Botox side effects...what was your experience?
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Posted by: Autumn ®

10/25/2002, 20:59:08

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Hi! I'm a 26 year old woman diagnosed with SD this summer. I've had the problem for over 9 years but, until this year, assumed that it was some how a psychological problem. I received my first Botox injections 10 days ago. I still sound like the "Godfather." I was under the assumption that this side effect would pass in just a few days. I am very interested in learning how long you all have this effect after your injections. Also, I am interested in learning why some of you opt against the injections when they seem to be so effective for so many people.

I love this bulletin board...it's so very REFRESHING to feel supported by people with the exact same intrusive problem. It has so many residual effects in so many different aspects of my life...it's awesome that you all have created this. My family isn't very knowledgable of this problem, much less sympathetic to my personal experience with it. I'm very glad that this outlet exists.

Thank you in advance for your responses!







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Re: Botox side effects...what was your experience?
Re: Botox side effects...what was your experience? -- Autumn Top of Thread Archive
Posted by: Renee Urban ®

10/27/2002, 16:45:02

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The "godfather" like voice varies from person to person, but I think the average length of stay is a couple of weeks to a couple of months. Usually, the longer this voice lasts, the longer your "normal" voice will last. I prefer this voice to the spasms, but everyone is different.



Renee Urban ADSD/ Austin, TEXAS







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Re: Botox side effects...what was your experience?
Re: Botox side effects...what was your experience? -- Autumn Top of Thread Archive
Posted by: Jacqui Gross ®

10/27/2002, 21:34:27

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Everyones experience varies but for me the period of breathiness lasts between 2-4 weeks, gradually improving every week. I'm usually okay unless I have to project my voice. The first 2 weeks are the hardest, by the 4th week my voice is back to normal and it usually lasts 4-5 months and I've been able to extend it with neurontin and accupuncture. Everyones experience with botox is different, but the ones that don't use it, stop using it because they don't get very good results or their good voice doesn't last very long. Good luck with your shot results, sometimes it takes several different tries to figure out what works best for you.






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Re: Botox side effects...what was your experience?
Re: Botox side effects...what was your experience? -- Autumn Top of Thread Archive
Posted by: Linda S. Adamson ®

10/28/2002, 06:20:45

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My AB experience won't be relevant to you in regard to how long it takes to get to the "good voice" phase after Botox. I just wanted to say how much my heart goes out to you in having begun experiencing SD at so early an age and in having a family that has so far not been supportive. Have you found a support group yet? Do you have the option of attending a patient symposium? (There's the big Dystonia conf. in Miami in Nov. and the SD symposium in DC next March.) From personal experience, I can assure you that both of these ways to connect in person with those going down the same road is a godsend.

Glad you found your way to the BBd.

all my very best,

Linda Adamson

AB Annapolis MD






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Re: Botox side effects...what was your experience?
Re: Botox side effects...what was your experience? -- Autumn Top of Thread Archive
Posted by: Jenni G. ®

10/28/2002, 17:37:33

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Hi Autumn,

I, too, was recently diagnosed with SD and given my first botox treatment. I am 28 years old and am an elementary teacher. Although I was out of the classroom for over 5 weeks at the beginning of the school year when my symptoms progressed very quickly, the botox treatment I received has allowed my to return to teaching and has truly been a blessing.

I experienced the same husky "godfather" voice that you were complaining of, but was absolutely amazed at how easy it was to talk for the first time in a long time. I actually preferred that voice to the strained, choked voice I had prior to treatment because it felt so effortless to talk.

I started to gain some volume back about a week and a half after my treatment. After a sentence or two, however, the good volume would fade back to the husky voice. It went on like this for another week and a half or so, getting a little stronger each day until I had good volume and a voice that I could project in the classroom about 3 and a half weeks after my treatment.

My botox treatment allowed me to return to my job and restored a lot of confidence which I had lost prior to treatment. The good voice was somewhat short lived, as I started to experience straining immediately when my volume started to return, but I am thankful for these few weeks that I've had with this "improved" voice.

Your volume should start to come back gradually, and then I'm sure you will find that you are happy with the results. For us beginners, it will take a while to get the dosage just right for optimum effectiveness. Hang in there!

Jenni G., AdSd, Indianapolis







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