Baclofen advice required

[Molly78]

The "re progaming of the brain" is an interesting idea. If that's what happens, it should be possible to come off baclofen altogether at some point & remain indifferent. Well that could happen I guess, we need folk to come along to this forum & keep updating us about longterm progress.

This reply is coming out piecemeal because I am looking after my 2 year old granddaughter today & every time I pick up the laptop I hear "GRANDMAAAAA....."

Also I didn't mean to imply that you use the half life to determine frequency of dosage. If you are taking large doses, you can go longer between each dose, whereas if you are getting bad SE it's bast to stick to small frequent doses. Ideally I would like to take my 3x50mg first thing in the morning, lunchtime, and bedtime. However when I tried this I consistently woke at 3am, & my explanation to myself for this was that at this point the bac was all leaving my system - you might have some thoughts on that theory?

S*d it I hear "GRANDMAAAA....." again. May be back later, you've made some good points.

[Molly78]

Attempt 3: You underlined in your post "baclofen being safe". I would hate anyone to think I'm ,making a case for it NOT being safe. I'm just interested in what SE we might see in the longer term. Somnolence, tinnitus, tingling in the hands, all the annoying symptoms as you're titrating up are clearly inconvenient but not a big deal. It looks as though some of us (possibly me included) will be spending the rest of our lives on baclofen. I'm already 65 so that won't be too many years, but for people in their 30s? Maybe I'm just getting ahead of myself here.

Granddaughter is watching a programme called "Paw Patrol". Are you in the UK? Have you ever seen it? I beg to not to try, I'm sure it messes with your brain chemistry more than bac & alcohol

[nicnak68]

I tried going up to 4 doses because of feeling sick but I found it harder to do and remember and the sickness subsided somewhat.
And because I originally hit my switch at 3 I've gone back to that and find it easier to manage.
I've got a pill box with 3 compartments so I can see if I've forgotten to take my evening one.Like last night,went to bed early then woke up at 12.30 and didn't know if I'd taken my evening one and looked in the pill box and saw I hadn't taken it.This can be a regular occurance with drinking.So even though I normally take my last dose at 8 I think 12.30 is better than missing it.
When I became indifferent the first time I took 60mg 3 times a day and it worked for me then.
I'm at 270 now and still no switch but I'm keeping at it,wanted to give up a few times because I've felt so ill but I know it works and loved the feeling of indifference so I plod on.
People say didn't you miss the alcohol and what did you do to fill the void but at that point I was just like a non drinker.Even watched my husband drink a nice glass of red wine with his dinner and thought it would be nice to want one of those but I just didn't want it.
Just waiting now for it to happen again

[Molly78]

Nic, it sounds as though you reached the state we all aspire to first time round. I hope you can find it again.

I am learning a lot from people like you who have achieved it once, then lapsed. I'm getting the impression it's more difficult second time around, but I know there are those who have done it, so don't despair!

[nicnak68]

When I reached indifference after only 16 days I was worried about a new batch of drugs coming so went down to 135mg a day when the urge to drink started.I had only been indifferent for 16 days and although I had been a member on here in the past I now couldn't get on because of a JavaScript problem so I had no one to ask for advice.They sorted out the problem but by then I had started drinking again.My advice to anyone is once you hit your switch stay there for a good few months before going down.I thought I knew about dosing from other bits I had read on the internet but this really is the best place for advice,although as we know Baclofen is so individual to each person

[Molly78]

It is indeed individual to each person & I think we need to remember that during all our discussions here.

And Knob - now that I've taken the rugrats home, I just wanted to add a more coherent post to the scrappy bits above. Then I'll shut up about SE as I am annoying people & I hijacked Ne's thread last night banging on about them. I blame my OCD.

First, there are no SE of bac that I have experienced, read about or speculated on, that could be as dire as the results of continuing to drink alcoholically. I am eternally grateful for having found it.

With regard to SE generally, ALL drugs have SE, if they have effects, they have side effects. Therapeutics is about balancing the two. For any drug it's important to

1) Record the SE. This is what I have been trying to discuss. People have a right to know the risks they are taking when they take a medication. For us on bac, as we are using it off label & at high doses, this is uncharted territory.

2) Monitor the SE. Are there predisposing factors? eg my preexisting scoliosis. Can the SE be prevented by altering the dosage schedule? Again, we are experimenting with that, & only have each other here to discuss the problems with

3) Treat the SE if possible. There are many instances in medicine where people are prescribed a second drug to treat the SE of the first.

4) Assess the risk/benefit ratio. If you're dying & there is a toxic drug that might save you, you're probably going to go for it whatever. For less dire conditions the decision is less easy. I have to say, I think for most of us here, bac is in the first category. I don't know where I would be without it. Not in a good place I suspect. Possibly dead.

So here on this forum we are as a communtiy trying to work out all these things between us, without very much hard evidence to refer to. Not surprising that we tend to disagree at times. But vital that we continue to communicate.

[knobert]

Hi Molly

I am glad for your posts. Everything we say here, at least for me, helps us on our quest to kill the monster of AUD. You bring up questions that many of us have thought about for a long time.

You asked if one can eventually quit taking baclofen. It has been done, they say, but I, like Dr. A did, will keep taking it until something better that cures addiction comes along.

To me, and I think pretty simply, it goes like this:

I started drinking in my teens. When I first tried baclofen, I was 54. I had 38 years of drinking under my belt. I find baclofen and it cures my addiction to alcohol. I have only been taking bac for 3 years. If I wean myself off of bac, which behavior will I most likely adopt. Indifference to alcohol, relatively speaking, is still new to me.

A lot of people have quit alcohol with abstinence alone with the aid of many tools, AA etc. I think that is great. For me, dealing with the cravings on a constant basis was overwhelming. Even though I was not drinking, I still was indirectly being controlled by alcohol. The abstinence dictated my whole life.

As you say, every person's case is unique. That is sad and wonderful at the same time.

Don't forget, medicine is not an exact science. We sign testament to that every time we have any procedure done. I believe, now that science has taken a lesson from bac, there will be great things ahead. I feel the isomer R baclofen will be a great success. Dr. A was already aware of this.(See his book, page 291, abstract 4). However, I do not think that it will ever be available to me. It will be extremely expensive and my insurance would not cover it. Such is capitalism. However, good things are coming to people after us. Eventually, it will go off patent.

Anyway, I hear you're a grandmother. One of my older brothers said becoming a grandparent restored his zest for life. Gave him meaning again.
I remember my parents, rip, when they became grandparents. My dad cracked me up. He said that being called grandpa' didn't phase him, but going to bed with a grandma' bothered him. --LOL--

Take care and keep discussing
Knobert :thumbsup:

[knobert]

Hi Ment

I totally agree with you. If your previous lifestyle led to you not having cravings during the day, do what Dr. A did and adjust your doses accordingly. Hopefully, it may help to cut down on drinking.

I think that is a great idea.

Take care

Knobert :thumbsup:

[Mentium]

Advice needed I think for the following.

I am getting baclofen on prescription and also ordering additional bac on-line as I am somewhat anxious that the medic who is prescribing won't be happy to see me going with a larger dose than I think an expected maximum of 100 mg a day.

My prescription will need to be renewed in about a week's time. My question is this: do I come clean and explain what I am doing or do I just carry on supplementing the prescription as I am doing at the moment? I feel uncomfortable not being straightforward with the medical person, especially as I have a great deal of respect for them. On the other hand if I tell them that I may (possibly) being going up to the region of 300 mg a day (I hope not but it is possible!) they might freak and refuse to support that sort of level of intake. They might also just be willing to fudge the issue but that doesn't strike me as a strictly ethical approach.

What do people think? Some of you must have had to negotiate this tricky situation yourselves.

[Ne/Neva Eva]

My psychiatrist has a limit to what she will prescribe and won't go above it. She knows how much I take, which is a lot more.

If you'e talking about Dr. Chick, I don't know. I have gotten the impression that most people just don't tell him, but it's worth asking, since most people take more than what he actually prescribes. I just doubt that he knows that...

Good luck either way.

[Molly78]

Why not email Otter? His wife was a patient of Dr Chick I believe, he will know what his approach is, or what the "official" line of UK physicians is generally.

[Molly78]

Thanks, Fred. That is enormously encouraging.

"....tracking drinking patterns kept me in an exhausting state of fear..." Now that I can relate to. I am currently taking bac & drinking about 3 days a week, about 4 units each time, sometimes more. This sounds good, but I find I am constantly thinking about units, total units, units per week etc In other words, drinking alcohol (or not) occupies my mind more than it should. This has led me to conclude that I haven't reached indifference yet. The dose I am on is helping to hold me at reasonable levels of intake, but alcohol is still in my thoughts. This was at 150mg daily.

So I am increasing my bac again. Now at 200mg daily & starting to feel the difference. 6 days have gone by without a drink & without missing it, admittedly a busy week, but let's see what the weekend & next week brings. Up to now, I don't think I have hit "the switch", & I think this is necessary to reset the brain chemistry in the way yours was obviously reset.

This forum is so helpful for bringing this sort of information to light in what is an evolving treatment.

[Molly78]

Just to clarify that post - you were tracking your consumption to see whether you still had a problem or not, I am tracking my consumption because I haven't got out of the alcoholic way of thinking yet. I'm hoping the right dose of bac ("the switch") will sort that.

[Danathos]

I've decided to go on the offensive with Baclofen once more. As of today im at 150mgs. My psychiatrists are downright unpleasant and I no longer feel I can rely on them to treat my mental state, and as a result I have noticed drinking creeping back into my life after I had lowered bac dose to 90mg p/day. So asI have said I'm going to now try treatment with Baclofen as aggressively as I possibly can, thoughI regret that my doctor will only know about (up to) 100mg

[Ne/Neva Eva]

Slow and steady, Dan.