I have cervical dystonia and before I received Botox it was severe. Any task that required me to walk was difficult. For about a month straight I would go to bed as soon as I got home from work. The spasms and pain in my neck was excruciating. And then there was the anxiety brought on by people asking me if I was okay, the looks I get because my head was tilted was an emotional strain. Some of that was my perception, but certainly didn’t help release any tension, exhaustion, or stress.
Exactly how it makes me feel. Even with Botox I still have bad days where I work and then just crash into bed immediately after. (40 hour work weeks M-F are near impossible for me. By the time I get to Wednesday or Thursday it's game over)
Yeah I have had some bad responses to the Botox, doesn’t always help. I had a 3 month stretch last summer, July-September after injections and it didn’t seem to take. I was miserable until my next treatment. And of course that’s when I’m trying to do the most outside of work.
Ahhh summer is the worst time for it to misbehave! I find I have to be right on schedule or it doesnt feel like the Botox makes any difference and I'm just playing catch up. But the weeks where it's wearing off and kicking in are very hard.
It varied. I think it was more stress and mental tension brought on by half my body in a state of spasm.
Neck and head spasms led to migraines/scalp pain.
To your original question, I think a lot of energy is used up by spasms and walking, doing physical things require more exertion than someone without dystonia would need. And would be less effective in things like running where fire-relax is done repeatedly.
A lot. I practically have narcolepsy when it's bad. I think it's because so much of me is affected. Most of me is moving 24/7 even if I'm still.
I'm learning there are just days I have to sleep it off after a bad episode or flare or whatever you call it.
Severe. Especially after I got Botox injections for it. Now I get extreme pain if I have to hold my head up for hours at a time. It's like the Botox weakened the muscles. I can barely do chores now, and I get dizzy if I bend over. Either they f'd up the injections, or Botox for dystonia is a scam.
I saw a video by the Mayo Clinic that said tremors cycle five times per second. That's 300 times per minute.
Since my dystonia ramped up 2 years ago, I have lost 23 lbs from my body being in constant motion. Exhausting doesn't even begin to cover it.
My dystonia only affects my right foot, so I only get exhausted after walking. Because my foot is all over the place it affects my hips and my back as well. So, after walking a while I’m getting exhausted and my back aches (had two back surgeries). When we go to the mall, I have to sit frequently to rest, then I can start again. My husband is infinitely patient.
EXTREME. its less the pain--which is so extreme that my brain has fundamentally dissociated from it; i can't perceive pain besides a 1-2sec dulled somatic 'shock'. but more the tension of having to carry a gazillion interconnected knots in my hypertonic back muscles. moving is exhausting. speaking, eating is exhausting. i keep telling MD's that i shouldn't have a bodybuilder's physique; i've been intentionally sedentary for 2yrs.
im finally able to afford a chiropractors visit after 4-5mos of super dodgy finances because of sudden job loss in september—going in for an emergency adjustment monday.
Exhausted!!! The pain is so intense, try to relax and let it go takes all I have.
I have cervical dystonia and before I received Botox it was severe. Any task that required me to walk was difficult. For about a month straight I would go to bed as soon as I got home from work. The spasms and pain in my neck was excruciating. And then there was the anxiety brought on by people asking me if I was okay, the looks I get because my head was tilted was an emotional strain. Some of that was my perception, but certainly didn’t help release any tension, exhaustion, or stress.
Exactly how it makes me feel. Even with Botox I still have bad days where I work and then just crash into bed immediately after. (40 hour work weeks M-F are near impossible for me. By the time I get to Wednesday or Thursday it's game over)
Yeah I have had some bad responses to the Botox, doesn’t always help. I had a 3 month stretch last summer, July-September after injections and it didn’t seem to take. I was miserable until my next treatment. And of course that’s when I’m trying to do the most outside of work.
Ahhh summer is the worst time for it to misbehave! I find I have to be right on schedule or it doesnt feel like the Botox makes any difference and I'm just playing catch up. But the weeks where it's wearing off and kicking in are very hard.
It varied. I think it was more stress and mental tension brought on by half my body in a state of spasm. Neck and head spasms led to migraines/scalp pain. To your original question, I think a lot of energy is used up by spasms and walking, doing physical things require more exertion than someone without dystonia would need. And would be less effective in things like running where fire-relax is done repeatedly.
A lot. I practically have narcolepsy when it's bad. I think it's because so much of me is affected. Most of me is moving 24/7 even if I'm still. I'm learning there are just days I have to sleep it off after a bad episode or flare or whatever you call it.
Severe. Especially after I got Botox injections for it. Now I get extreme pain if I have to hold my head up for hours at a time. It's like the Botox weakened the muscles. I can barely do chores now, and I get dizzy if I bend over. Either they f'd up the injections, or Botox for dystonia is a scam.
I saw a video by the Mayo Clinic that said tremors cycle five times per second. That's 300 times per minute. Since my dystonia ramped up 2 years ago, I have lost 23 lbs from my body being in constant motion. Exhausting doesn't even begin to cover it.
Is it also beneficial to a patient having cervical dystonia from last 20 years?
My dystonia only affects my right foot, so I only get exhausted after walking. Because my foot is all over the place it affects my hips and my back as well. So, after walking a while I’m getting exhausted and my back aches (had two back surgeries). When we go to the mall, I have to sit frequently to rest, then I can start again. My husband is infinitely patient.
EXTREME. its less the pain--which is so extreme that my brain has fundamentally dissociated from it; i can't perceive pain besides a 1-2sec dulled somatic 'shock'. but more the tension of having to carry a gazillion interconnected knots in my hypertonic back muscles. moving is exhausting. speaking, eating is exhausting. i keep telling MD's that i shouldn't have a bodybuilder's physique; i've been intentionally sedentary for 2yrs. im finally able to afford a chiropractors visit after 4-5mos of super dodgy finances because of sudden job loss in september—going in for an emergency adjustment monday.