Posted by: chaanz ®
05/01/2008, 16:52:10
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Hi, Lillygirl - Most of us here have tried one form or another of tranquilizers/anxiolytics or another. Certainly none of them are a cure. For some folks, it may relax them enough to make speaking less strained. The concensus is though, that for some relief from frustration of SD, botox is your best bet at this point in time. If the valium you take doesn't affect you at all, I would suggest that the dose is negligible. I took valium for a while but my boss thought I was totally spaced out, so I just quit taking it. Whatever you decide upon, I wish you the best. We're here for you.
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Posted by: mdubovick ®
05/01/2008, 18:57:52
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I've heard of people with SD taking a wide range of prescription drugs but Valium was not on the list. Unfortunately most people that do get some good results report that it does not last. Sorry.
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Posted by: Catherine1011 ®
05/02/2008, 07:13:04
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Hi, I take Ativan as needed for anxiety which isn't very often but it does nothing for my SD. It can be a habit forming drug in that you will need more over time to get the same results and it has to be weaned off slowly. You might ask your doctor about an anitspasmodic instead.
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Posted by: ellie ®
05/02/2008, 08:45:20
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Catherine, I also take Ativan. May I ask how long you have been taking it and have you tried to stop? Only recently have I heard about awful withdrawal symptoms. The website posted here on "benzo" use/abuse was quite informative. It clearly does not make my voice better, but having less anxiety about it is a positive.
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Posted by: Catherine1011 ®
05/05/2008, 06:31:37
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ellie, I've never needed to try and withdraw because I only use it a couple times a month so I'm not dependent on it. However, I have had to withdraw from other drugs and I did it by cutting the first pill in half and not taking that half for five days, then stopping one whole pill for five days. Continue cutting the dose in this way and you shouldn't have too many problems. Of course it would be best to check with your doctor but that worked for me.
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Posted by: krissie ®
05/03/2008, 17:05:46
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Hi I tried valium it did nothing to improve my voice and in fact I would say it made me feel very agitated. Ativan I did find helped as it relaxes the respiratory muscles but if I take it for more than a week I start to feel really druged up and longer periods you do get nasty withdrawal symptoms (I did). As a med to take prn (if you need to talk for long periods sometimes) it does help. It is on the drugs used for dystonia list. Hope this helps. krissie
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Posted by: lillygirl72 ®
05/04/2008, 08:55:07
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Thanks Krissie, so the name of it is prn? Do you take it on an as needed basis? And what's your dosage? I haven't really been on any meds for a few years, because nothing I've tried in the past helped(including artane which I saw mentioned in some of the other replies). I have just been "dealing with it" because none of my symptoms are painful. One thing I am stating to realize, is that I probobly need to give up or at least cut down on my caffine intake, which for me will probobly be harder than an addict giving up heroin. Anyway, thanks so much for your input, Sheila.
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Posted by: hoarse whisperer ®
05/04/2008, 16:25:50
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I think what Krissie is saying is that it's okay to take Ativan if you only take it occasionally, "like when you need to talk for long periods sometimes" but that if you take it all the time, it can cause nasty withdrawal symptoms when you try to get off of it. "Pro re nata" or "PRN" is a medical term for "as the situation arises" and used by doctors on prescriptions to mean "take as needed". Withdrawal symptoms from benzodiazepines is supposed to be the worst of all drugs (harder than heroin and other opiates) and can actually cause seizures and death, so withdrawal from those type of drugs must be slowly tapered. As long as the dosage hasn't been increased a lot because of tolerance, Valium is supposed to be one of the easier ones to get off of and Klonopin and Xanax are supposed to some of the hardest. I also gave up all caffeine and it does help with the spasms. I only drank one cup of coffee in the morning, but I used to drink iced tea all day long. Now, I drink decaffeinated coffee and tea. A friend of mine was hooked on caffeine, like 1-2 pots every morning. To cut down, she started substituting a little of the regular coffee with decaffeinated coffee and then kept adjusting the recipe until it was all decaffeinated. Starbucks and other places will also give you half regular and half decaf while you're "adjusting" your caffeine. If you search in the archives, you'll find all sorts of good posts about medications and the different ones that have helped some people. The most common element is that what works for one person usually doesn't work for others and if you do find something that works, it usually quits working over time. It's one of the things that makes SD so frustrating. Good luck! Lori
AB/SD and VCD - since 2003
Dallas
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Posted by: krissie ®
05/05/2008, 14:19:54
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Hi, thanks Lori thats exactly what I was trying to say.
I have tried artane and baclofen as well as my SD is the respiratory type and had awful side effects with those.
Botox I am told is not an option for me.
It is trial and error with these drugs, its a matter of what suits and works for the individual. So good luck to anyone who is on this road and let us all know if something does help. Krissie
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Posted by: ellie ®
05/05/2008, 17:30:32
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Krissie, I am very interested in the term you used.."respiratory SD". I have such a lack of air and do not have asthma or COPD. I've never heard anyone describe it this way and am curious if there is indeed a respiratory SD. Anything you might add will be most appreciated.
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Posted by: hoarse whisperer ®
05/05/2008, 22:36:17
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I have both ABSD and Vocal Chord Dysfunction (VCD). The SD affects mostly my voice, while the VCD affects mostly my breathing. Many people with vocal cord dysfunction (VCD), also known as paradoxical vocal cord motion (PVCM), are incorrectly diagnosed with asthma. VCD causes wheezing, breathing problems, and mimics many of the symptoms of asthma. I was diagnosed with asthma by an ENT unfamiliar with vocal disorders and prescribed therapy with bronchodilators, oxygen, and corticosteroids, which were completely ineffective. I was later correctly diagnosed with VCD by my Speech Language Pathologist/Therapist and Primary Care Physician. The easiest way to describe it is that it feels like you can’t breathe or get in enough air. The symptoms are the result of an abnormal closing of the vocal cords rather than inflammation of the airways, which causes asthma. It's always there, but sometimes it gets worse. It’s an awful feeling. The best thing for me to do is try to relax and breathe in through my nose. It makes sense that VCD would be seen in patients who suffer from Spasmodic Dysphonia – both abductor and adductor, as all the same neurological factors and muscles are involved. Like with SD, many different treatments options are used to help those with VCD. Most VCD cases are seen in conjunction with other medical issues. The various causes can include: upper respiratory infections, cortical injury, brainstem compression, conversion disorder, brainstem abnormalities, neurological disorders, cystic fibrosis, stroke, ALS, encephalopathy, GERD, and irritant or chemical exposure. Irritants such as ammonia, chlorine, cleaning chemicals, organic solvents, flux flames, and smoke have been linked to the onset of VCD. There is a lot of information on the Internet, especially research work performed by the National Jewish Center for Immunology and Respiratory Medicine and also the University of Texas Medical Branch. Here are a couple of links. http://www.nationaljewish.org/disease-info/diseases/vcd/about.aspx http://www.utmb.edu/otoref/Grnds/Vocal-Cord-2001-07/VCD-2.htm I hope this helps. Lori
ABSD and VCD since 2003
Dallas, Texas
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Posted by: krissie ®
05/07/2008, 03:42:36
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Hi Ellie, there is a strong diaphragmatic spasm along with my vocal area issues. I have no airflow at all when I am talking.
I use my stomach muscles to force voice out, this is not ideal as food is forced back up. My oesphagus is also affected with spasms and food gets held up. My bowels muscles also work backwards with strong spasm or paradoxical movement. Anything I try to do that needs exact diaphragm co-ordination goes haywire. My rib cage feels like its has been kicked all the time. ENT exmainations over the years have shown marked epiglottic tension, twitchings or paradoxical movement and on occassion my "false cords" close over the larynx also.
Diaphgram tests have produced some very odd results all abnormal but the diaphgram itself is not weak, or it wasnt at the time I have now developed a sliding hernia in this area and my cervical spine is also suffering with all the straining and discs that were buldging are now herniated. This is causing other problems.
Dr Andrew Blitzer has documented this type of SD as a rare variant. In the main my problems are task specific although my breathing can be very jerky at times.
Talking for long periods against all these issues is exhausting but also causes other problems due to a change in blood gases through literally not breathing. Although my oxygen levels are usually ok (another issue reported on by Dr Norma Braun MD who has written a very good article on this subject). There was a toxic onset to my D which started nearly 10 years ago now. Hope this helps. Krissie
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Posted by: ellie ®
05/07/2008, 09:06:18
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Thank you Catherine and Krissie for personal answers. This board has become such a help to me. Reading others' problems and histories can help us all in the struggle to cope and understand the odd variations to this condition. I can think of several doctors who would benefit from taking the time to read all the valuable, first-hand information posted here.
I could tolerate the difficulty in speaking much better if I could breath easily. More investigation with "specialists" is a must for me.
Peace.
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Posted by: Catherine1011 ®
05/08/2008, 07:32:53
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You're welcome, ellie!Oh my gosh, I had awful symptoms from Artane also and interesting to read about Klonopin. I take it at night for anxiety and quit cold turkey a couple years back. I just wasn't thinking when I did it. I couldn't figure out why my anxiety shot through the roof! Then it dawned on me but I still continued to work and got through it. I eventually went back on it but I do take a small dose.
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