About two months ago I began experiencing what I thought was sinus drainage from allergies, that caused a mucos build up in my throat. I say this because I've had it before, usually associated with alot of drainage from allergies, it always went away after a couple of weeks. This time it hasn't and this time very different symptoms have evolved over the last couple of weeks. I saw my regular doctor who prescribed Allegra, this only made it worse. Then I went to an Ears,Nose & Throat doctor. She used a scope to look up my nose, through my sinuses and to the back of my throat near my vocal cords and saw nothing. She prescribed a high dose of decongestant and expectorant, which did not help. In a couple of days I am going to have a barrium swallow to see if anything can be found. In the meantime I've been searching the web and ran across SD. It sounds very similar to what I've been experiencing, but most descriptions are of more severe cases, where people can't talk. I have not experienced that yet, but here is a run down of what I'm feeling:1. Feeling of being strangled
2. Feeling of having something caught in my throat
3. Symptoms are almost non-existent in the morning, but worse as the day progresss.
4. If I have a quiet day, with not much talking, its not that bad.
5. Some days I hardly notice it, and then it returns.
6. Throat seems extremely tight or tense at times
7. Difficulty swallowing
8. If I exhale really fast, I've noticed a couple of timese that I sqeak or wheeze
I'm not asking for a diagnosis, but has anyone started out with any of the same symptoms? The internet doesn't say much about the symptoms in the 1st stages of SD?
Re: Need to know more about symptoms of SD??
Hi Randa. Sorry to hear you are experiencing these symptoms. They can be very uncomfortable and anxiety provoking.
In the beginning, I experienced all the symptoms you listed with the exception of No. 1, the feeling of being strangled. I have never had that feeling, just the tightness. I was constantly clearing my throat, wheezing and breathless, all of which were thought to be allergies. Then my voice began to wobble, especially and most noticeably on the phone. I did not get an actual diagnosis of SD for several years.When you were "scoped" did the ENT have you wired to a monitor so he/she could watch the actual movement of your vocal cords or was she just looking for physical changes, nodules, that sort of thing? With SD, only the movement of your vocal cords is changed. When your barium swallow comes back negative you may want to get a referral to a movement disorder specialist or an otolarynlogist who is familiar with SD. The DMRF has a listing if you will go to the main site at the bottom of this page or perhaps one of the moderators will give you further advice. Good luck and let us know how you make out. Sandy in Texas AD/SD
Re: Need to know more about symptoms of SD??
Yes the doctor did have me make a series of sounds while she was looking at my vocal cords. I'm actually looking forward to the barrium swallow, can you believe it. Never thought I would welcome a medical procedure, but I sure want to know what is going on. Thanks..Randa
Re: Need to know more about symptoms of SD??
Hi Randa, I had a barium swallow last year but it failed to show any problem. They generally do these to rule out acid reflux that can inflame the vocal areas and cause changes in voice.
I have had SD for 40 months and am still going down the "its in your head road". The hospital that I went to to have my first Botox just said "because you did not have reflux on the day the barium was done does not mean that you never have it" and sent me away without Botox for further tests.
They also think that the discomfort around my rib cage (caused by 40 months of straining to produce voice) is heartburn.
After I have had a full G.I. and anal investigation with biopsy and a 24 hour PH test, I am then told I can start Botox.
I have seen speech therapists, hypnotherapists, psychologists, you name them I have seen them. Even though I have a diagnosis in writting, the Botox is illusive.
Take care not to end up going down the same road as me, you loose so many years of your life when you could be getting help.
It is obvious to me that no one I am dealing with has a clue and everyone on the board seems to experience the same problems as I do, so it is some comfort to know its all part of the course and that I am not going totally bonkers. Take care.
Re: Need to know more about symptoms of SD??
Hi Randa,If it's any consolation to you I experienced and still do experience all of your symptoms. It started with my straining my words out and a feeling of my throat being squeezed (strangled as you describe it) I also had the mucous at the back of the throat. I do belive that this can be natural but you notice it more as you tend to look in the mirror more. I eventually was diagnosed with ADSD and am currently receiving Botox injections with limited success every three months. I can say that if you are diagnosed as having SD then this BB will give some comfort and you will meet and chat with many nice people who will give you plenty of support and encouragement. Best of luck
David
Re: Need to know more about symptoms of SD??
Thanks David.... In a strange way, I'm glad to hear there are others that have the same symptoms. I think most of the anxiety of becoming ill, is not knowing what is wrong with you. At least know I have something to tell my doctor to look into. I'll post a message when I get the results of the barrium swallow.Randa.....
Re: Need to know more about symptoms of SD??
Hi Randa,
I was recently diagnosed with SD, I woke up one morning and was unable to speak.You would not believe some of the things I was tested for before they had me see an ENT.When I was scoped the ENT said the flaps of skin(false vocal cords)were closing prematurely prohibiting sound.After 4 months I am still not speaking,but at least I know more about what is going on.I have only been on this board for a couple of weeks,but let me say you have found a caring group of people.Some of the replies I have gotten came at a time that they were greatly needed........Back to your question.....When I first started noticing problems I did not have the muccous problem.I experienced dry mouth and found myself chewing gum most of the time to help relieve symtoms.I work in a large retail store and was constantly talking to people either in person or on the phone.I had some cracking in my voice and some hoarsness but never gave it much thought.I am a smoker and never developed a smokers cough or anything like that.I feel more of the "I know what I want to say,but my mouth and brain won't work together" type.I do not know how many others feel this way,and like I said earlier I have only been in this group a couple of weeks.I hope this has helped and please keep us posted has to what you find out.I hope your voice stays with you,I pray that one day I will get some of mine back.I will keep you and your family in my prayers.....good luck.........Micheal
Re: Need to know more about symptoms of SD??
Hi Micheal,That's an interseting thing you said about your brain and mouth not working together. I have just that. I can think clearly and my mind is as razor sharp as it's ever been. I can talk in a whisper or in a falseto like voice but when it comes to my normal speaking voice it just cracks up and does not function with my brain. Therefore carrying on a conversation is a nightmare and I just want to get away. I muddle through on the phone and I am sure people just think I have a gravely voice they do not realise the difficulty I have in delivering, what to them is a natural function, like blinking. I wonder hopw many other SD'ers experience this and is this common to our complaint? David
Re: Need to know more about symptoms of SD??
Hi David,
I thank you for the comment on the brain/mouth symptoms.I wish I could explain it well,but it sounds like you know what I mean.My first episode with SD was about 18 months ago and lasted a week .I was put under the treatment of a pschiatrist and started to believe that I was a mental case.When it returned this time with a vengence the first thing I did was have my wife make appointment for me to get back in counceling.Fortunately my counselor believes in looking for all physical problems and encouraged me to see an ENT.I have a name of my problem and now have the ground work started to begin the fight.When I have written the Doctors and Voice therapist about the brain/mouth connection I alwys get a puzzled look.Like you I feel as sharp as I ever was,and have even started a few new things to help keep the mind active.I too really want to know how many others feel like we do (Hey maybe thats what Peter Frampton was singing about!).Lets hear some good responses out there.I am so excited to find people who understand............Micheal
Re: Brain/mouth
Hi guys - David, when you first posted about the brain/mouth thing a while ago I wasn't sure if that was one of my symptoms or not. But recently I have had somewhat of a spontaneous partial remission (my voice has been much better, for no apparent reason, for about 4-5 weeks now.) And I do think that I am able to say things better (hmm, you wouldn't know it from this post..) But I actually feel that I can think better. That was one of the troubling things when my voice got so much worse - my brain seemed so addled. It was difficult to concentrate. But I do think that that is better now; I feel more myself. I think I would attribute this to the sheer amount of effort it takes to talk with a troublesome case of SD. It takes so much concentration just to get out a word, that there is no energy for composing a thought. Just thought I'd add my two cents here. I wish you well, Robin (AB/So. Calif.)
Re: Brain/mouth
I've noticed the "addled brain" thing too (and I've read a number of responses where people refer to it as "brain fog" which describes it perfectly for me. I asked a neurologist about it years ago.. he sort of blew me off saying that forgetfulness comes with age (even though I was in my early 30s at the time) and that I was concentrating on producing speech and trying to pick up cues from people around me and focusing on all those details made it harder to concentrate.
Also, I definitely speak slower than I did with my normal voice... I guess fleeting thoughts disappear before I have a chance to vocalize them.
Susan
Re: Need to know more about symptoms of SD??
Hi! I sometimes feel the brain/mouth conflict too, but I think it may be due to the fact that when I open my mouth to say something and it doesn't come out as planned it is so distracting that I loose track of what I was going to say in the first place. Just trying to get the words out takes so much mental concentration. I've likened it to the old mataphor, "trying to walk down the street and chew gum at the same time." Vici ABSD/Illinois
Re: Need to know more about symptoms of SD??
I am with you, it takes so much effort to get the voice out, control the breathing etc etc I quite often cannot remember what I was going to say at all. It certainly does not have the impact trying to tell a funny story ( was always doing that prior to SD), if you manage to get half of it out people have lost interest and put their heads in a newspaper. I do not bother any more.
Its strange though because the voice you hear in your head when you are thinking is your normal voice, sometimes when I spend a lot of time alone I forget, until I go to speak that is.
Thats the best thing about the internet we are all equal here.
Re: Need to know more about symptoms of SD??
Krissie, I don't hear the voices in my head. Maybe we have another problem here. heehee! Just kidding :>) Vici
Re: Need to know more about symptoms of SD??
My SD started with a slight tremor on the phone, then progressed into slight tremor whenever I spoke. It then broke out in awful breaks in speech, especially on vowel sounds, and then went into just not being able to say anything in a normal voice (sounded like I was being strangled). I didn't notice the flegm until an ENT pointed it out to me and told me I had allergies. I didn't but the flegm was still there.It went away for a while, but then came back with a vengeance. When it came back, and since then, I notice that I do have more trouble finding words and I speak a little slower. I think it's because I'm searching for words that I can say and also focusing on using my throat and diaphragm muscles properly so I can get the words out without cracking. Very frustrating indeed! Also, curious to know if anybody else feels that in group settings that people are constantly edging you out of conversations and/or cutting in to what you say? I often feel lately that it's very hard for me to make a point in a group conversation because I can't hold people's attention long enough. I'm wondering if this is because I can't speak over others anymore. -Karen
Re: Need to know more about symptoms of SD??
Karen, I am fairly new to the BB so bear with me. I found your last paragraph to be quite interesting. I too used to take an active part in conversations, but now find that my friends are either losing interest in what I'm saying or cutting in cuz they can see how difficult it is for me to get a sentence out. My dr. has suggested speech therapy and I was wondering if anyone has had much success with this. He disagrees with my other dr. and wants me to wait before I get another botox injection and feels that I now have only AD/Sd instead of both ADand Ab/Sd. My voice has been gone for several months and I have had this for a year and after going to 8 different drs. testing for everything from heart disease to allergies to asthhma to spasmodic dysphonia, I am somewhat relieved to know this at least has a name. Needless to say, I'm confused but thankful to all those on the BB for all your help. I have received more information here than at the drs. Thanks again. Marilyn in Texas
Re: Need to know more about symptoms of SD??
Hi Marilyn,I tried speech therapy before trying botox. They basically told me that I had bad breathing habits when I spoke and worked on that. Frankly, it didn't help me much at all, with the exception that I did learn some interesting techniques for helping me to relax my throat and how to project a little better. I would suggest you call up the National Dystonia Assn and ask for a list of neurologists or ENT's in your area that work with movement disorders or SD. That's how I found my dr's and I've been quite happy with them. Good luck,
Karen
Re: Need to know more about symptoms of SD??
Thanks Michael....Good to hear your words of encouragement. I'm already acting as if I've been diagnosed with SD, sounds strange huh? but my symptoms sound so much like other SD patients. I probably shouldn't even be assuming I may have SD,but its alot better than worrying whether or not I have something more serious like throat cancer.....the not knowing is driving me crazy. I hope this barrium throat swallow/x-ray will indicate what is going on with me. We'll see tomorrow.Randa......
Re: Need to know more about symptoms of SD??
Hello Randa and Others,I welcome you all to the NSDA Bulletin Board. Yes, Randa to answer your question, I've had most of the same symptoms and feelings. When my voice problem began, I thought it was a severe case of Laryngitis and allergies. The first time my voice was gone for 2 weeks and then it began to go away more often and stay gone for longer periods of time. I've been through a lot in my 17 years with voice problems. I saw numberous doctors, specialists, etc. It was not until 1998 I was finally diagnosed with ADSD. I went through the old down the nose with the tube and light so many times. It is actually quite uncomfortable and sometimes painful. I've also had the video scope with light down my throat many times. I had the barium swallow too. It is not a pleasant thing to go through either. I don't think they will find anything like you are describing there, but it can't hurt to take a look. If I were you, I think I'd be seeing a otholarygologist or a neurologist one who is very familiar with different voice disorders. I don't mean to discourage you, but I hate to see someone have to go through all that most of us here on this board have already gone through. I've had severe allergies most of my life and had Bronchitis so many times along with voice problems. I was even thought to have had Asthma and given an overdose of breathing medication and hospitalized for a week. I gave myself allergy shots for 2 or 3 years. The feeling of being strangled and tightness in the throat is a symptom of SD/Laryngeal Dystonia. Does your words break on a vow sound when you speak? When mine started I'd been sick with Mono Virus and have had Mono twice in my life. I am also a carrie of the Ebstien Barr Virus, which doctors say most everyone has this, but I don't know. It is an immune system problem, not life threating or anything, but you are just very subsepable to anything that is going around. You could also have MTD (Muscle Tension Dysphonia)and may be leading to SD (spasmodic Dyshonia). However, MTD is not or will not cause you to have SD or at least that is what I've heard. You could have a little of both. It is very important to have an EMG Test done. What they do here is place wires on your the outside of the throat/neck and have a tv screen you are hooked to which reads the waves in your muscles/nerves. Usally done by a Neurologist or Voice doctor.This will help determine if your muscles are spasming. However, I remember having my first EMG and nothing showed up. SD has a lot of different factors that play into it. Like stress and difficulty speaking when nervous, etc. I hope some of this helps and doesn't get you too worried. I just want you to be aware of what to expect if indeed you do have SD. Regards, Jan Joiner - Alabama - SLAD'R Surgery - 6/01
Re: Need to know more about symptoms of SD??
Dear Randa - Ah, that mention of the barium swallow test just took me back. It was one of many tests I had before I happened upon an ENT who had heard of SD. BTW, I believe (I may be wrong) that the barium swallow would not deny or confirm anything about the presence of SD. May I suggest that you print out an informational page from the NDSA website ( http://www.dystonia-bb.org/NSDA/) and take it to your ENT? It is very likely she has never heard of SD or at least never heard anyone who actually has it. I believe (again, I may be wrong!) that you need to be scoped with video stroboscopy equipment to get a diagnosis of SD, or be seen by an ENT who has experience with the disorder. It is not really possible for anyone to "see" SD using a regular scope - the vocal cords move too quickly. The stroboscopy equipment allows the cords to be viewed in arrested motion. Having said that, I'll now say that it sounds like (based on the recent information from the Southwest Patient Symposium in Scottsdale) that many of the SD experts actually diagnose SD just by listening to the patient - any "tests" are done just to confirm the diagnosis. But they are experts who have heard many many SDers. I don't know if your symptoms are SD. I have Abductor SD and the symptoms are different than the more common Adductor variety. I do know that I found information about SD on the internet before I had my video stroboscopy and diagnosed myself with the AB SD. When I told the speech pathologist about that (before he told me his findings) he said, "Well, what do you need me for? ;-)" On the other hand, I recently met someone who has had problems with his voice for years - and in meeting me thought he had found out what his problem was (he was thrilled it had a name.) He went to get diagnosed and found out that he had just been using his voice incorrectly. He has been able to use voice therapy and recover his voice. Important note: he went to experts to get the diagnosis. Hope some of this helps! Good luck with your journey. I wish you well, Robin (AB/So. Calif.)
Re: Need to know more about symptoms of SD??
OK,everyone...I've had the Barrium Swallow, wonderful stuff. Always wondered what cherry chalk tasted like. Anyway, nothing came of it, they didn't find a thing. I didn't think they would. The day I had the test was a fairly good day, no distinctive feelings of the tight throat. I've counted at least five episodes of these feelings since the last time I saw the ENT on March 12th. One episode was in a
K-Mart. I got upset because I lost something of mine and was looking for it frantically. I noticed how much my throat tighten up on me, it seems to subside a little once I found what I was missing, but persisted for the rest of the day. I really beginning to think my problem has something to do with stress. Anyway, my follow-up with the ENT is in a couple of days, at which time I'll also have a CT Scan. Hope it doesn't involve any taking in of any more delicious liquids, hehehe!!! Thanks to everyone that has responded to my inquiry on this disorder. You've given me more info that I could hope to sort through on the internet. I will be asking my doctor to explore this as a possibility of my troubles.
Re: Need to know more about symptoms of SD??
Hi Randa - welcome to the NSDA BB.In classic 'textbook' cases of SD (laryngeal dystonia) the main symptoms are effort in speaking and noticeable breaks/interruptions in getting words out. Doctors and speech pathologists actually diagnose SD from listening to the patient more than anything else. Until you experience the problems in voicing it would be a big assumption for you to attribute these symptoms you mention to SD. Good luck in your search for answers. David Barton (AD/SD, Auckland, NZ)
Re: Need to know more about symptoms of SD??
Hi David,I have a question. You say that unless I experience the voice problems I should hold off in assuming I have SD....are the voice problems abrupt or gradual? I've started to sound a bit "throaty" when I talk, kind of hoarse and my voice a little deeper than normal. I had the CT scan, nothing showed up. That's good and relieving but also frustrating because it doesn't provide me any answers. My ENT doctor prescribed me an Albuterol inhaler to use, hoping it will dialate my throat?? I think she's nuts. I've been using the inhaler, but it doesn't work. Thanks..Randa
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