Posted by: JOHN S. BEEMAN ®
10/26/2004, 16:57:44
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Dear Brigitte:
I have to be honest with you; it's been so long since I developed AD/SD I probably don't accurate recall all my symptoms at onset. I do recall I kept clearing my throat and I had a tightness in my throat. I was sure I just had the flu. But it did not go away and, over time, I began to sound like someone was squeezing my throat when I tried to speak. Speaking just kept becoming more and more of an effort. Sorry I cannot provide more information. John
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Posted by: Brigitte ®
10/27/2004, 12:13:24
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Good enough, John - I appreciate your response. I just neede to know that I am not imagining things.
Thank You
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Posted by: Laurie ®
10/26/2004, 17:47:00
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Brigette,One comment here struck my attention -- i.e., that your neuro said botox should last a year! That's absurd. Trouble swallowing isn't typical of uncomplicated SD as far as I know, but that doesn't necessarily mean you don't have an atypical SD or some other form of dystonia affecting your larynx, pharynx and/or diaphragm, etc. Can you see an ENT (specializing in voice disorders and very experienced with SD patients) or another neurologist for a second opinion? Any neurologist who claims that botox should last a year is highly misinformed (in my opinion)! Laurie
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Posted by: Brigitte ®
10/27/2004, 12:20:29
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Hi Laurie,
I was wondering about that "one year" too as I had Botox injections in other areas before and they had to be repeated in about 3 or 4 months.
Thank You for the recommendation about a second opinion. I was a bit self conscious about that but others on the BB said so too. May I ask where you are? You can e-mail me if you like. I have a bit of trouble or reservations in finding another specialist...
Thanks again
Brigitte
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Posted by: charlyn ®
10/26/2004, 18:07:53
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Well I have AD/SD and am not sure about the terms of a noose, but I sometimes feel when times are bad that hands are pressing on each side of my neck trying to shut off my voice . Which I have put off to muscle spasms. My speech therapist had suggested humming to help relax the muscles. I sip ice water at my desk most of the day, and notice I seem to drink more than others but am unsure if it is a habit I started to combat allergies, so I am not sure about sore throat
Of course many of us have had the... are you okay? are you sick?from the state of our voice....Wish Hollywood would show someone with our symptoms to help raise awareness that we are out here. Hadn't heard of SD until just before diagnosis. If you read the web, there seems to be a difference in how long botox lasts , especially until they get the dosage down...I haven't had it done yet as I worry about the allergies, and asthma with the botox. Charlyn
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Posted by: Brigitte ®
10/27/2004, 12:28:10
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Hi Charlyn,
I don't want to sound morbid but sometimes I wish I had a more "popular" condition where it would be easier to find a specialist. If you're trying to explain your condition or problems to someone, you can see the pity in their eyes but no comprehension because they've never heard of such a "thing".Dystonia is such a hidious condition in many aspects.
Maybe we should all get together and make our own movie? Just a thought. How do you cope? Are there any meds for SD? Thank You so much for your response.
Brigitte
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Posted by: charlyn ®
11/01/2004, 18:28:40
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Well I am sure by now you have read and know that botox injections and speech therapy are the two standard forms of treatment. I just get so frustrated at times in how people respond to our voice. I have finally gotten it over to a lady I work with....when my voice sounds strained it doesn't mean I am going postal...and it bugs me as much as it does you...So excuse me if I just don't chit chat. ( She complained to the supervisor that I didn't talk to her, and when I did she complained about the strain in my voice...admits she is hard of hearing...) I do feel alone at times...but it is easier that way...I carry on converstations and laugh with those I know who understand. We wouldn't make fun of the blind, deaf or someone in a wheelchair....but people just cannot understand when someone's voice gives out. I didn't even know this stuff existed until a news blurb after a conference here in Dallas/ Ft Worth. I read about it on internet and when I walked in the Dr's office the next Wednesday...sure enough I had it. ( This year, yet I had been suffering with it since mid 80's I was told in the early 90's it was a partailly closed soft cleft palate.)
Just think of the stars that have come out with having Parkinson's , MS , Cancer etc...even those who have come forward to talk about their mental illness....I just read that Louis Lasseter of Mary Hartman fame and the singer from the 50's Jimmie Rogers have it....but have never seen anything about it until reading it on the BB...I think it would be so great to get a 60 minute type exposure about the disorder or even a TV type medical show . Something to let people know it is out here. Well time to get off my soap box... Take Care. Charlyn
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Posted by: Barb ®
10/26/2004, 18:30:38
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Hi Bridgitte,
I do not have the feeling of a "noose" around my neck but I do feel as if somebody is pushing on the back of it. I also have had a lot of lower back trouble so I can understand why you would try and ignore the neck pain. I thought mine was just a result of the pain creeping up my spine. Turns out that they are two different things.
I agree with Laurie about trying to see another Doctor. I have never heard of anyone saying that botox would last a year.
I think the average is about 3 to 4 months. The longest I have heard anyone lasting was 6 months but that is not very common. Of course everyone is different and will get different results.
There are a lot of great web sites on SD { in fact there are so many I have not gotten through all of them } so maybe you can find one that will be able to help you. I wish you the best of luck and please keep trying to find something that will work for you. There has got to be something that can give you some relief. I am sorry that I can not help you more.
Barb
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Posted by: kitty ®
10/26/2004, 20:17:14
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I had a flu like reaction to Botox, and had trouble swallowing liquids especially cold ones. I had a much worse voice after treatment for at least two months and my voice never improved. Some of your problems could be directly related to the Botox. You can check out the Botox web site at www.RxList.com for information directly from the drug company. I don't know why my doctor didnot give me the drug information at the time of my injection. I have ABSD and Botox does not work as well for my type. I didn't like the bad reaction, it didn't work for me and my doctor said it had done all it was supposed to do but I still had a large gap in my vocal chords. Check out the web site and of course this board has lots of information as well as the National Dysphonia web site. Good luck, I can sympatize with your frustrations.
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Posted by: stacy ®
10/27/2004, 08:59:33
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Brigitte, for the last two years I have only needed one Botox injection each year. This year though the Botox injections have not been helping. I have already had three shots and none have helped my symptoms. Not only were my symptoms not helped but they are worse this year. I have trouble with swallowing, choaking (especially in the middle of the night I wake up gasping for air) and I always feel like I have a sore throat. My neurologist has suggested taking medication along with the Botox to see if that works. I also have essential tremor (the whole body)and that my have something to do with the extra symptoms. Good luck. Stacy
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Posted by: vici ®
10/27/2004, 10:51:21
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Stacy, Have you thought about the possibility of acid reflux as the cause for your swallowing/choking problems? Acid reflux can also cause a sore throat. For some reason SD'ers seem to be more prone to acid reflux. Some say it can be caused by the extra effort it takes to talk. I just had another bout of acid reflux and Prilosec OTC calmed the symptoms within a few days. But I'd recommend talking to your doctor if you suspect you might have it. Vici ABSD--Illinois
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Posted by: stacy ®
10/28/2004, 08:31:16
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Thanks Vici, I will talk to my dr. at my next appointment
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Posted by: Samietooo ®
10/27/2004, 17:56:41
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Hi Brigitte and all. One thing I've noticed is that when I'm nervous, upset or stressed out, the first place I feel it is in my throat. It's definitely a tightness, though I don't feel like I'm choking.When someone says that botox has lasted for a year, I always wonder to what degree it's lasted. Since everyone judges their own voice differently, does this mean that throughout the whole year their voice has been 'normal,' without any breaks in it or does it mean that they just tolerated their voice for the year before going back for another injection? As I've said on my previous posts, I've had 4 botox injections this year and only the 4th one has worked. I usually see some breaking within 2 to 2 1/2 months and in the past have had injections about every 3 months, not waiting for effects of botox to completely wear off. I am very surprised that a doctor would say that botox should last for a year and have no idea of where he's gotten his information from. And to say that your symptoms are 'phychogenic?' Please do yourself a favor and see another doctor. Best of luck!! Carol
(Florida)
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Posted by: Brigitte ®
10/28/2004, 14:00:28
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Hi and Thank You all for your inputs and suggestions. I'm a bit overwhelmed right now, need to sort things out... Had trouble logging on/posting because I tried to reply to everybody individually not realizing there is a limit to the number of posts. anyway, thanks again
I'll see you either here or by e-mail, am looking for a new Doc!
-Brigitte
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Posted by: ms ®
11/12/2004, 13:37:12
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In reply to your posting, I have SD and also just been diagnosed with a multi-noduler thyroid goiter that I feel is giving me the same symptoms your are having with the hoarsness, swallowing etc. My thyroid test show my thyroid is normal. It was just by accident that the goiter was found when having a carteroid ultra sound screening, the goiter must be growing internally since it can't be felt. I tried botox in the past, it did not work everytime and when it did only lasted 3 or 4 months, which is the normal length of time for botox and then your voice starts to return to the normal hoarsness.
I am seaching for help in finding out if there is a connection with my voice and my thyroid goiter. I have an appointment with a thyroid specialist next week and hope he can find a connection and cure it.
Marie
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