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kevinkelley
@kevinkelley

Posts: 9
Joined: Oct 23, 2015

Anyone else have cervical dystonia?

Posted by @kevinkelley, Nov 2, 2015

@Kaia Hi Kaja, this is Kevin Kelley… just read your post on Mayo Clinic.. I too have and do experience Very Similar symptoms as the ones you described of your daughters…can honestly say, I have tried a very great # of various seizure medicines; I had the VNS and with that upon its battery cycle and the replacement of, experienced an occurence of which I gladly would share; said with zero exaggeration, I experience seizures if not daily than def. bi-wkly and with that those the dystonia movements as well… should there be anything in my history of those that you would like to know, don’t hesitate to ask, I will gladly share… should you find anything that is very helpful I would be thankful of you to share thanks, Kevin Kelley

REPLY

I would love to talk to you Kevin about the differences in the dystonia
movements and the seizures.


Kaia

Hello Kaia, I too would like to talk to you in regards to the dystonia and the epilepsy of course…Kevin

@Kaia

I would love to talk to you Kevin about the differences in the dystonia
movements and the seizures.


Kaia

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…thanks and I look forward to; I honestly am not in the right ——-to share much intelligently so, guess that’s a part of having seizures. All and everything aside,…. Everyone have a great, and full night!!!!! :-))))) of corse I had to drW these:::///(((. Sweet dreams K

I HAVE CERVICAL DYSTONIA. THE PAIN IS UNBEARABLE. IS THERE ANYONE OUT THERE WITH THE SAME SITUATION.

Hi @shenaaz, welcome to Connect!
I moved your message to this discussion so you can connect with @Kaia and @kevinkelley. I’m also tagging @lo who talked about dystonia a while back.

@shenaaz, how are currently managing the pain?

HI, I AM CURRENTLY ON BACKLOFEN, TRIPELENE AND RIVOTRIL. I ALSO HAD BOTOX INJECTIONS BUT THE PAIN NEVER GOES AWAY.

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