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Anyone else have cervical dystonia?
@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
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I would love to talk to you Kevin about the differences in the dystonia<br />
movements and the seizures.<br />
<br />
-- <br />
Kaia<br />
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1 ReactionHello Kaia, I too would like to talk to you in regards to the dystonia and the epilepsy of course...Kevin
...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<br />
I HAVE CERVICAL DYSTONIA. THE PAIN IS UNBEARABLE. IS THERE ANYONE OUT THERE WITH THE SAME SITUATION.
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2 ReactionsHi @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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1 ReactionI realize this post is from awhile ago. My mom is 82 with cervical dystonia and also has unbearable pain. No doctor or treatment has helped. Looking for ideas for pain management.
Hello @jenandmom and welcome to Mayo Clinic Connect. I see you wish to help your mother who has cervical dystonia.
Members like @oldkarl and @sadnancy have experience with this topic and may be a good resource for you.
I thought you might find this video on DBS interesting. The video mentions that this can be used to treat Dystonia.
- Deep Brain Stimulation Using Segmented Leads:
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/videos/deep-brain-stimulation-precision-using-segmented-leads/VID-20457940?
Also, in case it is beneficial, I've also included some basic information about how Mayo Clinic goes about treatment.
- Cervical Dystonia: Diagnosis & Treatment:
https://www.mayoclinic.org/diseases-conditions/cervical-dystonia/diagnosis-treatment/drc-20354128
What has your mom tried for treatment to date?
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2 ReactionsHello, I was diagnosed with a Movement Disorder/Cervical Dystonia after I was rear-ended while parked, 10 months after I was side impacted by a Ford 150 super duty truck. I get Botox injections every 3 months. The pain is unbearable! No one could understand while the swelling & protruding of tendon/muscles were protruding when I would just turn my neck a little. My neck gets stuck. The pain management thought I had a Supraclavicular Fossa Mass/tumors, even though, it only swelled when I moved and have spasms. The first diagnosis after the ultrasound was Myositis of the right side. That's because the right side was the only side swelling at that moment. It's the weirdest thing & very painful!
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2 ReactionsI have severe stenosis and pinched nerves due to accident. Sometimes I feel as though my head is in a vice. I’m so sorry you’re feeling this horrible pain. Mine is not quite that bad. Occipital neuralgia is the worst pain. Up one side of my neck, behind my ear, and up to the top of my head.
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