Botox for dystonia

[Southernladyla]

I was having muscle spasms in my neck ans shoulders. My neurologists injected my neck with Dysport which is a form of Botox. After a couple of days I could no longer hold my head up. I call my neurologist and she gave me some medication to help muscles contract. ( which is opposite of the Botox). Since then, I can do very little. Walking, even with a neck brace is painful and I have to push on my chin to force my head to be in an upright position. I am very weak and unable to do household tasks. Of course the lack of moving just makes the Parkinson’s worse.

Has anyone else ever had this problem? What did you do? How long did it last?

[jeffmayer]

Just shows they haven't got a bloody clue because they don't have the condition it's like someone who teetotal counseling an alcoholic

[MerckK]

I also feel such pain in my neck and left leg. My neurologist ignored it and didn't prescribe any medicine. I spray muscle relaxant and get relief but I get my neck and feet massaged with a herbal oil càlled mahanarayan oil in India.You can use any hot oil available in your place.

First apply the oil in your stiff areas and do light massage pressing upwards and exercises for neck muscles relaxation.Move your head slowly up and down,left and right, towards the shoulders.

Rotate your hands in clock and anticlock directions. Put your head extremely down and come back

You will feel relaxed within few days .

[Crusoe7]

Hi. I suffer from cervical dystonia and have been getting botulinum injections periodically. Though it's never affected me as it did you. On the contrary, most the time it had a little to no effect on me. How many units did you receive? It sounds like you've got too much of it. Sadly, I can't advise you on how to get your current situation better. However, from my experience when the injections were guided with the aid of EMG, it had more success than the sessions, where US was used. That's the 2 tools used in locating the muscles that need be injected. I hope you get better soon.

[beehive23]

Exactly what happened to me 3 yrs ago. i dc'd the botox and it wore off after 1-2 months. it was horrible. hang tough

[Southernladyla in reply to beehive23]

Was it hard for you to do any exercise or normal routines? Is there anything you did that helped? I can walk very far even with a cervical collar. Worried about not getting enough exercise.

[beehive23 in reply to Southernladyla]

for a couple months i literally could not hold my head up the neuro surgeon told me it was all imagination...i mostly sat on the couch with my head propped up as it slowly diminished...scared the heck out of me but i had seen it was a potential side effect. my neuro surgeon is 240 miles over the mountains one way so i could only call him...so much for that. i used a cervical pillow for sitting up. im sorry i have no other suggestions. that really stinks it happened to you. hang tough

[Southernladyla in reply to beehive23]

Thanks beehive23. I am wearing a cervical collar and my neurologist gave me some meds that cause muscles to contract. They tell you high intensity exercise helps to use up the botox. But I haven’t figured out how to do that when you cannot hold your head up. Thanks for your help. At least I know someone else went through this!

[beehive23 in reply to Southernladyla]

No problem i hate that EMG....i got 10 injections listening to the EMG whining as it approached my spinal column........gives me the creeps.

[kaypeeoh]

I get botox for headache and neck spasms. I get the injections every 3 months. So botox could last that long.

[Kingsdaughter1]

I had the same thing happen to me about four years ago. All I could do was wait until it wore off, about three months.

[Southernladyla in reply to Kingsdaughter1]

Thanks. Was there anything you did that helped?

[Kingsdaughter1]

I wish I had some great suggestion for you but unfortunately I don’t. I have pain daily . I have had other injections, like epidurals. I just started seeing an upper cervical chiropractor. I hope that you can find something that helps you.

[Southernladyla in reply to Kingsdaughter1]

Thank you! God Bless!