Last post Mon, May 19 2008 9:22 AM by Lozbombs. 20 replies.
Hi, I was diagnosed with Spasmodic Torticollis last July, and have been off work ever since. Anyone else out there with the same condition?
SORRY I DON'T WELCOME TO DISABOOM ! RAINEY
Hi Debbie, thanx for my welcome. Hope ur ok? What form do your muscle spasms take and how do they affect u?
Hi Rainey, thank u for my welcome. Spasmodic torticollis is severe muscle spasms in the neck causing the neck to twist . How ru?
hi again, they are involuntary spasms and my leg will shake in a transfer or sometimes i get them from my stomach and they push my body outwards. they don't really hurt and not enough to get on meds for them. i used to take meds for them when i first got hurt but i stopped yrs ago. sorry to hear that yours are so badi that it effects your living. hopefully you might find some new answers here. good luck.
Sorry no, but I have heard that it's very painful, ouch! I'm sorry you have gotten this. Welcome to Disaboom. Hang in there.
Becky
Thanks Debbie. when did your spasms first start? do they stop u having a life? I am having botox injections in my neck but they are not as successful as they should be. I have improved since last July, but still not able to drive, although I am considering going back to work. I want to get back to some sort of normal life! x
Hi Becky and thank u for my welcome x. Very nice photo by the way!! :-)
Yes, ST is very painful, although i have sum very good painkillers at the moment, so i am very grateful for that!!
How ru?
Lozbombs:Thanks Debbie. when did your spasms first start? do they stop u having a life? I am having botox injections in my neck but they are not as successful as they should be. I have improved since last July, but still not able to drive, although I am considering going back to work. I want to get back to some sort of normal life! x
hi again, they started when i got hurt 29 yrs ago. no they don't stop me from having a life just once in awhile when i am wheeling i have to stop and let them take their course and then i can wheel again lol. [hard to explain] i don't have them all the time, varies some days alot some days not.
so yours are really bad ey? what happens your neck spasms? not your whole body? i'll take any left over botox for my face if you have any lol. sorry you can't drive that sucks depending on rides. thanks for teaching me about what you have and i think you should go back to work if you feel like it. are you not working because they won't let you?
hi norma, nice to meet you and welcome!
Welcome to the forums Lozbombs. I hadn't heard of your condition either, thanks for telling us more about it. You might put something in your profile so that others can learn something about it when they take a look there, especially since it might not be a well known condition to some here.
Like Debbie, I have the spaticity that causes spasms that are typical to a lot of SCI people. I only medicate for it at night so that I can get a few hours of uninterrupted sleep. Otherwise the spasms can actually be useful to maintain muscle tone.
It doesn't sound like that is at all the case with the type of muscle spasms you have in your neck. I hope you'll soon have more success from the botox injections than you've been having, and if not perhaps hit upon another treatment.
Best to you -
Lozbombs: Hi Becky and thank u for my welcome x. Very nice photo by the way!! :-) Yes, ST is very painful, although i have sum very good painkillers at the moment, so i am very grateful for that!! How ru?
I am fine, a bit harried at the moment because my son is graduating, Also, my youngest son, a sophomore in high school, just qualified for the district finals at the regional track meet today. He ran the 110 hurdles. The problem is, the finals are on the same day as my oldest's graduation party, of all bloody days!! My nerves are shot, but I'm hanging in there, lol.
I have never heard of "spasmodic" torticollis. I had to look it up. I always assumed that torticollis was temporary. It is not! I'm glad the painkillers are working for you. Hang in there!
thank u Norma x
I must admit that the injections arent as painful as i thought they wud be, but both my consultant and myself hoped they would be much more effective. At the beginning my spasms were so bad and so painful I found it difficult to even get out of bed. I spent a lot of time crying because of the pain. Apparently, torticollis is can be treated with physio, but torticollis with spasms has a neurological cause and is not so easily curable! Worse luck!
My painkillers and medication for the spasms are fantastic now, so I find that I am able to lead a 'sort of normal' life!! (apart from the wonky neck!).
Hi Debbie, thanks for your reply. I have been off sick since July because when I was first diagnosed, I could not even get out of bed because the pain and spasms in my meck were so bad. It makes you realise the normal things you take for granted when u cant do them! I was unable to sit or stand without being in loads of pain, so being at work was out of the question, as you can imagine! Now i feel a bit better, i am considering going back to work, altho they will have to arrange to get me there as i still can turn my neck enough to drive safely. In fact, i am having to sell my little car as its costing me too much money to leave it standing outside the house :-(
I am loads better now, but still have a wonky neck :-)
You will have to get in the queue for the spare Botox, Debbie!! All my friends are wanting some too!! ha ha
Do u have any treatment for your spasms?
