Some here may remember that baclofen was found to help autistic children and a company in the States, Seaside, developed arbaclofen which is the right side of the baclofen molecule. The right side has the beneficial effects while the left side causes side effects. Roche is now involved in this and there is a double blind trial underway to get this on the market for autism and fragile x sydrome.
In my mind, the general dysphoria that is called a spectrum disorder or autism is something which can lead to alcoholism or addiction and some very famous auties have severe alcoholism
I found a post from someone in the trial at the Wrong Planet website which makes very iteresting readi: Arbaclofen and my experience - General Autism Discussion
I think with Roche involved and the trial to end over the next year or so, when this hits the press as something which can be used to help children, baclofen will really hit the press big time. Here is the post in full:
Posted: Fri Feb 10, 2012 4:37 pm Post subject: Arbaclofen and my experience
Hello everyone. My name is Lord Azernak0, but you can just call me Azernak0 if you mention it only in the highest possible regard. I am medically diagnosed with High Function Autistic Spectrum Disorder. I was diagnosed when I was 18 after 15 years of my mother's private speculation and was about as much shock as learning that "water is wet." I was offered to try various pills and treatments for social anxiety and general anxiety as a whole. It has crippled me but I never wanted to take a pill that would leave me dopey. I have seen the quick wit and mind from my father be retarded and dulled by pharmaceuticals. While I never agreed with him for not being on medication, I certainly didn't want to become what he was; the person that just stares at the house on fire and just says "whatever."
That changed on February 13, 2011 when I had the worst anxiety attack in my entire life. I was hyperventilating so much and my heart rate was so high that I literally lost consciousness several times. That was one of the worst days of my life; the culmination of every inadequacy I suffer coming together in one fell swoop that left be beaten, broken for several weeks and probably changed who I am today. Let's just say that for two straight weeks, for the only time in my life, I contemplated death as favorable to having to deal with that anxiety ever again. Now for a quick PSA: if you have even thought about death in the same way that I did, speak to someone immediately. It doesn't have to be a family member, a priest, a friend, or even a qualified profession (but it should be). Just do me a favor as one human being to another; give it two weeks. Please.
Now that is out of the way, I will get back with what I was saying. After that, I decided to do some research and found that there was a new drug being tested in my area and that it was apparently having success. It didn't have anything that would leave me doped up, so I decided to call up and get enrolled in a trial for an experimental drug to "treat Autistic Spectrum Disorders." The drug's name was Arbaclofen.
The first week was nothing noticeable. The next week I felt tired and kind of zonked out in front of the television, sort of staring into space. This scared me so much. The reason I had lived with my anxiety was because I didn't want to be a zombie. "It is better to feel pain and agony than nothing at all." Thankfully, as I began to titrate the dosage up slowly with doctor's orders, the feeling of a zombie disappeared. Fast forward a couple of weeks and I am walking through Walmart grabbing a few items. It was about the time that I was standing in the checkout aisle, a little tired because of the day, that I realized what exactly I was doing. I was sitting in the busiest store, surrounded by people, noises, and smells and I wasn't having heart palpitations or feelings of complete dread. Even once I recognized this oddity, I didn't feel like a steamroller was driving over my body. I wasn't real happy about being in the store, I still knew I hated doing it, but I didn't feel terrible. It was overwhelming to the point that I had to contain my laughter because the other patrons were starting to stare at me.
That was a couple of months ago. After the initial study ended, I went on to the open label, meaning I was flat out told that THIS was 100% going to be the real stuff. That meant a week of no pills, and two weeks at the lowest possible dose. I was on 1/9 the daily dosage of what I was. It was difficult. The anxiety returned, along with it's friend "feeling like an axe was going to fall upon you." Saying it was difficult is simply too partial. It was one of the hardest things I have ever done. My mind started to slow down like when I had first taken the pills (a side effect of when the dosage is ever changed drastically) again and I just felt terrible. It was worse than before because of my subjective being and not because of any mathematical reasoning. "I knew what it was like to taste sweet, and now I am back to tasting bitter. Having taken a bitter pill without ever tasting sweet is favorable to knowing sweet for but a fleeting moment." Thankfully, my dosage is slowly creeping up again to what it was. I take comfort in the fact that the open label of the pills will be available to me until the pills get complete FDA approval and can be prescribed.
I have read a lot of bile and disgust over pills on this forum, and I agree with a lot of it. "Azernak0 'drunk' and Azernak0 'happy' are not the same person." "Baclofen and Arbaclofen are drugs that have been used on alcoholics; it needs more testing before it is done on children." Let me dispel some of those concerns:
1. Arbaclofen didn't turn me into a zombie once my body adjusted to it.
2. It didn't stop the "One in a blue moon massive panic attack" that just happens but it did stop the baseline level. When I thought of something that used to give me anxiety, I was able to acknowledge that I still didn't feel completely comfortable with it but it didn't make me feel ill anymore.
3. The last thing needs to be recognized again. I was in a complete enough of a mental state to notice that something that once gave me physical sickness type anxiety didn't bother me too much anymore. It was not a "whatever, house is on fire" thing. It was a "it still sucks, but I don't want to barf anymore."
4. My social phobia and extreme fear has subsided.
5. The pills are being tested across the country with nothing out of the ordinary happening like "head suddenly imploded."
6. According to my best friend, I am a better friend now than I was before.
The sixth reason is enough for me.
In my mind, the general dysphoria that is called a spectrum disorder or autism is something which can lead to alcoholism or addiction and some very famous auties have severe alcoholism
I found a post from someone in the trial at the Wrong Planet website which makes very iteresting readi: Arbaclofen and my experience - General Autism Discussion
I think with Roche involved and the trial to end over the next year or so, when this hits the press as something which can be used to help children, baclofen will really hit the press big time. Here is the post in full:
Posted: Fri Feb 10, 2012 4:37 pm Post subject: Arbaclofen and my experience
Hello everyone. My name is Lord Azernak0, but you can just call me Azernak0 if you mention it only in the highest possible regard. I am medically diagnosed with High Function Autistic Spectrum Disorder. I was diagnosed when I was 18 after 15 years of my mother's private speculation and was about as much shock as learning that "water is wet." I was offered to try various pills and treatments for social anxiety and general anxiety as a whole. It has crippled me but I never wanted to take a pill that would leave me dopey. I have seen the quick wit and mind from my father be retarded and dulled by pharmaceuticals. While I never agreed with him for not being on medication, I certainly didn't want to become what he was; the person that just stares at the house on fire and just says "whatever."
That changed on February 13, 2011 when I had the worst anxiety attack in my entire life. I was hyperventilating so much and my heart rate was so high that I literally lost consciousness several times. That was one of the worst days of my life; the culmination of every inadequacy I suffer coming together in one fell swoop that left be beaten, broken for several weeks and probably changed who I am today. Let's just say that for two straight weeks, for the only time in my life, I contemplated death as favorable to having to deal with that anxiety ever again. Now for a quick PSA: if you have even thought about death in the same way that I did, speak to someone immediately. It doesn't have to be a family member, a priest, a friend, or even a qualified profession (but it should be). Just do me a favor as one human being to another; give it two weeks. Please.
Now that is out of the way, I will get back with what I was saying. After that, I decided to do some research and found that there was a new drug being tested in my area and that it was apparently having success. It didn't have anything that would leave me doped up, so I decided to call up and get enrolled in a trial for an experimental drug to "treat Autistic Spectrum Disorders." The drug's name was Arbaclofen.
The first week was nothing noticeable. The next week I felt tired and kind of zonked out in front of the television, sort of staring into space. This scared me so much. The reason I had lived with my anxiety was because I didn't want to be a zombie. "It is better to feel pain and agony than nothing at all." Thankfully, as I began to titrate the dosage up slowly with doctor's orders, the feeling of a zombie disappeared. Fast forward a couple of weeks and I am walking through Walmart grabbing a few items. It was about the time that I was standing in the checkout aisle, a little tired because of the day, that I realized what exactly I was doing. I was sitting in the busiest store, surrounded by people, noises, and smells and I wasn't having heart palpitations or feelings of complete dread. Even once I recognized this oddity, I didn't feel like a steamroller was driving over my body. I wasn't real happy about being in the store, I still knew I hated doing it, but I didn't feel terrible. It was overwhelming to the point that I had to contain my laughter because the other patrons were starting to stare at me.
That was a couple of months ago. After the initial study ended, I went on to the open label, meaning I was flat out told that THIS was 100% going to be the real stuff. That meant a week of no pills, and two weeks at the lowest possible dose. I was on 1/9 the daily dosage of what I was. It was difficult. The anxiety returned, along with it's friend "feeling like an axe was going to fall upon you." Saying it was difficult is simply too partial. It was one of the hardest things I have ever done. My mind started to slow down like when I had first taken the pills (a side effect of when the dosage is ever changed drastically) again and I just felt terrible. It was worse than before because of my subjective being and not because of any mathematical reasoning. "I knew what it was like to taste sweet, and now I am back to tasting bitter. Having taken a bitter pill without ever tasting sweet is favorable to knowing sweet for but a fleeting moment." Thankfully, my dosage is slowly creeping up again to what it was. I take comfort in the fact that the open label of the pills will be available to me until the pills get complete FDA approval and can be prescribed.
I have read a lot of bile and disgust over pills on this forum, and I agree with a lot of it. "Azernak0 'drunk' and Azernak0 'happy' are not the same person." "Baclofen and Arbaclofen are drugs that have been used on alcoholics; it needs more testing before it is done on children." Let me dispel some of those concerns:
1. Arbaclofen didn't turn me into a zombie once my body adjusted to it.
2. It didn't stop the "One in a blue moon massive panic attack" that just happens but it did stop the baseline level. When I thought of something that used to give me anxiety, I was able to acknowledge that I still didn't feel completely comfortable with it but it didn't make me feel ill anymore.
3. The last thing needs to be recognized again. I was in a complete enough of a mental state to notice that something that once gave me physical sickness type anxiety didn't bother me too much anymore. It was not a "whatever, house is on fire" thing. It was a "it still sucks, but I don't want to barf anymore."
4. My social phobia and extreme fear has subsided.
5. The pills are being tested across the country with nothing out of the ordinary happening like "head suddenly imploded."
6. According to my best friend, I am a better friend now than I was before.
The sixth reason is enough for me.
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