Back

Patients Dystonia

Do you use Botox injections for your dystonia?

375 views
5 times supported
32 comments

Lee__R

Community manager

03/06/2019 at 5:02 AM

Good advisor

Lee__R

Community manager

Last activity on 04/03/2020 at 5:04 PM

Joined in 2018

1,338 comments posted | 20 in the Dystonia Forum

2 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend
Top chef

View profileView Add a friendAdd Write

Hello members,

Botulinum toxin injections are one of the major treatments for focal dystonia.

Are you aware of this treatment? Have you had, or are your currently having, this treatment? If so, how often?

Do you find these injections effective and beneficial? Painful?

Let's all discuss this treatment method together, share experiences/opinions, ask questions, and give advice!

All comments

Go to the last comment

Lee__R

Community manager

03/08/2019 at 2:56 AM

Good advisor

Lee__R

Community manager

Last activity on 04/03/2020 at 5:04 PM

Joined in 2018

1,338 comments posted | 20 in the Dystonia Forum

2 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend
Top chef

View profileView Add a friendAdd Write

Hello members, does anyone have any experience/opinions/advice with Botox injections for focal dystonia?

@Janine‍ @dyston

@Dyston!a‍ @barneydl‍ @2skatermom‍ @donhop‍ @Nicholson13‍ @Pierre35_US‍ @LiseRado‍ @Ophelia0‍ @epain01‍ @Testlamine‍ @Stacie7263‍ @izisjewels‍ @Tussie56‍ @Philly‍ @Lamine‍ @Avives‍ @emilie1‍ @creechr‍ @BeckyS‍ @Anthony75002_US‍ @urll56‍ @gladys916‍ @Lamine7‍ @Tamiam‍ @Lamine4‍ @sujubala18‍ @Jeancarenius‍ @GCDavis‍ @Judy747‍ @Syrina‍ @mamawho‍ @Powens‍ @JudyMcVay‍ @tammysue2015‍ @John5021‍

Do you use Botox injections for your dystonia? https://www.carenity.us/forum/dystonia/treatments-for-focal-dystonia/do-you-use-botox-injections-do-you-inject-botulinum-toxin-818 2019-03-08 02:56:59

tzap467

03/09/2019 at 10:27 PM

tzap467

Last activity on 03/28/2019 at 2:46 AM

Joined in 2019

2 comments posted | 2 in the Dystonia Forum

Rewards

Explorer

View profileView Add a friendAdd Write

I've had the Botox injections in the hand and it does work, however, it will ruin your tennis game as it results in no strength in my arm. Will not do again unless I stop playing tennis forever. I have focal dystonia in right hand.

Do you use Botox injections for your dystonia? https://www.carenity.us/forum/dystonia/treatments-for-focal-dystonia/do-you-use-botox-injections-do-you-inject-botulinum-toxin-818 2019-03-09 22:27:41

Dyston!a

03/17/2019 at 10:49 PM

Dyston!a

Last activity on 08/13/2020 at 3:28 PM

Joined in 2019

33 comments posted | 29 in the Dystonia Forum

Rewards

Contributor
Messenger
Explorer

View profileView Add a friendAdd Write

@tzap467‍ how long have you been receiving botox injections? Do you feel after prolong use that the effects you had initially begin to not last as long?

How is playing tennis in your right hand? or you right handed?

Do you use Botox injections for your dystonia? https://www.carenity.us/forum/dystonia/treatments-for-focal-dystonia/do-you-use-botox-injections-do-you-inject-botulinum-toxin-818 2019-03-17 22:49:26

Lee__R

Community manager

03/23/2019 at 1:11 AM

Good advisor

Lee__R

Community manager

Last activity on 04/03/2020 at 5:04 PM

Joined in 2018

1,338 comments posted | 20 in the Dystonia Forum

2 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend
Top chef

View profileView Add a friendAdd Write

Hello members,

I wanted to bring your attention to this discussion. Feel free to join in the discussion, comment, and share your experience and opinions... and start making connections with others diagnosed with focal dystonia.

@sneakysideeye‍ @pupagioia‍ @creechr‍ @BeckyS‍ @Mama_bear77‍ @libbistovall‍ @diego12‍ @veronicarosenq‍ @Powens‍ @JudyMcVay‍ ‍ @Judy747‍ @Chi910‍ @Suzannemm‍ @Katie1223‍ @Mtog04‍ @mamawho‍ @adrien_US‍ @Greenbay‍ @macias‍ @Janine‍ @Josephineo‍

Do you use Botox injections for your dystonia? https://www.carenity.us/forum/dystonia/treatments-for-focal-dystonia/do-you-use-botox-injections-do-you-inject-botulinum-toxin-818 2019-03-23 01:11:25

Slj42

03/23/2019 at 7:03 AM

Slj42

Last activity on 04/17/2020 at 8:29 PM

Joined in 2019

5 comments posted | 3 in the Dystonia Forum

Rewards

Explorer

View profileView Add a friendAdd Write

I'm currently on clonazepam but on the waiting list for botox injections. I have recently been diagnosed with isolated primary cervical dystonia.

See the signature

Sue J

Do you use Botox injections for your dystonia? https://www.carenity.us/forum/dystonia/treatments-for-focal-dystonia/do-you-use-botox-injections-do-you-inject-botulinum-toxin-818 2019-03-23 07:03:35

Unregistered member

03/23/2019 at 4:45 PM

Go to FB and join the discussion group on cervical dystonia support forum. Many thousands of patients who can share their experience and knowledge regarding treatment and self care.

Do you use Botox injections for your dystonia? https://www.carenity.us/forum/dystonia/treatments-for-focal-dystonia/do-you-use-botox-injections-do-you-inject-botulinum-toxin-818 2019-03-23 16:45:44

tzap467

03/23/2019 at 7:19 PM

tzap467

Last activity on 03/28/2019 at 2:46 AM

Joined in 2019

2 comments posted | 2 in the Dystonia Forum

Rewards

Explorer

View profileView Add a friendAdd Write

@Dyston!a

The injections are every six months. I am right handed. It weakens the hand muscles so that the movement of the focal dystonia is lessened by blocking the nerve signals. Along with it I had a carpel tunnel release so not sure if grip strength not being 100% is due to that or the after-effects of the botox injections which were done approximately one year ago. Not planning on taking botox injections from here on.

The medications that was prescribed was Ropinrole (2g). I stopped taking that one year ago as it made me to drowsy and unbalanced. I've been taking L-Dopa herbal twice a day along with Hemp oil and it does as good or actually better than the prescription drug (sorry big Pharma).

Do you use Botox injections for your dystonia? https://www.carenity.us/forum/dystonia/treatments-for-focal-dystonia/do-you-use-botox-injections-do-you-inject-botulinum-toxin-818 2019-03-23 19:19:38

Dearluly

03/25/2019 at 3:17 PM

Dearluly

Last activity on 03/25/2019 at 2:20 PM

Joined in 2019

1 comment posted | 1 in the Dystonia Forum

Rewards

Explorer

View profileView Add a friendAdd Write

I have cervical dystonia in my neck and I had the injections. I'm sorry to say that in my case I don't see much of a difference. But i can only speak for myself.

See the signature

Lourdes

Do you use Botox injections for your dystonia? https://www.carenity.us/forum/dystonia/treatments-for-focal-dystonia/do-you-use-botox-injections-do-you-inject-botulinum-toxin-818 2019-03-25 15:17:24

Slj42

03/25/2019 at 4:13 PM

Slj42

Last activity on 04/17/2020 at 8:29 PM

Joined in 2019

5 comments posted | 3 in the Dystonia Forum

Rewards

Explorer

View profileView Add a friendAdd Write

I'm on the fb group for dystonia I'm finding it very helpful. It's good to be able to share experiences with people who have the same condition as you. Km thinking about acupuncture.

See the signature

Sue J

Do you use Botox injections for your dystonia? https://www.carenity.us/forum/dystonia/treatments-for-focal-dystonia/do-you-use-botox-injections-do-you-inject-botulinum-toxin-818 2019-03-25 16:13:17

jessicamoosekian

04/10/2019 at 9:12 AM

jessicamoosekian

Last activity on 01/10/2024 at 10:26 PM

Joined in 2019

4 comments posted | 3 in the Dystonia Forum

Rewards

Explorer

View profileView Add a friendAdd Write

I have tried Botox injections several times with different doctors for my myoclonic dystonia which is in my trunk and intercostal areas. While it did lessen some of the spasms it has had zero effect on my pain level and I believe has made my pain worse

Do you use Botox injections for your dystonia? https://www.carenity.us/forum/dystonia/treatments-for-focal-dystonia/do-you-use-botox-injections-do-you-inject-botulinum-toxin-818 2019-04-10 09:12:14

Members are also commenting on...

Articles to discover...

07/26/2023 | Testimonial

Cervical Dystonia: “Medical profession thought I was making it all up, I couldn’t go back, so for the next 17 years I just tried to manage on my own!”

10/25/2018 | News

Half Of Women At Risk Of Dementia, Parkinson's, Stroke: Study

09/21/2018 | News

Study: Air Pollution Linked To Higher Risk Of Dementia

12/23/2024 | News

Why you need to work on strengthening your pelvic floor

12/21/2024 | Nutrition

Anti-fatigue foods: How can you boost your energy naturally?

12/19/2024 | Advice

Coping with loneliness and isolation over the holiday season: What can you do about it?

12/09/2024 | News

Understanding the different types of body fat to better manage your health

12/03/2024 | News

Assistive technology: How is it changing lives for people with disabilities?