cervical dystonia

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Takes me by surprise

I just spoke with my neurologist letting him know that hemiplegic migraine and dystonia were tolerable this month till it wasn’t! A few hours after discussing supplements, etc, I sit in my sofa ready to unwind and watch a little TV. Out of the blue, I felt off, my left side got heavy and was unable to move. My face drooped and was unable to talk.

After a few days of good health, I got struck with hemiplegic migraine again which led to another dystonia attack! Boy, these things always take me by surprise, but my dog, Rondo is always ready to be by my side.💜

#ChronicMigraineSyndrome #IntractableMigraine #CervicalDystonia #DopaResponsiveDystonia #HemiplegicMigraine

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chatcat761 Cathy Carlile Turner

#chatcat76  I'm so excited...I found myself! Please don't reply to the text in the title as this is my home. I'm so sorry. I bet I'm the first one to make a mistake! The name of my closed group is Let's See the Patient. I'd love for you to join, as I'm getting all my writings together about my Chronic illnesses and I love to help make appointments go better. Soon, when I'm eligible, (I'm new, so I might not be "old" enough yet), I'd love to do "rooms". I'll get my story in asap. But I'm pausing for a flare to end!

Have a good ??? My husband forgot to tell me what day it is.


#TBI #Dystonia #CervicalDystonia #Neuropathy #Virus #EpsteinbarrVirus #LymeDisease #CpapMachine #Relationships #DoctorVisit


What is this group about? #TBI #CervicalDystonia #Neuropathy #ChronicEpsteinBarrVirus #DoctorVisit #PatientAndDoctorExperiences

You can see this group is about anything. I wish it wasn't! I didn't put Childbirth, as I don't think it applies! lol. But one thing is...you can't get well or better if your doctor doesn't understand. You know that! Don't be afraid to search for one who does! I AM NOT A DOCTOR, but I've been in the medical field 20 years before disability. I've never stopped. Advocacy because of my love. While I am weary and have shut down many sites, I love Mighty so here I am.

If you have questions, I beg you to be as specific as your comfort level allows. (regarding the relationships) There are ways to make your visits rewarding and helpful for getting better. I can attest to this. I've lived through things that are a bit shocking, but having the right doctors and mind set, is what saved my life. I am recovering from something now, so thanks for your patience.

Something we have known for a long time, but it's not spoken about. Again, I do not "bash", but I urge you to go with your gut. Harvard found (as if it was new) the 3rd leading cause of death. And many believe it is higher, as most are unreported. This is not to scare, but to inform you in all honesty, you must be involved in your care. Trust, transparency etc... is a must. I will do a video to show what is needed for doctor visits at another time. Please, it's your life, and make it worth getting better!


Just diagnosed with cervical dystonia

I thought I had a head tremor due to my MS but found out yesterday that I have cervical dystonia. It is a #Rare disease that causes the muscles in my neck to contract causing my head to move. I feel so depressed by this new diagnosis. I didn't need anything else to deal with. #MultipleSclerosis #CervicalDystonia #Anxiety #Depression


Unpopular Opinion

Unpopular opinion: It's selfish to ask a loved one who is suffering with an incurable disease to stay, knowing they are in severe pain from the second they wake up until the second they go to bed.

My question is: Does it fulfill your life to watch them suffer? Although they appreciate the gentle massages, the glasses of ice water, the chores you do for them when they can't... the fact of the matter is, it doesn't alleviate the pain and it doesn't make them functional again. Not matter how hard to you try to look at their life through your lens, the truth remains: People in SEVERE chronic pain are not living, they are merely existing - and they are SUFFERING through every moment of it.

You all will disagree, but I'd cry more watching them suffer and be miserable through every second of their life than I would after the fact, knowing they are at peace without pain.

#ChronicIllness  #ChronicPain  #Dystonia #torsiondystonia #oromandibulardystonia #CervicalDystonia

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Too many bad days

Been in searing pain all day since waking up in tears at 3 am. Today it’s only one side but the muscles are locked to the max. I don’t have much, but I’d give every penny in my bank account to have just 1 single day without pain.

Something’s gotta give. I can’t go on like this. #ChronicIllness #ChronicPain #Dystonia #CervicalDystonia

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My “normal”

A healthy nervous/musculature system should should 0’s at rest. This is on a 1-3 scale, 3’s being the worst. This is me AT REST. The occipitalis they cannot measure with EMG which is why they show -.

At least my pain, discomfort, and neurological problem can be quantified and justify how Im feeling. I always feel bad for those with fibromyalgia. Although my condition and pain is invisible to the naked eye most days (the days when my posture isn’t completely locked up and twisted to the side), my doctor can confirm it with this test, unlike fibro.

Quantifying it only helps mentally - wish it helped with the actual pain. #ChronicPain #Dystonia #CervicalDystonia #Fibromyalgia
#ChronicIllness #dystoniawarrior

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Here’s to hope

Hoping this book will help me feel less alone in battling this awful, life stealing condition. 💔 #Dystonia #CervicalDystonia #ChronicIlless #ChronicPain