Has anyone else lost their ability to speak? If so how and how long??

I started about 6 weeks ago I woke up and was unable to speak. I had a really bad day before from an episode that left my face distorted and my hands in a ball. That night I had a few more bad episodes and then to wake up the next morning to speech less. I got it back a few days later but it happened afew times more then on the 19th of this month I lost it for 2days then was able to speak a few words for two days and then after coming out of an episode it was gone again an I haven't gotten it back since then. I have any where from 2 to 10 episodes a day that leave me paralyzed for 20 mins up to 2 hours. I'm scarred am I going to get it back. Does anyone have any information. Thank you fof your help

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  • I lost my voice for 6 weeks! and sometimes it can just go even just after a cough!

  • Lady Pink,

    I too have had the symptoms you are describing... it can be very overwhelming at first. I have daily paralysis and loose my speech too; but let me tell you...it gets easier! :)

    My approach at the moment is to accept what is going on. This may sound way over simplified and almost impossible but the way I see it is at the moment that's all I can do whilst in an episode... The way we perceive is one thing we have control over.

    But how do we accept? That is still something I'm trying to work out!!

    I'm not sure if you've tried relaxation techniques, CBT or meditation whilst in an episode. This helps me just stay calm whilst it's happening. The more it has happened and the longer i've had to cope with it the easier it gets... I just tell my self "Its OK, I'm OK"

    Still... its a bloody inconvenience I'm sure you'll agree!

    Meanwhile in answer to your question will your speech come back? I'd say yes, but how long i don't know?? Mine comes and goes, a few years back it was gone for months then it gradually came back. Now its fine, i just can't speak now during paralysis.

    Things that I found to make it easier:

    Some of the experience can be quite fearful, vulnerable and embarrassing. So If you can write, would making cards whilst out of an episode help? Stuff like: "Yes", "No", "Water", "I'm OK" etc.... so that you remove the fear of not being able to communicate and being so vulnerable. Other approaches are blinking for yes or "hmmm-ing" if you can... Work something out that you feel comfortable with, with whoever you live with.

    Find a place in your house that you feel safe and IF possible get to that place to have your episode. Comfy Couch with cushions, less noise, reduced light, no intrusions etc... whatever makes YOU feel safe do it.

    I had a card on me too with instructions on it: "I cannot speak" - NOK phone Number..." . This was if it happened whilst i was out, if needed I could just give someone the card to explain what was happening. People tend to be very helpful and less bothered than you might think as soon as you can tell them what's going on (via card!). These little things may seem insignificant but to know that you are taking some control can be very empowering.

    How long have you been having this happen? 6 weeks or have you had symptoms longer?

    If this is all new to you it can be very scary, but whats the worst that can happen? Whatever does you'll learn to cope with it. This may sound like a platitude but it is true & does not diminish the struggle that you are facing.

    I wish you well and if you ever want to PM feel free :)

    Love & Happiness

    Matt :)

  • Yes, I have had this twice (the second episode literally this past week!) I understand it is very frustrating, and you may find this odd, but try humming. The muscles you sing with are different to the muscles you speak with. I was told this is functional and your muscles forget so they need reminding! Keep humming and hissing (like a snake) and the voice starts to come back! Think positively and it helps! Hope you feel better soon.

  • Hi, im sorry that you are having problems with your voice. i have had voice loss since february so I can sympathise with you. I had three cameras down the throat who all reckoned that i had vocal chord paralysis. Recently they have done the same but recorded the footage, and watched it in slo mo. It showed that the muscles that control the bones/tendons (?) that attach to the chords are paralyzed, and not the chords themselves. This sounds like a little thing, but has stopped me having unnecessary surgery as they now know it is neurological and surgery probably wouldn't help. As Matt said humming and hissing can help, along with yawning (and other relaxing non speech noises such as groans) and whistling...my family have learnt to react to whistles :)!

    I'm a teacher, so I use an app on my phone that I type into and it talks for me. it is really useful if your voice is bad, and saves shouting to create a whisper! Don't forget how much energy you use if straining a lot, as this can create a vicious circle... as I dont know about you, but tiredness always makes my voice worse. I reckon physical rest, as opposed to voice rest is the key. xxx

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