Do you use Botox injections for your dystonia?

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Lee__R

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03/06/2019 at 5:02 AM

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Lee__R

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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!

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Dyston!a

04/18/2019 at 5:03 AM

Dyston!a

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

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33 comments posted | 29 in the Treatments for dystonia group

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@tzap467 thank you for responding... is the L-dopa for spasms? or what is the beneficial effects that it is supposed to do and what beneficial effects do you actually feel? Which brand / product do you use also?

Do you use Botox injections for your dystonia? https://www.carenity.us/forum/other-discussions/treatments-for-focal-dystonia/do-you-use-botox-injections-do-you-inject-botulinum-toxin-818 2019-04-18 05:03:25

Dyston!a

04/18/2019 at 5:03 AM

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@jessicamoosekian I agree... it is wearing off and not as effective and pain - little if anything.

Dyston!a

04/18/2019 at 5:04 AM

Dyston!a

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

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@jessicamoosekian do you use anything for pain and the spasms now that you are not following botox injections?

jessicamoosekian

05/31/2019 at 5:22 AM

jessicamoosekian

Last activity on 02/04/2025 at 9:54 AM

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@Dyston!a

I switch between benzodiazepines Ativan, Valium, Xanax and klonapin as I very quickly get tolerant to meds. Soma as my regular go to muscle relaxant although I do try out different varieties occasionally this seems to be more helpful than others when it works and unfortunately after over twenty years of dealing with pain I have recently had to give in and go the opioid route which still has minimal effect and at increasing doses.

Luckily for me I don’t seem to have a mentaly addictive personality and really don’t experience a “high” unlike the weak junkies who make legitimate pain patients lives more difficult. If I need a mental break I vape a small amount of medical marijuana and that seems to put my mindset as it should be as in it could always be worse sooooo!

jessicamoosekian

05/31/2019 at 5:36 AM

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I have had to come to the realization that I will never be pain free and have probably never been so I do what I can and accept that this is my life.

Pain, insomnia, inability to swallow at times which has led to extreme weight loss but great muscle tone, twitching, breathing hitches , inability to concentrate and stay focused and quite frankly being a bitch sometimes to the people who love me the most.

The one thing I can say is that I like me, for the most part regardless of I’m sure some people’s opinions and if more people could say the same we would all be better off

Dyston!a

07/21/2019 at 4:07 AM

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@jessicamoosekian‍ have you ever though of or tried CBD or cannabis?

Awatchman

07/22/2019 at 3:46 PM

Awatchman

Last activity on 03/26/2020 at 5:40 PM

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I have. Still experimenring with different ratios and tinctures.

Lee__R

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07/28/2019 at 8:23 PM

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Lee__R

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1,337 comments posted | 20 in the Treatments for dystonia group

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@Awatchman‍ how have the botox injections been working since you have begun receiving them? Are you still having them? Or you using medical marijuana in addition? Look forward to hearing an update from you.

Awatchman

07/28/2019 at 8:28 PM

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The first time I had Botox injections was about 3 years ago. They did it twice at the VA but was not EMG guided. I'm scheduled for tomorrow for the EMG guided. The medical marijuana is on hold because it was affecting my short-term memory. So I will update on the Botox injections after a period of time to let everybody know how they worked. Thank you

russode

09/23/2019 at 6:58 PM

russode

Last activity on 03/30/2024 at 12:06 AM

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I just finished my second round of botox injections for my focal dystonia I also have tremors. The first round I was in so much pain before I got the shots I was in tears did not know how I was going to work with the pain. It took 3 1/2 weeks and the pain was 98% gone then about a week or 2 before u can get your next round I started having intermittent pain but nothing horrible. I went in got my second round and two to 3 weeks after I was really bad with pain couldn't sleep or anything but I'm now at work 3 1/2 again and it is really good. It's such a relief to not have that pain or the tremors but I'm scared what the botox will do over long term use and wondering if it will eventually not help. I dont know what I would do if nothing helped .

Do you use Botox injections for your dystonia?

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