Posted by: David Barton ®
12/15/2003, 20:07:47
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This is what the NSDA website says about the cause of SD:######################################################3 Cause
In most cases the cause of spasmodic dysphonia is unknown. The general medical consensus is that SD is a central nervous system disorder and a focal form of dystonia. Dystonia disorders are thought to be due to abnormal functioning in the area of the brain called the basal ganglia. The basal ganglia are structures situated deep in the brain. Onset is usually gradual with no obvious explanation. Researchers are investigating possible mechanisms involved in the triggering of SD including familial factors, inflammation, and/or injury that may lead to central nervous system changes in laryngeal motor control. SD may co-occur with other dystonias such as blepharospasm, oromandibular dystonia, or cervical dystonia. ******************************************************* The NIH website is similar. It does mention virus and trauma, but my interpretation of their comments is that these are 'triggers' of an underlying genetic disposition to SD, not direct causes. The general consensus of most medical experts is that the 'cause' is unknown. In my own case I have no idea what caused it. I am more interested, in my own case, in making the adjustments needed to live with SD - although I'd like to think that medical research will identify the cause so that others don't have to deal with SD in the future. In my opinion the most useful area to explore for a cause is in genetics. David Barton (AD/SD, Auckland, New Zealand)
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Posted by: vici ®
12/15/2003, 20:48:55
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Donna, In my case, I had repeated sinus infections in the year prior to getting full-blown SD. I also had a case of shingles that year and lots of stress at work. However, I have two second cousins with SD and my mom has symptoms of SD. This would lead me to the conclusion that the tendency toward SD is genetic, but the other factors may have triggered it at that specific time.Vici ABSD/Illinois
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Posted by: Lambert66 ®
12/15/2003, 21:39:41
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It was a given that the onset was due to a trigger and the genetic code was present in individuals with SD. Not all people with the genetic code have SD. Perhaps we should have asked, "What opinions do we have on the trigger of Spasmodic Dysphonia?"My family has no background of SD or Torticollus. However, my Father had tremors or shakes, unlike early stages of Parkinsons. We thought it was from drinking, although he served in WWII in Europe (Cruechvelt Jacob?). Again, I agree it has a genetic link. I believe what Triggered SD in my case was a blow to the head. Thank you for your insight Dave and Vici. Dave brings up an interesting topic my neurologist asked recently. Usually SD occurs with more than one type of Dystonia. Such as SD with Torticolus. I have noticed although not willingly that my neck does jerk as in Torticolus, occassionally.
Donna L.
Michigan
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Posted by: Micki ®
12/16/2003, 11:11:00
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I am curious as to how many people with SD are sugar sensitive? That is, have an abnormal carbohydrate metabolism that causes your blood sugar to spike and crash when you eat sugar, white flour, or simple carbohydrates? It also has a lot of other effects on the adrenals and other systems. My whole family is sugar sensitive, and I believe the onset of my voice problem was caused by drinking lots of flavored water with nutrasweet. Dr. Kathleen DesMaisons, PhD in Addictive Nutritions, in "Potatoes Not Prozac", says this: "Aspartame is made from phenylalananine, which is an amino acid. High does of any single amino acid can throw off the balance of aminos in your brain and body. Since phenylalanine is a precursor to dopamine and norepinephrine, which are both stimulating neurotransmitters, high usage of NutraSweet can create an "upper"-like effect...I encourage my clients to stay away from products with aspartame both for their addictive potential and their reinforcement of the dependence on sweet taste." In personal correspondence with Dr. DesMaisons yesterday, she says she has had clients who developed voice problems as a result of using NutraSweet (aspartame)and that they got better when they corrected their diet. I believe that heavy use of aspartame brought on my voice problems. Would it have affected me if I were not already sugar sensitive? Who knows. I think Dr. DesMaisons' opinion is worthy of note on this bulletin board.
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Posted by: BobGenesis ®
12/16/2003, 12:23:58
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I have had ABD SD most of my life, at age 6 i had a cerebral Concussion (auto accident), i am not sure if this may have been a contributing cause. No one in my family has SD to my knowledge.
Modified by BobGenesis at Tue, Dec 16, 2003, 12:25:10
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Posted by: John Mooney ®
12/16/2003, 15:17:20
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I'm new to this bb having only been diagnosed a few months ago. However, I believe that my sd followed a long period (over 6 months) of having a severe cough. I have listened to recordings of my speaking on home videos and couldnt find evidence of it prior to that cough, and my voice afterward never seemed quite right. While it wasn't necessarily sd, it always sounded hoarse and I was always (unsuccessfully) clearing my vocal cords. The involuntary aspect of coughing and the mechanism that slams the vocal chords together seems to go hand in hand with ad/sd.
Almost 20 years ago, I suffered a cerebral contusion and concussion in an auto accident. I didn't have any lasting effects from this that i'm aware of, and I dont believe that it's the source of the sd.
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Posted by: Lynn Brailsford ®
12/16/2003, 20:08:35
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In my humble opinion, the cause is a genetic predispostion that can be triggered by a variety of events. In my case, the trigger was an upper respiratory infection after which my voice, as I knew it, never returned.Lynn AD/SD Teaneck, NJ
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Posted by: Lynne Martinez ®
12/16/2003, 20:14:08
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Hi Donna,Thanks for this question. For me, this one is easy. I know it's confusing for alot of us patients so I'm one of the lucky ones in not having to search for the root cause of my own case. Looking on the bright side. My whole family (maternal-side) is full of things like Essential Tremor and Parkinson's. My mother doesn't have these two things but she's been an incessant "hummer" (very weird) her entire life. Appears to be a clear neurological "symptom." Re genetics, our family was also fortunate that all the females in the family have always been intrigued by family history and genealogy, thus we spent alot of time for many years capturing oral histories of the older relatives and the "tremor" theme continues to arise consistently, even back four generations. If over half of someone's line (maternal in my case) has tremors of some sort, it's a decent bet that the underlying (root) cause for my SD is genetics. We haven't found another SD'er in the family yet, but that really doesn't matter since SD (and Dystonia) itself is just a symptom (or set of symptoms) of a brain disorder. It's the larger class of "Movement Disorders" and neurology that fascinates me. The other part is triggers. I think I know what precipitated (triggered) my SD, based solely on timing, but it could have been other things too. I'm not that interested in the particular trigger, in my case. Knowing the cause is enough. Since the NSDA is gathering research on this particular topic, hopefully people will contribute their theories and stories re their own cases to: nsda.dr.layhunches@sbcglobal.net. In addition, we talk about this subject at every SD symposium and the Dallas SD Symposium on March 20, 2004 should be no exception. It's always interesting to share theories in person so anyone who is interested in exploring the subject further may find alot of good information there. This is my very favorite subject (in regard to SD) so thanks for bringing it up. --Lynne (AD/SD; Northern California)
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Posted by: PJSmith ®
12/18/2003, 09:49:37
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For me I suppose its my "life" curiosity of why I have AB/SD. No one in my family was known to have had it. Not even a Parkinson's case. Of course, we don't know about the folks that are no longer alive. I came up with two theories for myself. First, injuries to my head, a result of falling off horses over the years. And second, a very interesting theory which I ran by my first ENT. That is: there is a "tribe" of Jewish people, known as the Askanazis(sp) in Russia. These people , from my research and readings, were full of dystonia. This goes back many many years. My father's family was from Lithuania which borders Russia. History tells us that there was alot of border crossings with these peoples. I asked my Dad's sister about our lineage many years ago before my SD surfaced. She just said it was hard to say considering the World Wars and the running back and forth between the countries. Anyway, I don't know if genetics is the absolute answer but if I were a researcher, that would be my leaning. Of course, falling on your head as a steady diet isn't very good either!Pat in Phoenix(AB/SD since 1997)
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Posted by: Mel Cargle ®
12/18/2003, 16:12:17
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After visiting this board occasionally over the past year, I finally registered in order to reply to this post. I acquired SD in 1985 and went three years before I learned there was a name for it. Yes, it turned my life upside down (I was in the broadcast profession) but after a few years of depression/lying around, and thanks to the patience of a supportive wife and family, I finally got around to living the rest of my life. I won’t tell you it was easy, but from my current perspective, it really wasn’t all that hard either. I managed the best I could, and without really noting it my voice seemed to get better. It eventually improved enough that by the mid-nineties, attending my first local SD support group meeting at Emory University; I was asked by nearly everyone how long I’d been on Botox. Trouble was, I’d never had the injections, and still haven’t. It isn’t always smooth sailing. I still have a hard time making myself understood in emotional situations or when I’m in a loud environment. And there are two things that trigger the SD symptoms 100% of the time; ordering at a drive-thru window, and talking into a microphone, but I don’t go out of my way to avoid either. A majority of my workday is spent on the phone, and many people I know both in business and socially don’t have a clue I have a speech disorder. Long ago, I was lucky to discover that the more I dwelled on my voice, the more I dwelled on my voice, to the exclusion, and hindrance, of nearly everything else. But the most important lesson I learned is the reason I’m responding to this post. I learned to cop an attitude. I have believed for nearly 20 years, with little deviation, that the cause of my SD is psychogenic. I choose to believe this because it’s the only thing that provides a hope of finding a cure; the cure within myself. I haven’t posted this in order to be provocative or confrontational or critical of how other SD sufferers cope with their disorder. I’m just attempting to convey that with time (maybe lots of it), a 'proper' attitude, and focusing on things other than how one’s voice sounds at any particular moment, things get better. At least they have for me.
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Posted by: LarBec ®
12/18/2003, 22:09:26
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Really don't believe that my SD is of "psychological" origin, but I agree with you that "copping an attitude" can help significantly. When I forget about my voice, I can do very well. When I worry about it, of course, my voice "reacts." Perhaps the trick is to forget about it--as best we can. I certainly haven't mastered the trick. Doubt that I ever will. But I do value those times when it just "happens"--when I don't have "SD on my mind"--and people understand me clearly and without reacting in a way that leads to my feeling self-conscious. Larry, ADSD
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Posted by: ida ®
12/19/2003, 13:30:58
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Have you ever experienced a really strong voice when you were royally p*ssed off? I have, but it is too much trouble to always be angry. Developing attitude helps. Makes you seem like a pain, tho.
Ida
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Posted by: LarBec ®
12/19/2003, 13:51:56
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Ida, when I said "attitude" I meant a positive attitude (and not, as my nephews would say, a "tude"). I was not referring to anger or cockiness, neither of which, as you wisely note, tends to garner many friends.
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Posted by: ida ®
12/19/2003, 15:43:58
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I was only asking if anyone had experienced a better voice when they were really telling someone off.
Ida
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Posted by: LarBec ®
12/21/2003, 08:32:52
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Ida, I don't recall having that experience.
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Posted by: June Sutton ®
01/14/2004, 21:29:18
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Ida, this happens to me alot. I totally forget about my SD at that moment and my voice comes out strong and clear. I can even yell, but can't talk. Does that make sense?
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Posted by: Richard ®
12/19/2003, 14:23:05
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Ida,Yeah, so I have an attitude? So what. What's it to you? Don't annoy me. Richard (Better than anyone else) Callen
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Posted by: ida ®
12/19/2003, 15:42:33
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But we have always known that, Richard.
Ida
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Posted by: Lynne Martinez ®
12/19/2003, 17:16:14
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Hi Ida,Sure did, with the untreated AD-SD before surgery, and also currently, with these weird vocal/breathing symptoms many years later. There were a few years in between (immediately after RLN surgery) when that didn't happen. Voice was predictable. The funny thing is --- everytime I'm at an SD support group meeting or at an SD symposium, I always sound way better. It must be adrenalin. Some "natural shot" that comes with being around other SD'ers. Nothing I can control. Neurology seems to provide a continual mystery. thanks, Lynne
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Posted by: Yvon ®
12/24/2003, 08:09:16
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Hi Donna,I'm not at all concinved that the cause of dystonia is a malfunction in the basal ganglia. There are no proofs of that, just a general consensus. But there are more and more researches that show that there is also what they call "brain structure abnormalities" in focal dystonias. In the upper area of the brain, the motor cortex, there are abnormal areas that grow proportionate to the severity of the dystonia. There are now images of that (see: "Motor circuit" gray matter changes in idiopathic cervical dystonia at http://www.neurology.org/cgi/content/abstract/61/9/1228). The
theory is that there is an injury to the head (or some other trauma), like a bruise, and an associated pathologic movement develops shortly after. The shocked area feeds itself on the abnormal response movements and creates a vicious circle. More you fight it, more you bruise, so to speak. Instead of finding new ways of doing the same movement, the injured area just keeps mixing the signals, and finds no way out. The paper also says that the "structure abnormalities" in the cortex could also be caused by an abnormal function in the basal ganglia (which is the official version). But it could also be that they are not, that there is just this injury to the brain which is causing all the trouble. To me, this is exciting prospect. You can't live 23 years with dystonia without gaining some kind of intuition on how it works and my intuition tells me this possible explanation is right. But whatever the case may be, the fact that there are "structure abnormalities" associated with dystonia supports those (like myself) who are convinced that rehabilitation is possible. Your post caught my attention because I'm involved in a rehab program that uses "the brain to cure brain" - remaking the movement connections in another area of the cortex that is not "bruised". This already works for many (search the web for kynesiotherapy or rehab for dystonia). But the hope is that once you have established the healthy connections, the "bruised" area may heal and the condition disappear altogether. For me that's just a hope at this time. Some of most successful rehab programs promise something like 80-90% improvement but you have to keep at it all your life (although doing the retraining once a month instead of everyday). But in exceptional cases the symptoms disappear altogether, even after a 7-year follow-up without treatment. I have cervical dystonia. It's been one month since I began the program (unfortunaly I had to create my own based on correspondence - there is no support for it in the health care sector here in Canada, but our local support group is working on it). So far it's been exciting. Cheers!
And happy holidays!
Yvon
Gatineau, Qc
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Posted by: mel dubovick ®
01/02/2004, 16:25:39
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I think if/when researchers find out what causes Parkinson's, they will be extremely close to finding out the cause of SD. My rationale is both apparently involve the basal ganglia portion of the brain, both involve involuntary muscle spasms; Given the huge research support Parkinson's is getting from its most prominent patient, Michael J. Fox, it seems likely that disorder's cause will be unraveled first. If/when it does happen, I think SD people will have much to rejoin about. Bottom line is answering your question is that research I've read indicates that many SD'er experienced either a Virus or some form of Stress just prior to the onset of SD. That is obviously only part of the story but that's all I know.
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Posted by: JOHN S. BEEMAN ®
01/07/2004, 20:18:11
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And in this world, who doesn't experience stress - - in some form and in large quantities? I think that is the "it's my best guess" medical answer (similar to "it's going around"), no disrespect intended.
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Posted by: ida ®
01/08/2004, 07:50:15
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My thoughts too, John. I have been asked if there was any stressful things going on when I started having symptoms of SD in the late 70's, I say "Who wasn't goofy in the 70's?" I think we all want to find a cause so we can find a cure and will jump at anything that might have remotely caused it.
Ida
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Posted by: JOHN S. BEEMAN ®
01/09/2004, 20:38:01
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It may go back to my initial round of physician visits. They were all so sure it was "mental" given that they could not find any physical problem. Plus, I had this "lump" or tightness in my throat. Isn't that an emotional sign? My guess is there are too many SD case with absolutely no emotion component to validate that premises, but the "notion" that it is from stress (or emotional trama) is "built into" the medical mind/questions.
Modified by JOHN S. BEEMAN at Sat, Jan 10, 2004, 06:49:29
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Posted by: Kimberly ®
01/09/2004, 20:00:15
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I believe that in my case SD was triggered by stress. That's the only thing that I can figure triggered SD. I wasn't sick or had a head trauma. At the time of my onset, I had just moved to Florida from Connecticut, which was very stressful. When I finally move, I had gotten a new job with a jerk for a boss and I was building a new house. There is no one in my family that has SD, but my brother has hand tremors. I wonder if that's another form of dystonia. My grandfather died of Alzeimers (spelling?) and at the end, he could hardly talk. The last 15 years of his life, his voice was alway hoarse. My grandmother told me that he didn't have SD and that his hoarseness was cause from asmtha and emphazima (bad on spelling tonight).
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Posted by: Dale ®
01/10/2004, 14:53:50
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I strongly believe that mine was triggered by stress as well. I've had stress before, but the stress that I had prior to the onset of SD was overwhelming. Nothing I had ever experienced before. After about a year or so, the stress decreased significantly and that's when it all started. As far as I know, noone in my family has or has had SD or any form of dystonia.Dale
AD/SD
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Posted by: amygs ®
02/05/2004, 17:59:55
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I think I developed ad/sd from stress to my vocal cords. I worked in Jackson Hole Wyoming for a summer as a river guide. That job was physically strenuous to my vocal cords. Do most of you find that you used your voice a lot before the onset of sd?
Amy
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