Just saying "HELLO". : Hi just wanted to... - Dystonia Society

Dystonia Society
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Just saying "HELLO".

Caroline1965
Caroline1965

Hi just wanted to say "Hello" , I'm new to this . Been diagnosed with spasmodic dystonia of my vocal cords , lost my voice this time at the beginning of March 17 and still only got a slight wispy voice . After 18 years of been told there's nothing wrong with me to finally getting diagnosed is such a huge step forward , been having botox injections into my vocal cords but not seen any improvements as yet . Really felt isolated by this condition as never met or even talked to anyone who suffers with this condition until today , but would love to connect to others . THANK YOU .

14 Replies
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Hello Caroline

I don’t have the same type of Dystonia as you but can relate to the isolation you experience. Isn’t it hard when people tend to think you are complaining about nothing much as the condition is not known about, recognised or understood .

You may know that there are several groups around the UK who meet up to share their thoughts and experiences. The Dystonia Society has all the details.

Keeping in touch with this forum sometimes helps if it relates to your own experience.

Thank you for saying Hello

Rkai

Caroline1965
Caroline1965 in reply to Rkai

Hello Rkai , I don't find it annoying cause people think I'm complaining . I find it totally soul destroying having people making fun of me , then wonder why I sometimes snap or ignore them . I work in retail and have to put up with this type of behaviour all day everyday . I was told by a specialist that there was nothing wrong with me I'm afraid to talk !!!!!!!, he's even recommended that I see a psychologist to deal with my problems . How long have you suffered with spasmodic dystonia? . Although there are several support groups there is nothing in the area where I live , up until Thursday I had never even talked to another sufferer .

Rkai
Rkai in reply to Caroline1965

I was diagnosed late in 2012 with cervical Dystonia.....Just reading of your experience in your job and the specialist made me feel angry. They seem so keen to mention the word ‘depression ‘ and recommend anti depressants......I often think they don’t really know what to do with us when standard treatment such as Botox never works.

I am like you in that there is no group near where I live either.

Anyway good to meet you on this forum.

Caroline1965
Caroline1965 in reply to Rkai

I just think that people just don't realise just what it feels like and how their innocent comments although not meant to be NASTY or hurtful are just that . I'm new to BOTOX only had 3 injections so far but not had any results so far , but will continue at least I'll give it a good try . It's lovely just been able to chat to people who are going through the same illness .

Hi Caroline

I too have dystonia affecting my vocal cords. My voice is very weak and even fades away but it also affects my mouth and I keep coming out with different words. It is very isolating because people just don't hear what I say and I also have a hearing problem so can't hear everything said to me. My right arm and hand shake and my right leg has a mind of its own. I have tried to manage without medication because the one tablet I did try turned me into a zombie. Actually I am very lucky because I am not in pain. I find that stress and fatigue really make everything much worse. I am at the hospital on Wednesday to find out if I am a candidate for botox as the other two drugs suggested seem to have terrible side affects i.e. Confusion, sleepiness and I wouldn't be able to drive. The first tablet they gave me was awful I couldn't concentrate, think of anything or remember anything and my GP even started talking about dementure tests. As you can imagine this really scared me.

How are you managing? You mentioned botox into the throat. What is this like - what do they actually do.

Hi Barbara , they inject BOTOX into the front of my throat . So far I've had 3 injections these are usually done every 4 wks , the specialist says if there's no improvement in 2 wks then just ring up n I'll be put into the next month's clinic . He firstly injects a local into the area , he then attaches special pads which when he inserts the needle with the BOTOX these pads pick up noise by the sounds produced when the needle is inserted he can tell if he's in the right area . It doesn't especially hurt, it's just a bit uncomfortable. Unfortunately the injections haven't worked so far , but each time I have the injection the dosage is increased its just a game of trail n error to get the right dosage . I've not tried any other drugs , for the last 18 years I've just kept getting told there's nothing wrong with me , basically it's all in my head that I'm afraid to talk !! . Before now the longest I'd lost my voice was 7 months , so far this time is almost 15 months . Thankfully the specialist I'm presently seeing is fantastic and finally gave me a diagnosis it was a such I relief to have a name for my condition . I don't know the trigger this time I went to bed with a voice n work up silent , it's the same when it comes back one minute I'm silent n next it's back . I'd say give the BOTOX a try , on Thursday I met a guy who's been having the injections for 10 years , he just has it topped up every 5 months as the effect wears off .

Thank you for your message. I went to the hospital on Wednesday and they told me about the Botox. She said She would only deal with my right arm this visit on quite a minor dose of four injections to see how I reacted. The injections were fine, they didn't hurt and I wasn't bruised although the reaction to the drug hasn't kicked in yet. I will be given another appointment in three months and the dose will be increased to what she called average and I can give feedback on whether it helped or not.

They don't currently do the Botox in the throat but are in the process of considering it and I got the opinion they couldn't wait to get their hands on me.

I was actually quite impressed with this hospital visit as it was quiet, unhurried and explained in detail to me. She also said the injections could be three monthly or up to 6 monthly (this is for my arm).

I ought to mention my voice isn't as bad as yours as mine only fades away and comes back so I have' been silent for more than several words but it happens all the time and people don't hear me or don't understand what I am talking about.

I told the doctor my husband didn't bother to answer me and got cross with me. She then said are you having this done to please your husband. I had to laugh but actually it's more for me.

Take care

Hello you I also have spasmodic dysphonia glad to meet someone like me. My children , should have them adopted even though they are grown , say I often sound like Kermit the frog. If I smell anything weird I croak when I'm tired I croak let's face it the main part of the time I croak . But my doctor said I was special . I do not have Botox. I do vocal chords exercises which help taught by a speech therapist. She also gave me good advice such as no lactose no mints etc which helps. Sending you gentle supportive hugs good luck

Hi

My voice fades and croaks, as you say, every time I speak. People either don't hear me or don't understand me.

I was sent to a speech therapist. She gave me sounds to practice on three occasions then told me she couldn't help me anymore. I didn't find the exercises and sounds I had to make particularly helpful.

I went to the hospital on Wednesday and they told me about the Botox for my arm which was fine although it hasn't kicked in yet. Then when I go back in three months they will probably tell me about Botox in the throat which they don't currently offer but plan to do in the future.

Take care

I went to the speech therapist about 6 times and when she was sure I was ok she said to contact her if I had any problems. I have ,6, pages of excercisors to do one of them is blowing through a straw singing nursery rhymes a the same times makes me laugh. Sorry to hear you didn't have a very successful time good luck with the Botox

I saw a speech therapist , who got me to do breathing exercises , blowing through a straw into a half full bottle of water . Then she tried getting me to read a verse but still no sounds , I personally found it very frustrating and felt she didn't really believe me . I had BOTOX again 3 wks ago but still had no improvement as yet . It's the isolation that I find hard to deal with , not been able to make or answer phone calls . Not been heard if we go out .

I am going through this too. I have had generalized dystonia, including cervical dystonia for 25 years, and recently, spasmodic dysphonia. I am a teacher, and have spasms and choke when I read aloud to my kids and sing. It is worse when I am tired or stressed. My regular doctor wants to treat me for anxiety and depression, but those meds disturb my sleep which make my dystonia worse. My movement disorders Nuero want me to have DBS (which he says won’t help my voice) I do not want. My voice problem only happens when I talk for a long time (teaching) and I can not get it to happen at the doctors office, which is very frustrating. I did have a voice doctor diagnose me with SD, but she and my neurologist don’t like each other, so they are both saying the other one is wrong. I do get Botox and take baclofen.

Just wanted you to know you are not alone.

Kim :)

I'm sorry your suffering too , it's so easy for Drs to decide that it's all down to stress , anxiety or depression. Personally I find the more people make fun n jokes at my expense my stress level rises . One specialist told me it was all in my head n I'm just afraid to talk , it will be 2 years in August since he recommended I see a psychologist and I'm still waiting to see one !!!!!.

Hidden
Hidden

Hello,

I was diagnosed in Oct 2018 after seeing various GPs who each had a different theory. One told me to cut down on caffeine and chocolate and that would help the tremors! Finally I saw a GP that referred me to Neorology.

I have Cervical Dystonia and fully understand the isolation that you feel as no one seems to understand what it's like to be me. When I say I have Dystonia and try to explain what it is I can see that they don't understand and the usual question is "Do you work?" and when I say yes the surprise on their faces always makes me smile.

I am new to Botox and have only had two sessions.

I have just found out about this site and it is good to read other comments and I can see I'm not alone and others have experienced similar situations.

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