I have the exact same thing! Pretty identical actually.. I get them all day and all night and they will go whenever and however they feel like it. I've been told by two neurologists that it isn't any kind of a movement disorder, but I'm not so sure I believe that.. It can either be just one arm, one leg, or one side of my body that goes into a "spasm" or "contraction" or it can be my whole body. There are other annoying symptoms as well. Do you know what you have?? Or what it could be??
My heart go's out to you , and I hope and pray you will not have to live with this for long and the Doc's will fine what will help you all .. God Bless
Thank you! I suffer from this daily, and found Benadryl to be the only thing to help stop a serious attack, which baffles my neurologist. Perhaps if let him know of others taking it, it will help. I'm diagnosed with Conversion Disorder, btw, where my brain is converting stress, emotional changes, fatigue, etc into seizure activity in the form of cataplexy and dystonia. Doesn't show up on brain tests because it's "non-epileptic" but it's very real (from an old head injury). Hope that helps!
@JerrodBalzer THat's funny because Benadryl causes dystonia in my right leg (focal) so I simply stay away from it and fortunately the leg responds extremely well to walks on my Norditrack. If I skip that, within a few days I will notice. I do this 3/week for 2 mi ea..
thank you for sharing your video. I know is very painful. I have to take requip (ropinole) its been my life saver. muscle relaxer anxiety pain meds nothing works. I hope you getting some releif. I cant get the neurolgist to take me on they say is psychological.. I got requip because my primary automatically said it was restlessleg. it works so the docs say to keep taking it.
@Batistamaniac1 No, I am going back to my original Neuro team in San Francisco, California. They will be able to tell me what can be done to fix this mess that I am in now. Thanks for asking .
@Niceboy3377 a charlyhorse from hell. lol I want to just relax, but can't...I used to panic, but now have taught myself that it will be over...eventually! :-/
gosh, i had a remission about two years ago, and for the first time in my lifetime of disability, muscle spasms began, and despite Diazepem, Lyrica and Flexeril, they come on just like you say, a storm. sometimes i got them in public, and find myself muttering to my body before i realize people can hear me ; ( but that said, this is what it is. it has also had an effect on my speech - where i can't get words out, i speak words that are understandable . i use a 'safety word" that helps me calm
@keeliey1 no...I take Neurotin, Diazepam ,Benadryl and Motrin. That's it. Hopefully when the DBS gets fixed, I will go back to just the Neurotin and Motrin. and back to my normal life!! 8-) I have tried pretty much all meds that they have for dystonia , including Baclofen.
@hotlez008 Some people , yes Benedryl does make it worse. With me, it hasn't had any bad effects. I am lucky that way. My list of medication allergies is LONG! so if the doctor's find something that does work, they use it. Diazapam and Benedryl is all they give me for these storms.
thx for uploading, I hope I can upload many myself when able, went through many emotions & releazlied I have been severely storming most days or paralysis since last oct2010, contorted and trown all over bed, partial paralysis, full parlysis in contorted postions or full unable to speak often - and alone..I have been storming since 2003 didn't know what was till last year.often now parlayzed in fetus postion. grateful you have someone & supports & thx for yours <3 hope DBS sorted out again asap.
I have the exact same thing! Pretty identical actually.. I get them all day and all night and they will go whenever and however they feel like it. I've been told by two neurologists that it isn't any kind of a movement disorder, but I'm not so sure I believe that.. It can either be just one arm, one leg, or one side of my body that goes into a "spasm" or "contraction" or it can be my whole body. There are other annoying symptoms as well. Do you know what you have?? Or what it could be??
DanggMissi 1 week ago
FAKE
wiccanmoonman 1 month ago
My heart go's out to you , and I hope and pray you will not have to live with this for long and the Doc's will fine what will help you all .. God Bless
mrscarol5555 1 month ago
Thank you! I suffer from this daily, and found Benadryl to be the only thing to help stop a serious attack, which baffles my neurologist. Perhaps if let him know of others taking it, it will help. I'm diagnosed with Conversion Disorder, btw, where my brain is converting stress, emotional changes, fatigue, etc into seizure activity in the form of cataplexy and dystonia. Doesn't show up on brain tests because it's "non-epileptic" but it's very real (from an old head injury). Hope that helps!
JerrodBalzer 1 month ago
@JerrodBalzer THat's funny because Benadryl causes dystonia in my right leg (focal) so I simply stay away from it and fortunately the leg responds extremely well to walks on my Norditrack. If I skip that, within a few days I will notice. I do this 3/week for 2 mi ea..
adamp51 3 weeks ago
I'm speechless, no one should have to go through this. I'm sure you've tried everything but what about Rick Simpsons Cannabis Oil??
InacityMedia 1 month ago
@InacityMedia nope! and don't plan to, but thanks for the info.
canadianlover2007 1 month ago
thank you for sharing your video. I know is very painful. I have to take requip (ropinole) its been my life saver. muscle relaxer anxiety pain meds nothing works. I hope you getting some releif. I cant get the neurolgist to take me on they say is psychological.. I got requip because my primary automatically said it was restlessleg. it works so the docs say to keep taking it.
gretchencazares 1 month ago
is everything better now?
Batistamaniac1 3 months ago
@Batistamaniac1 No, I am going back to my original Neuro team in San Francisco, California. They will be able to tell me what can be done to fix this mess that I am in now. Thanks for asking .
canadianlover2007 3 months ago
@canadianlover2007 what does this feel like
Niceboy3377 2 months ago
@Niceboy3377 a charlyhorse from hell. lol I want to just relax, but can't...I used to panic, but now have taught myself that it will be over...eventually! :-/
canadianlover2007 1 month ago
@canadianlover2007 painful?
Niceboy3377 1 month ago
@Niceboy3377 ... Extremely painful ! :( like the worst charley horse you ever had.
canadianlover2007 1 month ago
@canadianlover2007 :(( do u still have it?
Niceboy3377 1 month ago
@Niceboy3377 ...yes I will always have it! but I am dealing with it! :)
canadianlover2007 1 month ago
gosh, i had a remission about two years ago, and for the first time in my lifetime of disability, muscle spasms began, and despite Diazepem, Lyrica and Flexeril, they come on just like you say, a storm. sometimes i got them in public, and find myself muttering to my body before i realize people can hear me ; ( but that said, this is what it is. it has also had an effect on my speech - where i can't get words out, i speak words that are understandable . i use a 'safety word" that helps me calm
dakotablue52 3 months ago
do you take Baclofen?
keeliey1 3 months ago
@keeliey1 no...I take Neurotin, Diazepam ,Benadryl and Motrin. That's it. Hopefully when the DBS gets fixed, I will go back to just the Neurotin and Motrin. and back to my normal life!! 8-) I have tried pretty much all meds that they have for dystonia , including Baclofen.
canadianlover2007 3 months ago
did you say benadryl?? that can cause muscle spasms! could possibly be making it worse?!?! just a thought. hope you find answers soon.
hotlez008 4 months ago
@hotlez008 Some people , yes Benedryl does make it worse. With me, it hasn't had any bad effects. I am lucky that way. My list of medication allergies is LONG! so if the doctor's find something that does work, they use it. Diazapam and Benedryl is all they give me for these storms.
canadianlover2007 3 months ago
poor woman :(
SlumberCloud 4 months ago
thx for uploading, I hope I can upload many myself when able, went through many emotions & releazlied I have been severely storming most days or paralysis since last oct2010, contorted and trown all over bed, partial paralysis, full parlysis in contorted postions or full unable to speak often - and alone..I have been storming since 2003 didn't know what was till last year.often now parlayzed in fetus postion. grateful you have someone & supports & thx for yours <3 hope DBS sorted out again asap.
CherylSpeaksOut 6 months ago