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TeetotalRecall

Hi, I'm TeetotalRecall - Baclofen Tolerance/Switch Issue

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TeetotalRecall

Current high dose baclofen patient (140mg a day), who experienced great success (alcohol free, very little anxiety) for the first 7+ months, and then foolishly experimented with another GABAb agonist (phenibut) after losing a portion of my baclofen prescription. Though I was able to stop the other GABAb agonist by substituting it with baclofen, the dose I'd been at was no longer as effective. I titrated my baclofen use down to zero (with the aid of gabapentin to combat some of the anxiety I was experiencing), but only performed a baclofen drug holiday of 24 hours before resuming. In doing so, I increased my dose very rapidly, as I was not experiencing somnolence at doses of 80mg a day, and increased to 140 the next day. I am now suffering as baclofen is no longer as effective (battling extremely increased anxiety, vivid dreams and "electric shocks" in hands, but still alcohol free - in essence, it seems that I lost my "switch." My plan is to titrate my baclofen dose back down to zero to take more of an extended break, with the hope that resuming treatment will be effective after a hiatus. There are also a few supplements that I'm interested in exploring during my future break from baclofen, and I will share my results. Looking for support and information regarding others who have experienced tolerance issues with baclofen, and have perhaps found ways to overcome them. Currently experimenting, myself, and will be happy to share my findings/experience with the community. Much gratitude and warm wishes to all =)

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Felina

Hi @TeetotalRecall and welcome!

I'm a little confused by the timing - did you just go from 80 to 140 in the last couple of days? I'd suggest going back down to 80 (not zero) and then continue titrating up at a slow pace--perhaps 10 mgs every four days. When people go off baclofen and go back on, they don't always have the same switch dose the second time. I've been following the baclofen journeys on this and other boards over the last seven years, and can honestly see no value in going off baclofen and starting over. 

Jumping from 80 mgs to 140 mgs in one day is a HUGE leap! No wonder you're suffering those awful side effects. Please look at the baclofen guidelines on this site, especially this one: You will need register or log in to read this content - you want to go slow and steady. 

I hope you feel better soon. I've accidentally OD'd a couple of times and it's terrible. It should resolve within a day or so if you go back to your previous dosage.

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TeetotalRecall

Thank you, @Felina, for the warm welcome! =)

I regret to say that I did indeed jump from 80 to 140 in the last couple days. My primary (but seemingly flawed) reasoning for doing so, at the time, was that I had previously (while taking and accustomed to 140mg) been able to make such jumps with little to no discomfort, and when I had originally started to take the medication, a feeling of somnolence was always an indication that I was reaching my upper limit. As this, as well as relief from anxiety, was not present at 80, I felt at the time that perhaps I merely needed to resume my previous dose. This was obviously a poor idea as I am left with the symptoms described above. I appreciate your advice very much, and if I understand correctly, you are suggesting that if I go back to a previous dose of 80 (which was not providing me with relief) and slowly titrate back to 140, it will prove to be effective again?

I believe you are absolutely correct in that my side effects are due to me increasing the dose too fast - this was foolish on my part, and I should have known better. However, I would have thought that if my previous dose was still effective, I would have also experienced some level of the relief it previously gave me (or at least some shade of somnolence), regardless of how fast I increased the dose (albeit with side effects, as I now understand). Perhaps this is totally incorrect, as it would be wonderful if simply enduring uncomfortable days at 80 and then 90 and so on would eventually result in me achieving relief at 140 or a little higher. What concerns me is that I have read of others who indicated that they have a higher "switch" even after titrating at a safer rate (but if you can point me to reports that suggest otherwise, that would be awesome!), and as such, I'm inclined to suspect that that phenomenon has to do with downregulation of the GABAb receptor. Very few drugs selectively agonize the GABAb receptor, and so for almost all of us, our first ride with baclofen was tapping into a receptor that had not been stimulated as consistently or nearly as strongly for all of our lives. I'd hate to think that this results in us never being able to return to that state after coming off of baclofen for a stretch, in a similar way to how users of certain recreational drugs refer to "chasing that first high," all subsequent dances not being as enjoyable (or in our case, effective) as that initial stimulation. Some hope, however, that that is not necessarily the case comes from my reading that Ameisen had reportedly titrated his dose down to zero over the course of 10 days before resuming at some point, with no report of having to increase his dose in his return to use. I have not come across any information regarding how long of a break Ameisen took in between his periods of use, but it would be great to know.

I'm still unsure as to what my long term strategy will be, but I will try to maintain a lower dose (hopefully around 80mg) and see how I feel tomorrow before I decide to head one way or the other. Again, I thank you for your kind welcome, insight, and support, and I look forward to continuing this journey with the community. All the best!

P.S. I seemingly use a lot of parentheses, but I mean well! (=P)

Edited by TeetotalRecall
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Felina

Hi @Teetotalrecall,

I can't say that I have any studies to back up whether to titrate to zero vs. going to a lower dose and titrating up. However, I have been on this board since its inception and the My Way Out board for seven years. I have "watched" many, many people experiment with baclofen with wildly varying results. The people who have consistently been the most successful, in my observation, have generally been the ones who titrated up at a steady level and have stayed at or near their switch dose for long periods post-switch. 

I hope you are feeling much better today. I wasn't trying to say you would find relief at 140 mgs/day, but rather that if you didn't have side effects at 80 mgs/day then that might be a more sane starting point as you go back up. Many people on here have gone off and found different switch doses the second or third time around. There is seemingly no rhyme or reason to this! 

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Baclofenman
On 11/2/2017 at 7:08 AM, TeetotalRecall said:

from my reading that Ameisen had reportedly titrated his dose down to zero over the course of 10 days before resuming at some point, with no report of having to increase his dose in his return to use. 

 

Certainly in my experience the majority do not reach indifference at the same level, most higher, some never :(

On 11/2/2017 at 7:08 AM, TeetotalRecall said:

I'd hate to think that this results in us never being able to return to that state after coming off of baclofen for a stretch,

Anecdotally it would appear that it can be more challenging the second time around - HOWEVER, You will need register or log in to read this content from a real person contradicts this opinion

On 11/3/2017 at 1:26 AM, Felina said:

The people who have consistently been the most successful, in my observation, have generally been the ones who titrated up at a steady level and have stayed at or near their switch dose for long periods post-switch. 

This is certainly my understanding and own experience

Regards

 

 

Bacman

 

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Molly78
On 11/2/2017 at 7:08 AM, TeetotalRecall said:

I'm inclined to suspect that that phenomenon has to do with downregulation of the GABAb receptor. Very few drugs selectively agonize the GABAb receptor, and so for almost all of us, our first ride with baclofen was tapping into a receptor that had not been stimulated as consistently or nearly as strongly for all of our lives. I'd hate to think that this results in us never being able to return to that state after coming off of baclofen for a stretch, in a similar way to how users of certain recreational drugs refer to "chasing that first high," all subsequent dances not being as enjoyable (or in our case, effective) as that initial stimulation. Some hope, however, that that is not necessarily the case comes from my reading that Ameisen had reportedly titrated his dose down to zero over the course of 10 days before resuming at some point, with no report of having to increase his dose in his return to use. I have not come across any information regarding how long of a break Ameisen took in between his periods of use, but it would be great to know.

Welcome @TeetotalRecall.  I'm really interested in your theory as set out above.  It would account for the difficulty a number of people on this site have had with finding their switch for a second time.  I used bac in a slightly different way - I stopped drinking first, then titrated up on bac, finding that I could cope with being alcohol free for long periods for the first time in my life.  Subsequently I have been able to drink within recommended guidelines, though there's no doubt the "high" is missing from that first drink of the day, & any subsequent drinks are likely to produce profound somnolence rather than extended enjoyment!

If it's any consolation, I titrated down earlier this year, found that my alcohol intake was rising again, & did exactly what you did - bumped up my dose far too quickly, leading to daytime sleepiness & what I & others describe as tinnitus (though it's technically not, it's a sort of rushing noise in the ears which I have never heard described as a SE of other meds).  Like you, I have had relatively few SE from bac compared to others here.

I hope you find success second time round.  I agree with Felina that there's no need to go right back to zero.

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TeetotalRecall

Thank you @Felina, @Baclofenman, and @Molly78 for your insight and advice. As it turns out, my side effects were seemingly not due to baclofen at all, but rather side effects stemming from the combination of my misuse of gabapentin (I had been taking it regularly for about a month, but did not take any on the day that I increased my dose of baclofen, and possibly did not take as much as my body had grown accustomed to the day after) and surge of resulting anxiety. My struggles as of late have spurred me to do an incredible amount of research into baclofen, as well as medications/substances with that share some of its mechanisms of action: phenibut (I know that @Jetsman32 has experience with this) and Neurontin (gabapentin). Lyrica (pregabalin) is extremely similar to gabapentin, but many magnitudes stronger. I have experience in taking all of these, with the exception of Lyrica. I will be posting the results of my research, as well as their implications, in the general discussion thread when I have time, and will provide a link when I do so.

An area of interest that I would like help with, however, are reports of those who have successfully stopped baclofen treatment - Ideally, I'd like to know how long they were taking baclofen for prior to stopping (and at what dose), how long they stopped for, and what their experience was like after stopping/what baclofen was like after they then resumed. If any of you can point me toward accounts of this, that would be oh so greatly super appreciated!

@Molly78 - I read your report of when you titrated down, and I have the same questions:

-How long were you on baclofen, and at what dose, before you titrated down?
-How long did you remain off of baclofen before resuming again?
-What was your experience of life during the time that you stopped before starting again? Did you experience any issues such as increased anxiety (perhaps stronger than it was before you started baclofen?), or mood changes? I realize from reading your report that there were other life factors going on that certainly would have influenced this/made it difficult to tell, but I'm eager to hear your take.

Thank you guys, again, for your help and guidance. I look forward to both hearing more and sharing my own insights with the community. :)

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Molly78

I was on bac for 4 years before I titrated down, dose varying a bit over that time from 80 mg a day initially to 160 mg at the point of titrating down.  I tended to put it up when I felt my alcohol intake was creeping up, which it did over time.

I did not come off bac completely - I got back down to 80 mg, then my alcohol intake started to rise quite fast.  It was a time of some family troubles which didn't help.  Also I had titrated down just before an all inclusive holiday with 2 of my grandsons.  That included "all you can drink" alcohol wise throughout the day.  I wanted to be able to fully enjoy the holiday, but in retrospect it was a bad decision, as it set me up into a moderately heavy drinking routine ie about 6 units a day.  Don't get me wrong - before bac I was drinking up to 2 bottles of wine a day which is about 18 units.

I didn't experience any particular anxiety when I was down at 80 mg,  but that might have been because I was self medicating with my increased alcohol intake.

I'm interested to hear that your SE of bac may have been due to coming off gabapentin.  I have been using gaba for sleep over the past year, recently up to 1200 mg each night.  After reading on here about the problems coming off it I decided to come off it myself, reducing down very gradually.  I have definitely had increased levels of anxiety since I started this process, in fact to cover it I increased my bac up to 200 mg.  I now have a combination of mild anxiety plus evening drowsiness (falling asleep in front of the TV which I haven't done since my drinking days!) plus the rushing in the ears & slight unsteadiness from the bac. Having to use sedative antihistamines at night to combat the sleeplessness as well - not a happy situation!  I'm glad I was made aware in time that it was such a difficult med to come off, especially as it apparently gets more difficult the longer you are on it.

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TeetotalRecall

@Molly78, thank you SO much for your response! I have been trying to reduce my gabapentin intake but have been met with worrying side effects beyond anxiety (no doubt due to me not tapering it effectively), which I just posted about in the General Disccusion section:


Did you find that increasing your baclofen dose did something to offset the increased anxiety you were experiencing?

Edited by TeetotalRecall

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Molly78

To some degree - have posted more about my experience under under your post in general discussions.

My other mistake has been to use modafinil to offset the lack of sleep/daytime sedation from increased bac.  It became apparent from @empyr3al's links that this is a big no-no when withdrawing from GBP.  Another example of a bad decision around self medication!

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