community for people with voice problems started by The Lary Project
I'm Karen - i have been silent since december 2010 - previously my speech would bcome back after a couple of months - (this has been happening off and on for the last 10 years) - but this time its been gone for ages!!!!!
I have a neurologist looking after me - the speech therapy doesn't help, because the problem is not in my voice box - it's in my brain somewhere??? but i try and keep positive - i can hear and understand everything fine - just can't say or mouth words ! So that is only a small set back really, compared to some!
I do get mistaken for someone who is deaf too alot - so i made up some flash cards in a credit card holder that i can show people - "I have a neurolgical problem, can't speak but can hear you fine" - "please may i have ...." and "thank you" etc
Luuuurve my iphone - because i can type notes to people and have text to voice software on there too!
found a free app that lets me doodle or write notes by hand on the screen - thats great for quick responces.
I do get fustrated, feel isolated and sometime just think Why me? - but at the end of the day - i have to just get on with it - i work around problems until i find a way through them .
I smile politely at the lady who, at a drinks party recently, when she realised i couldnt speak said "oh right" and turned away to talk to someone else like i had the plague - whenever i see her in the village - i'm sure she thinks i'm bonkers - but i'm not going to act as rudely to her, as she did to me - i've lost my speech not my manners!!!
My work has changed somewhat - i am a freelance interior architect - and now i mainly work from home producing CAD drawings for others - One or two of my retail clients still keep in touch - but i cant wander around a property with the same "voicing design suggestions outloud" as we walk - it takes so much longer when you have to write it all down - that has hit my confidence and my income - if i could change anything - it would be so i can do that again - i miss that exciting banter about which wall can come down and how great it will all look - yes - that really is something i miss greatly.
but anyway - enough about me - i'm going to have a coffee, do some work and i'll be back to have a look at this website again later !
Hi karen, Welcome to the network and thanks for posting. I hope you find support here. Things a bit quiet at the moment partly because I moderator the network and am heinously busy with the day job at the mo!
I was wondering about the cause of your voice problem. Is it a psychogenic voice problem? http://voiceproblemsupport.com/forum/topics/voice-problems-with?com...
Or is there a neurological problem? We have people with both kinds of voice problems on here so they might be good to contact.
We hope to run more support groups soon. If you are available and interested, you might like to attend.... let me know if you would.
Hi Karen! Welcome to the website and it is very interesting to hear your story!! Hope you don't mind me asking a few questions but your story has fascinated me! When it first happened and you first lost your voice, how did it come about? Just suddenly or did something happen to cause it? How did they diagnose it as a neurological issue?
I have been voiceless since November 2010. It started off as laryngitis and it has never returned, I can speak in a slight whisper though, which is an environment with any other noise around is very difficult to hear. There isn't anything physically wrong with my voice and so they believe because of the extreme stress I have been under both when it started and ever since (life become a lot more difficult!!! and I have had a lot of other issues along-side it) that my body has "shut itself down" which is why my voice won't come back... That doesn't really help me though as it means there isn't any easy way to get it back!!
Anyway, sorry I got a bit sidetracked there! Welcome to the community and its great to hear from you!
Hi Becky- sorry to hear you have had such problems .....
i had just had viral meningitus and my husband took me to the canary islands to recover - it was the penultimate day - when my voice just stopped - we were having an argument at the time - i knew what i wanted to say - but couldnt work out how to make the sound - how to position my mouth /tongue/etc i was taken to hospital because the local doc wanted to make sure i would be safe to fly home - they discovered i was pregnant (shock - had to have fertility treatment to have my elder daughter!! - was told i was infertile!!) the hospital staff wouldnt let me leave until i had said a word - managed CAT after about 6 hours - so they let me go - my speech came back after a few weeks - suffered headaches and it coming and going ever since really - this last time had a hideous headache on the evening of 12th Dec - my hubby spotted something was wrong and spoke to me (i dont really remember this bit) he asked if i could speak and i said yes - then when he asked again i couldnt answer - he put me to bed - i woke up feeling fine but just couldnt speak again - i have seen various docs over the years - some quacks too - the quacks cant see anything wrong and the docs pass me around - they decided it was neurological this summer - they have never bothered too much about diagnosis before -- because, although inconvienent, it usually came back within a couple of months ! currently have a neurologist who has sent me for MRI, which is good, because i had one back in 2006 when my speech had come back -so they will beable to compare that one with this new "silent"one still havent got the results of that yet ! Just want to get back to normal !!!!!!! sometimes i wonder if i create a fuss - they might act a little quicker - so might try that - you would have thought they would have discovered what is causing it by now ,this has been going on for over 10 years !!!!!!!
its good to have somewhere to talk to others with similar problems !!!!
It sounds like it could be a psychogenic voice problem (see the link in my message above). Have you ever been to a specialised voice clinc on the NHS? You can find your nearest one here:
If you want to see one, I would suggest calling or someone calling on your behalf and asking who the voice specialised consultant is, who runs the voice clinic? Then go to your GP and ask for a referral to this specific person. If they poo-poo you, let me know! They absolutely shouldn't but unfortunately many GPs are not aware of the existence of specialised voice clinics within ENT departments.
Once you have had your larynx scoped, a laryngologist (a voice specialised consultant) should be able to say if it looks like a psychogenic voice problem. If it is, talking treatment (counselling basically) can resolve psychogenic voice problems in some cases, particularly when working with a trained psychologist or speech and language therapist in this area....
Where are you based?
Please let us know how you get on...
I have been seen by a speech therapist and she said the problem wasnt with my voice - it was the brain to voice area that didnt seem to be functioning - i cant put my mouth or breathing right to make the sounds required to make a word - i can "say" ha - but it is more the sound i make when i breath out - which is why i put "say" in inverted commas - it's not really speech at all ! -
I have had head MRI and Artery scans in my neck- been assessd by a psychiatrist who said i was of sound mind (- my meeting with him was - by the time it came through - at a time i could speak - we had a good chat -) my GP initally thought it was stress - but finally arranged an appointment with the neurologist Aug 2nd - he said that it seemed to be a complicated problem - and that it might be difficult to fix - (not to get my hopes up i guess) possibly some damage that occured when i lost memory and speech at the same time a few years ago - (which is odd because it had happend several times before then too)
My nearest centre would be an hour away in southamption, according to your link, i can email my GP to ask if this is somewhere i could go for their opinion...
will let you know how i get on !
Thanks for the suggestion,