Owwwww. Thanks for making this video. I've had some kind of generalized dystonia for 12 years, but feel really alone sometimes, and while I don't like that anyone else has it, it helps a little knowing I'm not the only one in this boat. Hang in there.
Just seen your video. I'd just like to ask how u manage to cope with ur dystonia. I have the same especially this video, with the shoulder wanting to come forward. I was fine when I was told I had Dystonia. But the past 6years have just got harder and harder to cope with. I think u are very brave. God bless, and take care.
Have you tried Ambien while you are experiencing a Dystonic Storm?
I have Dystonia, and 10-20mg Ambien will stop a storm if I take it during it. I've noticed that it provides relief (for 2-3 hrs), and I'm wondering if it does the same for anyone else with Dystonia. Ambien is the only thing that helps me. Valium doesn't help me at all.
I experience the *EXACT* same symptoms in this video except that it affects my left side, not the right. I'm so sorry that you have to experience this, too.
My left shoulder has been doing this for ten days straight, it only stops for about an hour with the valium that the nuerologist prescribed me. Other than that it is constant and it is oainful. I heard the dr say today that is was dystonia tremors, possibly brought on by a reaction to an antibiotic I took two weeks ago..God bless you, I understand what you are gong through and I hope you feel better real soon!
Thank you for sharing your videos. I've been recently diagnosed with thoracic and cervical dystonia. I'm waiting for approval for botox by the insurance company.
Got a kiss from my husband when he got home today, and it made my neck and face start spasming. Dystonia can kiss my butt!
My daughter Jessica has Myoclonic Dystonia and has the terrible muscle cramps and spasms. We know how you feel and pray for you to get some relief. She had DBS surgery last May 2009 and is doing much better. She is not using the cane at this time either. Hang in there. I do believe the right medication or treatment is in the works, God bless you.
thank you for making this video. I have been wondering if part of my movement disorder is dystonic, having watched this video, I think it probably is not. i get very fast movements, and occasional slow movements causing my head to turn and the muscles in my abdomen to tighten. Usually they are only sustained for a few seconds. I can see yours are much more sustained. your video has helped me. Thank you.
There's a surgery for dystonia, I don't know if it's done in every countries and if it works for everybody but it's worth checking it out! Have you talked your doctor about it? I believe it is called deep brain stimulation, but not sure. I heard about it the other day!
i got botox today in most of the muscles sticking out in this video. it -both the spasms and the botox- are painful. hopefully attacks like this called storms will stop for awhile. i have felt horrible today and hope tomorrow is better. after stopping this video the spasms went all the way down rt side and i stayed in a ball till it stopped- about 30 min total. it hasn't been this bad in awhile.-shakeyamy
Dear Amy, my symptoms are almost identical to yours. I couldn't believe it when I saw your video. I have been diagnosed with cervical and hemidystonia--rt side, including face, shoulder arrm, hand, and leg. Did the BOTOX really help you? I'm considering it, but wondering if it's really worth it. Or do I stick with muscle relaxants, which help until I have a storm?
I'm not diagnosed yet. I went to the hospital last night and was jolting and twitching in the waiting area for a while. The nurses took me for a junky in withdrawal.
Owwwww. Thanks for making this video. I've had some kind of generalized dystonia for 12 years, but feel really alone sometimes, and while I don't like that anyone else has it, it helps a little knowing I'm not the only one in this boat. Hang in there.
PrincessArtemis 2 weeks ago
Just seen your video. I'd just like to ask how u manage to cope with ur dystonia. I have the same especially this video, with the shoulder wanting to come forward. I was fine when I was told I had Dystonia. But the past 6years have just got harder and harder to cope with. I think u are very brave. God bless, and take care.
MsJerry789 3 months ago
BIG HUG out to you Amy! Thanks for being there for us.
stopthemud 1 year ago
smoke a joint...maybe your really stressed...
LiTtLeBiBiStAr 1 year ago
Magnesium
Pridefulpain 1 year ago
Have you tried Ambien while you are experiencing a Dystonic Storm?
I have Dystonia, and 10-20mg Ambien will stop a storm if I take it during it. I've noticed that it provides relief (for 2-3 hrs), and I'm wondering if it does the same for anyone else with Dystonia. Ambien is the only thing that helps me. Valium doesn't help me at all.
I experience the *EXACT* same symptoms in this video except that it affects my left side, not the right. I'm so sorry that you have to experience this, too.
sugarbeartx 1 year ago
aww! sorry my love.
is it cureable??
xx
TheUnacceptableLove 1 year ago
My left shoulder has been doing this for ten days straight, it only stops for about an hour with the valium that the nuerologist prescribed me. Other than that it is constant and it is oainful. I heard the dr say today that is was dystonia tremors, possibly brought on by a reaction to an antibiotic I took two weeks ago..God bless you, I understand what you are gong through and I hope you feel better real soon!
ILUVHORSES1981 1 year ago
Why did Mother Teresa go to New Bedford Mass in 1995?
The whole pedophile thing is a cover story for the Vaticans fascism.
Thats why nothing ever happens to them.
The catholic church began cracking down on dissent in the
12th century under pope Innocent III.
Nothing has changed. The American Inquisition is the Spanish
Inquisition with the rule of law.
Watch Titicut Follies.
philipnute com
zsezse215 1 year ago
can you stop that, i take risperdal and sometimes i do this too but not that much
LaBellaa1984 1 year ago
Just kidding, good luck with your dystonia, I hope you find a treatment regiment that works for you.
BobbyIronsights 1 year ago
I think she's just faking.
BobbyIronsights 1 year ago
Chelation and HBOT really do work.
CJEB4 1 year ago
thank you for sharing, it's been useful for my neuro exam
Sparrowmind 1 year ago
Thank you for sharing your videos. I've been recently diagnosed with thoracic and cervical dystonia. I'm waiting for approval for botox by the insurance company.
Got a kiss from my husband when he got home today, and it made my neck and face start spasming. Dystonia can kiss my butt!
classicsredone 2 years ago
My daughter Jessica has Myoclonic Dystonia and has the terrible muscle cramps and spasms. We know how you feel and pray for you to get some relief. She had DBS surgery last May 2009 and is doing much better. She is not using the cane at this time either. Hang in there. I do believe the right medication or treatment is in the works, God bless you.
dasey22001 2 years ago
talk to your doctor about hyperbaric oxygen therapy!!! it can really help with dystonia!!!
Jmac890 2 years ago
It looks so painful, i really hope that someone finds a cure soon, good luck and hope you feel better.
keenandwhat009 2 years ago
cool tattoo... keep it up AMY wish you the best of luck.
oddsource 2 years ago
Hey Amy,
My mouth pulls down on the left. Does it make your storm worse to talk while it's happening?
OriginalBeauji 2 years ago
thank you for making this video. I have been wondering if part of my movement disorder is dystonic, having watched this video, I think it probably is not. i get very fast movements, and occasional slow movements causing my head to turn and the muscles in my abdomen to tighten. Usually they are only sustained for a few seconds. I can see yours are much more sustained. your video has helped me. Thank you.
kaazoom 2 years ago
hey SA, I am also suffering, i have cervical dystonia.
have you ever tried gluten-free diet?
or
upper cervical treatment?
just wondering i just found these two options and am excited to try them, want to see if others have tried them w success
bobtail1967 2 years ago
There's a surgery for dystonia, I don't know if it's done in every countries and if it works for everybody but it's worth checking it out! Have you talked your doctor about it? I believe it is called deep brain stimulation, but not sure. I heard about it the other day!
Hope you get better!
LaraRibas 2 years ago
i got botox today in most of the muscles sticking out in this video. it -both the spasms and the botox- are painful. hopefully attacks like this called storms will stop for awhile. i have felt horrible today and hope tomorrow is better. after stopping this video the spasms went all the way down rt side and i stayed in a ball till it stopped- about 30 min total. it hasn't been this bad in awhile.-shakeyamy
ShakeyAmy 2 years ago
Dear Amy, my symptoms are almost identical to yours. I couldn't believe it when I saw your video. I have been diagnosed with cervical and hemidystonia--rt side, including face, shoulder arrm, hand, and leg. Did the BOTOX really help you? I'm considering it, but wondering if it's really worth it. Or do I stick with muscle relaxants, which help until I have a storm?
dlnwrite 2 years ago
Yeah, I believe you that it sucks.
Ouch. I hope you're feeling better.
I'm not diagnosed yet. I went to the hospital last night and was jolting and twitching in the waiting area for a while. The nurses took me for a junky in withdrawal.
idranktheseawater 2 years ago