Have I reached my switch yet? SEs becoming unbearable

[lookingforawayout]

Hello everyone,

First-time-poster, so please be gentle.

I'm a 29 year old female - 5' 5.5", weighing 119 pounds.

I started baclofen about three months ago after attempting suicide due to my drinking and long-term depression and have titrated up to 220mg, which I'm on now. I'm due to titrate up to 240mg next (I've been going up 20mg every five days or so), but this last move up has been particularly difficult. My vision is permanently obscured by flashing white spots, and occasionally I see lightning flashes of red or orange, and the twitching in my hands has got a lot worse. I also suffer from untreated carpel tunnel syndrome in both wrists, so wake up about 5 times during the night anyway because of that...now with the twitches it's a lot worse (up to 8 times a night) as it seems to set off the numbness and burning in my fingers. I also find that I'm getting much more anxious and panicky. Before baclofen, I suffered badly from anxiety, and baclofen has really helped me to conquer it, but suddenly it has returned. I tend to get anxious due to side effects though. When I'm lying in bed, the twitching and flashing lights get so bad that I start to panic about fainting (I have fainted twice and fitted once in the last week and a half), or I panic about not being able to sleep.

Prior to this, my chronic insomnia had vanished on baclofen, as it would knock me out in the evening (disturbingly so - my boyfriend would shake and shake me if I fell asleep downstairs but simply wouldn't be able to wake me up - he described it as being unconscious). Meanwhile, I would have terribly vivid dreams. When I did wake up, I'd wake up feeling incredibly lucid and awake straight away (and would invariably have to shake out my twitching carpel tunnel hands).

However, this last week has been a bit different. I still fall asleep when I'm least expecting it...but as I mentioned above, don't fall asleep when I want to. When I am asleep, I wake up repeatedly but am increasingly confused. I walk around and talk to myself and to my boyfriend as though I am still in a dream. Last night I felt as though I was dying - the panic was almost unbearable.

I'm due to go up to 240mg today, but have serious reservations. I didn't get baclofen prescribed by a doctor, but got it online and have managed my dosage myself. Unfortunately, I'm finding it increasingly difficult to think about my situation rationally, due to my side effects - today I was on the verge of going cold turkey! So, I thought I'd turn to you all for help.

My main questions are these:

- How do I know if I've hit my switch? I stopped drinking over a month ago now, but my last drink (at about 120mg) didn't really have that much appeal - it just made me INCREDIBLY tired. I could barely finish my last beer. I definitely didn't have that baclofen fairy-blessed, transcendent, epiphanic moment that many of you describe, and after that last drink I still thought a lot about drinking, but didn't do it. As a result, I didn't think I'd hit my switch. How do I know if I actually had, or how much higher I need to go to hit it?

- Should I keep on going, or should I start scaling down? Should I even try drinking something to test my switch out? I suppose I'm reluctant to keep on going higher and higher just for the sake of it - I can barely see out of my right eye as I'm typing this and the depression, which had finally lifted, is returning with a vengeance.

- I'm scared of scaling down. Very scared. Right now, I just want to keep on going up and up and up into oblivion. If I do go down, how quickly can I feasibly do it? How on earth do I know when I've hit my maintenance dose? Do I need to stay on that dose for life?

I don't know whether I can do this. I'm stuck in a bind now taking a drug that I have to keep on taking that is making me feel horrendous. A couple of weeks ago I would have posted on here raving about how wonderful it was. I suspect it might have changed my life for the better; only, right now, it doesn't feel that way.

Please, please help me.

[Fred_The_Cat]

Have I reached my switch yet? SEs becoming unbearable

I think you're ramping up way too fast, hence the side effects. I don't know what your intake history was, but try this little experiment-

Buy a beer and take a sip. If it feels as if there's a layer of plastic in your mouth blocking the refreshing taste- you've probably hit it. As a benchmark, I hit mine at 150 mg after drinking 4-6 beers a night for 3 years.

As I've said in other threads, the switch is only the beginning- I think these "aha" moments that people talk about are in hindsight. When I hit mine I could tell that there was no desire for alcohol, but the desire to drink for old times sake still hung on for a few months. You've already committed to sobriety for the past month so that's definitely an advantage. I think you're safe to test the waters, you could even have your boyfriend supervise if he's in the loop on this.

For many it doesn't matter whether you're drinking when you switch, but one thing I must absolutely warn you about is not to get drunk on high dose baclofen- you will experience a hangover from hell and could possibly lose your switch.

Think of this less in terms of the medicine and more in terms of behavior. You're probably in such a cloud right now that you can't see out of it. The switch happens suddenly but it takes months to fully realize the implications. There will be setbacks, slip ups and some goddamn painful realizations, but these are part of redefining your new sober life.

[Fred_The_Cat]

Have I reached my switch yet? SEs becoming unbearable

And in terms of finding a maintenance dose, this is tricky if you're not drinking at all. I found my maintenance dose by drinking in moderation. When I crossed a line and got pished, I knew I had to go back up.

[lookingforawayout]

Have I reached my switch yet? SEs becoming unbearable

Thank you so much for your speedy response!

Fred_The_Cat;1538052 wrote: I think you're ramping up way too fast, hence the side effects. I don't know what your intake history was

Really? Might explain things. My intake was extremely high. It's just that I've frequently seen people recommending a 20mg increase every few days (most recently - mywayout.org/community/f20/baclofen-user-guide-78132.html - sorry but I cant post links properly yet). I could have gone up slower. I wish I had now.

I think I am going to try a test with beer or wine tonight. Wine is normally irresistible to me, so perhaps that would be a better bet. I will have my boyfriend on standby just in case things go wrong. I'm terrified of drinking again, but also don't want to spend the rest of my life controlled by fear - I would much rather be in active control of my addiction.

If I do decide to start decreasing, what rate should I decrease at?

Thanks

[lookingforawayout]

Have I reached my switch yet? SEs becoming unbearable

I should probably also add that until very recently, increasing my dosage at that rate was suiting me, which is why this bout of SEs was such an unwelcome surprise!

[thomas m]

Have I reached my switch yet? SEs becoming unbearable

lookingforawayout;1538060 wrote: Really? Might explain things. My intake was extremely high. It's just that I've frequently seen people recommending a 20mg increase every few days (most recently - mywayout.org/community/f20/baclofen-user-guide-78132.html - sorry but I cant post links properly yet). I could have gone up slower. I wish I had now.

This is my second time trying Bac and I myself feel into the same trap as yourself. I thought I was some kind of hero and ramped up to 300 in under a month. I was ramping up in 50s some days. The drinking more or less stopped but looking back now I didn't know whether I was coming or going half the time. Everyone is different. Listen to your body above all else.

This time out out its a 10mg increase every 3-4 days not a mg more. I don't care if it takes me to Christmas. Its not a race and I'd hazard a guess that a fair percentage of people have packed Baclofen in because they rushed it which is so sad.

Best of luck.

[thomas m]

Have I reached my switch yet? SEs becoming unbearable

I forgot to add some off the SEs your experiencing are very similar to those I had. The vivid dreams at the start were kind of fun but it got to the stage where I actually was snapping out of them and was convinced they were real and I was ready to attack who ever was coming into my room to come at me.

I had every SE you could imagine.

Electric shocks
Shortness of breath
Paranoia
Jumping out of my sleep
Generally feeling drugged out
RLS
Headaches
Intrusive thoughts

And most of these were when I was AF.

I could go on for pages. But I went about it all the wrong way. I thought I'd be one of the very few if any who would titrate up tp 250+ over a couple of weeks and magically be cured. Then deal with the dreaded SEs. I was very wrong. I didn't listen to all the advice that I was maybe taking it a bit to fast.

I'd consider very very slowly titrating down. Who knows you might have hit it 100mg back. I know the whole weight thing had been debated before but for someone at under 120lb... 240mg is a pretty high dose.

Stay safe.

[thomas m]

Have I reached my switch yet? SEs becoming unbearable

Sorry for all the posts but with regards to titrating down I think it all depends on how long you've been using Bac. I was on it a month and was able to come off it pretty quick with the help of some Diazepam to calm my anxiety.

I'm sure a few more experienced posters will chime in. But imo I wouldn't keep going up if the SEs are as you say.

[terryk]

Have I reached my switch yet? SEs becoming unbearable

Hello looking,

I don't like to give advice about taking baclofen, and only make rare exceptions when people are in dire situations with side-effects or needing to titrate down.....

lookingforawayout;1538046 wrote: My vision is permanently obscured by flashing white spots, and occasionally I see lightning flashes of red or orange, and the twitching in my hands has got a lot worse.

These are hallmark signs of titrating too fast, and side-effects that I also experienced during my titration. Having been on hdb for over 3.5 years (200mg/day now and indifferent for nearly 3), I would suggest that you level off at 220 or drop to 210 (or even 200) until your side-effects subside before you consider continuing up, or testing your indifference. Dropping too fast might provoke anxiety and possibly depression, so it's important to keep that in mind.

At 5'10" 230-ish I had *great* difficulties increasing by even 10mg every 7-8 days from about 200 to indifference at 280. You can read about it here: https://www.mywayout.org/community/f2...fen-52522.html

Hope this helps,
-tk

[Xadrian]

Have I reached my switch yet? SEs becoming unbearable

lookingforawayout;1538046 wrote: How do I know if I've hit my switch? I stopped drinking over a month ago now, but my last drink (at about 120mg) didn't really have that much appeal - it just made me INCREDIBLY tired. I could barely finish my last beer.

If you drank your last beer 1 month ago, I would guess are you already hit your switch then and are currently way beyond your switch dose (in fact twice as high). Or did you also go 1 month without beer before baclofen?

In that case you should slowly taper off to the dose you were on when you drank your last beer and stay there for a while.

NEVER, NEVER stop baclofen cold turkey and DON'T go down too fast.
Do it in the same pace as you went up.

[ifulovelife2]

Have I reached my switch yet? SEs becoming unbearable

lookingforawayout;1538046 wrote:
- How do I know if I've hit my switch? I stopped drinking over a month ago now, but my last drink (at about 120mg) didn't really have that much appeal - it just made me INCREDIBLY tired. I could barely finish my last beer. I definitely didn't have that baclofen fairy-blessed, transcendent, epiphanic moment that many of you describe, and after that last drink I still thought a lot about drinking, but didn't do it. As a result, I didn't think I'd hit my switch. How do I know if I actually had, or how much higher I need to go to hit it?

Everyone's experiences on baclofen are different: the S.E.s, the 'switch', the required dose, the speed of titration. When I became indifferent, 2 years ago, I certainly didn't have an "epiphanic moment", in fact my 'switch' was very much like your experience when you last drank: beer no longer had much of an appeal and I found I couldn't be bothered to finish it. Well, I suppose that in itself is an epiphany.

I don't like the term 'switched', it suggests a homogeneous experience and as I say we don't all react to this drug in the same way. (I would even disagree with Fred's assertion that a baclofen hangover is worse. For many yes, for some including me, no.) I prefer the term 'indifference'. When I drink, I don't need to continue till I pass out. I can drink nothing for days, then buy a beer and only drink half of it. On a hot summer's day a beer appeals to me. In a restaurant, a glass of Pinot Noir is very welcome. I am not indifferent to alcohol. I enjoy it. I am indifferent to drunkeness. That no longer holds any appeal.

If you're waiting for all thoughts of alcohol to pass before you stop titrating up, then I would suggest you are just going to keep ramping up your dose until you can no longer continue to operate. You're there! You haven't drunk for over a month and the last time you did, it wasn't a great experience.

You're indifferent to drunkeness.

You've done it.

Congratulations!

Or have I missed something here?

When you titrate down, go much more slowly than when you went up: 10mg per week. When drunkeness starts to appeal, you know you've gone too far and you should titrate back up again: at 10mg per week. You'll find your balance, your maintenance dose, that way.

:welcome: BTW

[bleep]

Have I reached my switch yet? SEs becoming unbearable

Hi there,

Your SE's sound similar to what mine were on occasion, and mine were primarily caused by going too fast. Although you have stuck to a solid titration plan, it looks like it was too fast regardless. Nevertheless, as a result, you are at a high number, so well done. I definitely wouldn't keep going up, and in fact would immediately go down a bit. You should get very quick relief from most of your SE's.

You need to bear in mind that the suggestions you will read here are only that, suggestions. Nobody here is medically trained, but we do have considerable experience. I amazed you have gone so far before asking for any help!

There is no need to panic about going down. From today I would only take 200, and stay there for a few days. Whether you remain there, or go up or down, I wouldn't make a call on that just yet. See how you feel after a few days at a lower dose.

[lookingforawayout]

Have I reached my switch yet? SEs becoming unbearable

For the first time in a long while I feel calm again about all of this. Thank you so much to you all of you for your intelligent, useful responses. I posted out of sheer desperation this morning. I have been a long-time lurker on here and probably should have got in touch much sooner, but I stubbornly convinced myself that I had a handle on all of this.

I have decided not to increase my dosage any further. Tonight I am going to try a sip or two of wine with my boyfriend watching over me and see how I go (the fact that I'm only wanting 'a sip or two' speaks volumes come to think of it).

The truth of the matter is that I simply CANNOT go back to how I was before. I stopped drinking just over a month ago whilst titrating up and this is the longest I have been AF in as long as I can remember (Xadrian, to answer your question, no I did not stop drinking prior to taking baclofen...I don't think I could have and I had tried, and failed, countless times). If I had carried on, I would have lost everything or killed myself, so it was a psychological turning point (but not, I maintain, a baclofen switch - I was still craving alcohol for quite a while after that).

I think my problem has been that I've been waiting for a really obvious switch.

This in particular really made sense to me:

ifulovelife2;1538140 wrote: Everyone's experiences on baclofen are different: the S.E.s, the 'switch', the required dose, the speed of titration...I don't like the term 'switched', it suggests a homogeneous experience and as I say we don't all react to this drug in the same way. (I would even disagree with Fred's assertion that a baclofen hangover is worse. For many yes, for some including me, no.) I prefer the term 'indifference'...If you're waiting for all thoughts of alcohol to pass before you stop titrating up, then I would suggest you are just going to keep ramping up your dose until you can no longer continue to operate. You're there! You haven't drunk for over a month and the last time you did, it wasn't a great experience.

Thank you ifulovelife2. I don't think the notion of a switch was particularly helpful for me, but I am 'indifferent' to alcohol now (and I've only just realised it!!!) This is the most positive I've felt in ages. this is going to sound bonkers, but I think it happened without me even realising it. When I finally noticed that I could be around alcohol without craving it (I sat and watched as my boyfriend drank wine a few weeks ago and realised that I wouldn't want some even if he offered), I remember feeling irrationally angry (towards myself, not toward him or the wine).

I've been thinking about this a lot today, and I think I was angry because it all seemed to easy. I'm welling up as I type this now, but I think I've continued to titrate up for two reasons - firstly, to make sure that I NEVER go back to the horrendous waste of space that I was, and secondly (and this is worrying), to punish myself. Looking back, I think I felt as though I hadn't suffered enough - that it was all too easy. If it was so easy, then why, oh why, had I not gone on baclofen before? Or could I have even managed to kick the habit without it? Why had I insisted upon making my life and the lives of those around me so hellish for so long? Wasn't this supposed to hurt?

End result: I carried on titrating up until I felt as though I was almost losing my mind (which is the perilous point that I'm at now).

I'm so pleased I decided to post on here today. Thank you.

terryk, thanks also for posting a link to your story. I had no idea it would become this much harder at a high dosage; it's such a relief to have contact with people who have been through such a similar experience.

[lookingforawayout]

Have I reached my switch yet? SEs becoming unbearable

With regards to titrating down, I am going to do this first:

bleep;1538145 wrote: Hi there,
There is no need to panic about going down. From today I would only take 200, and stay there for a few days. Whether you remain there, or go up or down, I wouldn't make a call on that just yet. See how you feel after a few days at a lower dose.

At the moment, I'm finding it very hard to think straight and don't want to make a rash decision.

If the wine test goes well today, and if the SEs calm down at a slightly lower dose, then I suspect I will probably start titrating down. I'm going to do this really slowly - the last thing I need is another bout of depression, as it hits me extremely hard. I'm currently on antidepressants, though, so hopefully they'll help to keep me in check.

Thanks to all of you, I have a plan

Wonderful!

[Fred_The_Cat]

Have I reached my switch yet? SEs becoming unbearable

How did the wine test go?