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Chloe33
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05 Feb 2013, 12:22 pm

I am on Klonopin for anxiety/panic attacks. I would not want to go on any strong meds again



Azernak0
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09 Feb 2013, 9:30 pm

MomofHFASD wrote:
Do you think that Arbaclofen has helped you with abstract thougth? Reading emotions and social cues? Thank you so much


No. I still have problems generalizing and the reciprocity of conversation is still strange to me. I am, however, less likely to "stay on script." IE, 95% of the time when I say something, I am saying what I had thought about 2 seconds before. I can't just 'wing' it. Before it was much more common to do so, to not be able to say anything without knowing what I was going to say. Now, I still do it, but if I need a quick reply to something like: "What is your favorite movie?" I don't need to write the script that says "This is my favorite movie": I can just say it.

The only negative I can say is that because it is a pediatric study, the pill is a dissolvable. I think it is supposed to be cherry flavored but it tastes like a fruity Tums mixed with dirt and flatulence.



MelissaShelley
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18 Jun 2013, 7:51 pm

Hi Azernak0

I found this thread searching arbaclofen and found it to be very insightful. Thank you so much for describing your experience. I have a 10 yr old son with Fragile X that also participated in the STX-209 clinical trial and was enrolled in the open label extension study since January. He can't really tell me how he feels but he appeared to benefit from the medication.

We were disappointed that the extension study was discontinued and I can't help but wonder how you are feeling and managing titrating off the medication. If it's not to personal I would be interested to know if you plan to replace it with a different medication. Has your clinic been helpful with the transition for you? Thank you again for the information and hope you are well.

Melissa
fx mom



C1MPAQ
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07 Dec 2015, 11:48 am

So I tried baclofen for maybe half a year, and I want to share my negative experiences.

Like described in this thread, it really takes away anxiety and it really makes you feel "normal", just like that, without feeling high, numbed or anything. Its not like benzos or alcohol, but it is a whole lot like GHB - just less obvious. Like mentioned in this thread, it is mostly considered harmless and used to manage spasticity all the time. Most people withdraw from it without issues, although some withdrawal reports from any dosage regime are out there that describe rather intense psychotic symptoms.

Consider the situation you put yourself in, when your psyche has adapted over decades to an abnormally alert mental state. You live and think within emotional extremes. You avoid feelings and thoughts that would hurt you. You have certain feelings and reactions, to push yourself out of it. You care or don't care emotionally about entirely different things. You do things a certain way, in certain patterns so that you can live with them. And so it isn't an ideal situation, but its a situation that works for you. Over decades, you learned how to be different, avoidant and how that makes you cope at a certain price to your quality of life.

Now take this drug, its like unlocking an emotional cage. It takes a bit of time to notice psychologically, but that's how it will happen. You can go to a supermarket or cafe, and you will feel what other people feel. Your mind is not in survival mode. You see nice flowers, you talk to people and have nice conversation. You take this job opportunity, because you can cope with it. You will not be afraid to go outside, because there no longer is much reason to be afraid. You don't need to prepare yourself to be on guard, and so you won't be. Most importantly, you will learn how to actually relate emotionally. Eventually you forget what it has been like, to live without the drug. What you need to do and think, maybe days and weeks in advance, to manage anxiety without drugs. It changes your personality. You want to talk to people, you realize and care about their feelings, etc. After a while, your heart opens up, so to speak.

But this is only so, if you keep taking this drug. You can't even put the two mental states side by side when they occur at different times, you don't really realize why and how differences occur. So consider this simple example: when I am on the drug, I just don't care when the cat is jumping around in my field of vision and makes noise. Maybe my first impulse is, that it is nice that the cat has fun. So I am inclined to be fine with it and feel better because my cat is doing good. No problem it seems. And so it would make sense to go by that first impulse. But when I am off the drug, the cats noises are really disturbing and distracting, it is not healthy to be exposed to them. My first impulse then after a while becomes, that I hate the cat, because having it around is hurtful. But this doesn't make sense to me emotionally, I can't just hate everything around me and expect that to work. My mind needs to blank out the impulse and work with additional logic. I used to wear earmuffs around the clock at home. I used to only let the cat in my room at specific times to pet it and love it, because otherwise I couldn't manage. And so I would be able to love the cat albeit having it around was most of the time problematic to me emotionally.



Last edited by C1MPAQ on 07 Dec 2015, 12:03 pm, edited 1 time in total.

C1MPAQ
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07 Dec 2015, 11:49 am

But this is just a rather meaningless simplistic example. With the same scheme, the changes in your behavior and thought continue to scale up: from the very simple first impressions to more complicated opinions, everyday decisions, considerations and ultimately life perspectives, wishes and views and feelings about society as a whole. This drug has the power to change your whole world, it is just a matter of how much you think about things. And you really want to explore and think about all those things, because suddenly it all seems to make sense ... while still living with the drug. When you talk to people, each sentence they say and each conclusion they draw could make you react in the same scheme. Either you go by impulse (like supposedly normal people do all the time), then you are inclined to accept what they are saying, which then changes your further thoughts and emotions. Or you blank it out, reject what they are saying, and analyze it in light of your own perspective which protects you from your emotional difficulties. The latter is what I am doing all the time. Why I don't look people in the eyes. And I was quite successful at coping with that.

As previously described, its no longer so that you think A then B then C, whereas C leads to anxiety. Suddenly C could be the whole alphabet. But maybe you know, C, although apparently uncomfortable, just made sense to your psyche all along. Maybe turning C into D or E or F just messes it up over time.

It is just that the longer you are on this drug, and even the more you take of it, the more you will just feel and understand things other people do. But is that really healthy?

So far, I know that there are studies out there which show mixed results or success with children. And in the light of everything I wrote, that makes sense. Autistic children live in environments that are just hostile to them. They are forced through situations they just cannot ever cope with, every day. They are forced out of isolating themselves all the time, on purpose. So that's much different from an high functioning autistic adult, who already lives in some social niche, is successful at isolating themselves, has adapted to that, and is just looking for a way to get out of it. If you give a child in such a misfit situation baclofen, they will likely cope better. And it probably won't even matter much if they lose their personal coping strategies. Because considering their situation, those aren't really working well anyway. Maybe it makes them learn a little bit how it is to be normal and how to relate to people around them. Maybe it doesn't, because it just shaves off the tip of the iceberg. Maybe in part it makes them try less to adapt to something psychologically, they should adapt to their whole future life.

Bottom line to me is, that this drug is very very powerful to change something if you have autism. Maybe it isn't if you have MS. The important thing to keep in mind is, that the more powerful drugs are, the more dangerous they become. One person gets addicted to benzos, because they suffer from anxiety. The other gets addicted to opioids, because they suffer from pain. What drug it is really doesn't matter, as long as the drug is fixing their problem while they are on it, without ever solving it.

So having enough drug experiences, I ask myself how baclofen (in the specific case of adult HFA) is much different from morphine. Because I know morphine will almost in the same way make all your problems go away. Not only specific to autism, but in general. I have had mild opium withdrawal. Personally, I think it isn't so hard. Because all that morphine will do in higher dosage, is to make you happy for no reason. Baclofen however, makes you happy because you can actually be normal in life. Or so it seems at least in the beginning. So figure, one day you get off this drug, and you don't just feel sick and miserable for no reason, you feel sick and miserable because you are trying to do a good job, you feel miserable because you are talking to people and being nice. And you have abadoned your save haven at home, your private world, that would make it better. It is now the world of other people. Because you connected it to their feelings and ideas.

When I got off from baclofen, and I tapered it down from 50mg a day or something to 12.5mg, one day on 3 days off or something. I just lost touch with reality. Everything would make me afraid. My own thoughts would make me afraid. I couldn't endure my emotions because I didn't know how. I was entirely lost. Too much changed in my head. And in that half-year I took it, I even made pauses in between. Its just that it all leashed back at me, as soon as I couldn't just take 25mg or 50mg in the evening and then understand what has been going on the last 1-2 days and what will happen tomorrow. So my mother took me to psychiatry, and I am still recovering month later. Maybe I am a person who is always grinding on the edge of becoming nuts. But this drug certainly made me trip over.

I also occasionally took 100mg or 150mg on the weekend, which makes you high. But I don't believe that this was as much contributing to the problem.