Welcome to the forum!

[Nintey]

First of all I would like to welcome you to the Spamodic Dysphonia forum. I set this forum up to allow other people with SD to share their stories, views, treatments and get support from other SD sufferers. I found that there was a lack of support out there for people with SD in the UK and I didn't want people to feel that they had to struggle on alone with this condition.

I myself have adductor spasmodic dyphonia. I was official diagnosed by a doctor in March 2007, but had first noticed a problem with my voice in about 2002. I worked in a job where I was on the telephone constantly, all day everyday and had been since 1998. I started to notice that the odd word in my sentences started to sound funny and realised if I repeated that particular word, no matter how hard I tried to make it sound 'normal' it wouldn't. At first, I just ignored it and battled on with my speech. But then people started to notice, which made me even more self conscious about this problem.

Over the following years it was a downward spiral from there and the spasms and breaks in my speech became more frequent, nearly ever other word. I started to do some research on the internet to find out what this problem was and I listened to a clip of a patient with SD, I knew instantly this is what I had got. My doctor confirmed this and explained the treatment was botox injections into my vocal chords every three months. I tried this method for about a year but I wasn't getting the desired results so I no longer have them.

At the moment I am just practicing with different exercises and my speech does seem to have improved slightly over the past year, so I will keep persevering. I have read and spoke to some people who have largely overcome SD who are a great inspiration and give me the hope that I may one day be able to overcome SD too.

I hope this forum will be a lifeline for other SD sufferers, we can all fight this battle together.

Donna

[Karl]

Just a quick hi!

I hope this forum attracts people who are suffering from this. It would be great to get to share experiences.

Good luck with the forum.

Karl.

[lost42]

I just found this forum tonight. Thank you for giving SD sufferers a place to see we are not alone.

[Nintey]

Hi Lost42, welcome and I am glad you have found the forum. I hope you will find it beneficial

[Jeanne]

I have not been diagnosed with SD but feel like that I may be in the early stages of this.

[Moran1011]

I just joined the forum and hope it's okay since I'm from the U.S. I'm a member of the SD site below but it seems they don't like the mention of any books or anything other than botox to help with SD. I was told it's considered advertising but notice they have a book advertised on their front page. I was pretty upset with them so I came looking elsewhere. The book I mentioned was the "Free to Speak" one that I've been using.

I've had SD for about six years and I do get botox injections occasionally. I've had five total over the years. I also have fibromyalgia so the combination is deadly for muscle tension and pain while speaking. There are days I just don't think I can stand it anymore, like today!

http://www.dysphonia.org/

[LilMissAnna]

Only just found this group, thankyou for putting it together. I hope your still active in this group so we can talk more! My signs were pretty much the same as yours, each year my voice was getting worse and worse. I have to force my words out, they sound unpleasent as there are many pauses in between. I usually can't say words with one syllabol. I try my very best to control my voice, I have to pace myself. My voice is worst when I am stressed or nervous. It sounds like I am crying or being strangled which is pretty embarrassing, especially when I have to do a speech infront of everyone at school for assesments. I am aware of the two types of Spasmodic Dysphonia, Adductor and Abductor. I have the same as you, Adductor. Having this condition has lowered my confidence. And this voice disorder is so rare, its appauling how many people arn't aware of it. Thankyou very much for creating this group
Please reply.

[stefthepest]

First of all I would like to welcome you to the Spamodic Dysphonia forum. I set this forum up to allow other people with SD to share their stories, views, treatments and get support from other SD sufferers. I found that there was a lack of support out there for people with SD in the UK and I didn't want people to feel that they had to struggle on alone with this condition.

I myself have adductor spasmodic dyphonia. I was official diagnosed by a doctor in March 2007, but had first noticed a problem with my voice in about 2002. I worked in a job where I was on the telephone constantly, all day everyday and had been since 1998. I started to notice that the odd word in my sentences started to sound funny and realised if I repeated that particular word, no matter how hard I tried to make it sound 'normal' it wouldn't. At first, I just ignored it and battled on with my speech. But then people started to notice, which made me even more self conscious about this problem.

Over the following years it was a downward spiral from there and the spasms and breaks in my speech became more frequent, nearly ever other word. I started to do some research on the internet to find out what this problem was and I listened to a clip of a patient with SD, I knew instantly this is what I had got. My doctor confirmed this and explained the treatment was botox injections into my vocal chords every three months. I tried this method for about a year but I wasn't getting the desired results so I no longer have them.

At the moment I am just practicing with different exercises and my speech does seem to have improved slightly over the past year, so I will keep persevering. I have read and spoke to some people who have largely overcome SD who are a great inspiration and give me the hope that I may one day be able to overcome SD too.

I hope this forum will be a lifeline for other SD sufferers, we can all fight this battle together.

Donna

Hi Donna,
thanks for setting up this forum. I used to be in touch with somebody from America with SD but not heard from them for ages and have lost their email. It is a very lonely condition having SD and the more people can help each other the better I think.

I'm in UK and as in every country, maybe apart from America, it's unheard of. I could tell you a load of stories of what I've had to go through the years to be diagnosed, maybe later, but thank you for putting yourself out there.

All the best
Stef

[sunnydays_in_texas]

Hi all,

After a very frustrating day, I decided once again to turn to the internet to research methods for treating SD. I have had 2 botox injections, the first one was successful, the second was not.....now I'm just frustrated and wanted someone to "talk" to....

Amanda

[stefthepest]

Hi all,

After a very frustrating day, I decided once again to turn to the internet to research methods for treating SD. I have had 2 botox injections, the first one was successful, the second was not.....now I'm just frustrated and wanted someone to "talk" to....

Amanda

Hi Amanda,

I'm sorry you're frustrated at the moment and your last botox injections havent worked. Have you found out anything else that can help?

I was told by my doctor that there were only 2 treatments available, the botox injections which may work for a limited time but have side effects and surgery. Even with surgery that is not a guaranteed cure so it's a very frustrating condition to have.

I did try speech exercises when i went to a speech therapist at the hospital but they made absolutely no difference and in fact I became quite frustrated and upset because the therapist basically told me that the reason for lack of improvement was I wasnt doing my exercises when I had.

It is so and I'm sorry to repeat this word, frustrating to have SD as very few people understand what you are going through and when they say that "it's all in the mind" or "down to nerves" that's enough to make me want to give up. But of course you cant and you dont.

If I can help in any way or you just want to chat, please feel free to,

stef, in a cold England

[sunnydays_in_texas]

Thank you for lending a sympathetic ear and for understanding what I'm going through. I guess I have to keep on trying....

I too, tried speech therapy, but wasn't impressed with the advice or the results. Talking at a higher pitch was the main recommendation along with shorter phrasing, easy onset of words..... guess they are all coping skills, but not a quick fix.

I will be calling my doctor this week to discuss another botox try...

Take care,
Amanda (USA, Texas)

[misty_chua]

Hi Amanda, Stef and other SD people! Good day! I'm Misty Chua from the Philippines. It's so good to find this forum. I haven't found one single person in my country with SD. Knowing there are other SD people out there who are not giving up is enough for me to hold on.

I tried botox once. No effect at all. Anyone who tried Connie Pike's therapy? In my research, it seems to be one of the best. It's not a quick fix, though.

[sunnydays_in_texas]

Hi Misty!

I just joined this forum a few weeks ago, and already feel less isolated and less alone. I hope it will serve the same purpose to you and will give you some new hope. I just purchased Connie's book and am trying to be open to the suggestions and methods discussed. One important topic is on breathing. I know that is one of the issues that I've struggled with. I guess the question is "do i struggle with SD because of poor breathing" or "do I struggle with breathing because of the SD"? I'm trying to follow some of the methods and will post my results here. I wish you the best of luck and offer you support... Take care,
Amanda

[misty_chua]

Hi Amanda,

Thanks for the encouragement! Oh yes, I've noticed that after doing breathing exercises, my voice a little. But the effect is short. I think the breathing helps because it relaxes me. I have the same good effect after having a relaxing massage. Connie said in her book/website that she did have massage as part of her therapy before.

How did your SD start? Is it AB or AD?

[misty_chua]

Guys, have you heard of Phonratax? Saw the advertisement. It says it's an herbal treatment for SD. I haven't tried it..

[stefthepest]

Hi Amanda, Stef and other SD people! Good day! I'm Misty Chua from the Philippines. It's so good to find this forum. I haven't found one single person in my country with SD. Knowing there are other SD people out there who are not giving up is enough for me to hold on.

I tried botox once. No effect at all. Anyone who tried Connie Pike's therapy? In my research, it seems to be one of the best. It's not a quick fix, though.

Hi Misty,

I'm glad you've found the forum and will find it a help to chat to other people with the condition.

I know, it's a rare condition and so thank goodness for the internet and email so we can feel closer together!

Take care
Stef

[stefthepest]

Guys, have you heard of Phonratax? Saw the advertisement. It says it's an herbal treatment for SD. I haven't tried it..

HI again,

No i havent herad of Phonratax. I'm a bit suspect about herbal treatments as they seem to sell them for anything and everything and always promise a miraculous "cure".

[sunnydays_in_texas]

Have never heard of Phonratax......let me know if you try it and if it works.
--Amanda

[misty_chua]

Hi Amanda and Stef,
I haven't been able to visit this site for a while.. I haven't tried the phontrax. I have the same apprehension as well, Stef. So far, I think Connie Pike's and Mike White's exercises are the best treatment for me.

Dr. Morton Cooper could also be ok, but it's much more expensive. Botox seem to work for others, it wasn't effective with me. So I have no other choice but to go through the slow and hard work.

How are your voices doing? Any techniques or procedures that you think are working for you?

Misty

[aadam]

hi im only 21:( and im living an old life, 4 years i went undiagnosed sent back and forth by my doctor and didnt get nowhere, but i found the courage to go the US to Dr James in portland Oregon who found that i to have adductor SD, and i've had my first botox injection last week its going well, but im worried it wont always be reading peoples experiences.

im back in the UK and cant find anyone who does botox, and any speech therapists who specialise in SD , if anyone could help me find some links, ill be forever greatful

its not easy but if it dont kill ya it wont hurt ya

[GraceB]

I have been diagnosed with ABductor SD which is the more rare type. It is difficult to speak, especially on the phone because you feel the need to make an extra effort to speak louder; I actually get lightheaded when I speak to anyone for an extended length of time. I've had two failed Botox attempts and I am looking for alternatives to treatment-physical exercsies, anything.
I have always been in a service based industry and I think it's time to look for a new job...
It is unbelievable how rude people can be sometimes because they don't understand the problem.
Would love feedback from anyone at this point. Thanks.

[claire]

Hello Everyone,

Im so glad that Ive found this support group for people with this horrible affliction which affects you on a day to day every day basis and life can be very lonely

I started with my voice problem about 3 years ago, I am 35 and have worked in call centres all of my adult life using my voice for 9 hours a day every day. This is a good job for me because before this I was a very outgoing, bubbly people person chatterbox!
My voice would go with every cold or bout of flu that I caught, i would have no voice for about 2 weeks and go to work anyway but do another duty until my voice came back.
Ive got by doing this for 3 years but its far from ideal because with my sickness record I have lost afew jobs also because of this and im not currently working because my voice is the worst its ever been.
This year, id just started a new job and in March i caught Bronchitis and the voice went. It hasnt come back since then and up until about 2 months ago my doctors notes were still reading "acute Laryngitis". Now ive been diagnosed with Dysphonia i think by the ENT doctor but he didnt actually tell me during the consultation and neither him, my speech therapist or my GP know anything about Dysphonia.
Ive researched it myself and seen and heard videos on you tube of people with Dysphonia and that is exactly how i sound. For the most part i cannot speak, a good day would be speaking until teatime when my voice just croaks literally and then nothing.
Ive just been diagnosed with Polycystic ovaries and am waiting to hear if I am also diabetic. Im struggling at the mo, people even family arent very supportive and their lack of understanding makes me feel even more isolated; and my speech therapist seems frustrated with me sometimes.I dont really believe that the speech therapy is working but 'll carry on with it until she says its not.

Incidentally, nobody has mentioned the botox injections to me but i wouldnt want them after reading that they arent a permenant solution and have even made some patients worse.
It would mean the world to me to be able to "speak" to people who have gone through this experience!

All the best everyone
Claire x

[misty_chua]

Hi GraceB and Claire, welcome to the forum! Yes it is really helpful to get in touch with people who have the same condition. I have Spasmodic Dysphonia ABductor Type (ABSd). I myself tried the botox injection, I heard that it works for some, and it doesn't for others. I'm one of the unfortunate ones. The botox did not work for me. There are other alternative treatments. You can google the ff. with keyword Spasmodic Dysphonia: Dr. Morton Cooper, Connie Pike, Dr. Raymond Smolover, Alma Vajas.
Blessings,
Misty

[katieh]

Hello Everybody,

I have ADSD. My symptoms developed following a severe viral flue infection in January 2008 and several subsequent upper respiratory tract infections. Like nearly every other sufferer, I have seen numerous Drs and Consultants and endured several camera examinations and months of speech therapy without diagnosis. Finally, a chance comment made by yet another 'Specialist' during a consulation struck a note with me. He mentioned muscle spasms as I was leaving the consulation room and by the time I had walked back to my workplace I wondered if I may have inherited Dystonia. My Mom has suffered Cervical Dystonia (or Spasmodic Tortocollis) for 25 years. After hours of research on the internet I discovered that Dystonia could also affect the larynx and on reading various descriptions of the symptoms I felt a cloud had been lifted; I had found my diagnosis. I discussed SD with my GP but she had little knowledge of the condition and after reading the couple of printouts I gave to her she happily referred me to my Mom's Neurologist. He immediately agreed I have SD. That was August this year.

My symtoms are a hoarse, choppy voice with throat tightness and spasms. I also experience difficulty swallowing after eating for a short time and consuming a meal is usually impossible as the spasms in my gullet become extremely uncomfortable and often painful. Trying to drink to help the food down is far from helpful as I end up coughing and spluttering! More recently I have started suffering mild tremors in my neck, shoulders and arms if I am upset, stressed or angry and the Neurologist said I am suffering a very mild form of cervical dystonia too.

In October I had my first consultation with an ENT Specialist at QE Hospital Birmingham and have now had 2 botox injections. The first was, in my view, unsuccessful but the most recent and higher dosage injection (last Wednesday) has left me with a very 'breathy' voice. If I try to talk I become very breathless. I am experiencing constant reflux, am unable to burp and want to be sick when I try to eat but cannot wretch (sorry folks!). I am hopeful though that when these side effects wear off I will see an improvement in my symptoms.

I wondered if any other SD sufferers also experience problems with swallowing and may have suffered similar side effects to the botox injection.

Incidently, I was terrified about having the Botox injections having read some 'horror' stories online but both have been fine. The procedure is very straight forward and quick, not at all painful just a little uncomfortable when the Dr is locating the spot to inject.

[misty_chua]

Hi Katieh,
I have ABSd. I experience breathy voice, tightness around the neck area. But I don't have any difficulty in swallowing.. Sad to hear that you have to have difficulty in swallowing on top of ADSd..
Blessings,
Misty

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