I've suffered from this distressing condition for almost...

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I've suffered from this distressing condition for almost 5 years. My doctor was useless and I ended up going private to have it diagnosed.

To make matters worse, my doctor told several people that I was a difficult person.

I have lost all my self confidence and no longer work. My husband resents the fact that I don't work and he still has to. This makes me feel very guilty.

I don't drive any more, as I find distances to difficult to judge, I'm just plain scared! If the sun is bright I find it more difficult.

Sometimes when I am being driven I get very dizzy because of the speed of the traffic. I don't know why this happens, it feels as if I am going to pass out every time.Irritates my husband :-(

The injections I have are the only thing that make this bearable, I feel like a freak.

[i:8f08e04352]This message was automatically imported from the original Patient Experience[/i:8f08e04352]

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7 Replies

  • Posted

    Hi I have Dystonia. Torticollis and writer cramp in right shoulder and arm, for last 4 yrs. Now my eyes close a fraction to long and also started to pull 'funny' faces. I too cannot judje distance any more and have had to give up driving, reading very difficult and writing to. As for sleeping impossible without medication as I shake even more when I lay down. What a %^&* awful condition this is.

    What helps you? Have you joined a support group?

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  • Posted

    hi to both of you, i started with hayfever three years ago, i believe its the tree pollen as last two years i am only having the symptoms from march to end of may. It is worse this year and i started early in january with tablets and allergy eye drops , now the symptoms i am suffering from is my eyes closing and not opening straight away, one being worse than the other. My doctor is hopeless, i have found all this out my self on internet, i saw a right up on Blepharospasm, and though im sure thats what i have now , as well as the hay fever. I have found out that hay fever medication drys your eyes out so i have stopped taking it , i just use artificle tears and am slowly reducing them and hopefully this will work . I have also started taking cod liver oil caps , one a day as we need the vitamin A, D , and fish oils omega 3 . I dont drive as much as it worries me and just talking the dog a walk can be hard work. I dont know if you are male or female, but another thing different for me this year is i have started the menopause which also causes dry eyes. Good luck to you both , hope one of you leaves a reply to say how your doing . 8)
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  • Posted

    I too have had blepharspasm for many years and it really is such an awful condition.

    Eventually, I had a myectomy on both eyes, I still needed Botox injections for about 2 years.

    But the good news is I haven't had any Botox for over a year and my eyes are finally a little better.

    Perhaps you need to go doen this route??

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  • Posted

    I really don't know how you are all coping with this awful condition but my husband has had it for about 5 years now.

    The Botox is not working like it did at first around his eyes. Another Hospital even tried Botox in eyelid (only did one incase his eye stayed open or stayed shut) but didn't help too much. Waiting appointment for it doing again.

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  • Posted

    Hi all....I feel so bad for all of you. My Dad was diagnosed with this condition about a year ago. This was after going through 2 years of hell and going to the eye doctor for dry eyes. (they actually didn't diagnose it!) Anyways...that's another story. But finally after he was diagnosed he finally had a ray of hope that the botox was going to be the answer for him and that he could finally get back to normal. Boy were we wrong!! He's had at least 4 rounds of injections and they haven't even help him at all. He's scheduled for another round next week but i'm thinking why bother. He's also getting very depressed because he can't do anything. I personally think he has panic attacks. I've read that stress will make this condition worse. He refuses to wear sun glasses!! And I also read that caffeine is not good for this condition either. Has anyone heard that?? Of course he constantly has a cup of coffee in his hand!! Does anyone have any suggestions!! HELP!!
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  • Posted

    [quote:4d8e32a7de=\"Pinkbunny \"]I too have had blepharspasm for many years and it really is such an awful condition.

    Eventually, I had a myectomy on both eyes, I still needed Botox injections for about 2 years.

    But the good news is I haven't had any Botox for over a year and my eyes are finally a little better.

    Perhaps you need to go doen this route??[/quote:4d8e32a7de]

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  • Posted

    hi pinkbunny just read your comment on myectomy for blepharospasm i have not heard of this and wondered what it entailed. I have had the condition for 5years and haveing botox injections above eyes and in the muscle of lower inner cheek as my nose starts to nip in. hoping to hear from you ann c.
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