Spasmodic Dysphonia Bulletin Board

Medications that may help
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Posted by: dfw ®
04/30/2007, 22:53:31


I posted a message on April 3 after discovering that the sleeping aid Ambien helped my voice considerably. Since then, I've received emails from others with abductor who also experienced improvement with Ambien. Has anyone with adductor ever experienced any improvement? My ENT doctor, who is very experienced with SD, said he's heard of this before and that there must be something in these medications that blunt the central nervous system response to vocal cord adduction.

I've tried Valium, which helps the spasms, but doesn't do anything for my voice. I've also tried Xanax, which doesn't help the spasms or my voice and makes me really tired, even more than the sleeping aids.

I always get a really good voice with Ambien -- every time. I also get a good night's sleep, but it doesn't make me overly drowsy or "out of it" at all. I've known others who become really drowsy and disoriented. Today, I didn't have to go anywhere (no driving) and I had lots of phone calls that needed to be made, so I took one Ambien after lunch and made about 15 phone calls (some lengthy) without any major problems with my voice. I got so much accomplished today!

I don't know why or how it works, but I'm extremely grateful for the brief periods of normalcy. Although I had considered it in the past, I will never have major non-reversible surgery because now I know that my vocal chords can work.

Lori
AB/SD - 2003
Texas
4deluca@airmail.net




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Re: Medications that may help
Re: Medications that may help -- dfw Top of thread Archive
Posted by: Renee ®
05/09/2007, 09:04:50


This is very interesting. I would be interested to see what others have to say about this. YOur doctor sounds like he has as observant observation...

Renee ADSD/ Austin, TEXAS




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Re: Medications that may help
Re: Medications that may help -- dfw Top of thread Archive
Posted by: Bob Stein ®
05/22/2007, 07:14:42


It would appear that the use of Ambien is not without risk, has anyone used this drug long term for ABD SD. Is there any problem with addiction in long term use of Ambien. Also interested in results of Clinical Trials that NIH had been conducting on several drugs for treatment of ABD SD . TIA

Related link: FDA Warning

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Re: Medications that may help
Re: Re: Medications that may help -- Bob Stein Top of thread Archive
Posted by: Hoarse Whisperer ®
05/22/2007, 08:33:14


Certainly all medications and even treatments, such as Botox, carry some risk. In order to prevent dependence, I don't take it every day. In the previous thread about this (in April), there was a post from another ABSD patient who had taken Ambien for seven years for severe insomnia, but it didn't help her voice. Everyone reacts differently. I have known people who become really drowsy or disoriented with Ambien, but that doesn't happen with me.

During the recent Dallas support group meeting, I met a patient with mixed SD who participated in the NIH study. He said that Klonopin (clonazepam) worked great for him and allowed him to continue to work. A doctor at the meeting explained that some of these type of medications work for some people and not for others, depending on the neuropathway affected by the SD and by the medication.

Lori
AB/SD - 2003
Texas



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Re: Medications that may help
Re: Re: Medications that may help -- Hoarse Whisperer Top of thread Archive
Posted by: ktblue ®
05/22/2007, 15:54:38


Hi Lori,

I was wondering what risks there are with botox? I thought it was safe because its only in your system for so long and wears off. Anything else I should know?, since I'm going to the Dr tomorrow?

Thanks,
Katie




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Re: Medications that may help
Re: Re: Medications that may help -- ktblue Top of thread Archive
Posted by: Bob Stein ®
05/22/2007, 17:28:27


Katie, as previously mentioned most drugs have possible side effects, even aspirin if one is allergic to it. I think that you lessen the risk with Botox, by going to a very experienced physician.

Related link: Botox Side Effects

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Re: Medications that may help
Re: Re: Medications that may help -- ktblue Top of thread Archive
Posted by: Hoarse Whisperer ®
05/22/2007, 22:54:12


Hi Katie,

I don't think Botox is risky, but like any medicine or medical procedure, there are always some risks. That's why you have to sign all those legal documents. ;-)

By the way, do you have AD or AB?

Good luck tomorrow!

Lori
AB/SD since 2003
Texas




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Re: Medications that may help
Re: Medications that may help -- dfw Top of thread Archive
Posted by: Keith ®
05/22/2007, 15:38:31


Lori:
Have you tried or had any success with botox injections for your AB? I know that not every AB patient benefits from botox, but I've fortunately done real well by getting bilateral injections approximately every 4 months. Just wondering. I've never tried any of the medications being discussed here.

Best,
Keith




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Re: Medications that may help
Re: Re: Medications that may help -- Keith Top of thread Archive
Posted by: Hoarse Whisperer ®
05/22/2007, 23:07:03


Hi Keith,

In 2003, I received a Botox injection of 10 units into my right PCA muscle. It didn't help at all. In 2006, I received gel foam thyroplasty in both vocal chords. This gave me a raspy voice for a few weeks, but not significant improvement. In December 2006, I received another Botox injection of 15 units into my left PCA muscle. This helped my voice some, but more importantly, it almost completely eliminated the severe breathing spasms I was having, which was diagnosed as Vocal Chord Dysfunction (VCD). That improvement alone made the injection worth it for me.

I have an appointment on June 7 to see another ENT here in Dallas who has been administering Botox shots for SD patients. I plan to discuss with her the potential benefits of bilateral injections and determine if that's right for me. What doses were the bilateral injections that worked for you.

Thanks!

Lori
AB/SD since 2003
Texas




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