Dystonia without Tremor?

[AllHis]

I have traveled the long road for many years, and just Tuesday, may be a "breakthrough!"

I was referred to a neurologist specializing in botox treatment for headaches. What a wonderful find!

I have been suffering on and off with muscle tightness over many years. I had to give up my profession of seamstress of 26 years with a shoulder pain that never responded to physical therapy treatments. I was a business owner closing up shop, not to retire, but because of unrelenting tightness at the age of 51. Pain won.

So after my carpal tunnel release 2 years ago...no, 3 years now, I've managed to isolate the pain to my neck. Not sewing, relieved my shoulder. (Do you know, it comes back if I try to sew?!)

Tuesday I heard the most beautiful words from the Neurologist. "I think I know what's going on here."

I was shocked & amazed!

Another puzzle piece in place!

She handed me an information pack on cervical dystonia and information on botox. I was given information and a list of support groups! WOW! A was encouraged to learn & find support!! (another first!!!)

I was just handed a key. A way out!

I sent her a message of gratitude the very next day. I explained that for over a year I've been trying to convince myself that it was an anxiety disorder. All the specialists for my neck (and they were adding up quickly) spent much time convincing me it was anxiety. So I thanked this kind doctor for saving my mental health. Half the battle has now been won. It restored my mental health!

Now my questions.

*With the neck, would it be true that any tremor or muscle spasm would be more felt by me than viewed by others?

I feel like someone has a cord pulling back on the front of my neck at times. My eyes have a lot of pressure behind them and I just want to close them a bit. And my hearing sometimes closes in and I can't hear well. I had sudden hearing loss in one ear last year (base tones.) The neurologist is curious if botox may restore my hearing...

*Has anyone experienced chest pain with this?

*Can it move to different parts of the body?

Almost 2 tears ago I went to a urologist for what I thought was UTI. Well it was a pelvic floor disorder. My pelvic floor was too tight! So tight, my body wan't releasing urine and acted just like a UTI. I was sent to therapy to learn muscle release and relaxation. And would you know, it worked!!

Looking back, pieces are fitting together, and I can move forward. It sure helps when you know what you're fighting!

*Any advice for my neck? Everything , and I mean everything, is aggravated! My problem is my neck is being pulled down. It is most unhappy when I try to "straighten" my spine and "put the curve back" in my neck. A therapist was working most patiently with me to "correct my posture" and all the while my body was in protest. I'm still trying to figure out how neck pain therapy sent me to the ER multiple times this year with chest pain?!

*Can anyone relate?

[amugofjava]

Hi,

I'm glad you have had a breakthrough and a diagnosis. I can certainly relate to some of your points. As for your spasms being felt by you more than being visible to others - from personal experience I would say yes. For me, I can become very self conscious about my twitching, but a lot of the time, even though I know I am doing it, I don't think people notice. It's only when the spasms and twitching become bigger that people start doing a double take and look at me as if to say - what was that?!

I've never experienced chest pain, but when my neck goes into spasm it does tend to radiate down my back and into my arms and stays like that for about 7-10 days before beginning to dissipate.

I believe it can move to other parts of your body. Mine started in my neck, but now my right arm joins in, the right side of my mouth can pull and on bad days my right leg can give out too. From what I have read, if it's going to travel it will typically do so within the first year or so of having it and then settle down and travel no further.

I hope this is not breaking the posting rules, but can I also say that are some fantastic Dystonia groups on Facebook. I'm not a fan of FB but the groups are very friendly, welcoming and contain people far more knowledgeable then me

[Rkai]

Yes I can relate. I too have cervical Dystonia....my spasms and neck turning can only be seen when my muscles relax. Hence with me my muscles are tense all the time fighting the tremor....result is that I get exhausted easily and no- one thinks there is anything wrong including doctors. That’s partly why it took nearly two years before diagnosis. The muscle tautness is involuntary so can only control it by forcing them to relax for a few seconds. The only sleep I can get is by sleeping tablets which I hate taking but have no choice. Sorry to go on but could relate so easily to your note. Finally Botox had no effect further adding to lack of belief that I had a problem.

[AllHis in reply to Rkai]

I personally feel your pain. We could possibly be great support for each other. I was researching on line last night, and found some helpful information. First, we're not alone. 30% have internal spasms at first onset.

MANY DOCTORS all agreed my chest pain was not my heart, and concluded it is an anxiety disorder. The more the chest pain, the more anxiety...

I FINALLY FIGURED IT OUT READING INFORMATION LAST NIGHT! These are not panic attacks in my sleep, or while making dinner, or just sitting in a chair. They're tremors. Well, now that I know it's not my heart going crazy, I think I'll learn to deal with it a bit better.

Another option I have is a special mouth piece at night. I was reading of one woman with Parkinson's found that if you take the tension off the TMJ joint her tremors went away & she walked better! Apparently there are many nerves at that joint. I'll do a bit more reading & post more info later.

Nice to meet the both of you!

[Rkai in reply to AllHis]

Look forward to hearing more in due course ! Thank you

[AllHis in reply to Rkai]

Well, I discussed the mouth piece with my physician caring for my jaw. He simply stated that it was not well researched. He had no problem trying something like a mouth guard, especially over medication. Yet it was his opinion that the one lady may be an exception, and not everyone would have the same results.

[Hidden]

Hello new friend..welcome..I'm sorta a newbie to this sight as well.I'm also 51 and this condition has reaked havoc on my life .Heres some info that may help !?!?! I have ALOT of problems with my neck also. For me I try to prop my neck straight with blankets or a pillow .Heat helps sometimes..sometimes cold packs..just depends on level of my spasm pain.

My biggest relief comes from my amazing chiropractor.He takes me whenever Im in bad shape and works his magic on my neck and other parts affected by the Dystonia.Its not a cure,but it gives me relief till I see him next/weekly or bi-weekly.I will ask him Thursday what exactly the technical terms are of what he does to help me, and Ill let you know.

My neck pain affects even my shoulder and shoulder blade and sometimes down to my waist on one side.I spend a lot of time bedridden after a Episode because of what happens to me..

An" Episode" for me... affects my vision and hard to see sometimes (I have to wear sunglasses because light affects me),sometimes my face droops on one side ..my speech gets affected,my hearing gets affected and loud noise bothers me,cant use my arms because my hands get locked shut, and my legs are too weak from spasms so I need my wheelchair temporarily.Also have trouble swallowing after an Episode, so I watch what I eat.

I also get chest/diaphragm severe spasms.

As far as spasms being felt by you more than visible to others....

My one dog knows before I get them 80% time. He gets real close to me and stares at me..sometimes its like hes telling my secret before I tell my family.He even used to go sit in front of my family members and stare at them to let them know .He was never trained..just started sensing it.

A lot of times I hate telling my family..but unfortunately they see the tremors or spasms start and I cant hide them.

For me...they start out really tiny and I sense them inside and progress to full blown Episodes.

You can also..

.go to: the Dystonia Research Foundation online/ based in the U.S. and get free brochures mailed to you with info to help/ I just found this out and got some last week by mail.Really made me feel better reading them knowing its not in my head.

go to: my previous posts and you can read what else has REALLY REALLY helped me with my Episodes.

Talking to others going through the same things really helps, because Dystonia can be very isolating.

Pets/ any kind.... I have a small older dog..and now have a XL puppy who just turned one years old yesterday..hes learning how to (from my older dog) be there for me when Im bedridden or after an Episode. My dogs are my best friends and truly are there for me 100% and comfort me .My larger pets also become a form of distraction and comfort as well.

Hope I helped and welcome new friend..

[AllHis in reply to Hidden]

I'm checking in with you my friend. I first want to comment that you're "hidden" and I can not see your previous post...

I hope you are well.

There must be multiple things going on. I have to pull one layer off at a time...

It's taken me WAY TOO LONG, DOC AFTER DOC...

So I have this vascular disease. Fibromuscular Dysplasia ( FMD )

Awesome news really. I now know the reason for my pulsatile tinnitus. The artery walls actually bulge and narrow, creating a beading on imaging. Both carotid arteries. Not too bad, and I can avoid a stroke with baby aspirin. Also the carotid arteries explains the ear pain...

There are bruits at my right kidney & both legs. Anyway, FMD and Dystonia are not a good mix. With FMD, YOU CAN NOT HAVE chiropractic care, deep tissue massage or ride a roller coaster. No sudden movements... It's all about stroke prevention. ( now isn't this fun!?!)

I was refered to pain management by a movement specialist who didn't see my dystonia (after waiting 5 months to see a specialist for a clinical trial- I don't have dystonia...?) I got depressed and a little defiant... I asked about dopamine to my Botox neurologist, and much to my surprise dopamine has given me so much movement in my neck!

I honestly need someone to explain internal tremors. These vibrations can be anywhere. My neck, my chest, my legs. They usually happen when I'm trying to relax or have caused me to wake from sleep. Because I hear my pulse, maybe I mistakenly thought it was my heart. Can I be the 1st with pulsatile tremors!?!

My night sweats continue, along with eye "pressure" that just builds and builds through out the day. My hearing continues to fluctuate and drives me crazy at times. I truly wish I had a chiropractor to put things back in place again. If only it could be so easy...Enjoy it for me. OK? I had a really good one a few years back. He was a runner, and now suffering with lupus. You just never know...

[Grvarley]

Do you take requip of like medications. My husband developed dystonia from medications.