Crooked Twisted Neck Cervical Dystonia Spasmodic Torticollis

[klett69]

dopamine!!!!

and dopamine receptors

[7545245]

I have had spasmatic torticollis for several years. at first I did'nt know what is was and went from dr. to dr. to find a cure. This was back in the 90's before personal computers so I could'nt look it up. My head kept turning to the right and I could'nt stop it. Finally a dr. in Iowa City helped me find the problem and I started to get Botox injections. It helped so much that people did'nt even know I had it!! I was in several experimental programs so I could get them for free. More later.

[superg944]

i found out 5 wks ago i have cervical dystonia. 2 wks ago tomorrow i had botox injections and it hasn't helped a bit. i go back to the Dr. tomorrow and don't know what to expect

[STDystonia]

@superg944 It's really too early to tell if the injections were a success or not. If the doctor wants to give you some booster injections we would advise you not to take them as there can exist the possibility of building up antibodies thru boosters. You don't say if you've had ST for just 5 wks or longer- if for only 5 wks & the Botox doesn't seem to be working it may be because the active muscles haven't settled in yet;too low of a dose;injected in wrong places;lots of reasons.

[superg944]

@STDystonia thank you for answering - it was the end of april this year that my head started turning to right. went to Dr today and got muscle relaxer low dose seems to help till i start trying to do something (like peel potatos). right now I have very mild problem compared to what I have seen here. Dr said maybe the dose was to low wait 3 months.plus maybe I will still see some changes of help.

[basscadet2]

@STDystonia i am 28 and was recently diagnosed with CD. i am lucky enough to live close to chicago (i.e. rush university, world renown for it's work/practice/study/treatment of neurological disorders such as CD) where i can talk to and be treated by doctors that have decades of experience with dystonia. since my reply here is limted by the # number of characters, my emai addy is basscadet2@gmail.com. i would be more than happy to share the expeience AND knowledgr i have gained thus far. :)

[MrHarryhines]

@superg944 i have had dystonia (torticollis) i have had about 10yr i get botox shots in my neck every 60 to 90 days

[STDystonia]

@MrHarryhines We hope your Botox injections aren't any sooner than 90 days apart. If they are, you can build up anti-bodies and immunity, which would not be good. You would then have to try another version of the Botox.

[wdgoldenlady]

I was blessed to find a neuro quickly and I think that is a key factor with this disease. I was also blessed to be diagnosed early. I have a male friend who went misdiagnosed for 2 years.

[henryisagoodboy]

I've had ST for 40 years. As stated, each case is unique. Your best bet is a good neurolgist who can monitor your condition with medication (oral or Botox) or if it was to become drastic, surgery. Although there is currently no cure, help today is available because of awarenwess. For more info on treatment available, google the Dystonia Medical Research Foundation.

[ChicagoFan32]

Are there milder cases than these or does the disorder increase in severity over time?

[STDystonia]

@ChicagoFan32 Correction --Pain can be horrendous as well as pulling and pressure in your head.

[STDystonia]

@ChicagoFan32 This is a tough one. We ask that you call our toll-free # 888-445-4588. Without an explanation of your symptoms, it's hard to give any kind of answer in writing.

[ChicagoFan32]

Are there milder cases of this? Or does the severity increase over time?

[STDystonia]

@ChicagoFan32 All of us are different in that, as with any other illness, there are extreme cases as well as moderate ones. Most of us are right in the middle. Oain can be horrendous as well as pulling and pressure in your head. Fortuneately, many of us get relief from injections of botox. One thing to remember is that when you see the severe cases don't automatically assume you will be like that.

[ChicagoFan32]

@STDystonia I ask because I have been having problems for nearly two years now, but what I have been experiencing is nothing compard to the severity displayed in the video. However It's getting increasingly difficult to deal with, it is so bothersome, I just don't know what to do anymore.

[DaveG303]

@ChicagoFan32 ----The standard answer is 5 years.

[tofumist]

My name is Lynn and i have had ST for 5 years I have had to quit my job in April because of the tremors, pulling, pain, and depression i have been looking for a support group in Colorado I think i am the only one with this disease in the Denver area

[STDystonia]

@tofumist , Support Groups are something of the past and that our association, with all its benefits, chief among them being our newsmagazine, was set up to take over for this lack plus our yearly symposium. Right now we have a special offer of a DVD Physical Therapy tape plus 5 issue over 15 months plus a book on Living Easier with ST plus a drawing for 2 people to win up to $500 to come to our symposium (drawing is 7/15). See part 2...

[STDystonia]

@tofumist --YouTube not allowing me to add Part 2 to here, so added too your "wall."

[STDystonia]

@tofumist PART 2 -- Plus all of our benefits, and our toll-free number 888-445-4588 to call and talk to someone live. A blog area too where everyone shares their coping methods. See our web site at link above by the video. Bets of luck!

[buckeye4l1f3]

Thanks for the info, i really appreciate all the help, you guys where right is was a pulled muscle. THANKS.

[buckeye4l1f3]

About two days ago i was playing basketball and when i jumped for the ball i had a sudden pain in my neck, for the first couple hours i couldn't turn my neck to the left, after a day a could start to turn my neck again but slowly. Then i noticed in the mirror my head was tilted and one shoulder was higher than the other. Is there any advice you can give me.

[STDystonia]

@buckeye4l1f3 This might be something other than torticollis such as wry neck which could disappear in a week or so or possibly you just have a pulled muscle. If it persists see a movement disorder neurologist. He/She would be the one to help you.

[QueenAnime99]

@buckeye4l1f3 Please see a doctor ASAP if you haven't already.

[MartinPerkins727]

Mine is a unique form of ST it goes two ways up and to the side.

[prbv1234]

it took 5 years to be diagnosed i have botox every 3 months it works great. I have been doing it for 3 years . I could not imagine the day when it does not work. My skin is getting really tough though for the needle to go thru so it is starting to hurt more but it is worth every shot.

[prbv1234]

it took 5 years to be diagnosed i have botox every 3 months it works great. I have been doing it for 3 years . I could not imagine the day when it does not work. My skin is getting really tough though for the needle to go thru so it is starting to hurt more but it is worth every shot.

[catsalive1]

I had ST for 20 years and discovered magnesium. I take 750 a day. My torticollis is 90% better. People don't mention ST, but everybody including people at work are asking me if I had a face lift, Ya right! PLEASE EVERYONE WITH ST, TRY MAGNESIUM!!!

[budsjets]

@catsalive1 Has anyone else you know taken this with a positive result? My wife has ST for 3 years now and nothing works. Thx Bud

[STDystonia]

@budsjets - Has your wife tried to switch her meds? Sometimes by doing this, it can help. Also new studies are showing liver inflammation to be connected with Dystonia. Research liver flushes, brain antioxidants, etc. We know the pain she is enduring. Hang in there and think positive!

[fyersprite]

I have Cervical Dystonia. It start about a year ago, sadly I'd never heard of it. I've been to 5 Doctors, have tried many meds, had 1 Botox treatment, and am going for another 3/13/2010. I deal with my life hour by hour, just trying to let my friends, family, and ADD distract me as much as possible. It is truly depressing, even on the rare "good" days. It sucks for anyone to have CD, at least someone else know exactly what we are dealing with. Contact me on Facebook. Hang in there!

[lcdc1223]

I have it took and just found out about atlas orthogonal chiropractic - the move the top vertabrae back into place - check it out! It's the cure for most.

[TheBabbygirl16]

My mom has torticollis for about almost 2 years now. She left a message on the number you posted.

[STDystonia]

Hi TheBabbygirl16, We hope someone got back with her! If you or she has any concerns, please feel free too call or email us. Best of luck to you both!

[lcdc1223]

I have it too and just found out about atlas orthogonal chiropractic - the move the top vertabrae back into place - check it out! It's the cure for most.

[taddeogaddiful]

I have this and have been to 4 different doctors and they just give me pain med and one put me in three months of physical therapy which does absolutely nothing!-- like giving physical therapy to an epilectic! None of the drs will give me a referral to a Neurologist- I am so depressed emabarrased my husband doesn't know why I am too embarrassed to go out of the house-- why are drs' so stupid about this??!! I need help- don't know what to do

[treasurerof2]

Hi, -- just a quick question -- are you on Facebook? If so, there are several great support groups that you can join. I have this too, and it is really a challenge.

[STDystonia]

Yes, we are on FaceBook- user name STDystonia.

[STDystonia]

Yes, we are on FaceBook- as STDystonia.

[STDystonia]

Dear taddeogaddiful, we have tried to contact you, but YouTube had some problems and we were unable to leave a message. We did manage to leave a partial note to you on your Home Page on YouTube. Please call our toll-free number and ask for Howard. Tell him you're the one on YouTube that needs help. See a GOOD Movement Disorder Neurologist. We have a list for all 50 states and some over-seas.

[lcdc1223]

I have it too and just found out about atlas orthogonal chiropractic - they move the top vertabrae back into place - check it out! It's the cure for most.

[danh2os]

Good information. Thanks for showing this.

[saholley]

My name is Shelly Holley. I was diagnosed with Dystonia this past year. I have Miege's, blepharospasm,cervical, and oramdibular dystonia. It sometimes makes communicating impossible and there are times when my eyes clamp shut and stay that way for minutes or days. I have had several "storms" and each episode leaves me exhausted mentally and physically. We tried many medications that don't work and leave me depressed or work miracles but don't last more than a month. Botox has little effect.

[STDystonia]

Hi Shelly,

So sorry to hear about the many facets of your Dystonia.

Your only alternative, if you can afford it and have the insurance to cover, is to undergo the DBS operation. If Botox doesn't work and since you have that many things wrong, we would guess DBS would be your way to go. And if it helps oramandibular and meiges, we're not entirely sure. Only a competent neurologist who specializes in DBS FOR DYSTONIA could tell you that.

[STDystonia]

Shelly, If you have further questions or concerns, please feel free to call our toll-free number. 1-888-445-4588 Best of luck to you.

[ShakeyAmy]

i have generalized dystonia , cervical ,spinal torticollis and essential tremor. my whole rt side is effected and it comes and goes from tiny "twitches" to huge "storms" see big storms on my page. i can handle most of it and avoid triggers but the cervical is the most painful. i chose not to do DBS right now but the baclofen pump to scramble the brain msgs saying move muscles move! it has helped and i take pain meds,muscle relaxers,and now i am going back to botox treatment since cd is worse.

[crosario1030]

My name is Carmen Rosario, I was dignosed with dystonia approximately 3 yrs ago. The experience is terrible I get so many different reactions, muscle spasms, mood changes, severe neck pains, legs pains discomfort on my head very weird - back pains these are some symptoms I feel it goes beyond that, it is terrible to live day by day under these condition, Unless you are going through it, people do not understand. I try to be strong but some days are worse than others,

[wallsacc]

what the hell do they mean most doctors havent heard of it? im in first year medical school and we already covered this.

[treasurerof2]

Hi, glad they are now covering it. But, the first doctor I went to specifically said "I think I know what you have, but I cannot think of the name of it right now", he did send me to a great neuro. Botox helps but it is not a cure.

[fyersprite]

Perhaps it not that they've never heard of it, but more just don't remember. My family Doctor isn't fresh out of school, nor is she specialized in Neurology. I don't blame her for not being able to diagnose my CD. After all, I thought I had pulled a muscle or something, and I'd never ever heard of CD before.

[HeyItsThatGuy1138]

I very recently had an episode of dystonia as the result of an adverse drug reaction. Luckily, once the medication was out of my system, the symptoms disappeared. Nevertheless, the experience will stay with me as the most terrifying hours of my entire life, and my sincerest sympathy goes to those who are forced to endure this condition chronically.

[LONGDISTANERUNNER]

i get this about 3 times a year (noy as bad as yours) could you tell me if iy started out this way for you? i am affraid......i am haveing it right now(mild) what can i do to keep it at a minimal...thanx

[STDystonia]

Dear LONGDISTANERUNNER , Tough one to answer. No one really knows the course of action dystonia takes but, suffice it so say, if she/he has had it for a while it very well may be that that's how it will stay. Now, if the person gets into a lot of stress or goes out of their way to do heavy lifting, etc then it could get worse.

[STDystonia]

Part 2 to

LONGDISTANERUNNER ,

You/we have to stay calm and out of the limelight so to speak. Also depends on what your occupation is such as a computer user or heavy lifting which could exacerbate the symptoms, etc. Hope this helps.

[ronniedobbs101]

If anyone can cure your Cervical Dystonia it's the Neurology department at the Cleveland Clinic. These people are miracle workers.

[krazeediamond]

You're seriously saying they can CURE your Cervical Dystonia? I'm not trying to challenge your statement, it's just that if it's true, well hell, I'll go. ♥

I've been told there's no real cure to CD as yet; however, the treatment options are many.

[bone6966]

3. my case is a muscle on the right side of my neck near my c1 spasms, and pulls my c1 against my brainstem, causing lots of pressure behind my right eye, severe dizziness n pain. head pulls to the right. i have absolutelly no idea how i have kept my sanity, and feel very very sorry for anyone going through the same. the mind trips are worse than the pain by far. as its much worse when i wake. sounds, smells, lights, chewing, getting my heartrate up trigger of my spasms.i'll try the herbs listed

[bone6966]

2. i suffered for many years without a name for it, and only about over a year, they had rem murray's case on the local news, and im like, thats me! all the neurologist n nureosurgeons n movement dysorder docs i went to the last few years never once mentioned it! i can't wait to heal, and go on montel or oprah, and get this spread. many of st louis's top docs misdiagnosed me,put me thru counseling n on paxal, and called me a liar when i said it effects my vision when in spasm.and 20/20 when not

[STDystonia]

Dear bone6966,

Your story is quite common, as many people are mis-diagnosed and mis-understood by doctors. Try to find a movement disorder neurologist in your area. If you can't find one, please call our toll-free number, 1-888-445-4588, as we have lists of them throughout the US.

[kaejm22]

This is a veryh good video and I know first hand how painfull and frustrating it can be. In January I had DBS surgery and I have been to 2 programing apts. in the last week and I am doing great so far. I have Parkinsons and dystonis was breaking me down. I have also started taking some vitamins and drinking a mangosteen juice which also has helped me in sleeping I think. I was down to about 180 lbs. and not eating or sleeping well and now I have gained about 30 lbs back which is great.thnks

[colerain777]

I've had dystonia for a few years now......I take meds and I also get botox every 3 months...in the last year, I don't move hardly at all anymore. It's nice to know that I'm not alone w/ this.

[DefeatADDnow]

I just read that a woman was using 2250 mg/per day of a GABA supplement for spasmodic cervical dystonia and her symptoms went away.

[gasan47]

for how long, where did you read about this

[STDystonia]

Hello gasan47,

We just did a Google search on

GABA Tablets and Dystonia. There are several sites that may help you. We can't vouch for any herbal methods, but if they work for you, that's great! It's all about comfort. Thanks for writing.

[Minty174]

Hello ay have had Dystonia toticollis many years, and ay have used botox, with not so mutch efext, sometimes not at all.

But now ay tried the medidcin "Rivotril" 2 mg and after the first day ay was compleately healed, and it fantastic! ay have a compleately new life now, ay want to inform you all, try it! maybe you get your life back.

27 year old boy from Norway

[STDystonia]

Dear Minty174,

Klonopin - generic clonazepam, sold outside the United States is known as Rivotril. It is a medication frequently prescribed for dystonia. We're glad it has helped you. Thanks for writing.

[Minty174]

i dont use rivotril longer because it just stopped working... and i think now in these days, it was a bad medicine..

I regret what i was writing earlier herre..

I now use trimonil retard 600mg, and i have used it for many months now, and that was working for me.. of course it dint work at first day.. but im geting better and better..

and almost all my symptoms and dystonia are now gone..

and second the trimonil isnt a bad medicine like rivotril, you dont feel anything...

[STDystonia]

Dear Minty174,

Thanks for writing again. We're glad to hear you've found a prescription that works for you. Trimonil Retard is a drug commonly used for Epilepsy. It's also known as Carbamazepine here in the U.S.A.

[ralser]

I'm 47 years old and like Minty174 I tried Rivotril 2mg and I became cured! Thans God and my friend Minty.

[junglelord]

Rolfing may correct this. I encourage all to see a Rolfer.

[STDystonia]

Hello

junglelord , Several people with this disorder have tried alternative methods such as rolfing. The downside is that the effects of massage therapy do not last for more than 24 hours on tension spots like the shoulders and neck. Thank you for writing, however. It may help some people.

[orangedrum]

I only have focal dystonia, but I always feel so lucky after watching these videos. I pray for you guys all the time and would just like you to know... you are my inspiration.

[STDystonia]

Dear orangedrum,

Thank you so much for your uplifting words. We're sure you're going to brighten the days for all people with Dystonia!

[Biggie1231]

Hey i just wanted to say thank you for makeing this My girl freind has Dystonia  and she had the surgery for the Brain shes doing Good

[STDystonia]

Dear Biggie1231, Thanks for sharing your girlfriend's story. DBS has been very successful for Dystonia. We wish you both the best of luck.

[Biggie1231]

thanks Godbless

[sanibelrunner]

I tink I have this please help! Thought I had P.D. because Levadopa works doctors tell me I am wrong and should see Psychiatrist. I now I am right and they are wrong. I have this throughout my body. Please Contact me. Thanks.

[STDystonia]

Hi sanibelrunner , Our association is dedicated to people with spasmodic torticollis, a form of dystonia of the neck. Yours sounds like it's in your whole body. I find it hard without seeing you to say what exactly you have, but like me, many years ago, a diagnosis is first and foremost and then you've got something to work with. You can be helped with proper medical care but, please remember, there aren't that many good doctors available for us.

[STDystonia]

Dear sonofahoecracker ,

We're happy to hear that you're managing quite well with your dystonia. You're one of the lucky ones. Thank you for writing.

[sonofahoecracker]

i got dystonia over in afghanistan and had it serious for about 7 months, had 3 botox treatments, its been almost 3 years and i havent had botox or on any meds, i still have it, it maily bothers me at night but i have full control of my neck now. i pray for all those who experience this hell and hope you find relief!!

[STDystonia]

Dear kjvmom,

There is a surgery called selective denervation. Also, DBS (brain pacemaker). We hope your mother calls us. We can help! Blessings to you....

ST Dystonia Staff

[kjvmom]

She is doing the Botox. And that helps some. I don't what else will help. Thanks for the reply. I will pass on the phone # to her. God Bless.

[kjvmom]

My Mom has this disorder. It has completely changed her life. Anyone who says its all in your mind. Is crazy themselves.May the Lord not grant this to you. I hate seeing my Mom like this . She is also sick with COPD. She is just always sick. And doesn't do things she use too. I miss her. And I know she is miserable/ I'm sorry for anyone who has this. I pray that there will be a cure one day.

[STDystonia]

Dear kjvmom,

Is anything being done for her? There are other alternatives to Botox. Please feel free to call our toll-free number for help. 1-888-445-4588.

[STDystonia]

Dear rewajessup07,

Botox is made by Allergan. They have a Patient Assistance Program for people who can't afford it or don't have insurance. Try contacting:

1-800-530-6680 for further info. Please let us know if you received help.

[STDystonia]

Botox is made by Allergan. They have a patient assistance program for people who can't afford it or don't have insurance. Try contacting:

1-800-530-6680 for further info. Please let us know if you received help.

[NeneLindo13]

this is very serious folks pass it on

[writersinger45]

I have Cervical Dystonia and know what these people are going through. Social Security turned me down - though this is a RARE disorder. I have had this since 2002.

[STDystonia]

Blessings to you as we all continue to strive for a better life. We have info that can help you with your disability process. Please call our toll-free number: 1-888-445-4588. If there's anyway we can be of help, please don't hesitate to call us or email. Thank you for writing & we hope to hear from you again.

ST Dystonia Staff

[rewajessup07]

Yes I have no health insurance I have been taking over the counter Pain Meds that no longer work my neck has been twisted with Cervical Dystonia for about a Year This seemes to be the worst thing!!!!! Will anyone help pay for treatment and a Botox Shot and Treatment I am 35 years young and the pain is Harsh?*

[STDystonia]

Botox is made by Allergan. They have a patient assistance program for people who can't afford it or don't have insurance. Try contacting:

1-800-530-6680 for further info. Please let us know if you received help.

[STDystonia]

Botox is made by Allergan. They have a patient assistance program for people who can't afford it or don't have insurance. Try contacting: 

1-800-530-6680 for further info. Please let us know if you received help.