Posted by: dcollins ®
03/15/2008, 20:11:58
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First of all, Mr. Voiceguy, you are not crazy despite what people might think. There someday will be an explanation why this happens to some people and not others! So far it is only explained by a gene the DYT6 or DYT7 gene that is responsible for Spasmodic Dysphonia. Although it is not understood what triggers the gene into action because there are people with the genes that never develop SD. Something has to trigger the "faulty gene into dystonia action". Some thoughts on this are: Carbon monoxide poisoning, Neurolytics (Conscious sedation meds perhaps), closed head injury, toxins in the environment, divorce, and stress. There are many reasons one could blame for their discomfort but never a true answer or blame. If there is a true reason it is well covered up and laws of time have prevented their discovery. We are forced to deal with the disorder and live the best we can. I have chosen to be empowered by my affliction, yes I was diagnosed with Adductor Spasmodic Dysphonia in 1989 at the early onset age of 26. I have come to learn that adolescent SD would have a gene responsible of the DYT6. Adult onset > age 28 would be DYT7. Get as much education on the subject as possible because believe it or not you will have to educate your physicians. Have you been to the NSDA website to listen to the Adductor clip and ABductor clip of what SD sounds like?
http://www.dysphonia.org Joining a support group also will help you understand how to deal with the many situations you could encounter and I suggest going to the NSDA site and find a support group near you. Just go to the links under events. Good luck, Donna Collins
SE Michigan Support Group Leader
Midwest Regional Coordinator, NSDA
Related link: NSDA website
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Posted by: magistramarla ®
03/17/2008, 00:12:00
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Hey Shakyvoiceguy & Donna,
I've been gradually noticing the voice problems over the last couple of years. At first, I blamed it on having some really bad bouts of bronchitis for three years in a row and continuing to teach with my throat hurting. I just thought that I had done some permanent damage to my vocal chords. When I saw an ENT about another problem - Meniere's syndrome - he also "caught" the SD. He sent me to a buddy of his who specializes in Botox treatments for SD, and it has helped me quite a bit.
Donna, I was very interested in the genetic links that you mentioned. I've been seeing a couple of neurologists, who have diagnosed me with a very rare degenerative genetic disease called Spinocerebellar Ataxia. They have told me that the genetic mistakes that have caused the ataxia have also caused the SD and the Meniere's. I'm guessing that the "faulty gene" theory that you mentioned goes along very well with what the neurologists told me.
Thanks for the info,
Marla
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Posted by: Douglas Whitley MD ®
04/22/2008, 20:27:33
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Have you had genetic testing regarding your spinocerebellar ataxia? The genes have been identified. I carry one of the genes called HLA DQ2.5 . This topic may need to be approached as a separate thread. This gene causes a host of autoimmune diseases one of which is celiac sprue. There are a few documented cases of dystonia patients who had resolution of their dystonia when the sprue was treated with a gluten free diet. Douglas Whitley MD
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Posted by: Douglas Whitley MD ®
04/22/2008, 20:52:48
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For more info go on Yahoo and look under the topic: spinocerebellar ataxia HLA DQ2 . At the national symposium I ran across a disproportionate number of persons who have incidental diseases that suggest they carry this gene especially in the persons with early onset of SD. Douglas Whitley MD
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Posted by: Douglas Whitley MD ®
04/22/2008, 21:44:57
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Another article to look at on Yahoo: spinocerebellar ataxia gluten . The second article that came up was short and good. The tests you would need to check out this possibility of having gluten associated disease are for the genes: HLA DQ2.5 and HLA DQ8 and the associated antibody studies: anti-gliadin IgG Elisa and IgA Elisa, anti-endomesial IgA IFA, and anti-human tissue transglutaminase. If you test positive for this disease a strict gluten free diet will probably arrest or may reverse your disease process.
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Posted by: spasdysian ®
03/15/2008, 23:29:23
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Hi Mr. VoiceGuy, do you have the same symptoms when you're talking to your close family/friends? If you do, I think you can probably rule out your voice is caused by anxiety/nervousness.For me, I have the same symptom even when talking to my wife, my little kids, my parents, my siblings, etc. I don't think there are any reasons I need to nervous about when talking to them.
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Posted by: shakyvoiceguy ®
03/16/2008, 12:46:55
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spasdysian - Yes, I do exhibit the same symptoms when talking to family and close friends. As my SD was developing and I was trying to understand what was going on, I would be having a conversation with my mom or sister and my voice would be srangled or choppy and I'd be having a difficult time in general, but I would keep insisting to them, "I am NOT nervous right now. I don't know why my voice does this." It's a tremendous relief to now know what is going on.
I don't know if anyone else has noticed this, but I have a number of different types of voice days. There are days where my voice is very near perfect (this only happens maybe once a month...more like once every two months). On those days, you just can't shut me up. I want to go out, talk to everyone, talk on the phone...you name it.
Next, I have days where I can work my voice into having a sort of scratchy, laryngitis type quality (maybe two days per week). I'm not sure what triggers this, if it something that I'm doing or if it is something out of my control, but these days are pretty good for me, too. I have very little trouble carrying on cnoversations and don't get stuck or strangled too often. EVERYONE asks, "are you sick? You don't sound good." But I don't care if I don't sound good. Words are coming out of my mouth mostly under my total control...hellyeah.
Of course, the rest of my days are usually my quiet days where I just don't want to talk much to anyone because I have very little control over my voice. I'm hoping to experiment a bit to see if I can't up the number of laryngitis-type days.
I don't know if I came off sounding depressed in my first post, but I'm not and I didn't mean to. I actually have a pretty good relationship with SD especially since I discovered that it's not my fault. Through some sort of jedi mind tricks that I'm able to play on myself, even my really bad voice days are usually still overall pretty good days.
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Posted by: Mary Bifaro ®
03/16/2008, 14:37:50
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Dear "Shakyvoiceguy",Over the 21 years of dealing with SD, I have felt energized by being around other people with SD. This happens at local meetings of my SD support group and at the NSDA annual symposiums. We can all relate to the ups and downs of having SD. There are many useful materials to read about SD. I am very excited about the new book on living with SD which will be coming out shortly. It can be pre-ordered on our website at: www.dysphonia.org. I'm glad that you found our NSDA bulletin board. Good luck to you. Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: spasdysian ®
03/16/2008, 16:35:42
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Hi Mr. VoiceGuy, it's normal for SD patients to have good days and bad days. It's even possible that if you say a same sentence twice, one might be better than the other.As for your "scratchy, laryngitis type quality" days, many SD patients (including myself) have reported having sore throat (either caused by flu or hay fever) makes them sound better. I would guess if you try to smoke a pack of cigarrets in the evening, the next morning you will feel it's easier to speak. For health reasons, I do not recommend this experiment:-) I would also guess if you keep shouting for a long period in the evening, you will sound better the next morning. If I were to guess, I would guess that you might have AD/SD (Adductor Spasmodic Dysphonia).
Modified by Moderator-WB at Mon, Mar 17, 2008, 16:09:45
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Posted by: The Godfather ®
03/17/2008, 21:35:22
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Hey Shakyvoice guy,
I too have very similar voice patterns, and control issues as you. However, my voice is more consistently strangled and strained sounding,(hence the "Godfather" user name) and often here the same question, "are you sick?"
It's a crazy, frustrating, and even depressing condition. To help us this BB is a fantastic place to share thoughts and swap stories. I discovered it over a year now, and can't tell you what a relief it is to know there are others like me.
keep us posted,
Raymond
AD/SD
8 years
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Posted by: kerri ®
04/02/2008, 16:51:12
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Hi my name is Kerri and I am new to this... I am 29 and I was diagnosed about 3 1/2 yrs ago... I went through all the same stuff. Thinking i was nervous having anxiety..I thought it was strange because I have never been a socially uncomfortable person or nervous about speaking in front of people. I noticed even when i would speak to my husband, friends and family. I knew there were something wrong so I started researching voice disorders on the internet.. THe same thing..sd decribed me to a T.. I get the Botox injections like every 4 months and it helps me so much..I don't know what I would do with out it..
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Posted by: dianna ®
03/17/2008, 21:14:02
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hi everybody
I have the same sensation like Mr.VoiceGuy,that i am crazy or that my dysphonia is a ''symptom'' of my anxiety and i need to know if somebody has similar symptoms.So here is my story :All started in July 2006(i was 24 years old).It was a regular day on my work and suddently i couldn't speak (i had a strangled voice).At first i was thinking that i have a laryngitis or a bad cold,but i noticed something very strange.My voice was ''strangled'' just at my work place.In the moment i get out of there every day when i finished the work,my voice get perfectly normal.So i had that bad voice just at my work.It went like this for about 4 months.In this time i was sure i am crazy,because i couldnˇt understand how can my voice be bad just at my work place.After 4 months,it worsed..i couldn't speak at the phone,in my house,at work (i had to leave my job) but it happend a strange thing my voice is almoust perfect every time i go out with my friends (they don't know that i have a voice problem) and every time when i get stressed worsened.When i am with my husband i speak better..but if i go to a doctor or to shop i speak very bad.There are suddent changes in my voice,and if i forget for a moment about my voice problem,my voice is perfect.That's why i think is related with stress or anxiety.I have anxiety from about five years and that year(2006) i had a lot of stress events,it was maybe the worst year in my life,could it be stress related voice problem?
I would appreciate some advices.
Thank you all,
Diana
Romania.
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Posted by: hopefull ®
03/18/2008, 04:54:08
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Hi Diana,
I understand how you feel! My voice first got bad while public speaking. It was OK at other times. Then it started getting bad on the phone, then the supermarket, drive throughs, - the list kept growing! It is worse around some people (usually people who have commented- I am then always aware that they notice!) Yet with some friends I am OK- I figure this is because there is a lot of laughter? With my family and my partner it is still bad at times. The time that it started was very stressful and I think this definately contributed. I thought it was all in my head for years because it was so random, because at times my voice was perfect! I too suffered a lot of anxiety, but most of it started when my voice got bad (and I think because my voice got bad.) I started having panic attacks when the phone rang! I put it down to an 'irrational fear of the phone' and 'social anxiety' Even now I still have caller ID so I can prepare myself to answer the phone. Stress makes it worse for me- I moved to a new city by myself last year for about 10 months and it was worse than ever! You're not alone! I just had my first botox and am still going through the terrible side effects but hoopefully it will help!
Stacey
ADSD since 1998
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Posted by: scaredsilly ®
03/18/2008, 09:42:56
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DianaYour story is very similar to mine. One day I noticed my voice dropping in and out and had a strangled voice when trying to talk on a conference call. I immediately thought it was just nerves and started to test myself and eventually grow extremely frustrated with my inability to "control" my voice. As my anxiety grew so did my voice problems and then it eventually led to mild depression. I sought out a Therapist to deal with the emotional issues but even as my anxiety lessened and the depression faded away with help I still had the voice issues. Finally I was diagnosed with SD and after a great deal of soul searching decided to give Botox a try. I had my first injections last week. Acceptance seems to be the key in limiting the anxiety. I wouuld highly recommend a book called "Radical Acceptance" by Tara Brach. She leads a mediation group her in DC and while the book is not about SD it does address many of the issues that we are struggling with. Best of luck to you and know that you are not alone.
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Posted by: shakyvoiceguy ®
03/18/2008, 12:27:08
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Hello all. Me again. I would agree about the "radical acceptance" notion. I've never read the book, but I've read similar ones. Like I said before, I have a pretty decent relationship with SD and my voice. I know it's often easier said than done, but my best days are when the sound or dysfunctions of my voice don't bother me at all. It's as if I'm ignoring it and it's just like water off of a duck's back. That's not to say that the symptoms go away, but if I am determined to communicate and can ignore the anguished look on my conversation partner's face, then things go better. It truly is all about acceptance.
A couple questions: I think that I saw an estimate that there are about 50,000 diagnosed SD cases. That number might be wrong, but the actual number is likely much larger than whatever the official number b/c there are probably many, like myself, who haven't been offically diagnosed either through lack of health care, embarrassment, not understanding what is going on, etc. Any thoughts on what the REAL number of cases is?
Second, have there been any psychological studies done on who handles SD better, men or women? As a guy myself, I can say that one thing I deal with is the fact or notion that men are supposed to have deep, resonant voices and my voice rarely ventures into that territory any more. For instance, when I watch or listen to George Clooney's delivery of lines in his movies I think, "God, I want that"...the voice, not Clooney himself :-)
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Posted by: Paula B ®
03/18/2008, 15:15:53
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Hi Shakyvoiceguy,Just wanted to welcome you to this group. There are many helpful and understanding people here, that have shared many of the same experiences as you. If you ever have any questions, just ask, I'm sure someone can relate. I suffered with SD symptoms for 8 years before I was diagnosed. I just excepted the voice I had as part of me. I was asked by many if I was sick, and I would politely say, "No, but thanks for your concern." It was interesting to see that you stated that you have one day per month that you sound great, with no syptoms. That is great! I didn't know that could be possible. Take Care, Paula
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Posted by: mt.harrington ®
03/22/2008, 21:10:56
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I was about 13 when SD hit. (I'm 44 now) For a long while I figured my voice was changing and it would resolve itself. I knew that voice change was more typical in males, but I hoped...
After I realized the vocal problems weren't going away, I thought it was my fault because I was so nervous. Who wouldn't be with such an unpredictable voice? Doctors, psychiatrists all confirmed my anxiety problem. Little did (do) they know!
I was confused by this anxiety problem and a voice that did NOT correspond with what I felt inside...which was often times, fine.
I look at my daughter who will be 14 in June. (May she never inherit this curse!) She's popular in school, sings and dances and isn't afraid to talk on the phone, or from a podium! I am so happy for her! Yet I cannot help but jump into a pool of "self-pity"! SD decimated my confidence and self-esteem! It forever changed the direction of my life and how I see myself. Yes, many people can surely make this claim about their problems, too.
I know what you mean about people you know not believing that your voice is a neurological problem! I had hoped that telling them would relieve my anxiety about "failing" to speak correctly, but if they don't accept my SD....oh well.
I am glad that we have each other to talk to. Here I have a voice!
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Posted by: Debbieo ®
04/10/2008, 19:35:31
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Shaky,
We all think we're going crazy. I also always had some level of social anxiety. And like you when in a normal friendly setting, my anxiety levels would rise and my voice would be noticeably different. That was before the onset of any SD symptoms. I'm the kind of person that will pursue any way to make myself healthier or better. So I sought out methods that would work with the symptoms (forget the cause) without taking medication or shots (yuck). However, others have had great success with the shots. Without insurance you could try to get into a research study or you could try other methods that require a lot from the patient versus the doctor. You'll have to research holistic or natural methods and do some speech therapy. Also you need a diagnosis. So good luck and you seem to have everything under control.
Debbie
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