healthy. Really. I mean that. And science (that Holy Grail) bears it out. Watch your thoughts, stay focused on the positive aspects, find solutions to the daily grind, remember this: FREEDOM is yours and soon. :l:l:l

(P.S. I know this might be annoying to hear when you're in the thick of the fight, but it really is worth it.)

I personally found this post helpful. Patience is also not my strength. I am on 45 a day and just really wanting to ramp up more quickly. I've got to remember for myself, as you said, that TIME is an important factor here and to also quit heaping loads of guilt on myself for not being able to get myself more than a day here or there AF as I try to work this out. Guilt/Shame is so counter productive!