First of all, let me say hello to everyone here! I've been reading the boards for a few months now, but this is my first post.
That said, I've been taking Baclofen since sometime, late last year (November, December, don't really remember, exactly), starting at 20 mg/day (that was what my doctor prescribed initially). Then, based on information I had read, regarding "clinical trials", asked my doctor to increase it to 30 mg/day. Finally, after reading many of the posts on here, I realized that 30 mg/day was nowhere near enough to actually be effective.
I then went online, in search of Baclofen, through online pharmacies, since I knew getting my doctor, or anyone else in the area (I'm in Las Vegas), would be an uphill battle. I found the cheapest source out there, by far, and began ordering online.
I began titrating up, fluctuating up and back down, due to ill effects, and after a few months, had reached about the 150 mg/day mark. This is where things started getting really bad.
I have been pretty much stuck around the 150 mark for weeks now. Everytime I try to go higher, the side effects become too unbearable to progress, and I have to back off. Let me list the side effects I've experienced, so far...
Nausea / Loss of appetite
Severe headaches
Daytime somnolence / Nighttime insomnia
Sleep paralysis / Hallucinations
Stage 2 High Blood Pressure (I always had perfect BP, before)
Complete inability to focus/think, I constantly feel like my brain is being poisoned
Bizarre brain zaps/pops, some of which are actually somewhat painful, but most often are pretty jarring
I'm sure there are others I'm forgetting, but you get the point. I can safely say, without a doubt, that I have never experienced such severe side effects from any medication I've taken in the past (and I've been on many). I generally tolerate all medications very well. I can't think of any that I've had any immediate ill effects from. In fact, a lot of medications (especially, for anxiety) I seem to be refractory to. This is the only medicatioon I've ever taken, that I seriously start to dread, when it's almost time to take my next dose, because I'm still feeling so awful from the previous doses, that I literally don't want to take it.
To elaborate on some of them, the daytime somnolence and brain zaps I've experienced are quite unlike anything I've ever experienced before. It has definitely made me drowsy during the day. I've had to drink two or three cups of coffee during the day, in order to stay awake at work. I never used to drink any coffee, because even in small amounts, it made me incredibly jittery, and exacerbated my anxiety, tenfold. I will say, that at least, Baclofen seems to have eliminated my anxiety. Even after drinking coffee, it still doesn't seem to make me anxious or jittery, anymore.
However, the somnolence seems to be accompanied with what I can only compare to the brain zaps one experiences when abruptly stopping anti-depressant medications. I have experienced that first hand, as well, and, while they are somewhat similar, they are quite distinct. Basically, what happens is that I will suddenly experience a momentary "brain shut-down", where I feel like I almost lose consciousness for a split second and then snap back into reality. Only problem is, when I snap back into consciousness, there is a jarring, unsettling, snap/pop sensation in my brain, that reverberates through my head, and leaves me stunned, for a few seconds. It is truly awful. It also seems to be triggered by sudden louse noises or enexpected physical stimuli. I was holding my phone at work, the other day, and it suddenly vibrated, sending a weird brain shiver through my head.
As far as the insomnia, aside from feeling exhausted during the day, I have felt a severe sense of being wired, most other times. It is now 12:15 AM and I feel like I've drank ten pots of coffee, even though I had none today (It is Sunday). I have been having complete inability to go to sleep before about 3 AM, even though I have to be at work by 8 or 9 AM. I have been sleeping around three to five hours a night, during the week. I have a prescription for Seroquel, which allows me to get to sleep on the weekends, but I can't take it during the week, because it makes it virtually impossible to wake up in the morning, during the week.
I've literally been at the point of giving up, every single night, but somehow, I manage to pull myself back together, and keep telling myself that it will be worth it if I just keep with it for another few weeks. I'm just wondering if anyone else out there has experience the same things. I know the somnolence is a common one, but the brain zaps, headaches and constant mind funk is killing me. I've just started a new job, and my constant inability to think or function is going to render me jobless.
BTW, I have just started working with Dr. Levin (in Chicago), thanks to all the information on these boards! I don't want to say anything negative about him, as he seems to be an incredibly knowledgable and compasssionate doctor. He didn't even want to charge me for the initial consultation and prescription fill. I told him he was crazy and please bill me! I know, what person in his right mind would say that? ;-) Anyway, my only thought was... He said he had treated over a hundred people with Baclofen, and he didn't have a single case where it didn't work. So, my thought is, out of a hundred or so patients, am I the only one who is experiencing these awful side effects? Like I said, I am ready to throw in the towel, but am really trying to hold out, because if it really works, it will be worth it (right?). I just don't know how much longer I can deal with the side effects.
That said, I've been taking Baclofen since sometime, late last year (November, December, don't really remember, exactly), starting at 20 mg/day (that was what my doctor prescribed initially). Then, based on information I had read, regarding "clinical trials", asked my doctor to increase it to 30 mg/day. Finally, after reading many of the posts on here, I realized that 30 mg/day was nowhere near enough to actually be effective.
I then went online, in search of Baclofen, through online pharmacies, since I knew getting my doctor, or anyone else in the area (I'm in Las Vegas), would be an uphill battle. I found the cheapest source out there, by far, and began ordering online.
I began titrating up, fluctuating up and back down, due to ill effects, and after a few months, had reached about the 150 mg/day mark. This is where things started getting really bad.
I have been pretty much stuck around the 150 mark for weeks now. Everytime I try to go higher, the side effects become too unbearable to progress, and I have to back off. Let me list the side effects I've experienced, so far...
Nausea / Loss of appetite
Severe headaches
Daytime somnolence / Nighttime insomnia
Sleep paralysis / Hallucinations
Stage 2 High Blood Pressure (I always had perfect BP, before)
Complete inability to focus/think, I constantly feel like my brain is being poisoned
Bizarre brain zaps/pops, some of which are actually somewhat painful, but most often are pretty jarring
I'm sure there are others I'm forgetting, but you get the point. I can safely say, without a doubt, that I have never experienced such severe side effects from any medication I've taken in the past (and I've been on many). I generally tolerate all medications very well. I can't think of any that I've had any immediate ill effects from. In fact, a lot of medications (especially, for anxiety) I seem to be refractory to. This is the only medicatioon I've ever taken, that I seriously start to dread, when it's almost time to take my next dose, because I'm still feeling so awful from the previous doses, that I literally don't want to take it.
To elaborate on some of them, the daytime somnolence and brain zaps I've experienced are quite unlike anything I've ever experienced before. It has definitely made me drowsy during the day. I've had to drink two or three cups of coffee during the day, in order to stay awake at work. I never used to drink any coffee, because even in small amounts, it made me incredibly jittery, and exacerbated my anxiety, tenfold. I will say, that at least, Baclofen seems to have eliminated my anxiety. Even after drinking coffee, it still doesn't seem to make me anxious or jittery, anymore.
However, the somnolence seems to be accompanied with what I can only compare to the brain zaps one experiences when abruptly stopping anti-depressant medications. I have experienced that first hand, as well, and, while they are somewhat similar, they are quite distinct. Basically, what happens is that I will suddenly experience a momentary "brain shut-down", where I feel like I almost lose consciousness for a split second and then snap back into reality. Only problem is, when I snap back into consciousness, there is a jarring, unsettling, snap/pop sensation in my brain, that reverberates through my head, and leaves me stunned, for a few seconds. It is truly awful. It also seems to be triggered by sudden louse noises or enexpected physical stimuli. I was holding my phone at work, the other day, and it suddenly vibrated, sending a weird brain shiver through my head.
As far as the insomnia, aside from feeling exhausted during the day, I have felt a severe sense of being wired, most other times. It is now 12:15 AM and I feel like I've drank ten pots of coffee, even though I had none today (It is Sunday). I have been having complete inability to go to sleep before about 3 AM, even though I have to be at work by 8 or 9 AM. I have been sleeping around three to five hours a night, during the week. I have a prescription for Seroquel, which allows me to get to sleep on the weekends, but I can't take it during the week, because it makes it virtually impossible to wake up in the morning, during the week.
I've literally been at the point of giving up, every single night, but somehow, I manage to pull myself back together, and keep telling myself that it will be worth it if I just keep with it for another few weeks. I'm just wondering if anyone else out there has experience the same things. I know the somnolence is a common one, but the brain zaps, headaches and constant mind funk is killing me. I've just started a new job, and my constant inability to think or function is going to render me jobless.
BTW, I have just started working with Dr. Levin (in Chicago), thanks to all the information on these boards! I don't want to say anything negative about him, as he seems to be an incredibly knowledgable and compasssionate doctor. He didn't even want to charge me for the initial consultation and prescription fill. I told him he was crazy and please bill me! I know, what person in his right mind would say that? ;-) Anyway, my only thought was... He said he had treated over a hundred people with Baclofen, and he didn't have a single case where it didn't work. So, my thought is, out of a hundred or so patients, am I the only one who is experiencing these awful side effects? Like I said, I am ready to throw in the towel, but am really trying to hold out, because if it really works, it will be worth it (right?). I just don't know how much longer I can deal with the side effects.
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